Sharp Blue: Labyrinthitis comments, page 12

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Hey Niki

I don't think you're going crazy. Whilst I haven't experienced exactly what you describe, I have had a few bouts of hysteria with this. Uncontrollable laughter even though I'm not finding anything funny. I have also experienced extreme anxiety symptoms and depression with uncontrobllable crying. The shaking, heart racing, palpitations and feeling like you want to die - it is the worst feeling ever and for me I could do nothing to stop it. I just had to let this fear course through my body!

I think that because labs is linked to the vestibular system it can cause all these weird reactions. They are kind of like neurological symptoms and so scary. They seem to come and go with no rhyme or reason and freak you out. This is the reason I can never relax with this thing because you never know what is coming next.

I dont know if I will ever fully recover from this. On a psychological level it has totally messed up my head and on a physical level the dizziness is awful and very disconcerting to live with. I do believe and keep reminding myself that it will improve with time though and I keep trying to take each day as it comes.

Take care xx

Niki,

I have felt exactly the way you felt on many occasions. Especially when I would watch TV. All of a sudden I would feel breathless and anxiety would slam me. Then I would feel hyper and almost manic. I swear I thought I was going nuts. It doesn't happen anymore. As soon as I hit the 6 month mark of this dreaded virus, I started to turn a corner to healing. I now have so few "moments".

Gloria, have you had a chance to google cervical vertigo? It really sounds like you may have something in your neck, like a disc that could be pressing on nerves, causing some of your symptoms. Like the headaches and the stiffness and soreness in your neck and shoulders. Really push for an MRI and then push for physical therapy. It changed my life.

Good luck to all! Have a nice weekend. Keep the faith. This too shall pass!! Melissa


I need some reasurance that this is going to get better.... how is everyone feeling? I feel like crap right now! these past few days have been horrible, im way more off balance and i feel like im floating away. When did these symptoms get better for you guys? when i walk i feel like everything moves up and down. when i stand i feel like the floor is sinking. when im in bed i feel like im floating. i thought it was getting better but these past 3 days have been worse. Everyone plz tell me if you had or have these symptoms and in what month did it get more tolerable. Im in month 3.5 and am scared to death!

Claudia,

I PROMISE you that you will start to feel better, BUT you need to do something about it. I found that within a month of vestibular rehab therapy, I had 2 days normal. Then the second month of vestibular rehab therapy I had 6 days symptom free. I am on my 6th month of this dreaded virus. I now am in VRT once a week and my symptoms, if any, are always minor and I can live right through them.

YES, I felt exactly as you did. When I would sit, I felt like I was on a rocking boat. When I would stand I felt like I was falling backwards. When I walked it felt like the ground was moving under me. All very scary stuff.

You will get better, but you do need to start tricking your brain to compensate. Look into vestibular rehab therapy.

Keep your chin up and really believe you will get better.

Melissa


Claudia - everyone is different and i think everyone feels slightly different with the symptoms they get with labs. I totally sympathise with you, I have moments of hope where I think I am improving then it gets worse. It is such a long process, you have to start looking at the overall picture and now I am at 7.5 months and although I am not right, I have seen overall improvement with many many set backs along the way. This illness is so different because you don't keep improving, there are times when you get worse and honestly I have literally been so scared sometimes I have just cried out in despair. I have lain in bed wishing I was dead and at times I have seriously thought about ending it all.

All you can do is just keep surviving through each day and keep putting one foot in front of the other. Just keep strong and remember that if you do have labs, then everyone on all these forums who has had it sees improvement, many recover fully and those that dont reach a point of acceptance and learn to live with the symptoms they have which are a lot milder.

3.5 months is not that long in the course of labs, I know it seems a long time compared to other illnesses but if you look on sites like wikipedia it says that dizziness and disequilibrium can last for months or years after labs. What things can you do? do you work at all? go for walks or socialise? Test yourself and see what you can and cant manage. Social situations and busy places are a nightmare for me although I am coping with other things a lot better. I do often feel very off balance sitting upright on a chair and I hate that. Have you had any vestibular testing? if not why not ask your ENT for that.

I am sure you will see improvement.

Take care xx


Thanks for the responses everyone. It's super comforting because I always associated anxiety with feeling "down" so those "upper" anxiety moments were unexpected and even MORE scary.

And we know that fear only makes those moments 10x worse, and make them last longer.

I think about that you all have posted when I'm in those moments, and remind myself that it's fine, people get through it, and that I'm alright!

Thank you!


Hi Jemma,

I am so proud of you!!!

Your post to Claudia is spot on and everything you are saying is so true.

Don't like the bit where you mention ending it all but can fully sympathise with that - that scares me to think that you did think like that. But, when you first arrived on this site you yourself were a wreck and look at you now - you are giving sound advise to others and know loads about your condition. At first you were asking the same questions over and over and I could tell by your posts that you were so scared of what was happening and here you are now saying that overall things are getting better for you and you are looking at things more positively - good on you!

X Factor - Joe walked it again I'm afraid, can't wait for tonight to see who's being kicked out - got a feeling it might be Olly but will be sad to see anyone go.

Gloria - how are things going for you?

Sandie xx


Hi, The past 4 weeks I haven't had any dizziness or brain fog! There is one symptom that hasn't gone away, and that is the middle/inner ear full/puffiness feeling. Several weeks ago it went from mild to this throbbing, aching feeling.It feels like it is around the eustachian tube. Have any of your doctors given any clues as to what causes inner ear irritation? Is it indeed a virus, bacteria or maybe fungus?. It just seems like 12+ weeks is a long time to have a virus infection. Overall I would say I am 90-95% operational. Stay strong! Andy


Sandie - thanks for your post. Yes you are right in the last month or so I have been trying to be more positive. In July/August I thought I might be improving and then in September and October things went worse and I got all these middle ear symptoms which made my dizziness worse and I felt like I was going backwards. Coupled with not getting a diagnosis from the doctors it really scared me and I still am scared about the future but if I can believe this is labs and not something else and that I will improve with time and not get worse then i can deal with it.

I still want the doctors to confirm this is an inner ear problem. From my own research and symptoms and coming on here I cannot see what else it can be, believe me I have spent 7.5 months racking my brains to work it out. I can only think it is labs and if that is the case then I dont have a choice but to come to terms with it and hope it improves. I honestly did think about ending it but I did not have the guts. I never want to sink that low again but this thing has taught me that you never know what life will throw at you.

Gloria - how did your weekend party go? I want Joe to win on x factor now too, think he will. Not sure about strictly but i am starting to think chris and olla might do it!

Jemma x


Im finally seeing the light at the end of the tunnel, I had my first 2 days being virtually symptom free in 12 months, I even went out to my works christmas party and had one to many and although I was hungover my balance felt good. I know Im still not 100% in the clear but it feels so good to finally realize that I will be normal again, all I can say is keep moving, do as much as you can as often as you can, this is what has got me through this mess..

DC

Hi everyone,

Again - have just written tons & touched the mouse & it has all disappeared!!! So, start again.

Thanks Jemma/Sandie for asking after my week-end. I managed it - enjoyed it but yesterday & today feel horrendous! Saturday, our neighbours asked us in for a drink & mince pie for Christmas. After and hour and half, we had to leave to get ready for the party. This was all OK. Despite the odd feelings in my head, I think I did OK - especially at the noisy restaurant. So today feel as if I have gone back a few weeks again & feel horrendous, but it has to be worth it - no alcohol though. Just couldn't face it. Great DC you enjoyed your Christmas party & have seen a bit of light after so long.

Melissa - great to put a face to a name - lovely photo. I did google cervical vertigo. I had an MRI done on my neck back in August & the consultant did not think there was anything there to cause dizziness. There is a bit of wear & tear, but nothing sinnister. It was my physio the other week who said that my C2 had a bit of movement in it. So when I go back to the neurologist next week, I'll ask his opinion. It really is chicken & egg stuff. My neck has got stiff, I think as a result of doing the VRT - so what do you do?!

Jemma - can so empathise with you and about you have felt at times. It really gets you down this thing. For me, this week marks 6 months exactly with labs!! Should I celebrate?!!!! You are right though - even though I feel rough - I couldn't do what I have done over the last couple of weeks at the beginning of all this. So, it must be some sort of progress I suppose.

Sandie - think you are right about Joe. He has to win X factor. I am glad Olly got through even though I admit his singing over the last couple of weeks have not been so hot. Strictly, Jemma - I agree - think Chris & Ola could do well. Anyway, tomorrow I have to go and do some more Christmas shopping, but my heart is not really in it. I have asked Santa for a new head!!!!!

Lovely to read all your posts.

Love & hugs, Gloria xx


Gloria, Thank you for the compliment. I too just passed my 6 month mark with this BS. Had a rough weekend. I haven't felt that dizzy in some time. It was that "time" of the month though. It also snowed here and was very wet. I think the barometric pressure is brutal for Labs.

My orthopedist said the same thing about my neck not causing me any symptoms of dizziness. I for one can tell you that since the physical therapist started working on my neck I have actually had normal days and many in a row. Go figure... Push for physical therapy. Try it, it may just work!

Melissa

Hi folks,

I'm in for balance testing tomorrow. Will be getting the ENG, caloric test, tympanogram and a normal hearing test done. For those who have had it done before, is there anything I should look out for or ask?

Thanks.

Gary.


Has anyone out there gotten a cold and had all their symptoms come back? I am fighting a cold. Sneezing, runny nose. Then all of a sudden all the dizzy off balance and generally ill feelings came back. Just wondering if anyone has had this experience too?

Thanks Melissa


Hi all

Gloria - hope its not another £650 for your neurology apt! Glad you enjoyed your weekend meal and got through it. I find it really hard sitting and talking to people as I feel so off balance, do you feel the same? I try to avoid it which means I dont interact with people like i want to.

DC - glad you have had some symptom free days. Have you had any balance tests and been diagnosed with labs?

Gary - I dont think there is any advice for the tests really, just go along and dont worry they arent too bad and you should get the results straight away. Are you going private?

Melissa - luckily I havent had a cold yet since getting this but I do believe from reading other peoples posts and that Labs website that a cold can make the dizziness worse for some people so hopefully it will improve for you when the cold goes.

I am exhausted today and was ysterday too. I think that trying to work through this is really tiring me out. I need a few weeks(years!) off! Is anyone else working or planning to return to work in the new year. I am still doing 6 hours a day and just cant face increasing that at the moment.

Keep posting everyone x

Hi Jemma,

Thanks for that, yes going private, 350 and no waiting around. It's either that or give a useless ENT 300 and wait 4-6 weeks so it's a no brainer really.

Melissa, Jemma is right, colds and illness make the symptoms worse but you should go back to how you were before the cold when it clears up.

Gloria, Sandie, how are you keeping?

Gary.


Jemma, I never had any balance tests done, 2 different doctors both diagnosed me with Labyrinthitis, I was advised from the start that it would take some time to get to 100% again, but gradually I have made improvements to the point where I feel Im nearly there..


Hi, I was looking up ear throbbing on Google and came across this forum http://www.healthboards.com/boards/archive/index.php/t-106402.html. The posters are discussing TMJ and how it affects them. Seems TMJ sufferers can have symptoms that are very similar to LABS/VN. Just something else to consider.

The swelling/puffy/full feeling in my ears has went into overdrive the past couple days. So more internet searching before I see another doctor.

Best of health, Andy

Hi all,

Gary - good to hear from you. You must let us know how you got on with your tests. Have you been fairly stable recently or any major setbacks. Also, how did your evening out go. When I was sitting in the noisy restaurant last Saturday, I did think of you & want to know how you faired.

Went to my physio (normal not vestibular) yesterday. She says my C2 vertebrae is much more stable after doing some exercises & my neck & shoulders much improved - which they are thank goodness. I did ask her if she felt my neck was the problem & she said no, although tight muscles don't help. I feel a bit more relieved knowing that these are more secondary issues than the real cause. She also said that the movement in the C2 was minimal anyway. Why she didn't say that at first I'll never know!

Andy - my ears are still popping & cracking 6 months down the line & after the ENT consultant said the pressure had equalised. Mine also, like yours is better some days than others. I went down the TMJ route. Went to see my dentist who felt my jaw etc. but said I didn't have TMJ. However, he gave me a soft rubber denture thing to wear at night on my lower teeth to help with some minor grinding that I did have. I must admit not to having worn it recently, but wore it for a few weeks. Helped with the grinding but not any of the other labs symptoms, but worth trying.

Poor Melissa - hope you feel a bit better today. I really hope I don't get a cold. Not sure how I would cope with another thing! Having gone into town a couple of times through necessity to do some Christmas shopping - how do you avoid these things. If I hear someone cough or sneeze I do walk away from that area quickly. How mad?!!!

Jemma - did you get your Christmas tree last week-end? Like you, I am not symptom free yet. The mornings when I get up are the worst for me. Typing this I am so swimmy headed. I seem to feel a bit better in the early evening for a couple of hours then just before I go to bed I feel woozy again. Whether watching the tv stabilizes you a bit, I don't know. Whilst I felt rotten after the week-end for a couple of days, I am thinking the brain needs to get used to all these types of situations again. You are right, trying to turn my head and converse with people is so difficult. I made sure, at the restaurant I sat between my hubby and my cousin who understand if I sit back and am quiet. So with gritted teeth (not so gritted to cause more teeth grinding!!!) onwards & upwards. Today is my husband Andy's actual birthday. We are going over to his mum's for dinner with his sister & family. Won't be as noisy as the week-end though!!

Keep fighting this thing & Melissa your mantra - this too will pass!

hugs, Gloria xx


Hi Melissa

It is normal for your symptoms to return every time you catch a cold/flu, virus etc. However, I did have a cold one time and didn't get any symptoms at all! I suffer from post nasal drip and have allergies and of course everything is connected to the ears so that is why I think I am not getting a full recovery from this condition.

Jemma, please keep interacting with people even if you feel c***. This is what happened with me and I started to avoid everyone and it's amazing how many people just don't bother with you after a while. I think they take it personally! I still have a lots of good friends and family but I have lost a good few as well.

Gary, I'm ok, a lot better than I was a few months ago. Just waiting fo the next relapse - lol. At the minute though I am not really hindered too much. Went shopping in town yesterday and was basically ok. Had to take my son to the opticians and was waiting while he had his tests done and then when I went to stand up when he came out I felt real bad. I went to lean on one of the mirrors and it passed quite quickly so all in all it went well. How did your tests go?

Andy, those healthboards are really good I was a regular on there but don't visit so much now!

Gloria - yes you do get a bit like that - walking away from people if they so much as sniffle! As you know I did work until recently and it used to drive me mad when my colleagues came to work dying on their feet - it is so not good for people like us! And, customers coughing all over you!

Happy birthday to your hubby!

Lasy year on my birthday (just before christmas) I was feeling really good and still working etc. We went to a chinese restaurant and I lasted all of 10 minutes. I felt so ill and it came from nowhere - so it was back home for me. Went to work next morning as right as rain and continued until mid - Jan when I had my last major relapse.

Well, my tree is beautiful, I got a black one this year, pre lit, gorgeous. I've never really fancied a real one (too much like hard work!).

Take care everyone

Sandie xx


Thank you all for your comments. They mean so much to me. I just hate that you can never let your guard down with this. Just when I went a few weeks free of symptoms or symptoms that would pass fast, I get slammed again! I hate that I can't just get on with my life. I am constantly checking how I feel in all situations. Does anyone ever forget that they have this, for even one minute? Six months and I don't even know what normal is anymore. Sorry if I sound down, but this is getting to me! My normal is to feel off balance all the time. When will this pass? Why don't these doctors have answers? God I am really mad now. I too avoid all people who are sick. Unfortunately, I have two small kids at home that are germ carriers! LOL Thanks for listening to me rant.

This too shall pass...God I really pray. Melissa


Hi everyone

Andy - did think about TMJ as my teeth hurt a bit at one point but not really now so i feel labs is more likely for me.

Gloria - i did get my tree (real one, boyfriend did the work) on saturday which wasnt a bad day overall, i went to the cinema too. I know what you mean about gritted teeth and sitting quietly when with people. Although I am trying to take Sandie's advice and keep talking to people if i can otherwise i wont know even if i do feel better. It is so hard sometimes though and avoidance is the easy option.

Melissa - i am just the same, my best is off balance all the time and my worst is dizzy and totally exhaused. And just like you I cant forget this and am always checking myself and so conscious of how i feel ALL the time. Sometimes you just need a break dont you - its like i want a holiday in someone else's body please!!! I have had the odd few seconds when i have totally forgotten it and it is heaven but very quickly reality all comes flooding back. I cant imagine my life without it now.

Last xmas i had flu and couldnt do anything but i promised myself i would make up for it this year. So much for that!

Another new quote for everyone from one of my favourite movies, The Sound of Music:

"When the Lord closes a door, somewhere he opens a window".

Not that I am religious really but god there has to be some reason for our suffering and hopefully in the end something positive to come out of it.

Keep believing xx


I am still amazed at how some of you are able to work with having labs. I'm just happy being able to keep up dinner and laundry. It feels like such a big accomplishment attending a Christmas function and being able to enjoy it. I really need to watch my limit not overdo it. The only way I've measured my progress is to compare with how I felt a month ago. I must say that my vertigo has improved, my ears hurt less, feel full or pop. So that leaves me with fatigue, acheyness, nausea, and some vertigo. My eyes also get so tired focusing in big settings. I still would prefer to stay home from social gatherings but feel I must show my face and not be a hermit. I hate having to be treated like fragile china. I keep reading in some posts how some of you push yourself to go for walks and exercise. I find that just makes my symptoms worse. My healing happens with lots and lots of rest, although I try doing some yoga stretches whenever I can. By the way, my eight month mark is coming around soon. Thanks for listening to my thoughts.


Another bad day....have to get this off my chest, before I read back and respond to everyone else..so I may double post.

I'm crying as I write this. This board has been my only comfort for the past few weeks...first lurking, then reading. Aside from it I am trapped in my confounding mind...wrecked with anxiety, depression and madness.

My labs is still undiagnosed though. What do you all think? This started with the flu, and coughing up crap out of my lungs...then weeks later I had a panic attack. Then I developed a stiff neck, vertigo, mild nausea, lightheadedness and lingering anxiety (all over the course of about a month). Sometimes I have feelings of pinching and aching in my arm, neck, and shoulder (mostly on the left side). Strangely, I also have a chronic thumping in my ear I can ONLY hear when I have a headphone playing music in the opposite ear! O_o I'm scared that this isn't labs but something worse (brain tumor?)I'm scared that if this is labs that it will last for years. I'm scared this will last forever. I doubt my ability to make it through the week!

Sorry to rant and dump this on everyone. I literally have no other sympathetic ear. I've been called needy so many times. My sister scoffed the other day what I'd do if I was ever homeless or "really suffering." Even as a young woman I'd rather be homeless and in the right mind, then warm, safe, and THIS.

In a lot of mental anguish. Maybe because it's due to rain tomorrow. Everyone has agreed this is worse when it rains right?

Hi all,

Niki - I am so sorry you are feeling so rubbish at the moment. This labs thing is the MOST scariest thing I think I have ever heard of let alone suffered from. All the stages that it presents are most strange & weird to the point that you think it has to be something else and it is so so scary. Mine, like yours started with the nasiest chest infection & stomach sickness I have ever had. My chest was awful. I don't & have never smoked, but it sounded as if I had been on 100 cigarettes a day! With this of course came all the symptoms we have discussed. Off balance, dizzy, nausea like no tomorrow, stiffness in neck shoulders, back, blurred but not blurred (if that makes sense) vision to the point where I had to get new glasses. Everything seemed to 'move' or shudder. Couldn't watch television or bear bright lights, couldn't read and felt panicky as if I had an electric impulse shoot through me all the time. My head feels as if it weighs 100lb and like there is a tight band around it. Headaches - too many I've lost count. Then there was the tingling in my arms & hands and feet and horrendous noises in my ears as well as fullness and ear-ache in my ears all the time. I could go on... DC who has posted on here said they could write at least a couple of pages of symptoms with this. Not everyone has all of these - it is such an individual thing but they all bear the same hallmark of labs. Niki - you may have said in a previous post - but have you seen a doctor or had any tests done to confirm labs? Also, whilst it is horrible but don't feel ashamed or afraid to cry your heart out. We've all done it on here so many times. Even now that I know what I've got - I still cry buckets. It's the not feeling normal, can't do all the things I used to, hating waking up to the same dizzy, odd feelings every day and not knowing how long I am going to feel like this. I am so not the person I used to be and even though I get up and function basically each day - I want to be and do so much more WITHOUT having to think about it or feel so odd. The progress of this is slow, slow slow, but if I look back over the last few weeks & months there is an improvement. I suppose when we are ill normally , we feel horrible for a few days or even weeks, then feel better and regain strength, but with this every day there is some sort of symptom to deal with which will gradually fade and the feeling good starts to outweigh the feeling bad. As the old old saying goes: Time is a healer. Anyway, Niki, I don't know where you are based, but I send a huge big hug to you.

Big hugs (to everyone of course) but also to Melissa. You sound down as well. I was feeling really down and depressed with this last week. Crying loads and just found it difficult to cope. Bit better this week, maybe because I have had to be as it was my hubby's birthday (thanks Sandie for your good wishes) and I really try and put on a brave face in front of him. It also must be tough when you have 2 young children to cope with - are they pre-school?

Susanne - great to hear from you. So glad some of your symptoms are improving. Like you I have never felt so achey in all my muscles - especially my neck, back & shoulders just like when you have flu except it is there all the time. The tiredness - I only have to go to the shops & I feel I could sleep for a week afterwards. I've had quite a few social events this week & coming up to Christmas - this will be such a test. I am going to do my best though as I've said before, I think the brain needs different situations to keep challenging it in order to heal. Susanne - I did ask before & hope you don't mind me asking, but do you live near Vancouver? I know you said West Canada.

Sandie - a black Christmas tree?!! Now that is new!! Something I have been meaning to ask you - as a veteran of this now - how has this year compared to last year Sandie? I remember you managed to go and Christmas shop for quite a few hours last year but with taking Stugeron. Have you coped without that recently?

Jemma - have you managed all your Christmas presents yet? I did a couple of hours on Tuesday, but that was enough. Will have to go back into town again next week to finish off. My presents aren't my usual I'm afraid as I cannot browse for any length of time. So it is a small token present and gift vouchers. A bit of a cop out, but know people understand.

Anyway, enough of me - loads of love to you all. Keep posting - wild rants or otherwise. This site has kept me from going completely loopy.

Gloriaxx


Susanne - you are at the same point as me, approaching 8 months! Feels like a lifetime doesnt it! I dont have too much aching with this but the fatigue is awful, it does go away but when it hits it's like the worst kind of tiredness and drowsiness where you just want to lie down and rest for ages. I did think ME/Chronic fatigue at one point but with that the tiredness is pretty much all the time and you need to sleep a lot too (which I dont, its just resting really). Also with that you dont feel off balance like with labs. Did you have your balance tests?

I feel like when I do a few things I then need to sit still and stabilise my head and let my brain adjust, so weird! Also like you I understand the vision thing. Its so hard to describe isnt it but it is a lot easier to focus on one thing close to you rather than look out at lots of things. When you tell doctors this they dont understand because its not like there is anything wrong with your eyesight as such. It is such a bizarre condition.

Gloria - yes got my presents sorted. All bought online I might add. I order lots online and it is the best way to avoid the shops and also spend time with my laptop on the sofa in the evening choosing things. Shopping/browsing with labs is a nightmare.

Niki - you sound really scared. I have been there and I understand totally. It is sooo awful this thing and not knowing if or when it will ever end. If you feel off balance a lot of the time then I cant see what else it can be but labs because all your symptoms seem to fit. I have been through the same thing and no doctors will diagnose me but I know 100% there is something wrong with me and from all my reasearch I just do not see what else it can be but labs/inner ear disorder. Just keep trying to get through each day and dont have any expectations of how you will feel, take each day as it comes and each new symptom as part of the process to getting better. I always tried to tell myself that a change is a sign that this is not just going to stay the same forever and therefore it can go away.

Take care xx


Hi melissa

Yes, you do actually forget that you have this condition but it happens as time goes on. Since I stopped working I am definitely in a better place with this and I am now thinking that the constant effort of going into work and the stress of it all made me that much worse. I am not saying I am recovered, because I am not but I do get good times now! And, I do actually forget now and again that I have it!

Last christmas for me was a bit of an effort. My sister and her family were home for christmas (they live down south) and my niece was 5 years old then and very excitable. She had a toy guitar thing and the noise off that and her incessant chatter sent me reeling and I had to take time out for a while and sit upstairs and eventually had to go home (we were all at my Dad's house). That really upset me because I absolutely adore her and don't see them too often. But, the thing is I still keep trying to get on with things and that is basically all you can do.

Susanne it is better and the recovery period is supposedly shorter (not for me though!) if you do challenge this thing. I swear by loads of walking (always with someone when I am real bad) and it is not just the challenge to the brain it is the feeling of accomplishing something afterwards that helps a lot.

Nikki, most of us don't get much joy when trying to get a definite diagnosis for this. Try not to worry about this too much. Your symptoms sound typical of Labs - we have all had the worry of brain tumours etc and that is an awful thing to go through but here I am - nearly 5 years for me - no brain tumour! I used to get a thumping in my ears which mainly affected me when trying to sleep and I don't know how many times I would jump out of bed and go into my son's/daughter's rooms to tell them to turn their bloody music off to find them sleeping quietly!! That used to really bug me but it is quite rare that it happens now. Nikki, that is so awful what your sister said to you, but try not to be too hard on her, this is a very hard condition for people to understand because you probably look ok. Try not to blame yourself because none of this is your fault - you are not a nervous wreck because of anything you have done or experienced, it is actually controlled by your inner ear and when you start getting less symptoms and your brain starts to readjust then the anxiety and depression will fade away. It is basically just a waiting game and things will get better for you. And by the way, your Labs started after you had flu which is very typical.

Gloria - I only take the stugeron when I need to be in busy places like the city centre and have to cope with the bigger, busier shops and I swear it does work for me. I never take it any other time and when I do my weekly shop in Asda I don't bother with it. I do have 'moments' in there when I wish I wasn't in there but I tend to perservere with it as I know I'm only in there for an hour or so! A little tip for those of you who just can't manage shopping or anything just yet, when I started to feel better in the early days my husband would let me go into the supermarket on my own and just wait in the car for me then as soon as I couldn't cope any more I would ring him, hang onto the trolley, and he would come and rescue me! Also, I know it sounds cruel, but when we used to go for walks he would make me walk on my own instead of leaning on him, and this did help me gain my confidence outside again as I had terrible problems with my balance.

Gloria - making a comparison between this year and last year - pretty much the same. This year my relapse came in January and lasted over 6 months before I started to feel much better. But, my first encounters with this were definitely the worst, that was the time when I suffered anxiety, lost a lot of weight and thought I was about to die. I am a lot more forthcoming with my condition and do tell people outright if I am somewhere and I am not feeling good and I think that it helps a lot.

Anyway, got a million christmas cards to start writing today ( I do my Dad's as well) so better get started on that. That's enough to send anyone dizzy!

Take care everyone

Sandie xx


Niki, Gloria and Sandie said it all! Also, Gloria thank you for your kind words and encouragement. It gets me mad now that I can feel fine for weeks and then bam! I get slammed with symptoms again.

Niki, I felt EXACTLY the way you described how you feel. I cried all the time, I made promises to God if he would only heal me. I convinced myself that it was a brain tumor. After all, how could anything make me feel so bad?! After a CAT scan and an MRI I know it is not a brain tumor. The anxiety wrecked me. I had to take Zoloft and Xanax for the panic attacks that took over my life. I never, ever had a panic attack before this. Most of the people in my life had no idea how to help me. It WAS awful! After much determination and time I now feel much better. No more anxiety or panic. I can function. I go to the gym everyday for an hour. I work three hours a day. I have two kids, ten and seven years old. I find now that dinner time is my hardest. So hard to cook and clean up and help my kids with homework when I feel so tired and off balance.

Gloria, my head feels like it weighs 100 pounds too sometimes.

Thank God for this blog! I have been able to do all my Christmas shopping in the stores! I think sometimes I have to concentrate on the positives that have come out of this. It is easy to sit around and feel sorry for myself. I just hope that 2010 brings us all peace from this monster.

Melissa


Hi everyone: Gosh, some of you are really getting this full blast. Nikki, I went through exactly the same as you 2 years ago. Depressed, panic attacks, so awful, I couldn't figure out what was wrong with me. Cried all the time. Try to be optimistic. It will get better. I have to say that for me the first year was hell. Up and down like a yo=yo, but the second year was better, and I am now into my third year, and have been feeling normal since September. But I feel for you, I know exactly what you are going through. You are not alone. Remember, you are not really sick. You just have a balance disorder. It will improve. you will have your life back, just be patient.

Claudia, this illness is very hard, because it just won't go away, and when it does it usually comes back. The first episode, and the first six months was just plain awful. If your ear or nerve is damaged it will take a long time,but you will see improvements bit by bit. There are lots of ups and downs with this disorder.

Sandie, a black Xmas tree? How interesting! Does everyone get cheered up when they come to your house? Sounds like you have been more or less stable.

Gary, don't know if you have had your tests yet, but if you haven't, really pay attention to how dizzy you get during the caloric tests. Because if you don't get dizzy, or less dizzy in one ear than the other, it means there is a problem. I know people who have felt a difference, and the doc said the test showed no difference. If you fall within the normal range, you could still have a problem.

One of my best friends went to work the other day, felt totally fine, and all of a sudden started feeling the room spinning and collapsed. They took her to Emergency, where they kept her for 12 hours, did all the tests, and the docs said it was Labs. She had no flu, no cold, nothing. Has anyone had such a violent onset? She said she couldn't even open her eyes, because it would cause so much spinning. Also, she couldn't lift up her head from the stretcher, it made her feel so dizzy. But her family doc is sending her for MRI and to a Neurologist. He is not sure it is Labs, because she didn't have a virus before and felt fine. Scary!

Gloria, Melissa, Cathy, nice to hear from all of you. Jemma, you sound so much better. I really admire you, because I know how awful this disorder is and how very frustrating.

Everyone, there is light at the end of the tunnel. The tunnel is just very very long.

Love, Maria xxx


Nikki, I'm no doctor, but it sure does sound like you have labs. Have you gone to your doctor yet? My heart goes out to you with the anxiety you are experiencing. It's the worst thing ever! At the beginning my anxiety was much worse too. Please don't feel bad about being sick. You are sick!!! You are not a weak person. We are strong being able to deal with this.

Gloria, I do live near Vancouver. It is so beautiful out here on the coast even though we get our fair share of rain. We are expecting a little snow out here this weekend. Regarding my tiredness, I was getting my hair done today and just sitting in the chair for an hour and a half made me so tired and made my muscles ache. People ask me if I've done Christmas baking, well it's not really a priority is it? Although I might attempt some with my daughter.

Jemma, my ENT was supposed to book my balance? test at the hospital, but I still haven't heard from them. I think I'll give then a call tomorrow and see what the hold up is. One way that I've noticed that my vertigo is better is when cleaning out the dishwasher and bending over doesn't make me as lightheaded.

Take care all!

Hi Susanne,

Your symptoms and mine are very similar. I, too, feel not so lightheaded after I have bent down to pick things up or go to get something from a low cupboard - so strange. Just going over to my in-laws for a meal the other evening (I didn't even have to cook or help with anything), made me feel as if I had walked a marathon. As soon as we got in the car to come home - I fell asleep, totally shattered. This is one of the most frustrating things for me because normally, particularly this time of year, I am so active organising everything.

I love the part of the world you live in Susanne. I did write in an earlier post, we visited Vancouver and Vancouver Island about 3 years ago. My husband has relatives who live there. One in Vancouver & one on Quadra island just off V. Island. We had a miracle holiday there & Tofino on the West coast of V.Island is the most tranquil, beautiful place I have been to. Would so love to be there now! Is the area busy because of the Winter Olympics?

Maria - great to hear from you and so glad you are having much better times. I do hope your friend is OK. If it is labs, at least she has someone close who can guide her through all the mysterious twists and turns of this thing!

Sandie - must tell you! Went to one of our local garden centres & there in the foyer was this huge black Christmas tree. It was dressed with silver and black decorations & looked very contemporary and stylish! Obviously this is a new fashion! My hubby is such a traditionalist (we have got a real tree) - goodness knows who is going to pick up the needles after Christmas?!!! Maybe that should be my task given what I've said to Susanne about bending down improving my dizziness lol!!!!

Melissa - hope today is a little brighter for you.

Love to all & praying for us all to have good times very very soon.

Gloria xx


Nice to hear from you Maria. Yes, you are right I am not too bad at the moment. Yesterday was a bit dizzy but today not bad at all. Hey, my black christmas tree is so beautiful, they have been out for a few years now and are very popular. I am starting a bit of a trend because everyone loves it. My 12 year old thnks it is the best tree she has ever seen and my step son has ordered one for his home. So there!!!!

Maria, most people do have a violent onset with Labs but lots don't. I was a typical case, i.e. after an chest infection, but for some it comes from nowhere. Mine came on gradually and lasted for a few months with mild dizziness and then it knocked me for six and I could not move my head for three days. The doctor told me to take three stemetil at once and then I was able to get out of bed (just). Things went really downhill after that.

Ha, you see Gloria black trees do exist! Have you seen the new upside down trees, now they are crazy!

Sandie xx


Just as I have been having symptom free days I have been hit with some sort of a stomach virus, now Im feeling weak and achy, good thing is it hasn't affected my balance.. Man this year has been one thing after another...


DC - yes I think its the time of year for bugs. I had a sickness one a few weeks ago but it only lasted a few days and didnt affect my dizziness thank god.

Maria - thanks for your comments. I am trying to be more positive because as I said earlier if this is labs and is going to get better and not worse then i can deal with it. The fact that the doctors keep telling me it isnt an ear thing really scared me and also made me feel that I must have some really weird undetectable condition. Basically the doctors have made me feel a whole lot worse about all this than better. I noticed your comments to Gary about the balance tests and I thought that was interesting. I definitely felt less dizzy when they put water in my left ear compared to my right and even the test guy noticed a difference in the way I sounded (you have to count up in 3s as they put the water in) but he said the results were normal and symmetrical and therefore concluded this wasnt an ear problem. He suggested the problem may be coming from my feet being a balance thing! I could have walked out there and then !!!!

But i definitely think the fact that i was less dizzy on the left signifies a difference in my ears whatever the test said. The left is the side i feel is affected on an everyday basis.

Gary - did you get your test results?

Gloria/Sandie - are you x-factoring? I think Joe will win but you never know.... By the way, I feel the same as you Gloria and Susanne about bending forward to do jobs, the dizzines doesnt seem as bad. So weird, perhaps the same parts of our ears have been affected because i am sure some people find bending forward makes them worse. Also some people find travel in a car is bad but we have always found that to be good for our balance. So strange isnt it...

Niki - how are you doing?

Jemma xx

Hi all.

Gloria, the night out didn't happen that time, the DJ we were going to see postponed the gig, and it's been rescheduled for the end of January. It suited because my friend who's birthday it was arrived back from holidays in Morocco (well for some :)the same night, so would've missed the gig had it gone ahead. I was relieved tbh, don't feel quite up to heading out yet, am just worried about a bad patch hitting while out and so far from home. This thing sucks. I used to love going out.

Jemma, I had the balance tests the other day, the girl who carried them out was really nice, explained everything well, but nothing major showed up, so am still none the wiser. She's to post out the results to me and if she sees anything when she reviews them in a bit more detail she's to refer me to a different ENT (I told her I didn't want to go back to my original one as he was useless) so will have to see what happens there. She did give me the name of a person who does physio/VRT so that's the next step.

Maria, I did notice that during the caloric test, that after she blew the warm air into my left ear that my eyes didn't flicker as much as compared to the other ear, but the girl didn't seem overly concerned about that. My left ear is the one with the constant tinnitus/buzzing and always seems to have fluid in it. I am having a bad patch at the minute, due to lifting a heavy box the other day, anything strenuous like that always makes it worse. It's like one step forward and two back, frustrating doesn't even come close to explaining this thing.

On a more positive note, my brother is home from China on Tuesday after being away for 6 months so it will be good to catch up with him.

Take care all, hope Santa brings us all new heads for Christmas :)

Gary.


Hi everyone:

nice to hear from everyone. Sandie, I thought of you this morning when I went shopping and saw a pink tree (hot pink), and a baby blue one. I always thought that trees were green except of course where Sandie lives, where they could be any old colour!!!! Just kidding.

Gary and Jemma, that is really interesting about the caloric test. If you google caloric test you will find that unless the problem is fairly significant, the test just doesn't pick it up. Apparently it is not that sensitive. My doc told me that it has to be 40% or more of loss of function as he calls it for the test to really show it. But heck, just because you fell in the normal range (even 20% is considered in the normal range he told me) it doesn't mean you don't have a problem, especially if you noticed.

These docs are frustrating, because if they did their homework, they would know that. But if the results are normal, they just send you home. Gary, in my caloric test, they poured warm and then cold water in my ers.

I went Xmas shopping for over three hours this morning (very unsuccesful) but wasn't dizzy at all. That wouldn't have happened a year agao, even six months ago. So everyone, it does improve. (I know I sound like a broken record). But I'm almost at the point, where I no longer think about whether I am going to be dizzy. Having said that, this illness if full of surprises and it may still may not be over.

Jemma, I totally agree with you that you have an ear problem. If it is alwys the same side bothering you, what else can it be! I knew my left ear was a problem, way before the test because I would get slight stabbing pains, and (Sandie I know you had those too) a kind of fluttering in the ear. Also I felt I was pulled to the left side. So Jemma, if you have symptoms in your left ear and noticed the difference on that side in the test, how can it have anything to do with your feet? Have you seen a vestibular physio Jemma? Very often they are more helpful than the doc, who is just looking at test results. Do you have hearing loss Jemma? Because if you don't it is probably the nerve and not the inner ear itself.

Melissa and Nikki, are yu having better days at all?

Gloria, correct me if I am wrong, but if you are having problems when you move too quickly etc. isn't that a Benign Positional Vertigo problem? I felt crappy no matter what I did. Thanks for asking about my friend, she is feeling better, no longer dizzy, but very tired and not very strong. A bit worried about the doc sending her to a Neurologist. I am there to listen to her, but my symptoms were totally different, nothing that violent, just felt awful and dizzy every single day. Sounds like her problem may not be Labs.

Everyone, if you get dizzy shopping, just get someone else to do it. Because with these Xmas crowds, it's bloody awful if you are down with this.

Take care, Maria xxx


Hi Gary

Glad you got through the tests. But as for you, me and Jemma and nearly everyone else - we get normal results! Maria, is correct - they are not that good and hardly ever pick anything up so really I don't know why they bother! Glad you mentioned that lifting a heavy box made you worse because the same is true for me and still is. I used to be so strong before all this (worked in a garden centre lifting heavy compost and pots all day) but now, and ever since I came down with this condition, it sends me so dizzy. Same goes for carrying bags that are really not too heavy, if the bags are different weights it really affects me!.

Maria, yes, there are loads of different coloured trees where I live, we have green (of course), black, white, gold, hot pink, purple, you name it! My daughter has a small one in her bedroom made of black feathers.

So, this year I have been able to manage all of my christmas shopping (with minor blips) but last year it was horrendous, so that's a good thing. Maria, well done with yours even it it was unsucessful - it gets worse every year trying to think of something to buy!

Maria, yes, I did have slight pain and that fluttering going on inside my ears - that was weird and I also got pulled to the left. Funny you should mention that because it hadn't happened for ages until yesterday! This time though I was feeling a bit dizzy and was being pulled to the right. I wasn't aware of it but my daughter kept complaining that she was going to end up in someone's garden if I didn't stop it!

Gloria - were those two huge BLACK trees I saw on X Factor last night? - I'm sure they were - lol! Poor Stacey gone - I did love her but still hoping that Joe's going to win. And, it's not because he's from the north east (LOL)!

Take care everyone Sandie x


Maria,

I have been better than last week. I caught a cold and it was that time of the month. So I have been having better days. I am so tired by the end of the night. I have been able to go into the city (NYC) and see a show and have dinner out. I felt a slight bit off. It is raining today. Why does the rain affect this so much?

Gary and Sandie, you mentioned that lifting heavy objects makes you dizzy. I think it is because there is a nerve called the greater occiputal nerve that runs up your neck and branches out behind your ears. The end of this nerve is your vestibular nerve. So when you lift something heavy, the muscles put pressure on the greater occiputal nerve and that causes dizziness. Just guessing...LOL

I remember when I first went to my ENT in July she said that the labyrinthitis would last 6-8 weeks and then I would be fine. Maybe, at Christmas I would have a "moment". HA HaHaHaHa I have had a "moment" now for 6 months!! I swear these dr.s have no clue about these vestibular disorders. I would love for just one of them to experience what we experience day to day.

Today is my 39th birthday. All I want is a new head!!

Melissa

Hi folks.

Melissa - happy birthday! Hope you are getting a bit of time off from all this rubbish. I think you may be right with what you said about that nerve, I did a bit of a search on it and it seems to tie in with what you've said. Convinces me that it's labs and nothing worse.

Sandie, it was a bit predictable about the results of the tests alright, but it's another thing to tick off the list of what could be wrong. Going to give that VRT specialist a call tomorrow and arrange a meeting hopefully before Christmas. Like you I used to be active - loved going to the gym often and do a bit of weight training. After the chest infection early last Jan, I went back to the gym twice or 3 times and then it hit at the end of the month - so again what Melissa said makes sense.

Maria, glad to hear you got out for the shopping without any dizziness. I'd imagine queues and all the commotion will be hard to deal with, but it'll have to be done soon :) Next year is a big year - two weddings, two, possibly 3 stag do's, a friends' 30th birthday, so quite a bit going on. Getting Christmas out of the way first is the main thing - I'll be heading to the airport in Belfast on Tuesday night to collect my brother, will insist my mother comes along in case a bad patch hits while driving.

Ok, that's my lot, am glad I read your posts about the lifting heavy stuff as it's reassured me a bit that it's just inner ear crap and not the tumour flaring up.

Thanks all,

Gary.


Gary, Thanks for the birthday wishes and I am glad that I could help. My labs started two weeks after I pulled a muscle in my neck at the gym. I have never been the same. I never had a cold or upper respiratory infection before the labs onset. So I know it was from the pulled muscle. I also had an MRI and it showed that I have three bulging discs in the C2, C3, C4 position. Exactly where the greater occiputal nerve runs through your neck. Try to ice your neck, it really helps. So does VRT!

Melissa


Hi Melissa,

Happy birthday! Gosh going into the city, then a show then dinner. That is truly amazing! I am now after two years feeling comfortable about going on the subway and not freaking out, and going to dinner. But I still haven't tried a movie. You do sound like you are gettig better. That's great.

Sandie, like you I haven't experienced the ear stabbing pain and the flutteing for a long time, over six months at least. But the first year it was on and off the entire time. Isn't shopping a pain. I don't even enjoy it. Everything goes on sale anyway in January. Too big a deal. But at least I don't have that awful dizziness I had last year (and this summer) so I am grateful for that.

Nikki, any improvement? We are all thinking about you. Maria xxx

Hi all,

Another week-end out of the way! Haven't felt too bad - just felt off-balance rather than dizzy. Did a bit more shopping but have been sooo exhausted come the evening.

Melissa - belated Happy birthday! Glad you got to go into NY - that is a sure test for any person with labs lol!!!

Sandie - yes I did see the trees on Xfactor!! Just because you're the trendy one!! Anyway, many congratulations to you & your fellow countrymen up in Geordie land on Joe winning Xfactor - he did do fantastically well.

Gary - I had a chest infection with my labs - so maybe we caught the same type of virus. Anyway, are you having anymore symptom free days yet or are they days of milder symptoms like me? It will be wonderful to feel free of this thing.

Jemma - how have you been?

Speak soon. Love, Gloria x


Hi everyone

I've been coping ok these last few weeks, the weekend was ok. Managed to go out for a meal and the usual food shopping. My left ear is still not right and has been making snapping sounds more these last few days. I get that twingey stabbing and fluttering and its like there is fluid in there like Maria and Sandie describe. Maria - I agree with you about the caloric test, it hardly seems worth doing because unless you have really serious damage then the doctors just use it as a reason to say there is nothing wrong with you.

I feel an internal swaying off balance feeling most of the time but that isnt as bad as the dizziness. I still wake in the night feeling dizzy and get the interimittent tingling feelings. I just try to talk myself into not worrying and reassuring myself it will pass.

I am prepared mentally that full recovery will be a long haul but as long as it keeps improving I can bear it. I just dread getting setbacks and there are so many with this thing. I am definitely finding things easier than I did a few months ago but I cant relax until I know this will defnitely go for good.

Happy birthday for yesterday Melissa - hope it was enjoyable despite the labs. Has anyone read 'A Dizzy Spell' by Gillian Gabreille Barnet. Its about £5 from Amazon, quite useful for labs sufferers.

Take care all x


Thank you everyone again for the birthday wishes! Jemma, you couldn't have said it better. I hate the setbacks from this. I wake up everyday wondering how I feel. You can have two weeks with nothing and them BAM get all the symptoms back again. I just want to go about my life without thinking about this all the time.

I am going to check out that book you suggested. Thanks Melissa

Niki I hope you are doing well.

Hi all, Talk about setbacks! I was on the phone to a friend of mine this evening when I came over hot, dizzy, panicky and shaky just like I did a few months back. I haven't been that bad for ages. Just as I was talking about feeling better over the week-end in my earlier post!!! AAAAAARRRRRgh!!! Melissa, you are so so right. Just when you think you have this thing licked then wham back to square one.

I am so so fed up now. I only wanted to feel a bit better for Christmas, so I really hope this isn't going to be weeks before I get back to how I was this week-end.

Jemma - good to hear that you are having a good few weeks & hope it continues for you too, but it is so tiring not only having to deal with this but the anxiety of wondering when it will ever go and stay gone!

On that note I am now going back under my duvet - and I haven't said that in a while.

Hugs to all,

Fed-up Gloria x


Gloria - I completely agree and sympathise. This labs thing is just the pits and so unlike any other illness. I knew as soon as it started it was just not a normal thing and was not going to go away quickly. I even have the emails i sent to my boyfriend from work when this started saying how strange i felt and he told me to go home and I said if I do I dont know when i will be coming back. It was like i knew even then this was a real life changer.

Anyway I have learnt that because this is so unpredictable you just cant plan your recovery. Its tempting when you have a better few days to think you will keep improving in a linear way but you dont. You literally cannot plan ahead and have to accept everything it throws at you and try not to get too disheartened. The anxiety is the worst though and i never want to get that again but you just dont know. I am sure it is just a blip Gloria and overall you are improving but you do worry you are going backwards dont you, its such a nightmare. It is like someone has cast a spell on you and you cant shake it off.

Keep the faith, we have to keep believing we will recover one day. x


Maria,

The sales in england start before christmas! I do my shopping in November and early December and it is soooo annoying that everything you have bought is down to half price BEFORE christmas. It is so unfair!

Gloria - I went through the stage you are going through now - sometimes just dizzy, sometimes off balance, sometimes both together. It is so mad this thing, you never know what's next! Yes, my boy Joe won the X Factor. Have you seen the daily mail today - saying that he is going to be a one hit wonder and is just a karaoke singer. Why can't they leave people alone? I personally think he has a fantastic voice. Why do they make such a fuss about it being karaoke - they have to sing known songs otherwise no-one would tune in!! Sorry to hear that you are not feeling so good today - it's always like this, one step forward, two steps back.

Jemma - I'm different to you in that the off balance feelings are the ones I can't cope with! If I had to choose between the two I would pick the dizziness as I just couldn't function when I was all over the place. The 'whooshing' feelings were the worst, when I would feel as if the world had moved from under me and I would be grabbing on to the nearest thing to me.

Melissa, happy birthday to you - a December birthday like me!

Hope everyone is feeling better today.

Sandie xx

Hi Jemma,

Thank you so much for your reply. I know that this is what labs does and you try and talk sense into yourself, but each blip disguises itself in so many different ways, especially when you haven't had a particular symptom for such a while - for me I really thought the anxiety thing had passed.

As always when I'm like this, I didn't have a good night, so today have felt really tired. This evening is a bit better, but as you say it is so unpredictable and you are right because when I look back and compare my symptoms to that of a couple of months ago, I have progressed - but symptom free would be good or is that being too greedy?!!!!!

Tomorrow I have to go into town again and try and do a bit more Christmas shopping, so hope I feel ok. I have done some on the internet which has helped, but need to buy some gift vouchers - a cop out but less stressful.

My boss has also been on the phone again - left a message, so I have to call back. I am dreading that because they have been really kind to hold my job open, but there is no way I feel I can cope, so I am going to have to tell them I won't be back. I do so admire you Jemma in the fact that you have kept on working through this - you are amazing.

Anyway, thanks for your kind words Jemma and you are right, we have to keep the faith and as Melissa says, this too will pass although mine is crawling along and is taking it's time to pass!!!

Hugs, Gloria xx


Gloria, I think you and I have both hit a bad spot again. Like you, today I feel weak and shaky with sore muscles and very down. Do you ever get the chills with this as well? Sometimes I also get a bit of cramping and diarhea. Oh bother!! This past Sunday we hosted an engagement party for our son and his fiance. I paced myself and started preparing for the party days in advance, doing just a little each day. I actually dusted my house. I hate dusting, but it had to be done. The day before the party I cracked the whip and had my family help clean the house. I bought some appetizers and made a few dips and the party was on. I'm so thankful that God gave me the strength that day and I enjoyed it. It's so discouraging to feel so rotten after having some days where you feel so much better. I'm so tired of this!!

You were asking about the upcoming Olympics. Yes there is much happening in Vancouver and Whistler, but we don't notice too much since we live an hour out of the city.

Jemma, believe it or not, I called the ENT about the delay in my tests and they said it'll take about 4 months for me to get in. That is how busy they are. Unbelievable! I probably won't even need the test by then. Stupid.

Thank-you for listening to me.


Thank you for your nice words Gloria. That is why this site is so important because only we can truly understand the horror of this thing. I just dont think others can get how this can go on so long and the mental anguish we go through trying to deal with it.

I am scared I am going to have a set back because my left ear has gone more snappy and noisy again and I think there is fluid in it. Last time that meant the dizziness went a lot worse and I just dont want it to happen again but am bracing myself. I keep trying to tell myself I have improved but it is so hard when you dont feel right.

I dont blame you about not going back to work Gloria - it will only put you under unnecessary stress and I can say from personal experience that the first few months back were sheer hell. I just felt like crying all the time. I am more used to it now and am coping a bit better but it isnt easy and there is so much i feel i could not do. Just focus on your recovery and doing your own VRT. How are those tablets the neuro gave you - have they done anything to help?

Susanne - I had the chills, cramps and diarrhoea a bit in the first few months but that seems to have improved. Do you get any tingling in your limbs?

I can believe the delay with ENT - they are awful arent they, even in your part of the world it seems the same. I paid privately for my balance tests. It was 245 but I would have had to wait months on the NHS and I was desperate for answers. Chances are you will be like most of us on here and nothing significant will show up but it is nice to know.

How is everyone else? xx


Hi Everyone!

Just have to ask if the weather affects anyone else? It has been rainy and cloudy all week. I feel the worst on those days. Today it is sunny and cold and I know that I will feel much better.

I have been doing fine during the day, but wow at night I get slammed! Around dinner time (of course) I am just so tired and feel just off. There is no other way to describe it.

I think what is so frustrating is how hard we all work to heal and sometimes it just is not enough!

Keep the faith and this too shall pass.

Melissa


Hi again.

Well... my VRT experience has not been that positive. I live in a small town and we only have one PT center. I went there and saw the so called "vertigo expert". She decided based on who knows what that I must have BPPV. I told her that the ENT tested for BPPV and it was negative but he felt it might be viral. That did not sway her. She has since given me all these variations on the epley and brandt daroff exercises in the book. Needless to say I have not felt better. I have started my own exercises based on what I've seen on-line but I haven't seen any improvement yet. I go back to see the ENT at the end of the month and if I don't get any answers then I think I'll look for a neurotologist.

Jemma, are you still in the same boat with the "no concrete diagnosis" thing? I cannot stand not knowing for sure what this is. The fact that I don't have any "ear" symptoms (hearing loss, ear pain or fullness) really makes me wonder if this is even it. Not being able to have an MRI is really making me suspect the worst.

People talk about seeing improvement over the course of months... well I'm in my 6th month now and I don't feel any different than my 2nd month :(

I'm just so frustrated. Before my heart problems started about a year and a half ago I was such a healthy person and now I feel like such an invalid. The labs (or whatever) came on so soon after my heart diagnosis I know people must think I've turned into a hypochondriac. I've quit telling people how I feel... in fact I pretty much just avoid most social situations. It's no way to live but I don't know what else to do. I don't think my husband (or anyone else for that matter) really gets that I feel miserable 24/7. Sorry to vent.... but I think you all are the only people who might understand.

Hi everyone,

Susanne - again, our symptoms seem mirrored. The bad patch that hit me the other night was exactly as you describe. Shaky, achey, upset stomach followed by the shivers and of course feel so much more off-balance. Congratulations on your son's engagement and the fact that you coped remarkably well. It is all about having to plan so much more and cut corners whereas previously you wouldn't even think about these things. Good for you for though Susanne.

Well, I am back to see the neurologist again this afternoon. I get the results of those ridiculously expensive blood tests. The tablets he gave me may have helped a bit but don't know whether I would have improved a little by now or if it is the tablets - who knows.

Amanda VRT - again, this is something I have been doing for a while now. Whilst it helps when I do get very woozy, I am not sure if it has made me better more quickly. Given that I am at 6 months now, I may have got to the same stage without it - again - who knows. For me I think it hasn't helped with the stiffness in my neck. As part of VRT is to turn your head side to side and up and down quite quickly, I think it has strained my neck muscles more.

What I have noticed is the set-back I had the other night I have got over more quickly than previously - so, I suppose that is another sign of progression.

Anyway, it clearly is a very slow progression with digression - a lot!!!!

Speak soon, Take care all Hugs Gloria xx


Hi Amanda

Yes im in the same boat as you, no diagnosis or help from the doctors at all. I am due to see a neurologist in jan but not holding my breath. I am basically gonna have to talk them into diagnosing labs as they are clueless about it and would rather just dismiss every symptom as nothing to worry about.

I understand about social situations, I too avoid them at all costs. I force myself to work, do you work at all?

My parents have invited me out for a meal with them on xmas eve. I have agreed with trepidation as i know it will be such a test for me, im scared already! Gloria - you got through your meal out didnt you. I just hope I can too. Any plans at all for xmas?

Amanda - do you feel dizzy or off balance all the time. I do! If you do then i dont think the VRT is right if she is saying it is BPPV as i understand that comes in episodes of spinning and is not present all the time. I dont think you have to have ear symptoms for it to be labs. Mine didnt really develop until a few months in and some people dont have them at all.

Gloria - how did you go on with the neurologist? any joy?

God, im fed up with this thing. I just want to look forward to the new year without this hanging over me. Please please let us all improve soon xx


Amanda-Don't worry about it being a brain tumor. It is most definitely labs. The physical therapist probably only deals with BPPV and so that is what she thinks "vertigo" is. Try to find a new physical therapist that specializes in vestibular issues.

Today I was out to lunch with my best friend. I was feeling great this morning, then bam, at lunch I felt god awful. Just swirling in my head and a bit nausous. I am so SICK of being sick!!!!!

I went to an allergist today too. The ENT told me I had an allergic looking nose. He suggested that I see an allergist. The allergist said I did not have an allergic nose and my tests all came out negative. NO allergies! What the hell do these doctors learn in medical school?

Dear Santa, I want a new head for Christmas! PLEASE!!!

Melissa


Jemma,

I do work. I'm a high school teacher. Gah! On the plus side I do have the next two weels of for holiday.

I do feel constantly dizzy.... or fuzzy. The only time I feel somewhat normal is when I am laying down and still. Also I have not had any spinning since the first month (and even then I never had much). The worst I feel though is when I move my head.

Okay... I have this theory that makes me feel like labs is probably what I have. I know this is just me speculating and I have no real idea what I'm talking about but it does make me feel a little bit better. And why am I putting this here? Because no one else cares :) So the same week my dizziness started I developed a large floater in my left eye. I have never had a noticeable floater before and I went to the eye doctor who was able to see it but said my retina was fine and it was normal to develop these as you age. This is typically not thought of as a symptom of labs BUT consider this - floaters are sometimes caused by inflammation. They are groups of white blood cells that have gotten into the vitreous fluid around the eye. Maybe then the same inflammation that caused the floaters also caused the labs? I only think this theory has some merit because I have seen other people on-line (even on this page) talk about developing floaters at the same time as these symptoms.

I think I think about this way too much :) But it would give me so much comfort to have a diagnosis, so coming up with these explanations does make me feel better.


Amanda- I too developed floaters after getting labs. It's funny because a friend of mine this summer was complaining about them. I had never heard of floaters. Then a few months into labs, I developed them.

Melissa

Hi all,

Amanda - I have developed loads of floaters swimming about in front of my eyes all the time. Although I have had a few in the past (an age thing) they have increased since developing labs. Had an eye test done a couple of months ago as my vision had also been affected with this. I wear varifocal glasses and my brain could not cope with the dizziness and trying to focus through different range lens. Anyway, nothing showed up in my eye test as abnormal. So I have put it down to age although they have increased lately.

Jemma - the neuro on Thursday - well he confirmed (as we all thought of course!) that nothing showed up in those expensive blood tests (felt like asking for a refund!!!). He said that the cycle needed to be broken between the brain and all the nerve impulses that control movement i.e. eyes, balance and muscles. So he just increased my amitriptyline to 20mg and I go back in another 6 weeks. He said that obviously my symptoms had gone on longer than most (?!!!!)- do they really know? He said it can come back, not so severely and I would recognise the symptoms and therefore wouldn't get so anxious. So was there anything he was going to tell me that i didn't already know!! Answer - NO!

He told me to keep up with my VRT and do Pilates and go to the gym to do more robust balancing exercises - simple really!!! So it will be interesting to see what your neuro says when you go to your appointment in Jan Jemma.

Go for your meal out with your parents Jemma - you might suffer the following day more so, but you do feel a sense of achievement. Because of necessity, I have gone into our local shopping centre quite a few times of late and it is much easier to cope with now than it was a few weeks ago. I have felt a little better the last 2 days after my ghastly attack the other night, but as i sit here typing this my head is all swirly.

Still not sure what we are doing over Christmas. I have not committed to anything. So on the day we will either be on our own with perhaps our neighbours popping in for a drink and mince pie or if I feel reasonable, we may drive down to Devon to visit my relatives - just for the day though. It will be a round trip of about 300 miles, but I can't face staying in someone else's home just yet when I don't know how I'll be when I wake up - especially. It's just that I so want to be with my family and friends in one sense but if I feel bad, then I just like to be on my own. This is such a nightmare time isn't it? I have never been in such a situation like this before and I hate it so so much - I'm sure you will all agree.

Melissa - put me on your Santa list for a new head too!!

Love to you all - speak soon.

Gloria xx


Gloria- Ah they went the antidepressant route with you too! I myself was prescribed Lexapro by three different doctors. It did not agree with me, as they jumped me on at the highest dose. All during my worst time with Labs. I was up for four straight days!!!! Zoloft I tried next. It worked, but...I have always been very thin and have a fast metabolism. I run 4 miles everyday and am gaining weight!!! Ah the joys of labs.

I was symptom free today! Yippee! If only I could count on it lasting. I know that I will be wolloped again, just don't ever know when. I just want to be symptom free on Christmas.

Santa please give us new heads.

PS where is Niki and the rest of the crew on here? It seems like it is just Jemma, you and me.

Melissa


hi all

It is very quiet here, is everyone hibernating from the snow. it is really heavy here in the north west.

Amanda - you sound very similar to me - no diagnosis, constant dizzy/fuzzy head and trying to carry on working. I dont know how you do it as a teacher though, that must be really hard. I recall you saying you thought your symptoms may have been caused by medication and i also think mine might have been too. I havent had floaters but lots of othr people have, although I do suffer with this intermittent eye problem since getting this. It is like my right eye feels strange and stiff and tingly. It happens for a month then goes away again then returns, it is so weird but like you say I am sure this is all to do with nerve inflammation so probably all related.

It would be good to have a proper diagnosis wouldnt it but it seems we are asking for too much there!!

Gloria - what a surprise the tests did not show anything ! I dont know what your neuro means about breaking the cycle, sometimes you wonder if they know what they're talking about at all dont you! I wish the doctors would be honest with us and tell us that labs can last for ages instead of making us feel abnormal that this is going on so long. It even says on websites like wikipedia that the dizziness and disequiliburium from labs can last months and years.

Melissa - at least you are getting some symptom free days although its so unpredictable isnt it! I want a new head too! or new ears at least!

Speak soon xx


Melissa

Strange you should say about you gaining weight with Labs and you are naturally a thin person.

When I first got Labs I lost over two stone. I am not saying I am naturally thin (maybe 20 years ago!), but once I started getting back into everyday life I started to put the weight back on. It probably stayed off for about a year from the onset of Labs. Since then I have totally changed my diet and eat only healthy food, fruit and veg. Yes, I do eat chocolate and the odd bag of crisps but I have put all that weight back on and more and am now the heaviest I have ever been. I am more active than I have ever been, walking up to 20 miles a week most weeks especially during the summer and still the weight gain! The amount of sweeties I do eat should not make me gain any weight! I have a friend who has suffered with Labs for nearly the same amount of time as me (nearly 5 years) and she too has had a lot of weight gain and cannot shift it. She too is now more active than she ever was!

By the way they also tried the anti depressant route with me and I told them what I thought of that! They always do that - try to make out that you are suffering from anxiety/depression in the normal sense not from a Labs related sense i.e that it will go away.

melissa - my last post went missing - so I did post and I am still here lurking about - lol!

Amanda - a teacher - and all those horrible high school kids - lol - I don't envy you your job! It must drive you mad at times all the noise that they make - that has always been one of my main triggers, noisy kids. I have always loved kids, especially the little ones but I have found on many occassions that their incessant chatter brings on my symptoms.

Gloria - your consultant, when he says breaking the cycle sounds like he is talking about anxiety/depression. Like I said before they always try and put it down to that when you know that it is not that. The Labs controls the anxiety levels can't they get that through their stupid little heads?

Jemma, it says in loads of places on the internet that Labs and its symptoms can last for years, you would think that they would just do a little bit of research these doctors wouldnt you?

I have had a couple of bad days this week but not too bad on the grand scale of things. It's my birthday tomorrow so I hope I get a good day. My niece is taking me out for lunch (aah, sweet) so I pray I am good for that.

Take care everyone

Sandie xx


I have read alot about Labs and Anti-Depressants were never really part of the rehabilitation process, it may help but then you have the problem of trying to get off them which is very hard due to the withdrawals.. Im still convinced it just slowly goes away as you body and brain compensates for the damage done to the vestibular system, VRT seems to be the most recommend rehab for Labs but I believe that you can do this yourself through exercising and staying active, that in itself challenges your balance system which helps your brain compensate. Even though Im not 100% I have found that for the last 12 months I have slowly got to where I am today and month to month I notice small changes in the way I feel, I believe we will all beat this, we just gotta keep that positive mental attitude.


Sandie- I lost 10 pounds this past summer from labs. I meant that the Zoloft has made me gain weight. I too have never been more active and eaten healthier. I run 4 miles a day. I do sit ups everyday. I am at the damn gym for an hour and half each and every day!! I eat fruits, veggies, drink tons of water and green tea. I gave up coffee and wine and soda altogether. AHHHH!!!!

Today I was symptom free again! Again I am not counting on it lasting. Went to my in laws Christmas party and was FINE!! I just hope to god that on Christmas I am fine.

I fully agree with all of you who refused the anti depressents. But...my anxiety from the labs was so bad that I could not cope! I literally was on the ground in a panic for a good week. I go to an excellent phsyciatrist, who will wean me off in 6 months. I know that if you titrate off them, there are no withdrawals. I am glad that I began to take them, Zoloft has literally saved me. I was way to anxious to deal with the labs. Now when I get wailed with symptoms, I don't get nervous at all.

Keep the faith all!! Melissa

Hi all,

Sandie - Happy Birthday to you, happy birthday to you, happy birthday dear Sandie - Happy birthday to you!!! Glad you can't hear me singing that!!! Hope you have a fab day and feel 120%!

Apparently, the reason the neuro put me on Amitriptyline was not for anxiety/depression, but it is also used as a pain block. What he wants to do is try to de-sensitise the nerve endings which seem to be putting all my neck & head muscles into spasm. This in turn is delaying my vestibular system from compensating properly. I suppose he should know what he is talking about?!!!!! Anyway, the increased dose seems to be making me more dizzy - so I really don't know. If I continue to feel like this & see no improvement then I will go back down to the lower dose & ask to come off them when I see him in a few weeks time. I absolutely hate taking meds like this as I always consider myself to be a positive & pragmatic person - although - this has tested me to the limit. And, yes, I have noticed that I am eating more and a few pounds have gone on - oh no!!! But considering I was not eating hardly anything at the beginning of all this, of course you would lose weight. So I must watch my eating. It is all the chocolates etc at this time of year. I did get the nausea feeling back yesterday, though which I haven't had for a while.

Well, another few days to Christmas - is everyone ready?

Melissa - my mum-in-law flys out to New York tomorrow - is the snow really bad? She is staying with her son, my brother-in-law and his family in East village in Manhattan. They then, on Christmas Eve drive up to Boston where she will stay for the duration. Are the roads OK? I am a bit concerned as she is 83 - although much fitter than me, especially at present.

Speak soon - again have a lovely day Sandie.

Love & hugs, Gloria xx


HAPPY BIRTHDAY SANDIE!

Hope you have a dizzy free day xx


Gloria- The roads are all clear. We are supposed to get another small snow storm Christmas Eve. The department of public works for each town and the state really clear the roads all night long. We drove out to my in laws yesterday and there was no problem.

Sandie-Happy Birthday!! I hope it is a good one for you.

Again, I have felt fine so far all day. I went to my daughter's concert at school, then her class party. I am off to my son's concert at school and then back to my daughter's class party.

Melissa

Happy birthday Sandie! Hoping you have a better day today.

And merry Christmas and new year to everyone, won't be online for the next week or so wishing all of you all the best. I'm determined to make next year a better one than this one was (wouldn't be hard lol)

Gloria - am just back from the physio less than half an hour - she said the same - I have problems with my lower neck on the left side causing muscle spasms and stiff vertebrae so she gave me exercises to do over the next while to try and relax the neck muscles. Also check your posture - she said mine was awful - slouching forward puts more pressure on the neck and the joints which doesn't help. Feeling better again this last while, hope it continues.

Happy holidays all,

Gary.


Hi everyone:

Sandie, happy birthday! I have been posting on this site for almost 2 years, and you are one of the few of the "old-timers". (I don't mean your age.) But do you remember Katie from Scotland, she used to post all the time. And Skye? Anywat I hope you had a nice celebration with your not-too noisy family. I agree with you regarding kids. My kids are now in their twenties, and I have less patience with children. Can't stand all the chatter. And some of them are such brats!!!

Gloria, sorry to hear you had a setback. This illness is the pitts. Unfortunately it can go on for a long time. And when you go through it, you feel like it's never going to go away. I had a few off days last week, but that may have been weather-related. Did manage to do all my Xmas shopping, ran around malls for hours at a time, which would never have happened last year, even less the year before.

Amanda, I had the same symptoms, not dizzy when I was lying down, but dizzy when I was up and especially when I moved my head. You are brave to tackle high school kids with this disorder. Melissa you are doing great with going to all those activities for your kids. I still haven't attempterd a movie, Over two years now.

Jemma, I know you are having ups and downs but you really do sound much more optimistic. This site is a godsend, because you realize you are not alone. So thank you ,thank you, thank you Rich for maintaining this site. I know all of us are very grateful. When you get to the perly gates and they ask you what you have done to inherit the kingdom of heaven, tell them you ran a support group for dizzies for years, and I'm sure they will let you in.

A few of you mentioned the lack of social life when you are going through this. I din't go anywhere for so long, just read books and went for short walks. It's really hard to enjoy it when you feel you are goig to keel over any minute, and I always had the sick/nauseous feeling that accompanied it. People thought I was a hypochondriac, I just stopped caring, because being home with a book was easier than being out and feeling terrible. What can you do? You have to cope the best way you can.

it sure is a long road.

Maria xxx

Hi everyone, Just thought I'd sign in to wish everyone a happy Christmas and give you a quick update on what's been happening with me. After having a particularly bad couple of weeks recently I thought I would try hypnotherapy to see if that might help with my anxiety - maybe to see if my brain might react better to the bad signals it gets from the inner ear! It was about a week ago and its hard to tell what sort of effect it's had as I am now staying with family for Christmas in Adelaide and I usually only have problems when I'm on my own or just with my kids.

Anyway, I arrived to stay with my parents and my Dad had bought me a "power balance bracelet" which is some sort of new technology that is supposed to help with your core strength, flexibility, balance and general well-being. Check it out on the internet if you are interested. So I've been wearing that for a few days as well!

Then today I went to see a doctor who performs cold laser therapy on people with tinnitus, migraines and other conditions. He told me my ongoing tinnitus and dizziness is all related to my neck as a virus such as labyrinthitis can't last for more than a few days! I almost laughed in his office - as we have all stated it is almost funny how few people have any understanding of these things! I was interested in your comments Gary about posture, as this doctor also told me my posture is terrible, and that if I improve it and put wheat packs on my neck it will improve. I won't

So as you can see I am having a bet every which way - not that I am too bad but its just an ongoing thing that bothers me.

Hope that you are all able to enjoy Christmas with your families, take care everyone Cathy


Hey Everyone!

It's been nearly two weeks since I posted last! I'm overwhelmed by everyone's support and so thankful. I definitely had a huge freak out moment. It's strange how going through this can change so much in our lives.

I've become very introverted, and been spending a lot of time reading. Slowly....oh so slowly the fear is going away. This is a blessing because that was the worst part!

Everyone's comments have comforted me so much. I honestly would not know what I would do if I didn't have someone I could talk to about this.

Happy to report I'm feeling MUCH better. Still get nervous sometimes though. I haven't gotten an official diagnosis. My doctor keeps looking in my ear and telling me they "look fine" even with the tinnitus.

But I'm resolved to stay strong. I keep telling myself I'll be fine in a few months. I just gotta hang in there and one day this will be a bizzare memory.

Thanks everyone again for the advice, concern, comments and understanding!

Just wanted to update everyone very quickly! Now I need to go back and read up on everyone else! :-D


Hi everyone

Thanks so much for your birthday wishes - I did have a lovely day.

My niece and her boyfriend (first time I've met him) took me for lunch and my son and daughter tagged along too. I was fine in the pub apart from when you wait in line for the carvery when I felt pretty bad. It was so damn hot there beside all those hot plates and the chef disappeared to get another turkey which meant we had to wait quite a while - no good. However on returning to my seat I felt fine and we did have a really nice time. My daughter came home from uni late afternoon so I now have all my family home.

Maria, I do remember Katie and Skye (senility hasn't set in yet!). Katie was like a breath of fresh air - absolutely mad that one! They must be ok though so that's good!

Cathy - let us know if your bracelet works. I am like you at the minute - life is not so bad but it still does bother me!

My kids are off ice skating now - could you imagine us doing that with out dodgy balance!!

Take care everyone

Sandie


Cathy: I LoL'ed at the comment your doctor made. A couple days! haha! But on a more thoughtful note, in my obsessive research I have come across one or two bits of info here and there that tie neck issues to feelings of lightheadedness (because the muscles connect to the brain?) It seems that days when I wake up with a stiff neck, which I chalk up to a bad sleep position, the fog seems worse. Wonder if there's a connection. Hmm.

Melisa, Sandy and Gloria: I too have had nausea/diet issues with labs, and have lost about 7-8 lbs since this ordeal started (so about 4 lbs a month). The smell of food makes me lose my appetite, and what's worse is I'm hungry up until the food is prepared and I start to take in the smell and sight of it. Then suddenly the idea of actually eating is rather off putting! Yikes. I'm somewhat chubby though, so people have been complimenting me on the weight loss (even when I explain the cost)! I know they mean well, but I'd like to kick them all the same. LoL

This should make christmas dinner very interesting! :-)

Thanks for the hug too Gloria, and very kind words from you and everyone! Hugs to everyone for Christmas as well, and the holidays!

Oh and mini update: My blood work showed a severe Vit D deficiency. Bah....I still believe I have labs, but I guess some of the symptoms overlap (anxiety, weakness, brain fog). I don't know where one condition ends and another begins, but the vit d supplements have "taken the edge off" and I don't feel as depressed. :-) Good christmas gift!

HAPPY HOLIDAYS (again) to everyone!


Hi all

It's not been a good day for me dizzy wise. Honestly will this ever end? Was off work yesterday due to snow so had to try and catch up today but felt so woozy all day. I finish for xmas now but have to go in for cover one day in between now and new year.

Nice to hear from you Maria and its reassuring to hear that even though you arent 100% you can see improvement over the last 2 xmas times. I havent managed any shopping really, just online stuff. I have been for a few quick quiet meals with my boyfriend but anxious about the meal with my parents on xmas eve - 3 courses in a busy restaurant HELP!

Glad you feel a bit better Niki - it sounds like you and also Cathy have some lingering anxiety problems which must be horrible. I really hope I am over that but for me my balance is still really off and it is such a horrible feeling. I hate it so much!

Melissa - you sound as though you are getting better but as you said before it is so up and down you can never relax and forget about this.

How are you Gloria - did you ever speak to your employers? Are you still seeing the therapist for VRT? Not much on TV over xmas either is there! I will have to get out the DVDs I think.

Speak soon xx

Hi everyone,

Well, just seen my mum-in-law off to New York. Heathrow airport was heaving - goodness knows what it would have been like if there had been a strike. Felt really sad as we could have been going too if I had been well. Don't know if I'll be brave enough to fly again after this.

Have felt really odd this last couple of days. Apart from feeling really swimmy headed, but have had a migraine from hell plus an odd sensation at the base of my skull. Feels really sore and painful. The thing is, you think it may be something else after all, but, to be honest I've got past caring. Whoever is responsible for all of this they can throw at me what they like.

Really pleased you are feeling brighter Niki and lovely to hear from you Cathy. It seems for some that the base of the skull and the neck suffer. As the inner ear is positioned somewhere behind the head, I wonder, as things are getting 'better' it is the nerve impulses to the inner ear spluttering to life (one hopes) and causes more localised problems. I think so much sometimes what can cause all these different symptoms, you end up sounding like a crazy woman!!!

Anyway, Jemma, I'm still seeing my VRT therapist. She gave my whole body a good going over last time as I too have all sorts of tight muscles, bits that don't move, bits that move too much and bits in places they shouldn't be!!!!! So I have stretching exercises to do for my posture, back and neck. As it has been suggested I do Pilates, I have invested in a big round pilates ball to help with my core muscles which are non-existent! Trying to balance on this flat on my belly not only has caused much hysteria as it is impossible, but must be giving my vestibular problems a run for their money.

I sent a small gift and note to my employers saying that I couldn't see myself returning but appreciated their support. Today I received a Christmas card, gift token and a note to say they understood, but still hoped I may return sometime next year. How kind. So we will have to see. Quite a few months at least from being anywhere near confident or feeling OK to start work.

Jemma, you will be fine at the meal with your parents. Go for it! At least you will know how you can cope with such situations. Do let us know how it goes. We must try and not let this thing beat us - remember, this too will pass!

Thanks for the update on weather conditions Melissa and glad you are having better times at the moment.

Trying to cheer myself up - as never been like this at this time of year. Have just done my Christmas cake - a bit late in the day, but I thought I must try. Also, have got a CD playing Christmas tunes in the kitchen to try and make me feel more Christmassy!

Gary - great to hear from you. You sound like your neck is at the stage of mine and maybe is another set of symptoms. Anyway, Merry Christmas to you - hope your brother got back OK. Have a symptom free and truly enjoyable time - but do keep in touch when you can.

Maria - great to hear from you to and hope you have much much better and healthier times.

I'll post just before Christmas to wish everyone happiness.

Love and hugs Gloria xx


Hi all-

Feeling like my old self today. I am going to enjoy it while it lasts. I pray to god that I feel this good on Christmas.

Gloria- I know what you mean about always thinking about where did this come from. What is making it linger? When will it go away for good?

I am 100% convinced that my neck is the route to all of this evil. I pulled the muscle in my neck and have never been same. My physical therapist works on my neck. She always relieves all my symptoms. Keep with VRT.

Love, Melissa


Gloria, I too also have the strange pressure at the base of the skull at the point where the spine meets the skull, if you look at an anatomy chart that is exactly where the inner ear is located within the skull. I found regular full body massage helps with these strange head and neck sensations. Here's a bit of an update with what's been happening in my world, the last two weeks I have had a stomach flu which has left me feeling very weak and achy, Im just starting to feel better in the last few days, good thing is it didn't affect my balance whatsoever, spoke to my GP he thinks my Im still off balance due to my sinuses so Im taking a sudafed everyday to see if it helps. All in all I feel I am conquering this thing and next year I will overcome it, stay positive everyone....

DC


DC - interesting - I have said a few times that I think my ongoing problems are due to my sinuses and the post nasal drip I suffer from. Maybe if I got rid of that I would recover completely. Oh well!

Funny enough I had my last big relapse after stopping my anti histamines and it took months to get over that one. Needless to say I was back on the anti histamines quite quickly! I take them every day (benadryl) and use beconase nasal spray daily too along with a saline sinus wash spray but I still suffer from post nasal drip as the GP can still see it.

Well I have done my big shop this morning - 2 hours in Asda - no problems. Only problem was at the till when I spilled a whole bottle of washing up liquid, covered the checkout along with me and some groceries. Yuk! No staff to help and no tissue or cloths to clean up. Great - you gotta laugh!

Here's wishing you all a very merry christmas and I really sincerely hope that you all have a good dizzy free day.

Love Sandie xx

Hi all, DC - thanks for that reassuring piece of information. Whilst I am not pleased, but am pleased - if you know what I mean - that someone else recognises the same symptoms. I'm sorry that you have been so poorly with the flu - ghastly - as if you don't have enough to cope with! Is the back of the head neck thing fairly recent or have you had that all the time. You said that the flu hasn't caused you to feel dizzy. Have you been symptom free for a while now?

Sandie - I feel for you with the washing up thing - I too, have done similar but with a large pot of single cream!! You don't forget those instances in a hurry. I was in Tesco & the look on the girls face as if I had done it on purpose. Anyway, hope you are feeling OK at the moment & it lasts - especially over Christmas - what are you doing? Are you doing all the running around and cooking? Normally, I would be doing all that - in the past there would be 15 of us. I'd moan like hell at the time & in the run-up to Christmas, but I love it really. Anyway, have fun!

Melissa - are you up to date with your Christmas arrangements? Your kids must be so excited - I assume they still believe in Santa? Anyway, quick question - what VRT exercises do you do Melissa. It would be good to compare them to mine, although my therapist tends to change them every time I see her. I also have a balance pad which I have to stand on & close my eyes - soooo weird!! Sometimes I just manage it but mostly I fall over to my left which is my affected side.

Good luck for your Xmas Eve dinner Jemma - I really do hope you feel OK enough to enjoy it.

Just in case I get embroiled in all the Christmas festivities - I want to send the biggest of hugs to you all - Sandie, Jemma, Melissa, Maria, Gary, Cathy, Susanne, DC, Amanda, Niki and everyone else who has posted on pages 11 & 12 whilst I have been around. I pray & wish you all nothing but the merriest of Christmases and the best and happiest 2010. Thank you each and everyone of you for your wonderful support. Of course not forgetting Rich who set up this site and without which we would not be able to correspond - many thanks Rich & Happy Christmas to you & yours.

Christmassy hugs Gloria xxx


Gloria, Im not completely symptom free, still have some minor balance issues, but no dizziness anymore, I have been gradually getting better since day 1 and Im now at my 12th month. The pressure at the base of my skull has been on and off, its not always noticeable. My only form of VRT is my very strict exercise regime, which is lots of hard calisthenics done daily as well as my Jiu Jitsu training, which involves lots of jumping and rolling around wrestling, it really tests my balance.. I started taking another 3000mgs of gingko daily again after taking two months off it to see how my body reacts, it generally takes a while to kick in, so I'll update everyone on that in the weeks to come..

Everyone have have a Merry Christmas and a Happy New Year...

DC


Hi all-

I am on my 7th day symptom free! I just am so nervous that this will all come back. I pray every day that this is it!

I hope you all have a Merry Christmas and Happy New Year!

Melissa


Hi everyone:

just wanted to wish everyone a very merry and healthy Xmas. Let's hope the dizzies stay away until at least after New Year's! Melissa, hope the good days continue. Have a nice holiday everyone. Maria xxx


Hope everyone is having a nice xmas, I can't say mine has been great. I got through the meal out on xmas eve but it was a struggle and i could not stay longer than an hour and a half. I was really tired afterwards. I got up feeling exhausted on Xmas Day and just wanted to lie down. My boyfriend made the dinner which i managed to eat ok but then had to visit both sets of parents. It was really hard, felt really woozy and my ear was hurting inside for some reason. I am sure there is more fluid trapped in there. I could not really do much and was desperate to get home and lie down.

I seem to have been more off balance and woozy this last week and it is very diheartening. I even had a cry on xmas day because i just wanted to feel ok and i felt worse than ever.

Sorry to be so depressing. Hope everyone got through it better than me. I just hope that next year is better xx


Jemma,

I am so sorry that you felt bad on Xmas of all days! I hate this thing! I hope that the new year brings us all better days.

It is raining very hard here today. Whenever is rains I get off again. I will say that the off feeling is way less than it ever has been. I just get a swirly feeling in my head. Hard to describe. I'm sure you all get it though.

Yesterday I was able with no problem to get up early with my kids, drive into NYC for a NY Knicks game (basketball team) and then come home and make a dinner for my whole family. I even had a small glass of wine! I was tired at the end of the day.

I hope that this is gone altogether soon though.

Happy New Year!

Melissa

Hi all,

Hope Christmas Day was enjoyable for you. Jemma I am so sorry you felt rotten - you do hope that we might have got some respite at Christmas - such a special time. Well, for me we did do such a mad thing & drive down to my family in Devon & back the same day (300 mile round trip - total of 6 hours in the car). I was glad to do it especially to see my very old uncle of 90 who isn't in good health at all. I just felt if I didn't see him, then I don't think I'll get another chance. So arrived at my cousin's house which was full of people. Her kitchen is a little smaller than mine & what with all the noise, people chattering and trying to help serve dinner - I went into a complete spin & really felt sick. I couldn't believe it - not on Christmas Day I thought, but labs has no respect for anyone or anything it seems! Didn't really enjoy dinner and afterwards people played a board game which was even more difficult. Anyway, got through the day, slept going home in the car & today have felt so rough. Really bad head sways and headache. So, with you on this one Jemma - just have to believe that we will improve by next Christmas, because this one has been the pits!

Melissa - glad that you faired better and were able to enjoy a glass of wine. My neighbour on Christmas Eve offered me a glass of wine - I had a sip as I really felt it would be nice to enjoy just a small glass at this special time of year. Wham - one tiny sip went straight to my head and made me feel instantly more dizzy, so couldn't enjoy that either.

Well, nothing doing tomorrow, so will have a complete rest - next event to try and get to will be New Years Eve with some friends. Oh I do hope to feel a bit brighter by then, but have been saying that for weeks now.

Anyway, take care. Keep posting.

Gloria xx

Melissa,

Just seen your thumbnail picture of your lovely children. Taken yesterday I presume? Fabulous!

Gloria


Melissa - so glad you are feeling good and hope it lasts forever!

Jemma - so sorry for you but you must be proud of yourself for the fact that your actually made the effort to see your family! You did really well. It is very hard for people like us at this time of year when everyone is happy and you so want to join in but you can't. You must try and keep positive Jemma, it's half the battle if you can see that there is a light at the end of this very long tunnel and you will get there one day.

Gloria, your story about your uncle strikes similarities with me when I first got this thing. My old Nanna who was 93 got really ill and had to go into a care home. I was in the first throes of this illness and could barely stand up and I couldn't go and see her at first. As I started getting better I used to force myself to go into the care home to see my beloved Nanna. I was very close to her whilst growing up and loved her dearly and all I wanted to do was be with her. I only managed it a few times and then she was taken to hospital where she died a couple of days after admission. I didn't get to see her in hospital and that affected me badly. At times you feel like it takes everything away from you but I still have my memories and I should be grateful for that.

As for the wine - believe me - that gets better too - lol! I was like you at first - no alcohol crossed my lips - but now I can have a little drink and enjoy it!

For me, this year, christmas has been really good. I got my monthlies on christmas eve (nice timing) and that knocked me a bit and I have been really soooooo tired but the dizzies have been minor and my balance has been ok. I did all the dinner by myself and then did a spread (for a lot of people) at tea time and coped wonderfully! Probably downed a bottle of wine as well with no after effects - yippee. Back on track for now but that's what it's like for me. Just waiting for my next relapse but fingers crossed it might never come.

How did everyone else's christmas go?

Sandie x


Hi everyone

My xmas isn't getting much better. My ear was bleeding slightly yesterday which made me panic a bit. There is defnitely some fluid and stuff in there causing more problems. I never had any problem with my ears before all this!

Glad you had a nice xams Sandie and even managed wine, good on you! Gloria I think you're in the same boat as me - we just aren't up to enjoying social events yet. I have been so tired as well. Maybe being at home all day makes me more more woozy than going to work...although i cant say i am looking forward to returning to work. At least the snow is melting. Balance problems and snow dont mix very well do they!!

Has anyone tried using a Wii fit for VRT purposes? Thought about getting one but they are quite expensive.

I read something about bilateral vestibular damage. That is where both sides are somewhat damaged so it is harder to compensate because both sides have been affected. I wondered if that is what i have because it is going on so long and you can get really bad fatigue with it. Has anyone else heard of this?

Anyone, hope everyone else is ok, any plans for new years eve?

xx


Merry (late) Christmas everyone!

My holidays were decent.... didn't feel great but didn't feel terrible.

I bet most of you have already seen this video (I found it on another dizzy message board), but if you haven't it's definitely worth a look. Not only does it make you feel like you're not crazy, it also illustrates someone doing VRT... and for someone like me who has limited access to VRT this was a good resource.

http://www.nhs.uk/video/pages/medialibrary.aspx?Page=1&Filter=&Id=%7b7D156056-D344-496B-A773-7A459FD3B869%7d&Tag=Eyes%2c+ears%2c+nose%2c+teeth&Title=NHS+VIDEOS+%7c+Labyrinthitis%3a+Rebecca's+story&Uri=video%2f2009%2fAugust%2fPages%2fLabyrinthitis.aspx

If that doesn't work go to http://www.nhs.uk/video/Pages/medialibrary.aspx?Tag=Eyes%2c+ears%2c+nose%2c+teeth scorll down and click on the labs video.


Gloria,

Thank you for the compliments on my children. It is so nice to enjoy Christmas through their eyes!

I have to say that I have now been symptom free for 9 days! I realized today that I started a new nasal spray 9 days ago. Coincidence? Not sure, but if it works, I will keep using it. It is called Veramyst. Not sure if they have it in the UK. It is a prescription.

We are going away for a few days to an indoor waterpark. I sure hope I still am feeling well for this trip.

I gave up coffee when this all happened to me. Now when I try to drink it, I get dizzy. Does anyone else have this problem with caffeine?

Melissa


Hello to everyone. I used to post here a bit and have been reading again recently. I've had balance/dizzy problems since July 04, which has bad and better patches though never goes away completely. Took 3 years to get tested as a 40% defecit in balance function on the left side. Anyway, why I'm posting just now is to respond to Jemma's query about the Wii fit. I had a really bad patch this summer,was tripping up more than ever and very unbalanced, following a bad migraine. Spoke to a guy at my balance clinic, and he said the Wii balance board was being tested in London for balance patients. My lovely hubby bought one right away-we hadn't been sure if it was a good thing -and I have to say it's been terrific help for me. At first I did five minutes,then five minutes twice a day, and gradually built up to 30-40 minutes a day. I really enjoy it, and feel a massive benefit. Within about ten days I was walking much better, and have been less dizzy recently. My lads have PS2s and Xboxes which I could never watch let alone play. Having persevered with the Wii, which is very cartoon like rather than realistic, things have really improved. Some of the games really threw me at first but now, as long as I keep practicing, they're fine. From what I've heard not everyone finds it helpful, but honestly it's been the biggest step forward I've had in a long time. Sorry for the monster paragraph, I'm out of pracice at posting ! Very best wishes to everyone for the New Year, and thanks to Rich for keeping these posts going. Good man !


I had Labyrinthitis starting in January of 08. Its almost January of 2010. I still have pretty bad brain fog, and VERY SLIGHT feelings of floating/vertigo. Not "room spinning" at all, just the floating sensation. The problem, for me, is that I still have no sense of direction, still have the same headache I had 2 years ago (stiff eyes, clogged sinuses, strong pressure behind my nose/forehead, band-like feeling around my head), still have cognitive problems, and still have some bad anxiety/depression. I'm taking as much time off as I need to combat this thing. I'm wondering... where should I start?

I'm thinking of targeting the headache first, but I want your opinions of what I should do..

Thanks, John


John,

Have you tried vestibular rehab therapy? It works great to get your brain to compensate. Also, make sure that nothing is wrong with your neck. Your posture is key to how you see the world. Have you been to an allergist? You may have allergies and need some kind of allergy medicine to help unclog your your nose. As I stated earlier, I started a nasal spray (VeraMyst) and have found it to relieve 100% of my symptoms. Keeping your nasal passages clear will keep your ears clear. Not everyone on here agrees with me, but I had a very hard time dealing with the anxiety and panic that this brought on. I decided, with much consideration, to start taking Zoloft (an SSRI). It has helped tremendously with the anxiety. Now if I have moments of fuzzy head, I do not panic.

You have to be your own advocate in this battle. Keep pushing your doctors. If one doesn't listen or help you, switch doctors! I went through 3 GPs before I found the right match for me.

Keep the faith! Melissa


Hi Jemma,

You must get that ear seen to by your doctor, sounds like you have an infection going on there which of course makes you feel worse as regards the dizziness etc. The bilateral thing you are talking about is, I believe, quie rare and I'm sure you would not be able to walk at all if you had this. Jemma, the tiredness comes because your brain is working so much harder than a normal person's does just to keep you balanced. I do hope you feel better soon.

I did use a Wii a couple of years back and yes I would say it is good for your balance as you can do lots of balance exercises, it's a load of fun too! I had to stop because my daughter kept kicking me out of her bedroom! I read an article once about them being used in hospitals for other things (can't remember what).

Melissa - hope everything goes ok with the holiday break and that you still feel good.

Hi Kim, welcome back, it's coming up to 5 years for me next March and I seem to be like you - real bad patches, which get better and better but never completely goes away. I have a relapse every six months or so which takes me a few months to get out of but at the moment I am not so bad.

Hi John, maybe you should try and get your sinuses sorted out first as I swear that this is why I still have problems with dizziness and balance as I cannot get these sorted out! I take an antihistamine every single day of the year and I use a beconase nasal spray along with a saline nasal spray to clear out my sinuses. I don't suffer headaches as such but I do get horrible feelings in my head which usually seem to radiate from my nose/cheekbones. Apart from that I wish I could help but as I'm still floating about with this awful thing and hitting nearly 5 years I don't suppose I'm much use - LOL! I think the best advise might be plenty of walking and keep yourself healthy i.e. good food and don't overdo it.

Take care

Sandie x


Hi everyone and thanks for the replies about the Wii fit, definitely worth looking into by the sounds of it.

Sandie - I am taking some antibiotics now in case my ear is infected. I have definitely had a set back over xmas and wonder if i have a cold or other virus or if this is just another part of this terrible labs journey. Did you ever come across anyone with bilateral damage Sandie? From what I have read you are probably right and I dont have this as my balance would be worse and it seems to say you get oscillopsia, ie bouncing vision with this. You just wonder about everything though don't you.

Kim - sorry to hear you have been suffering so long, hope you have had some good periods in those 5 years. 40% loss sounds pretty bad. Did you have a diagnosis of labs and is that was caused the loss to be so severe? How do you cope with your life? Can you do normal things and work etc??

Maria - hope you had a nice xmas. I recall you said your caloric test showed a weakness in one ear, do you know what percentage loss you had? Also, did you hear of anyone having bilateral loss?

John - another long sufferer - were you diagnosed with labs and have all the tests etc? Do you feel you have improved over time? It is hard to know what to do for the best isnt it but i think Sandie is right, keep exercising and doing what you can and consider VRT.

Amanda - I have watched that labs VRT clip, it is interesting because you never see much about this at all. Glad your xmas was ok, did you go out anywhere? I ready an article on that Labs website in the Links section about the psychological impact of Vestibular Disorders, I cried as I read it because I identified with so much of what was said, here is the link...

http://www.theblackriver.net/wobbler/wobblerpyschological.html

Keep posting x

Hi all,

Sandie, really pleased that you have had a good Christmas & felt OK - it is about time things started to properly settle down for you.

Hi John - interested to read that you still have a problem with headache, tight band around the head feeling. I've had this for just over 6 months and get those symptoms too. I've always had the tight feeling and pressure in my head since this started. I am also a migraine sufferer & have been for many years, but these are not the same symptoms at all. Currently, I have been to see a neurologist who has put me on Amitriptyline. Whilst they are known to be an anti-depressant, he put me on them to try and break the cycle of the messages the brain receives from imbalance & all the nerve ending and muscles reacting too strongly. Sounds all a bit weird. I've been on 10mg for about a month now. May have helped a bit but still have tight band around head and headachey most days - although not as severe. The neuro wants me to up the dosage to 20mg. I did try just before Christmas but felt very dopey and I am sure more dizzy, so I went back down to 10mg. I am due to see him again at the beginning of Feb so we will see what next. Melissa is right too, to get your neck checked. Whilst it is not THE cause, but my neck muscles tighten and make everything worse. So I see a physio for that most weeks.

I do VRT exercises which also help, except they can also make my neck worse because of the quick head turning you have to do. Chicken & egg situation - you're damned if you do & damned if you don't!

For me the realisation is that clearly my balance mechanism has been badly affected. It is going to take time and the knock on effect is that it causes secondary issues like muscle, neck problems that actually hamper progress . So you have to treat those as well.

Jemma - Sandie is right - sounds like an ear infection you have. Have you been to the doctors yet?

Kim - the WII sounds a good idea and someone else suggested this on this site earlier. I have bought a special balance pad from my VRT physio. Certainly not as much fun as the WII but a good challenge and makes a good party piece to get all your friends to test their balance. Most cannot do the exercises which makes me think most people have poor balance.

Melissa have a good break.

John let us know what you decide to do and how you get on.

Love, Gloria x


Hi everyone

I did post yesterday but it seems to have gone astray so i will try and remember what i said.

I have got some antibiotics for my ear in case of infection. It keeps collecting with fluid which i think is due to eustacian tube problems even if the ENTs dont agree. They still crack and make noises. How are your ears now Gloria?

Sandie - i think you are right about bilateral damage. Have you come across anyone with it? I think you get oscillopsia, ie bouncing vision with this too.

Maria - did your caloric test tell you what percentage loss you have? I recall you saying one ear was weaker than the other...

Kim - thanks for the comments re Wii Fit, worth looking at then. 40% loss sounds bad, how do you cope? Have you improved over the years and do you work or do social things?

Susanne - how was your xmas? Did you get your balance tests sorted?

John - I think Sandie is right, the only thing to do is keep active and eat well. Have you had all the balance tests and is the diagnosis definitely labs?

Amanda - glad you had a good xmas. Any improvement for you? Watched that clip, it is quite interesting to see the VRT being done.

Keep posting everyone xx


Hi everyone,

Well we all made it through Christmas with some better than others. My Christmas was actually pretty good considering all the family get togethers we had. I did have my moments of light headedness and fatigue but pushed through it. I think we have all become good actors pretending all is well. A few days before the holidays I felt tired and more lightheaded and was on the verge of tears much of the time. Whoever said that this messes with your head is absolutely right! The last few days I felt better and was motivated to be more physically active. Well yesterday I overdid it and am paying dearly for it. My muscles are sore and I'm so tired. I don't want to do a thing. When I get this way it feels like I have a bit of the flu. It's not just a sore muscle thing but a whole body thing. It's hard to explain. So today is a resting day and hopefully tomorrow will be better.

Jemma, my balance tests might take a long time since they said a 4 month waiting list. Ridiculous!

Take care everyone.

Susanne good to hear you faired quite well through the festivities. You are so right about being good actors - I try to put a brave face on all the time. Not that I want to be reminding myself and others all the time how I really do feel, but my husband thinks I am actually over it now because I do a good job of appearing to be OK - and of course my reply, when asked by him how I am, is that 'oh I'm fine'!!!!!

I had to reply to your post though, because once again you and I seem to react very similarly. I have been socialising, going to friends and rushing around doing this and that over the Christmas, not just because I wanted to of course, but because I felt I must try and be normal and work through this thing rather than give in to it as well as for my husbands sake. We had a very late night (early hours of the morning) with friends yesterday, and today I feel horrible and so so achey all over, especially my shoulders and back. It is just like aching when you have flu, I agree. So, one night out too many. Next up is New Years Eve - so tomorrow day of rest.

Take care Love Gloria x


Hi Jemma, no I don't think I have ever come across anyone with bilateral damage. It is not very common for both sides to be affected . If you do have a virus, which you most likely do, you will usually have an increase in your dizziness/balance problems. However, I have a cold at the moment and my throat is really sore but I haven't had any worsening of symptoms this time as it doesn't always happen that way, sometimes it actually leaves you alone - yeah!

Gloria - you have hit the nail on the head with your balance board thing, even 'normal' people cannot do the balance exercises - so why do they bother making you walk heel-to-toe etc at the hospital when most people can't do them anyway?? Makes me laugh!

Was in town shopping yesterday, queueing for refunds at M & S, a meal then cinema (again). St Trinian's this time, one VERY noisy film, but I did OK. I have been back into town again today after a hospital visit with my mum. Back in again at the weekend to see Avatar for my youngest daughter's birthday treat. Busy, busy week and coping well.

You know you have to thank god for small mercies in that really although we have a life limiting condition, we do not have a life threatening condition. My niece who is only 21 had a stroke three days before christmas. She had taken me out for my birthday lunch the day before and was absolutely fine, it happened the next day. She is ok apart from her arm is still a bit numb but what a worry.

Anyway, take care everyone.

Sandie xx


Sandie, how terrible for your very young niece. I do hope she is doing well and nothing terrible is wrong. How did you fair in Avatar? Someone told me they heard it causes motion sickness in some people. Just wondering because my kids want to go see it and it is 3 hours long. Don't want to feel sick in there for 3 hrs!

I made it for 3 days at the waterpark not one symptom. I was tired by the end of the day, but that is all! YEAH!! I have now been 14 days symptom free. I want so badly to believe this is it for me, but I know that this labs is an ugly monster that rears it's ugly head at any time.

Jemma, did the antibiotic help at all? Have you taken any antihistamines?

Yes, the labs is the labs, but because of the labs we all hold our heads and necks very rigid as not to bring on dizziness. Therefore, we all have tight necks and tight neck muscles, that is awful for your vestibular system.

Gloria, keep icing your neck when it feels sore and when you have headaches. It works great!

Happy New Year everyone! I do hope that 2010 brings us all peace and no more symptoms!!!!!

Melissa

Hi everyone,

Sandie really glad you are busy busy and still feeling ok. Let this be the end of all this dizzy nonsense for you. I am so sorry to hear about your niece. Do you think there is anything genetic that could cause this at her age? Hopefully, as it is quite unusual, the doctors will pursue it and find a cause. How worrying for you all.

You are so right Sandie, it is when you hear things like that, it makes you feel quite humble to think we do not have these life threatening conditions. Nonetheless, as you well know, this does make you feel so so unwell. The last couple of days have been fairly reasonable for me. Less dizzy, but still feel not right in the head - if you know what I mean!!

Jemma - how are you doing? I have thought about you over the Christmas period as you have sounded so so down and not surprising. My ear is still giving me symptoms, although not as bad. I still get the fullness, ear ache and popping.

Overall, I have faired better than I thought I would over Christmas, but there is now a sense of anti-climax knowing the festivities are over bar the shouting and back to normality and the realisation that labs is still with me.

I will give a big cheer at midnight tonight and hope and pray 2010 will be the best year ever for all of us and that we see an end to all this head stuff!

(Melissa - another lovely pic - who is it?)

I wish you all a very Happy, HEALTHY, and prosperous New Year.

Love, Gloria xx


Hi everyone

I am still not feeling great. My ear is a bit better but still not right - I wonder if I have a bit of flu or a virus or something because I have been so so tired. I personally wouldn't take antihistamines ever again Melissa because I think that is what may have caused or contributed to me getting labs in the first place. I think I had an adverse reaction to medication, which it does say on wiki can cause labs.

Gloria - glad you had a good xmas and I like the picture, was that taken at your meal out the other week?

I have a funny feeling in my head, like a fuzzy horrible feeling and my brain feels confused sometimes, so weird.

Anyway I hope everyone has a nice new years eve and I wish everyone a healthy and labs free new year in 2010!

love Jemma x


Hi Melissa

I haven't actually been to see Avatar yet. I'm going this weekend. Mmmm, I'm taking my daughter and son and they want to watch the 3D version, so don't really know how I am going to fair with that, but I'll give it a go. I might just have to sit with my eyes shut all the way through!!

Fingers crossed for you Melissa that this is the end of your journey with Labs!

Gloria - I have been wondering about the genetic thing. They are saying it was caused by her using the pill. She is my brother's daughter and I also have had problems with the pill and can't use it. My problems were with my legs and I ended up with a varicose vein because of it. I only actually took it for a year and then tried the mini pill after my son was born and had the same problems. Anyway, hopefully she will be ok though she still has numbness in her arm and hand.

Today, I have been slightly off. My throat is so sore and I have slight ear pain. My balance has been going a bit but just for a second or two. But, I have been shopping at a few of the out of town retail parks today buying a lap top for our daughter. She saw one in Comet, it was out of stock (apart from the display model), and it was like 'I neeeeeeeed that one', you know the story! But, we did manage to get it for her eventually!

So, the end of another year - wishing you all a very Happy New Year - I'll probably be in bed snoring my head off but for those of you who are doing anything nice I sincerely hope you feel good.

Sandie xx


Gloria-ha ha ha, that is me and my best friend Tricia on our prom day. May 1989! Yes almost 21 years ago. I am the one is blue. I found it and scanned it into my computer. Thought it would be funny to use as a profile pic on Facebook.

Today I am a wee bit off. Just a little bit swirly in the head. I am due for my period any day now, labs seems to rear it's ugly head around that time of the month for me. Hopefully, it won't be as bad as it has been in the past.

Jemma, right before I got labs, literally two weeks, I had pulled a muscle in my neck. My doctor prescribed 1000mgs of naproxen (prescription strength Aleve) twice a day and Flexirill (muscle relaxant). It does say on Wiki that medications, especially aspirin products, can cause labyrinthitis. I often have wondered it that contributed to my demise. I am not too sure that an antihistamine would cause it though. Have you done any research on it? They may really benefit you. Maybe even just a nasal spray.

Sandie, I do hope that your neice fairs well after stopping the pill. I took the pill in my twenties with no problems. Then in my thirties, I could not tolerate it. Made me so sick and cranky. I hope that this cold does not knock you down. Have a Happy New Year everyone! Thanks for listening to my ranting on here. It is a Godsend!

Melissa


Just to reply to your comment Melissa, I do think some drugs may cause labs. I have read erythromycin antibiotics can cause vestibular disorders and i have had a few courses of that in the last year. Also I had a two or three antihistamines over the weeks leading up to this in march and april and felt weird but didnt think much of it as each time it seemed to pass. Over the easter weekend i felt off like a cold or something and my hayfever was quite bad so on the tuesday after Easter i took another antihistamine and then the next day felt really off balance and tired. I tried to carry on working etc but things got worse and worse over that week until i was suffering extreme anxiety symptoms and had to stop work. I was really off balance and have never been right since.

My mouth at the time was suddenly so dry and my tongue was coated white. This took about 3 months to resolve and i read that the side effects of antihistamines can be anxiety, dry mouth etc etc so was convinced i had a bad reaction. Also since then i have never had any symptoms of hayfever all summer which is very odd as i normally suffer all summer with hayfever and had been this year up to the point this all happened! I agree that it seems unlikely that antihistamines could cause labs but i will never take one again, it isnt worth the risk for me.

I have noticed that other people on here have mentioned their symptoms started after taking medications so i think that could be a possibility. Doctors will never admit it though!

HAPPY NEW YEAR EVERYONE X


Happy New Years everyone!

I am definitely hoping to leave the worst of this behind in 2010.

For all you Brits - I'm a Yank who has somehow become a Dr. Who nut... I am super excited to see the New Years Day special when I can get it over here.

Something I discovered today - I have been taking Ginko regularly for the last 2 months. Since I have been on break the last 2 weeks my schedule is messed up and I haven't taken my vitamins regularly. The other day I got a terrible headache and couldn't figure out why. Today I got another one and realized the common denominator was that I didn't take my ginko both days. I guess it really does affect the blood flow in the head.

Melissa, you mentioned icing your neck. I have been doing this because it stays stiff and sore all the time. Does anyone else notice that the dizziness is terrible after icing your neck? I was thinking this is probably because compensation requires your muscular system to take over more in the balance process.... and so numbing those muscles makes things even harder. Anyone else notice that?


Jemma, If I were you, I would never take another antihistamine either. I myself, will never take Aleve or Naproxen or Flexirill again! I will never lift a weight or anything over my head again!

Amanda-For some reason ice really helps to stop any dizziness and headaches I get from this. I tried a heating pad and it made me so dizzy! By the way, what is Dr. Who?

Melissa

[You know what "Star Trek" is? Well, "Doctor Who" has an equivalent place in modern British culture. It's currently one of the most popular British tv shows, and it's been running on and off since 1963. It's about an alien "Time Lord", known only as "the Doctor", who travels through time and space righting wrongs, usually with a mixture of fierce intelligence, humour, and a fair bit of bumbling. Every few years he's mortally injured by a particularly horrible foe and "regenerates" into a new incarnation played by a new actor. Tonight the Ten Doctor regenerates into the Eleventh Doctor - Rich]


Hehe... very nice explanation Rich. I'm not sure how I feel about the new doctor being younger than me (even if it is only by a year), but I'm willing to give him a chance. Can't wait to see who knocks four times!


Rich

Thanks for the explanation. I have never heard of the show. They should have Dr. Who save all with Labyrinthitis!

Gloria- Talk about lovely profile pics. You look great in yours! Funny how on the outside we all look like the picture of health...but on the inside we feel quite the opposite.

Yesterday I had a headache and a little bit of a swirly head. Today I feel fine. No symptoms at all! Please God in Heaven, make this the end. Amen

Melissa

Well, 2010 finally here - again, a very Happy New Year to everyone. I don't know what I was expecting. A miracle to occur on the 31st Dec as if a line would be drawn under the terrible year of 2009 and that I would wake up on 1st Jan 2010 and would be back to normal . Ha Ha Ha!

Celebrated the New Year with friends and felt reasonable then yesterday have got a wretched sore throat feel really off, dizzy and sick. So, no respite just yet!

Thank you for your comments on the piccy! It was taken at my hubby's birthday party just before Christmas. So many comment on how well you look, don't they?

Melissa - I did think that was you in the blue!! I had a similar dress for a party I went to at that time as well! Where did those years go?!!

Jemma - how are you doing? Are you feeling better? If you had a cold/virus too, then I now understand how it sets you back.

Anyway, I'm back to bed I think.

Take care. Love Gloria xx


Gloria - sorry you are feeling bad again. I have been so so tired all xmas and here it is over and back to work tomorrow, which i am dreading. Especially with all the ice to contend with! I keep getting hit with this awful drowsy fatigue and I can hardly get up in the morning, I dont know how I am gonna cope next week.

I dont know if I have had a bug or if this is just part of labs. My ear has been very clicky and snappy but this seems to be a permanent thing now. I have managed a few busier restaurants with my boyfriend this week without feeling like I'm going to collapse so I am trying to see that as progress but it is day by day with this.

I, like you Gloria, did hope to wake up on 1st Jan 2010 and not to feel dizzy anymore. I have to say I did not feel too terrible new years day and was grateful for that!

This is such a long haul, even people with terrible things seem to get over them much quicker. We just have to keep hoping it will get better this year.

I have my neurology apt this week so will be interesting to see what happens although I am not holding my breath for any answers.

Hope you feel better soon Gloria xx


Hello Everyone

Thought I'd just call in and say Hi. Sandie and Maria! Yip I'm ok. Still in one bit I'm pleased to say. I hope you had a fab Xmas and New year? Mine was fairly uneventful ( No squabbling with women in Asda this year :)

Well I guess as far as labs is concerned I'm more or less off the hook. I have been left with myokymia but it's very slight and I hardly notice it. No dizzy stuff, headaches, anxiety etc etc etc... So I feel pretty damn lucky.

Don't give up everyone. I promise you can still get rid of this bl**dy awful thing no matter how long you've had it.

Anyway I'm supposed to be making dinner but I've been up here sciving with a glass of vino. Sandie and Maria let me know how you girls are doing!

Lots of love KatieXxx


Hello again. Hope everyone is doing okay, though it sounds like some people are having a rough patch. Boo hiss.

Jemma, Yes I have a job, clerical/reception in a busy hospital unit, four mornings. I'm pretty wiped out at the end of a shift, but the people there are really good to work with. I've had a few long spells of sick leave over the years unfortunately, but am doing okay at present. My dizzy/balance problems are very up and down and unpredictable, which is hard, as you will know. One spell in particular with constant dizziness was really depressing and I had to work hard to get back from that. I couldn't think straight and had trouble following a conversation, but persisted in going into shops and going for walks and the like. Some books from the library helped, like " Feel the Fear and do it Anyway," by Susan Jeffers. Took a long time to read with rubbish concentration. Things picked up after a while. I'm not wildly sociable and don't like noisy, busy places, but enjoy being outdoors, and going for meals, which I know some people find hard. Sometimes over the years I've had really good spells, and have flown to Canada and Australia with few problems. Then something will set me way back, maybe a bug or migraine, and wham ! down the slippery slope again. Snakes and ladders. Pretty gutting, though the last couple of times I've managed to be more philosophical and think things have improved before so they will again. Really wish I had more stamina.

Sandie, hope you enjoyed Avatar. We saw a 3D version last week which was terrific. It was the first visit to the cinema in ages, really enjoyable.

Katie, thanks for writing that things are good for you now. That's really nice to know.

Best wishes to all.

Hi all,

Great to hear from you Katie and Kim. When I first started on this site, I did go back to read your posts. I am so so pleased that you are both doing great and continue to give people like me and others hope with this. Especially, today as I really feel unwell. I am quite sure I have a virus. The sore throat has died down a bit, but feel so weak and dizzy. I think I will get that book Kim. Sounds like an adage I read years ago which was if you confront a fear or something you are uncomfortable with every day, you will feel like you can deal with anything - and I assume that is the theory of this book. Also interesting to hear that you have also flown. Not that I have any plans like that yet, but do wonder if flying affects you once you have/had labs.

Jemma - thank you for your wishes and hope you get on OK with the neurologist. It will be interesting to see what they have to say.

Here's hoping for better days.

Love, Gloria xx


Hi everyone,

Happy New Year to you all.

Jemma, sorry that you still feel so bad but you have made a small improvement so that's good - small steps forward!

Katie - hello to you! So glad you are over all this c*** and lovely of you to drop in and let us know how you are! How did hogmanay go for you. My daughter went back up to Edinburgh the day before NYE as she didn't fancy spending it with us (nowt going on!). I spoke to her on NYE but haven't heard from her since - wondering if she's over it yet -lol! Anyway, hope things stay good for you - lucky thing you!

Kim - I seem to be the same as you - good for a while (but never 100%), then back down that slippery slope again.

Haven't been to see Avatar yet, the weather has kept us in. We have quite a lot of snow in the north east of england and the roads have not been gritted at all. Our car got stuck on the main road a few days ago and the entrance to our estate is a bit of a slope. Jeez, we have a brand new Volvo with all this anti skid stuff and does it work - NO! So anyway we have been kind of sticking about the house and not going out unless necessary. I haven't been too well anyway, this cold and sore throat is still hanging on and I think I have had a touch of flu as I have had aches and pains even though I had the flu jab! We were supposed to be going yesterday but I cancelled that because I didn't feel up to it. It's my daughter's birthday tomorrow so I said I would take her after school but the temperatures are dropping so much I don't really want to risk it - with no grit the roads are lethal. My husband and my son have both fallen down and really hurt themselves. My daughter's school is closed today so if it is still closed tomorrow I might take her through the day before the big night freeze sets in. Oh, and I won't be seeing the 3D version as Melissa said it causes motion sickness and I have heard other people say it too so I'll just stick to 2D, thank you - lol!

Good news, I suppose, this virus I have, which has been quite a heavy one - my throat has been so sore and my nose will not stop running - has not increased my symptoms too much. I am having slight imbalance but it is bearable.

Gloria, that is a nice photo of you and your hubby. You do look well but don't we all?

Take care

Sandie x


Hi all- Feeling a slight bit off today. It is that time of the month though. I'm trying to look at it as just another symptom of PMS now. LOL It is so hard to have even the slightest amount of symptoms, because right away I think, oh my God, please don't let this return. I'm sure that I will get back to where I was, as soon as my time of the month is over.

Gloria-I hope you are feeling better. I live in dread of getting a cold. I wash my hands so many times a day now.

Jemma-I hope your appointment with the neurologist goes well. I was on the fence about whether or not I should go see a neurologist. Let me know what he/she says.

Keep the Faith! Melissa

Hi all, Melissa - thanks for your wishes. I still have a sore throat and very achey but no cold. I think the glands in my neck are up too as all the muscles in the base of my head & neck are so painful again. Hope that you are feeling a little brighter today. You are so right - I wash my hands all the time, disinfect everything daily, but maybe I've been a bit too precious about keeping things too clean because here I am having picked up something!

My husband has gone to buy me a belated Christmas present - a Wii Fit with the balance board. We are having to buy the console as well as we didn't even have that. A bit costly, but I think even he is prepared to go to any lengths to make sure I get rid of this thing! I said he can use it too - to help get rid of a little Christmas excess!!! As this calculates your BMI, weight etc - I think he is a bit scared, having convinced everyone he is fit just as he was 20 or so years ago LOL!!!! The male ego!!

Anyway, on Kim's report, I'll see how it goes. It looks fun anyway.

Jemma - have you been able to return to work - the weather in your area seems awful & you too Sandie? Let us know how you are.

Keeping the faith - this too shall pass!

Love & hugs, Gloria xx


Hi everyone

kim you sound similar to me in that you are working part time but so tired afterwards. I just have to lie down for the evening once I get home from work. I do hope I will get some good patches where I feel like travelling. My boyfriend has hinted he wants a holiday this year but I have said I cannot commit to anything right now.

Gloria - sorry you are feeling rough. I am still tired but dizziness is no worse. My boyfriend has a bad sore throat so I am just waiting to catch that now, great!! Let me know how the wii fit goes, I am toying with the idea of investing in one.

We are two feet deep in snow here in the north west. I went to work yesterday and coped but haven't made it to work today as we can hardly move our cars and it is too dangerous to drive. I am also concerned my neurology apt tomorrow will be cancelled due to the weather although I think it is starting to head south soon.

Hope everyone else is ok xx


Of course I ended up with a small stomach bug last night. Right away the swirly head, rubbery legs and walking on a funhouse floor feelings all came back. Not as bad as before, but still they make me anxious, as they remind of a rotten time not so long ago.

Today I woke up and it was all I could do to get the kids off to school. I went right back to bed. I am trying to have some tea and a light breakfast. Think I am going to go back to bed. That always reminds me of this summer when I was so sick with Labs. I just have to remind myself that the worst is behind me. (I pray)

I can't believe that this damn labs could keep rearing it's ugly head! It is hell!!!

Jemma I hope you can get to your appt tomorrow. Where in the North West are you? I live in the North East of the US.

Gloria, let us know how wii fit is. We have a wii, maybe investing in a wii fit would help us all.

Melissa

Melissa - you poor thing - I am so sorry. Isn't this thing the pits! I couldn't believe it last Saturday when I woke up with a sore throat and the worst dizzies since a few months ago. The last couple of days have been like you - return of the old symptoms. I don't know if it is because we recognise them and therefore think they aren't so bad and panic less or whether, indeed, they are less severe. Whatever, I HATE IT! Even though we all know it can come back (if indeed it ever went away), if having a few good days or longish symptom free spells, it is such a wicked thing to know it really hasn't gone away. How many times do you have to have these relapses before it really does get better? Now that seems to be the million dollar question!! Anyway, wish you speedy recovery back to better times.

Jemma - this weather is horrendous. You are right - we here in the south of England are in for it tonight. I do hope you will be able to get to your appointment with the neuro. Is it far from you? I understand about not being able to commit to thinking about holidays just yet. Me, too. I do so want a break - maybe we will have a short break in March/April but just down to Cornwall which is lovely even if the weather isn't so good. Cannot even think about going abroad - flying scares the hell out of me to think it may make me worse.

At this moment, Andy my hubby is sitting amidst instruction booklets, cables and boxes of equipment!!! Think he will be there in the morning. Good job he is working from home tomorrow because of the weather - he will need the time to sort out how to work this thing LOL!!!!

Hope we all feel a bit better tomorrow.

Love, Gloria xx


Hi everyone, I was diagnosed with Labs last Jan and its quite interesting to read other peoples stories about this condition, it was the scariest thing I ever experienced, the symptoms lasted a couple of weeks and gradually eased off but reoccured again 6 weeks later.

I discribed the symptoms to my doctor as a feeling of drunkiness without the alcohol - like walking on marshmallows and my eyes spinning around in my head like a slot machine which I no control over.

I remember opening my eyes in the middle of the night and feeling very dizzy but when I got up the next morning I fell into the wardrobe its quite funny now looking back - don't have any idea how I managed with my 3 children because I couldn't drive and had to feel my way along walls and radiators.

In the last few days I have begun to feel dizzy again and am dreading what's coming next, I am sitting in work just now feeling very nauseous, I have made an appointment to see my GP on Friday afternoon.

I like everyone else am really glad I am not alone with these symptoms, I have had ear promlems from childhood but never felt any kind of dizziness before, Im just wondering now if this is going to be an ongoing thing for me !!

Can anyone tell me what the down is with car insurance?? will they cover for this type of thing - do I declare this in advance etc ..

Thanks a mil,

Sandra D


Hi Gloria, I was lucky, two teenage lads in the house to set up my Wii, otherwise I'd probably still be working it out ! Do hope you'll enjoy it and find it of benefit. Tell Andy my husband loves the Mario carting on Wii and has a wireless link to play with workmates. Lots of swearing when they race ! Sorry to hear you and Mellissa feel bad again, that's so horrible. Hopefully things will improve soon.


Hi all

Well I saw the neurologist and it was a lot more helpful than the useless ENTs. He basically said what we all know - the tests are not accurate. The caloric test only tests 20% of the balance mechanism and he said you have to go off the symptoms. He said in my case the symptoms all suggest a vestibular problem from the ears and not anything neurological. He basically said he is fed up with ENTs not doing their job properly and sending everyone to neurologists for inner ear problems!

He spent over half an hour with me and I cam away feeling happy that someone has finally confirmed what I have been thinking and not just sent me away saying it is nothing!

He is going to ask my GP to refer me to VRT but he is not sure how quickly or how local this will be.

Melissa - I live in Cheshire about 30 mins drive from Manchester (which is where my apt today was).

He basically said I probably had a virus and it may have affected both ears in my case. He said he thinks I will get back to normal but it will take time and he said people who damage their balance mechanisms when they injure their head can take 12 to 18 months to recover so it is likely to be a similar time for this although obviously nobody knows for sure.

I still have a lot of snapping and crunching in my left ear which nobody seems able to explain properly and it does feel horrible.

All in all the neurologist was a lot better than the ENTs but as we all know there is no quick fix for this disorder.

Another thing I forgot to ask him about was visual migraines. For the last 7 years or so I have had roughly one a year but since this happened I have had three. I dont think it is the cause of the ear problem but it is weird. Out of the blue your vision goes all shimmery and everything is very bright and jagged and you get a blind spot in your vision so you cant see properly. It usually lasts about half an hour and leaves you tired with a mild headache afterwards. Has anyone else had anything like this?

Take care all x


Jemma-Finally good news!! I feel so happy for you! It also gives me some relief to know that it takes 12-18 months to get over the labs from a head injury. I hope that this has given you some peace of mind. It feels great to finally be validated. The ENTs really should get to know labs a bit better, don't you think? Get yourself into VRT ASAP! It has helped me tremendously.

Been slightly off last three days. Got my period and ate something bad, which gave me food poisoning. So I went to bed at 9 and slept until 7 this morning. I feel better, not as swirly headed, but I know by this evening it could hit again.

Sandie D - I know that Labs can recur if you are sick. It shouldn't be as bad as last time.

We will get through this! We will get through this!


Hi Gemma, the Migraine you are describing is called a Classical Visionary Migraine and I have suffered from these for the last 20 years, I'm sorry to say they are still with me andits very difficult to explain them to anyone else.

Th first time it happened to me I ran out of my office in a panic because I though I was going blind,

Some say they are hormone related but again they tell you that anyway - the headaches after the vision is restored are just awful.

I've never actually spoken to anyone else suffering from this type of Migraine, hopefully your's won't last as long as mine have.

Poor you.

Sandra D x

Hi all,

Jemma - am SO SO pleased that you managed to get to your appointment. The weather is really bad - we have had horrendous snow last night and all today. This is quite unusual because although we live just outside London, it doesn't really get that much snow like in the north of the country or the south west and of course where you live.

Anyway, doesn't it make you feel better to have what I call proper answers. OK - it might go on for a long while, but at least you have some guidance and benchmarks. As for your migraine symptoms. Well, I have had migraines all my life starting from the age of about 6 or 7 when they were stomach migraine (stomach sickness). Progressed to bad, one-sided headaches - really painful just before and after my periods. This was pretty much the pattern until I reached my late 40's - then I started to get this what they call 'aura' just as you describe. Blind spot, jagged edged blurry light which lasted for about 10-12 minutes. This was then shortly followed by my migraines head pain. I have special tablets from my doctor especially for migraines. They are called Zomig and are one of the triptan family which is special migraine medication. This was because over the counter pain medication didn't do anything for the pain any more. The jagged edge thing lasted on and off for a couple of years but haven't had that so much lately - only the migraines. Although, they haven't been so much since having this labs thing. My migraines can last up to 3 days and I get about one every 2 weeks. Isn't life just wonderful!!!!!!!!

We have got the Wii up and running. Probably because it is new - it is addictive and really good fun. The balance games - like slalom skiing, wake-boarding are brilliant. The only thing is I think I have overdone it and feel really bad today - and of course, have developed a migraine!!! Andy has got hooked on the golf games. He is really good at it - quite unlike his games in real life - but I haven't told him that LOL!!!! So thanks for the encouragement to get one Kim - you should be on commission!!

Sandra - good to hear from you and Melissa - glad you are feeling a little better, but I know what you mean - you don't get your hopes up too high do you?!! But what can we do - sink or swim and as hard as it is sometimes - we have no option but to swim. Plus thank goodness we have each other on this site - you are all my saviours.

Jemma - let us know about your VRT - I still do mine although sometimes I wonder if it has made any difference. I know it does help, but it is something you have to continue and not give up. The brain can take a while to learn to re-adjust and compensate - I think we all realise that!!!

Melissa - you're right - we will get through this we will, we will, we will AMEN!

Love and hugs, Gloria xx


I am so dizzy tonight, I had to take antivert! I haven't taken it since late July. I went to my son's basketball game tonight and I felt sick. I had three wonderful weeks without symptoms. It just proves that this awful labs is not linear. Just when you think you are in the clear, BAM!

I just hope the recovery is better.

Melissa


Sorry your feeling rotten again Melissa. This thing just never seems to resolve does it! I have been really dizzy today too. It is scary because you always fear you're going to get worse and you can never switch off from it...

You are right about feeling validated when someone finally agrees with you and tells you what is wrong, even though there is no magic cure, it is a relief because i felt like they thought i was exaggerating or something.

Gloria - your Wii Fit sounds fun. Hope it helps. Are you still having your VRT?

The migraine thing is interesting. The first time I had one I was working in catering doing a summer job between uni years and I did not know what it was but I carried on without saying anything to anyone even though I could hardly see the customers. I never went to my doctors about it because I did not think it was too serious and i hate going to doctors anyway. I am not the kind of person who goes to the doctors with everything which is why this whole things with doctors has so annoyed me because they just haven't taken me seriously enough and to me this is the worst thing i have ever experienced in my life. I just hope they don't become too regular.

Feeling tired now - back at work but isnt this weather crazy! It was -17 where i live last night!

How is everyone else doing?

Jemma x


Gloria - Your post from a few days ago describes this disease exactly when you said how many more times do we have relapses till this thing is finally gone. I'm always cautiously optimistic when feeling better since you never know when the next setback will come.

I must say I've been feeling quite a lot better the last week or so. Although I had a short set back on Sunday when lifting some light weights. I felt weak and nauseous and wiped. Last week when we were taking down the Christmas decorations my husband was winding his way around the tree taking the lights off the tree. He said he was getting dizzy and nauseous when I told him that is what lab feels like. He admitted it didn't feel good.

Jemma - So glad the neurologist gave you some valid information that you can understand and work with. Wow, he actually spent half an hour with you.

My daughter has a wii sport. Will that help at all with the balance. Wii sport doesn't use a balance board but we can play tennis, bowling, golf, boxing, baseball.

Talk to you all soon.

Susanne - good to hear from you and really pleased that you have had a good few days. Oh boy does this thing test your patience. Like Melissa, have really had a bad setback. Went out today - despite the weather - I somehow feel better in open spaces than indoors. Really bad dizziness and overwhelming nausea. Haven't felt that bad for 3 months or so. Not that you would wish this on anyone else, but my husband felt dizzy and sick when he was playing one of the balance games on our Wii - so like your hubby, they realise how we actually feel - like that most of the time not just an instant.

Although the balance board games are good on Wii and great fun - I think any of the games you play where you are concentrating but having to keep balance is good - especially the fast ones like tennis and baseball.

Cannot believe the temperature where you are Jemma! -17, I thought we were bad at -5 last night. Maybe the cold weather has something to do with feeling more 'off'? I also wondered if the brightness of all the snow was causing my symptoms to be worse.

To add to our woes - my hubby has just had a phone call to say his 83 year old mum has just been taken to hospital as she slipped on the ice & has either broken or dislocated some bones. Has to have an operation tonight to re-set them. We told her not to venture out in this weather - she may be 83 but oh boy so stubborn!

Melissa - hope you are feeling brighter too!

Love Gloria x


Gloria - sorry to hear about your mum in law, hope she is ok. This weather really is hard going, especially for us dizzies and the elderley who in some ways probably have lost some of their vestibular balance functions too. All my good wishes to her.

It is -13 already tonight! Electric blanket on!

Susanne - glad you have felt a bit better. You deserve it!

Today and yesterday i have been using a balance board and it really does make me feel bad, maybe why i felt more dizzy today. It is a simple thing just to balance on but when i get off my eyes feel blurry and i feel really dizzy and a bit queasy and my muscles are a bit trembly. I wondered if this is good VRT and is helping me or if I should stop because it makes me feel worse. What does everyone think?

xx


Hello there. Jemma, my rehab chappie said the vestibular system needs "stretching" daily to improve. This means doing things that make you a bit uncomfortable, but not overdoing it so that you feel more ill. It's a hard one to judge, I find, as I'm never sure if the extra exercises are making me feel worse or if it's just a bad day/ couple of hours. Sometimes I can tell by a certain feeling in my head that I need to stop doing something. Glad to hear your neurologist knew what he was talking about. It makes such a difference. Before I got tested, a couple of consultants said to me, " It's probably nothing. " Err, hello ? I wouldn't be asking for help if I didn't have a problem. It's not how I get my kicks ! Gloria, sorry to hear about your mother in law. We ask our elderly neighbour if she needs any shopping. She'll say she's got everything, then you see her wading through the snow with shopping bags. An independant streak a mile wide. Glad you like the Wii. It sounds like Andy overdid it a bit ! I find if I go on the tilt table more than once it makes the floor move for a while after, which is a shame,as I really like it. Will keep working on that. My working week ended today, which is a good thing, I could really do with sleeping until Monday. ( Won't really, it'll only make me dizzy.) It's been very busy as some people couldn't make it in because of snow. We live near a main road so once we got on that it was reasonable. All the nest to everyone.


Yes, that should have read, all the best to everyone. Well spotted !


Gloria- So sorry about your Mother-in-Law. I do hope the operation and recovery go well for her. My Mother-in-Law nearly blew away the other day. She lives in an apartment between the bay and the ocean. So it is always very cold and windy. She had to flag a car down for a ride back to her apt. She is 81 years old!

Well, I have come to a new low. Today I actually cried at physical therapy. When describing my dizziness and how I had to take anti vert again, I broke down into tears! God this thing just plain SUCKS!!!! She thinks it could be hormonal, because it seems to be hitting at that time of the month. She suggested I go see my gyno. Ha, I called the gyno's office and guess what? She no longer is with the practice. I actually hung up and cried again. Did I say this thing SUCKS yet?

I contacted a nutritionist. Thinking maybe my diet is making this worse around that time. You know how they say salt intake can make you retain water even in your ears? Well she had nothing to say. Had no idea why the labs would resurface as she put it during my period. Dah! I wish to god someone out there would just specialize in this disorder.

By the way, there is such a thing as migraine associated vertigo. It is a type of vertigo that is really a headache. Only you don't have pain, just vertigo. You migraine sufferers may want to look into it. Google has become my best friend. My husband even jokes and says I got my medical degree off the internet! He calls it IU like Internet University.

At least I have learned more about this that most of the Dr.s I have seen with a real medical degree.

Okay, enough of my ranting. Pity party is over! Tomorrow is a new day and I will be damned if I let this get the best of me!

I'm keeping the faith. Melissa

Melissa - am so with you on this. I am going through a bad patch again. My physio who I saw today said it does take a long time for the brain to compensate. If we get a mild or severe virus, pull a muscle or have hormone fluctuations apparently all affect this condition because the balance, eyes and muscles are not working in tandem - not until the brain totally compensates. Back to the patience and time thing again.

Melissa, I am so sorry you feel so down to the point where you can't stop crying. It does get to you like that. You try and be strong all the time and it just doesn't work. We are all only human and can only take so much. How you cope with having a young family as well - I do so admire you. It would be nice just to see real progression all the time with this and not for a while for it to revert again - so unfair. Already discussed the migraine vertigo thing with the neuro. My symptoms do not go with that despite the fact I am a migraine sufferer.

My friend sent me a lovely set of photos with 45 lessons of life. I'm not into a lot of slushy sentiment, but I do have to say a few of the adages were quite pertinent - so I'll list them and hope they may give some comfort.

1) Whatever doesn't kill you really makes you stronger. 2) Frame every so called disaster with these words - in 5 years time will this matter? 3) Time heals almost everything - give time, time. 4) However bad a situation is - it will change. 5) Believe in miracles. 6) If we threw our problems in a pile and saw everyone elses - we'd grab ours back. 7) No matter how you feel - get up, dress up, and show up. 8) The best is yet to come!

So - we will get over this, this too shall pass and we will become stronger - it may take a little while but we will get there!

Thank you for your concerns over my mum-in-law. Not long back from the hospital. She had to have a couple of pins put into her ankle to hold the bones together and has her leg in plaster to her knee. This will be a long haul as broken bones are for anyone of her age. So will be in hospital for a good couple of weeks - at least she can't get up to any more mischief!

Love to everyone Gloria xx


Gloria-Thank you so much for the words of encouragement. I enjoyed all the adahes you shared. I may have to print them up and put them on my fridge.

Today I was much better. Only proving that the hormone fluctuation is my number one enemy. Now I have to figure out how to solve it. What can I do to help eleviate some of the symptoms that I get during my monthlies, as you Brits call it. LOL Does anyone out there have suggestions?

I was not at all weepy today. I guess because I can see that I am feeling better and this last bout of dizzies wasn't as bad as last time.

Gloria, you mentioned that is was snowing by you. I have a hard time when it rains or snows. Something to do with the barometric pressure I think. Maybe that is why you feel bad.

Hope everyone has a great weekend. Thank you, thank you, thank you from the bottom of my heart.

I can't believe that some of the only support I get comes from across the ocean. I would love to meet you all someday.

Keeping the faith!

Melissa


So... I am hesitant to say this because I don't want to jinx anything, but I think since embarking on my own brand of VRT I have started feeling slightly better. It is definitely no drastic improvement, but things seem a little less fuzzy. My biggest complaints remain a feeling of pressure/tingling at the bass of my neck and sometimes up the back of my head and just an overall fuzziness and heaviness in my head... especially on movement.

I may have said this before but let me reiterate - you all are stars for getting through this. From personal experience, heart disease is nothing compared to labs. We face all of this pretty much alone and no one wears ribbons or does walks for us. My family was so supportive of everything to do with my heart problem.... but they just don't get labs. We look fine and it won't kill us so why should we complain? Unforunately no one understands how much an impaired quality of life will effect them until they experience it.


Hi everyone

Amanda I couldn't have said it better myself. Vestibular disorders are just not known about and even the doctors don't seem to know much about them let alone the general public. I really would like to raise awareness for this and maybe we should try to when we feel better. That Ilia and Emma website is a such a godsend as is this forum. I read an article about the psychological impact of vestibular disorders and the expert who wrote it said in his experience (and he has dealt with cancer sufferers and serious injuries) vestibular disorders are the most overwhelming because the symptoms are so scary and so never ending for the sufferer.

Anyhow I am glad you are feeling a bit better. Are you making up your own VRT then? I am trying to sort something out via my GP but i guess I might have to wait on the NHS.

Gloria - love those adages and they are so true! I do hope in 5 years this won't matter and we can live a normal life. Unless you have been through it nobody would understand the burden we carry waking up each day and fearing how dizzy we will feel and if we will be any worse or if any new symptoms will appear.

Melissa - despite your set backs I am convinced you will recover because you have had lot of symptom free periods. I know when you feel worse it is so easy to get depressed, god knows I do and it is almost like someone turns on a tap and you can't stop crying but you sound strong and I am sure you will get through this.

I have been less tired this week but my ear is bugging me so much, so snappy and crunchy and it twinges inside. I am trying to keep pushing myself and getting through some things ok but it is like this little voice in my brain is constantly saying, 'you feel off balance' and I need to get to a point where my brain stops registering this and i can forget about the dizzy feeling.

Keep fighting everyone x


Amanda, So true! I couldn't have said it better. This is by far the most taxing thing I have ever been faced with. I have given birth twice and would gladly take on morning sickness, and labor.

Jemma, thank you for encouragement. It means so much to me. I think I will get better. I just know it is going to take a lot of time.

I also agree, we should start some sort of awareness program. I was in yoga today and overheard a woman tell her friend that she is dizzy most of the time. She said she was dizzy mostly in the winter. Interesting? I couldn't talk to her about it because the class was about to begin. I just wish people understood how awful it makes you feel. How taxing it is to push through the feelings.

I went to my Dr. yesterday and she said (get a load of this) "I think you think too much about how you feel. You are just too aware of your body." Ha Ha Ha Ha!!!!!!! OF COURSE I AM TOO AWARE OF MY BODY!!!! You spend the better part of 7 months dizzy and then get back to me.

Keep the faith!! Melissa


All,

I just found this board tonite, and what a relief to find so many people who understand what I have been going through.

Six years ago, I had a classic onset of labs. Went through the complete battery of tests at Mayo clinic, and as dianosed with VN, and prescribed VRT therapy. Took 9 months to get back to 100%, but always had a couple of occasions where I could feel it had not quite left me.

Well, 2 months ago, I got hit with it major league again. Same morning onset, major dizziness, nausea, et al. I aplied what I learned from the last attack, and for me, getting my head vertical is the best way to alleviate the attacks. Any head movement, or god forbid lay with my head down flat, and it just gets worse.

My symptoms seem to be the complete set of what everyone has here:

- positional vertigo (worst position is head horizontal, with right ear towards ground) - nausea, with and without dizziness - tinnitus in both ears - nystagmus (I can feel my eyes darting around even when my eyelids are closed) - no hearing loss - neck pain - headaches (sometimes front of head, other times back and sides) - brain fog - depression with having to deal with this - overall horrible feeling when attacks occur

Activities that I engage in that make this worse:

- anything involving significant head movement - loud noises - visual over-stimulation (flashing lights, walking through the aisles of a supermarket) - computer usage

The last 2 months have been a series of attacks where I get some or all of the symptoms. I get progressively better, then relapse, then start to get better again. What a horrible cycle.

I have found that taking advil and a antihistamine seems to help me get back to about 90% on most days.

I'm curious if anyone is close to these types of symptoms, particularly the headache. I dont remember having headaches teh first bout 6 years ago. Am concerned that the headaches could mean migraine (MAV) or something more sinister.

Also, like many of you, I believe this is a virus that will never leave us. It's been 6 years for me already. Something has to trigger or reactiviate the virus - anyone with thoughts on triggers?

I am heading back to Mayo on Tuesday to ask all of these questions to the medical team that diagnosed me before. If I learn anything interesting, I'll pass it along.

Thanks for contributing to this board. It and the UK womens's labs site are the best source of comfort I've found yet in dealing with this.

Best, JB

Hi Jeff, Welcome to this site and am sorry to hear you have had a major relapse after 6 years. I know that is what I and I'm sure the rest of us on here dread - that it won't go away. This is my first time with labs. As most people have never heard of it, let alone have had it, it is the MOST scariest thing I have ever known. For me, with all the other symptoms you describe, for me headaches and strange head pains have been pretty much a constant through what is now 7 months. In the first couple of months they were so bad, it frightened me to death and ended up in A & E/ ER to only be told labs doesn't last that long and it is a tension headache!!! As a migraines sufferer, I, too, thought of the MAV thing, but my neurologist dismissed this as my symptoms, in varying degrees were pretty much constant and not intermittent. It is the weird pains at the base of the skull and on the left and right hand sides of the skull. Also, I feel I have a very tight band around my head all the time - which again varies in strength depending on how dizzy or spinney headed I feel. Have been doing VRT which does make me feel better although I don't think it has shortened the time of this thing. When I do VRT, I can feel those 2 sides at the back of my head tightening up. So as this is where the inner ear and balance mechanism is sited, I assume it is to do with this.

You are right, and will be interested to hear what the clinic has to say about why this thing doesn't go away. I thought viruses were limited in the time they exist so why does it resurface?

Melissa - what are doctors like? Their awareness of the numerous symptoms of labs is so dismal and then when they come out with such crass statements like yours did - it is horrendously unbelievable.

Amanda - again, I suffer those odd back of head symptoms you describe. What are you doing for your own VRT? I get so bored with mine which is why we bought the Wii ( finding that helps) whether it is because my brain is being newly challenged, I don't know, but would be interested to know what you do.

Am feeling less dizzy today and a bit better - but guess what Jemma - my ear is all bunged up again!!!!!!! AAAAARRRRGH!

Jeff - hope things settle down quicker for you this time - keep us posted.

Keeping the faith, this too will pass, miracles do happen and time is a good healer!

Gloria x


Hi everybody!

How's everyone enjoying this snow in the UK? It's starting to melt a bit today - hooray! As I have had a lot of balance problems in the past it still comes back to haunt me at times and walking on a different surface always sets me off again. I am still full of cold but the sore throat/aches and pains have gone now. I have gotten off lightly because I have not had a major return of symptoms but the last couple of days have been a bit testing. Not a massive return of symptoms but now and again the world moves and I don't - or is the other way around - lol!

Anyway, both my kids are back at Uni and hopefully the youngest will get back to school tomorrow - maybe I will have a little time to myself again!

Jemma - that doctor is so right - while you do get used to the minor symptoms of Labs (if indeed you do suffer for a long time) - you never get rid of the fear - it is overwhelming. When I have a serious relapse I go straight back to being terrified of it again - you just can't help it and it truly does control your life. Even on my good days, if I am going somewhere (i.e. a restaurant), I worry beforehand and it brings a return of symptoms.

Jemma - have you ever thought of having grommets fitted to drain the fluid from your ears? You have mentioned the crackling many times so maybe this could be halting your complete recovery.

Hey Melissa, I have given birth three times and would gladly take all the pain together for a week, no a month, than have to suffer this!!! And, I did it all naturally! I have said many times I would rather have physical pain than this. And I can't believe your GP said that to you - oh, wait a minute - yes I can! They are sush idiots - jack of all trades - master of none!

Hello to you Jeff and welcome. You are the opposite to me - it would be very rare that I would have a dizzy attack lying down - I used to love bedtime!

I have never had headaches as such but have had a lot of weird feelings in my head along with pressure which used to make me think I had a tumour. I also take antihistamines every day along with a steroid nasal spray to try and keep my allergies etc dampened down as I am sure that they are what is making mine go on and on and on. I am coming up to five years but I have had good times and my worst relapses have always been when I get another virus. My last one (which lasted about 7 months of the more serious symptoms) could have been down to the fact that I stopped taking my antihistamines and nasal spray because I thought I should get off them and the one before that was due to catching the Mumps (yes at 48 years old). Please keep us all informed of what is said at the Mayo clinic - I look forward to that.

Gloria, I used to get a very strong pain just above my left ear and that scared the hell out of me. It would come on out of the blue and it would leave me feeling really ill - I don't know if it was the fear that did that or what but it was not at all pleasant. But, happily that hasn't happened for a good while so try not to worry so much about them as it does seem like it is one of the symptoms.

If you think about it viruses do stay dormant in the body for many years. Is it the chicken pox virus that can stay dormant and resurface many years later as shingles. Also the herpes virus stays in the body. That is a very interesting question though.

Gloria - I know that time is a good healer - but how long - LOL!! I am sick of waiting!

By the way I did get to see Avatar and it is quite a 'dizzy' film. Just watched the 2D version but there are lots of camera shots which make you feel yukky. Mind you, I nearly fell asleep half way through - it was OK - but a little boring for me!

Take care everyone

Sandie xx

Amanda, I used to get that tingling feeling in my head for the first couple of years. Sometimes the head pressure would be very strong and I would think I was on my way out at times. However, I did start to write down when I would have these feelings in my head and it definitely would come at the same time each month i.e. about 10 days before my period so I eventually put it down to hormones! Obviously not caused solely by the hormones but because of the Labs and us being so sensitive to everything.


Hi Sandie - nice to hear from you. Glad your cold did not set you back too badly. I did think about asking for grommets back in the summer but every time i have seen an ENT they look in my ears and tell me they are fine because they cant see anything wrong with them when they look in the outer ear canal and the ear drum looks healthy. Also my hearing is fine so they just dismiss the crackling sounds as my jaw. I know this is wrong because the noise comes from inside my ears, mainly rhe left and it changes all the time. I can feel fluid in there, and they twinge and flutter and are sensitive to sounds etc etc. I also get wetness in there in the mornings and I had that bleeding at xmas. When I had the pressure test, the right ear had some negative pressure but the left was fine, strangely. The ENT said it could be eustacian tube disfunction but basically played it down and made out it was nothing and would just go if I popped my ears a few times to equalise pressure. I also got a steroid nasal spray after asking my GP for this but it did not seem to do a lot. I know the ENTs would not give me grommets. The last guy I saw in November almost laughed when I said I had blocked eustacian tube and said 'YOU DO NOT HAVE THAT. YOUR EARS ARE FINE AND YOUR HEARING IS EXCELLENT, IF YOU HAD ETD YOU WOULD HAVE MUFFLED HEARING'. He said my hearing was probably so good I could just hear my jaw cracking.

All in all it was like you said Melissa, the doctors just making out it was nothing and i was being too sensitve to my own body etc. Easy for them to say when they have no concept of what is like living with this day in day out!

Gloria - is your ear infected? you said it is blocked again, does it crack and crunch and feel uncomfortable? I just want to get an idea if this is all part of the labs thing.... I did mention it to the neurologist and he suggested it could be the muscles in the back of the head crunching or he did say something about the ear fluid levels being affected. Nobody has given me a satisfactory explanation anyway and I just want to know it will go because as you say Sandie I kind of feel I am never going to recover if there are still problems inside my ear with fluid etc.

Looking forward to hearing from everyone xx


Hi all,

Was able to manage a rodeo at Madison Square Garden in NYC today. Just very tired and a slight bit off right now.

It sounds as if all of our doctors just don't know much about vestibular disorders.

Hi Jeff and welcome. Are you in the US? I read somewhere that VN is due to a herpes virus that has laid dormant and attacks the vestibular nerve.

Jemma-you will recover! I think it is going to take time and much hard work. You may want to reconsider taking some sort of antihistimine. Other than that, I don't know what can help clear up your ears.

Hopefully this new week will bring all of us symptom free days! Melissa


Hi Jemma

It is so frustrating when they tell you your ears are fine isn't it, but the truth of the matter is that no-one can actually see inside the inner ear even with MRI or CT scans. The only way they could tell anything is after you are dead and they do a biopsy!! This is the reason why they always go by symptoms alone as most of the tests are inacurrate anyway. I suppose I have just learnt to accept my condition and don't even look for a cure now as I know it doesn't exist! Saying that, there are lots of things that obviously do help but at the back of my mind I am always waiting for my next relapse.

Melissa - good on you - you went to the Rodeo, that must have been very testing for you as I guess they are pretty noisy! I read that too about the herpes virus being linked to VN. My actual diagnosis is VN because of my balance problems and my balance therapist (from years ago), said that I had probably had the damage done to nerves just outside my inner ear and not inside like Labs sufferers. Do I believe what he said - I don't think so, because I don't beleive any of them and have never met anyone yet who talks much sense (medical people I mean). I have never ever had a cold sore or anything like that so can you have this herpes virus without having any of the obvious symptoms?

Not too bad a day for me, just a couple of 'blips' but I have been really busy. Now that my son and daughter have gone back to Uni I have been spring cleaning their rooms. They don't half hoard some rubbish!

Anyway, take care everyone

Sandie x


Small update about my situation, had a virus that started around 4 weeks ago, I have got over the stomach problems but I am still fatigued. This fatigue is just like the fatigue that I had last year when I came down with Labs, weak muscles and achy joints. On a positive note I am basically symptom free now with my balance issues, just have to get through this fatigue and Im back to my old self again, fingers crossed..

DC


DC- How long did it take you to be completely symptom free? Meaning no relaspes.

Sandie-I agree 100% about not believing a word that the medical community says regarding labs/VN. Not one person has made a hill of sense when it comes to my symptoms. They all think that the dizziness we feel is spinning. NOT, so very not spinning. Just a off balance, swirly head, exhausted, floor floating feeling, pretty much 24-7. Mine actually, hits me around 6pm now every night. I am fine all day, especially in the morning. Does anyone else have this? I guess as the day wears on my brain is just tired of compensating. I hope that this goes away soon. I feel a cold coming on. Something I live in fear of! I am drinking green tea like it is going out of style.

Keep the faith. Melissa

Hi everyone,

Sandie! How lovely to hear all your news - have missed you. It sounds that on the whole you have had a fairly symptom free time. Bet your house seems quiet now. I hate this period just after Christmas when the weather is just awful and nothing but bills come through the door and everything is just a drudge! I did laugh at your comment to Jeff about how you just loved bedtime as this gave some respite from your symptoms. Me too!! Bedtime and being able to rest & lie down makes me feel much better. Although a couple of times I have felt woozy in bed. For me, getting up in the morning is the worst - having to readjust my body to accept I am now upright!

Melissa - my symptoms were worse when my sore throat & cold were starting just over a week ago. It is only yesterday & today (fingers crossed) that I am getting back to where I was just before Christmas - not so dizzy but alas not totally symptom free yet! I told my neurologist that for me mostly it is as you describe swirly headed, off balance etc. He said ANY of those descriptions, they still call dizziness or vertigo in the medical world! I feel my best about lunchtime, early afternoon. Watching TV in the evening also stabilises me a bit, then when I get up to go to bed I feel off again.

DC - good to hear from you. Although my cold virus is better than it was (colds, catarrh always linger for ages don't they?) but I feel really whacked. I also think the weather does have an influence on this thing. The cold, snowy weather we have in the UK right now has also affected me.

Equally, they let my mum-in-law home yesterday. Although very active normally - here she is with her leg in plaster & unable to do very much. So Andy & I were running around getting her flat orgainised and me cooking meals to put in the freezer. We will have to visit daily to make sure she is OK - whilst that is no problem for me - but the extra running around is making me so exhausted.

Jemma - my ear is aching, but I think it is the catarrh from my cold. All the noises you describe I think are because all the muscles in the head are tight because of trying to balance the head all the time. Mine is the same. I get so much cracking and crunching going on plus loud ringing in the ears - which of course is all part of this!

It is quite hilarious that doing the Body Test on Wii at the moment is telling me my Fit age is 65 years old LOL!!!!!!!!

Roll on good weather, NORMAL, healthy times!!

Love to all, Gloria xx


Caught a cold. I hate that. I took Sudafed today. I hope it helps keep my ears clear. Has anyone taken Sudafed and has it worked? I haven't taken it in years. Long before I had labs. I have a PTA (Parent Teacher Assc.) mtg tonight at 7:30pm. I am dreading it, as this is the time of day I feel worst. I am the 2nd VP of the PTA, so I have to sit up in front of everyone. Ah how I hate this labs!

Melissa


Hi everybody:

Happy New year to you all. I know some of you aren't off to a great start, but things will improve.

Katie, great to hear from you. You haven't lost your zany sense of humour. Great to hear that you have been symptom-free. That's great news!

A couple of you mentioned having fluid in the ears. I had it too, but have been symptom-free for three months. It started after the doc put me on diuretics (just for a month). Since then it's been fine, but who knows? I'm grateful for every good day. Maybe a diuretic is worth a try?

Sandie and others, I know what you mean about fear. Mine has still not completely left me, although for most things it's okay. A friend of mine wanted me to go to Cuba with her for a week, but I declined, because right now I feel I can't do it. I'd be afraid I'd get a relapse, and couldn't handle airports at all. My symptoms seem to recur in the heat and humidity (it was pretty bad all last summer) so I'm going to see how I am this summer, and if I'm okay then I can assume I'm over it. So I am stuck in the freezing Canadian winter, but to make myself feel better I bought a full-length down-filled coat on sale for 70% off. Keeps me nice and warm when I go for walks. Of course a bathing suite would be nice and I am insanely jealous of some of my friends who are flying off here and there. Still I am way better than last year and way way better than the year before, which was just plain awful. Keep the faith guys, I'm living proof that this thing does get a lot better. Didn't feel normal for 2 years, now it's ok, but we will see...

There is light at the end of the tunnel. But O what a long tunnel!

Maria xxx


Hi everyone

Well today has been a good day for me in the scheme of things. Not symptom free by any means but less dizzy than normal and not too tired. It could be coincidence but my ear is also less crunchy today! I know that tomorrow or anytime I can go worse again, I know now that a good day does not necessarily mean you will be better soon but at least it gives you a bit of hope that this can improve.

Melissa - know what you mean about the spinning thing. Only once or twice have I felt that. Mostly its just off balance, swirly head feelings but the doctors only seem to expect spinning vertigo and if it isnt that then they make out its nothing or not ear related. I dont think many people experience constant spinning vertigo for months and years 24/7. You would literally not be able to do anything if you had that except lie in bed gripping the sides! I think only a handful of doctors really know much about vestibular disorders. I did try sudafed by the way but it didnt do much except make me feel jittery. I am trying some ginger root supplements which are meant to reduce inflammation in the body.

Maria - really good to hear from you and glad you are feeling much better. You are right it is a long road but if there's light theres hope at the end of the tunnel! I do hope you dont have any more set backs. I would love to start thinking about holidays and planning things but you just dont want to tempt fate with this as you know as soon as you book anything you will probably start feeling worse again so I am just taking each day as it comes. I still find socialising and talking to people really difficult and I do need to try to do this more and get used to it. The diuretic thing may be worth a try for the middle ear symptoms.

DC - glad you are feeling better and hope it continues. You seem to keep a positive attitude to all this which is good.

Anyway, hope everyone else is ok and keep posting xx


Melissa, Its taken me 12 months to get where I am now, it was a very gradual recovery process with only a few minor setbacks when I got a cold or had sinus issues. What really helped me was regular acupuncture and massage, Gingko and more recently flushing my sinuses with a salt water solution. It really seems to be a slow process that just gets better with time, I also think another important thing is to keep your immune system as strong as possible so that our bodies have every chance to recover as well as not getting any more cold's and flu's which could lead to more relapses. Im taking a chinese herb called Cordyceps at the moment to improve my immune system, its a little bit expensive but I think its worth it if it keeps me healthy.. Hang in there Melissa you will get better with time.

DC


Hi everyone,

I'm back to doing battle with this stupid disease. It's discouraging after having had such a good run. I think I was buzzing around too much trying to get on with life. Boy does this ever mess with your head. I need to remember it's two steps forward one step back. I noticed it return after I was going up and down the stairs carrying a few loads, nothing really heavy mind you, just armfulls of my sons clothes. It makes me feel weak as a kitten. So my symptoms this time round are a little more disabling. The obviously lightheadedness, swooshing in my ears, weak, somewhat shakey and unsettled bowels. Hope the rebound this time will be real quick.

My son is moving out this weekend to experience life on his own before getting married in June. Meanwhile me daughter is itching for him to move so she can have his big room downstairs. So lots of changes in my life. We raise our kids to eventually let them go, but a mother's heart always finds this so difficult.

Take care everyone


Hi All,

Well I have decided to seek the help of a certified nutritionist. Why not? I've already exhausted the medical communities help. LOL

They specialize in healing your body through diet, exercise and vitamins. I think it is worth it at this point. I have an appointment next week.

I had physical therapy today. I just feel a bit nauseous and week right now. Suzanne, I know what you mean by wobbly legs and off. My head is a bit swirly. I just keep dreaming of those 3 beautiful weeks I had without symptoms....

Gloria, Jemma, how are you both?

Melissa

Hi all,

Susanne - sounds like you have a busy year what with your son's wedding and everything. We, too, have a busy year ahead. My hubby's relatives from Vancouver are coming over to stay in July on the way back from a trip to India. Both their kids are about to go onto university/college and so they wanted a big family holiday before they finally grow up and want to be independant! Then in October I have my god-daughter's wedding. Her family are in the south-west of England (Devon) and so will all be staying here as a base.

It does frighten me a little, because I just hope and pray I will be enjoying a long period of respite from this or even be totally well!!

Again, I started to have a good couple of days this week, but today really feel swimmy headed and very tired - no energy. Its strange how this thing affects your stomach - mine is exactly the same.

Melissa - how are you doing? Is the ginger working? I used to drink ginger tea every morning when I had such bad nausea with this. Guess what I'm on at the moment?! Cider apple vinegar, manuka honey and crushed garlic!!! Although known to help people with arthritis, it is also a good anti everythng else. Tastes REVOLTING, but I have to say has cleared the catarrh from my head. I wizz up in the liquidiser 1tbsp vinegar, 1tbsp honey, 3 garlic cloves and then mix a little of this mixture with enough water make an 8oz drink to have 3/4 times a day. The only thing is my hubby has banished me to about 3 feet away from him LOL!!! The things we do!

Jemma - are you still having quite a reasonable few days. We've been struck with snow again down south - are you still able to get into work? By the way, back on the tv again with Celebrity Big Brother (for those in America included in the celebrities are Heidi Fleiss, Stephen Baldwin, Ivana Trump and a British actress Stephanie Beacham and Vinnie Jones - both British but resident in Hollywood now). It really is a load of trash, but will watch anything to keepme occupied! Tonight I'll be watching American Idol - how about you Jemma?!

Anyway, keep as well as possible everyone. Love, Gloria xx


Hi Everyone

I just wanted to say if your suffering with labs that it will get better!

I had my first attack in August, started spinning and passed out then ended up in A&E, was so scary I thought I was dying at one point. I had a few more really bad episodes over the first few months, but was dizzy and generally felt terrible. It did start to get better then every time I'd think is was getting better I'd get ill again which was very annoying.

My GP kept telling me it was a virus that would go away then put me on Prochloroperazine for 2 months which made me feel capable of leaving the house but not much else! The ENT doctor dignosed Labs and took me off the dizzyness tablets which made me worse to begin with but then it did start to get better. I started taking vitiman C and zinc supplements to boost my immune system as I was getting every cold that was going around which made me get dizzy again.

I saw a balance specialist today and my balance organs have regained equalibrium! I kind of had a moment yesterday at the football match where in a massive crowd I didn't feel scared and things didn't seem overwelming which made me realise how far things had come on since last summer when the thought of doing that was unbearable!

Sorry for rambling a bit but if you're feeling bad just try to stay positive because it will get better and you will be your old self again!!


Hi all,

I tried to comment yesterday, to no avail, I don't see it here today.

I have been doing well during the day, but at night I get slammed with a very swirly head and just exhausted.

I made an appointment to go see a nutritionist/holistic to discuss my diet and vitamins. I have exhausted every other doctor, why not try a natural approach. Gloria, I may soon be banished from the room too. God that sounds terrible, but I would drink or eat anything if it worked! LOL

I have the same stomach and wobbly legs that everyone else describes on here. Terrible. Yesterday a friend stopped by and I nearly fell over I was so weak.

I am sick and tired of this by the way!!!!

Keep the faith Melissa


Hi all

Gloria - not doing too bad but very tired today and so achey. I need a good back, shoulder, neck and leg massage. Don't think I'll be getting it though! I have been managing to get to work as my boyfiend has been able to give me lifts which is a big help in this weather. As I write this I just really want a hot bath and a lie down. Like you am adicted to Celeb BB - sorry this will be the last one apart from the normal one in summer. Also will be watching American Idol when I can.

Still using my balance board and I have to say that it doesn't make me feel quite as weird in the head as it did at first. i guess that shows the brain can adapt!

Susanne, sounds like you are keeping busy. The social events are the worst for me with labs and I have to confess that I have been avoiding them. I keep wanting to plan a trip or a holiday but don't dare.

Going to see my GP next week to find out when I can start VRT. She may have to refer me back to the ENTs I guess - oh joy!

Can't wait to get home and have a rest tonight...so tired.

Take care everyone xx


I was diagnosed with severe labrynthitis in August 09. The 'acute' stage - when I could not sit or walk lasted about 3 days. Then several weeks of pretty severe dizziness, but not vertigo.

Now it's January '10. I am still having random loss of balance - for only a second or two at a time. And occasionally my vision is doing strange things. These symptoms I can deal with.

My "problem" is that I cannot relax or feel settled. I feel like I'm under extreme stress almost all the time. I'm on edge and exhausted. I find myself worrying about EVERYTHING under the sun.

Are these "emotional?" problems related to the labrynthitis?


Melissa, you are on the right path. Try exercising or atleast sweating when you feel bad, you need to get the toxins (these are the same toxins that make you drunk & hungover)out of your body. Liver cleanse and a diet change will help, ( I don't know your diet) but watch the sugar and carb intake. Also look into systematic candida and all the symptoms, it is exactly what we go through, it has worked for me. Give it a shot I still have days with hangover like headaches but atleast the vertigo, fogginess and all the other things are pretty much gone. Making it a much easier day. Look into it. Michael


Stuart, I was diagnosed with Labs in June. So I have been dealing with this hell for 7 months. Did you mean you were diagnosed in Aug of 2008?

Anoymous, I too felt anxious all the time the second month of this dreaded labs. I could not feel settled and I was on edge all the time. Couldn't sleep and basically always felt nervous. My doctor prescribed Zoloft. It took a good two months for it to start working, but it has taken the edgy feeling away.

Micheal, I do exercise everyday. I run on the treadmill 4 miles a day. I agree with you that you have to sweat out the toxins. What is systematic candida?

Melissa

Hi all,

Having a pretty YUK week. Not so much with dizziness - although that is there as always but now intermittent. Horrendous migraine from HELL causing once again all my neck muscles to spasm and be painful. I NEVER had all this before labs started. Except my migraines but even they didn't cause lme all this stiff neck and aching body stuff.

Despite this, I have tried to move and do some exercise. My god-daughter brought over an exercise DVD called Pump It Up!!! As the name suggests it probably is for a much younger generation! However, as I do not consider myself to be geriatric just yet - I've been giving that a go!! The only thing is I haven't got the bright lycra tops, and skimpy shorts - I'm still Jane Fonda attire (not too disimilar I feel) LOL!!!! It really makes you sweat (so I'm pushing out my toxins Michael and you'll be pleased to know I've started on the Candex again).

How is everyone else doing? Don't know about those of you outside the UK, but here at the moment the weather is dull, grey , damp and very miserable - need some sunshine in our lives.

Jemma - have you been to see about your VRT yet?

Hope to hear from you soon. Hugs, Gloria x


Hi Gloria - sorry you had a bad weekend but it's good news that the dizziness is only intermittent now. That shows a real improvement! Do you need to see the neurologist again about the migraines?

I am really tired today and quite woozy headed. I haven't been too bad overall but it's just a waiting game with this I suppose. I went to my GP yesterday and she had just received the letter from the neurologist. He basically confirmed he believes the problems are vestibular and not neurological and said it is a common error to rely on the vestibular tests and tell people it isn't that because the tests are normal even though they only test about one fifth of the vestibular system. He did suggest a VRT referral via the ENT so my doctor is going to write to the ENT so see if it can be arranged on the NHS. She did not have any idea how long it might take. She just kept going on about meunieres and BPPV and then said labyrinthitis can take a while to fully resolve.

Previously when I saw her a few months ago, she said if couldn't be labyrinthitis as it would have well and truly gone by now!! They say one thing then another and just haven't a clue what they're talking about! I won't go back there unless I really have to. Just got to see how long the VRT will take now... hopefully they will understand this condition a bit better!

How is everyone else? xx


Jemma,

Don't these doctors drive you nuts?! Why can't one of them specialize in vestibular issues? So many people have problems with this and we can't get any answers. Is it so frustrating!

Gloria, I know I am repeating myself; ice, ice and more ice for your neck. It does work.

I have been very tired by the afternoon. Not sure if it is because it is winter and cold and dreary. My head is swirly and I am exhausted by seven each evening. I had a cold this past week.


I have had a few symptom free days, I am just getting my strength back after being struck down with a stomach flu over the holidays. In regards to tests for the vestibular system my acupuncturist told me it is impossible to do any test for a damaged vestibular nerve, no scan or test can show damage in that area. With Labs/VN the only thing that seems to work is VRT and time, I've never done any formal VRT just kept busy with exercise and activities that challenged my balance system. I still believe Gingko helps too and still take a tablet every day.

DC

Hi Jemma, Like many of us, I too saw an ENT and neurologist as well as two different GPs and none of them had any idea. It was only my VRT therapist who only works with inner ear patients who had a good knowledge of inner ear problems. So hopefully once you get that organised you will have someone with some understanding! What you have written is so familiar - ie doctors saying that labyrinthitis can't take that long to resolve, suggesting menieres etc.

I live in Melbourne, Australia, and Alicia Molik is an Australian tennis player who retired a few years ago due to an inner ear infection and losing her balance etc. She made a comeback last night at the Australian Open and the commentators were talking about how ill she had been. It was quite nice to hear them showing some understanding about how long her recovery had been etc!

Gloria - it is the peak of summer here - we have had a few of what they call "catastrophic fire danger days" here! Just to add some contrast to your wintry weather. We have just got home after 4 weeks in South Australia staying with family and having a great holiday, doing lots of swimming in the surf. I have been feeling really good so am hoping that this year I might be able to put this behind me!! Am wondering if the hypnotherapy did the trick with regards to the anxiety - its hard to know really!

Anyway, take care everyone Cathy


Well I had just finished my university exams and was looking forward to my holiday when a day later i got struck with this horrible condition. It began with me waking up with true vertigo, i.e. the room was spinning violently I thought at first I had got out of bed wrong or too fast but the vertigo did not subside for about four hours.

I don’t believe my initial attack was severe as I’ve read of stories on this blog of people having true vertigo for days or weeks; mine only lasted a few hours. I was also able to resume work the next day (physical cashier job) and have so to the day although its been extremely trying, I was also able to continue my gym schedule 3 times a week. I went to an ENT a week after the attack who diagnosed me with Labrinthitis and tested my ears for hearing damage and then told me I was lucky to have no hearing damage and that I would recover soon.

However For the past 9 weeks (to this day) ive struggled with constant 24/7 dizziness, problems with balance in the dark and probably most disturbingly for me the feeling that I’m always moving or swaying even when I’m still. My left ear (affected ear) feels quite different to my right ear with my left ear sensitive to sound and my hearing feels muffled with a prominent sensation of fullness.

I’ve started taking 7500mg of Gingko bilboa as I’ve heard it helps and have witnessed a very slow improvement in my symptoms although the constant feeling of "movement" still remains i am hopeful that this feeling will disappear with time and I will return to normality. I’m still not sure if the virus is still affecting me as I get a slight popping sound when I yawn or am using my jaw i.e. eating and a feeling of fullness in my left ear, although in the past 2 weeks this feeling of fullness has disappeared and my left ear ( affected ear) feels identical to the my right ear.

Lately I’ve been trying to retrain my balance by standing on my right or left leg with my eyes closed and timing how long I can balance myself, I’ve been able to balance myself for up to 20 seconds without falling over which I couldn’t do at the onset of this condition so I think this is also positive and shows that I’m improving.


Hi everyone

Jemma - that is so like a GP - tell you it'll take a few weeks to resolve and then changing their minds! Like I always say Jack of all trades - master of none!

So glad though that you and Gloria are reporting some relief from the constant dizziness that is so typical of this.

Cathy, I have heard of Alicia Molik though only because she went down with Labs after me (5 years ago for me). I think I remember her trying a come back a couple of years ago? Also, Celine Dionne went down with it a few years back but she seems to have recovered now. Just shows though with all the fitness (or money) in the world it can still really affect your life. Cathy, so glad you had a lovely holiday and I too hope this is the end for you with all this stuff!

S - where are you from - you got a very fast referral to the ENT so it can't be the UK - LOL! You certainly seem to have all the symptoms of Labs and if you are improving already hopefully you are going to be one of the 'lucky' ones. I hope so.

I'm having a few 'spells' at the moment but mostly not bad at all. Since I gave up my job things have improved for me. I think I was just stuck in a vicious circle, I only worked three days a week but it would really set me back. Now that I don't have to worry about working it has taken a huge pressure off me. My family is still battling with colds and flu at the moment, but even battling with it myself hasn't caused a major return of symptoms (touch wood) - roll on summer!

Gary - where are you? Would be nice to hear how you are doing.

Take care

Sandie x


Hi all,

S this is a great place for you to get information and share your story, welcome.

I have been doing much better. I have a few "moments" of a swirly head in the evening. I have begun taking yoga classes at night, they seem to really help the swirly feeling. I also feel it when I am hungry. Not sure why.

Sandie, you mentioned Celine Dionne had labs and the tennis star. Well they have a ton of money and doctors at their disposal to help them.

I had a cold last week. I used a neti pot to get the phlegm out. It really worked! Jemma you may want to purchase one. It is a bit disgusting, but you don't have to use antihistamines.

Keep the faith! Melissa


Sandie- im from Australia, we have a pretty efficient medical system here, i was able to see a GP the day it happened and got a referral to an ENT


Hi

Melissa - I just love the name 'neti pot'! I have seen them advertised but have never used one. I do however use a saline nasal spray which is very good for shifting all the gunge as well. Melissa I also get quite woozy when I am hungry. Before I had this I never really used to eat much until late afternoon but now I feel as if I must have something otherwise I might pass out! Maybe a problem with my blood sugars dipping I don't know but it's another thing that has reared it's ugly head since I started with Labs/VN.Or maybe it's my age!!

I have just started using the Nasonex nasal spray so I'll see how that goes. I suspect I might have nasal polyps as well so hopefully this will shrink those.

S - Australia! Lucky you having nice summer weather at the moment while we freeze in the UK! Cathy who posts on here is from Australia too. In the UK we wait about 3 months before we get seen at the ENT. And, then it takes weeks of tests etc before you are given any VRT. Maybe if we got it much earlier we would recover a lot quicker so hopefully you will get over this and get your life back sooner. Did they give you any VRT? If not you can gets lots of stuff on the internet, please ask if you need any assistance.

Sandie x

Great to hear from everyone. Not posted for a couple of days only my uncle who is 90 and living in the south west of the country (Devon) has been taken seriously ill - so what with having to look after my mum-in-law and organise to go and see him later this week - life has been quite testing!

Cathy - so great to hear you are doing so well - and having what sounds to be a brilliant and HOT (weatherwise!) time. Oh for some warm, decent weather. That in itself I'm sure would make us all feel a bit better.

Melissa - I'm ice-packing my neck & you're right it does help, but have just been for my monthly visit to the VRT therapist and because of my recent cold, this has set everything back. My balance is really off which is why I have my stiff neck. She says this is quite typical and although won't take as long to get to where I was just before Christmas, I have to go back to my full programme of VRT exercises again. Also, really cheered me up when she said it can take from months to years (!!) for the nerves to repair themselves. We know this of course, but hate it when people remind you becuase I always put myself in the worst case scenario bracket!! She thought the Wii was brilliant and fully endorsed its use for vestibular issues. So, whilst I am not awful, awful, I'm not brilliant either and feel I'm stuck in this phase of not going forward which is so tiring.

Good to hear from you S - welcome. I now have this feeling like I'm moving in my head but everything around me is stable, whereas before everything moved. So again it is a progression in symptoms - a myriad of symptoms! The ear thing is also what many of us here experience or have experienced and, strangely, with many it is the left ear. My left ear was affected too and stil is on and off with feeling blocked or raging tinniitus.

Jemma - cannot believe or rather yes, I do believe your doctor's comment!! They chop and change their opinions like the wind. I now have accepted that I know what this is and, regretfully know how long this can possibly take to get better and just hope and pray each day that it is gradually fading - with blips en route!

Anyway, may not be able to post for a few days if we have to go to Devon - take care, Love, Gloria x


Melissa, Gloria, Sandie - yes the doctors comment is rather pathetic isn't it. You would think if they have a patient coming to see them regularly about a certain problem they might actually read a book on it or do some research online so they aren't telling you totally wrong and different information each time!

Gloria I have that dizzy feeling in my head. I can hold my balance ok and when the doctors do these balance tests like close your eyes and walk on the spot etc etc I seem ok. Thing is I can hold my balance but the feeling in my head is dizzy. I said to the neurologist it feels like what my eyes are seeing is out of sync with what my ears are telling my brain about my balance and he said that is exactly what happens with this. So there is nothing wrong with my eyes or eyesight as such it is just that what I see isn't matching up correctly with what my ears are telling my brain hence the dizziness. The brain is tricked into a feeling of false motion.

I am really achey at the moment, my neck, back shoulders even legs are bad. I guess this thing affects all the muscles in our bodies as we try to compensate. So tiring and draining!

My ears are slightly less clicky right now but like you gloria this is up and down. I down quite know what is up with them but it is annoying having these crunching sounds. It is my left ear which is affected most too!

Hope your uncle is ok and you manage to get to devon to see him. hoping we all have more energy and better times ahead! xx


YES!! To finally and not the first on this blog, hear that you (Jemma and Gloria) both have the EXACT feeling in your head's that I do!! Jemma, you described it perfectly! So it must be a symptom of labs! Why don't the stupid doctors know this?

I CANNOT believe that it takes you three months to get a referral to a ENT! What good is that. I only waited two days! Got right in. Now when I call my ENT, she sees me that day! Gloria, you only go to VRT once a month?! Really?! I go twice a week! What is that all about? Do you pay anything for these visits? I just pay a co pay of $30.00 for specialists and $15.00 for my GP.

Jemma, I had the same clicking in my ear last week when I was sick. I thought of you.

Sandie, don't you just love the name neti? It is too funny. It works great, without putting any pressure on your ears. I too use a nasal spray everyday. It works well.

I went to a homeopath/nutritionist today. Quite costly and very interesting. She said I showed viral. Not sure what it all means. She wants me to not eat any SUGAR! I love sugar! She wants me to cleanse my system to get balanced. Of course I got sold a bag of vitamins and herbs all meant to help with dizziness, swelling and hormone imbalance. Why not? What have I got to lose at this point?

Gloria, I do hope your Uncle fairs well.

Keeping the faith,

Melissa

Hi all, Just a quick postt before we go off to Devon tomorrow. My uncle got admitted tohospital last night. We think his kidneys are failing apart from the fact he has dementia and doesn't know where the hell he is - he pulled out his catheter - ouch! And his language to all the nurses is very embarrassing apparently! He has never sworn like that before in his life. Another example of how it effects you when the brain goes wrong.

I am awful today - I think I am so stressed with worry. My uncle's daughter - my cousin - she & I are like sisters. Neither of us have siblings, but we are very close. She was, naturally, so upset yesterday, I just need to be with her. -My head is splitting, am so dizzy but like we described before - in my head dizzy. - and feel really sick today. Doesn't it just bring back nasty memories when we all started to have this and the symptoms were just too horrendous?

Jemma - isn't it weird how you feel so achey with this - like you, neck and shoulders and legs. (Am still icing neck Melissa - honest!!!!)

Melissa - another great photo. You put me to shame, because I should upload other photos but haven't got round to it. I read about the neti pot at the beginning of this when everything seemed stuffed-up. I was quite afraid to sniff up water into my nasal passages - does it feel weird or hurt? Although I go once a month to see my VRT therapist - I have exercises (loads!) to do several times each day. The cost to her every visit is £85 per hour (about $60-70?). So expensive to get private treatment over here in the UK. Interesting about the homeopath. I think there is something to it - but like you I do have a sweet tooth. I have to be quite controlled about it, but when I feel fed-up, it is so difficult.

What are the herbs & vitamins? Do let us know how you get on.

Sandie - hope you're feeling better & not suffering too much. Is it still snowy in the north?

Anyway - will post next week & thank you all for your kind words of comfort. Lots of love, Gloria xx


Melissa - glad you recognise the same feeling in your head as I do, it is so hard to describe to people who dont have this. You really have to go through this to understand it! AHHH wish we didnt!

I have had a bad day, in fact a bad week. All the aching, my neck and shoulders are killing me. I sit at a desk all day at work and it doesnt help anyway but with this on top of everything it is just torture! The aching goes right into my head and I have a horrible headache which wont go away and painkillers dont work on it. I have bought a massage roller thing from the Body Shop and using a TENS machine on my neck.

I am so drained and exhausted, need to sleep for a year! My job requires a lot of concentration and it really does tire me out.

Melissa we have the National Health Service in the UK (NHS), we get free medical apts which are paid for by high taxes on our wages but we have to wait ages to see consultants and have tests etc. If you want to get in quicker you have to pay privately and it costs about £150 ($300) to see an ENT privately!! It is a frustrating system because you basically have to pay extortionate rates to see the same consultants quicker.

Gloria - good luck with the Devon trip and hope your uncle is ok. Anything which causes stress or anxiety makes the symptoms so much worse doesnt it. As well as making the dizziness worse it is just so hard to cope with much having such low stamina. I just have to rest after doing things all the time because of the fatigue this brings.

Hope everyone has a reasonable weekend xx


Gloria, Take it very easy when you are away this weekend. Try to take a few moments for yourself to relax and unwind. Even if it is fifteen minutes.

Jemma, I have dinner plans tonight. Eleven of my friends are taking me out for my birthday (which was in Dec). I am feeling a bit swirly headed today and almost dread it. I just hope to god by 8 this evening I am still okay.

Here is a list of the herbs/vitamins I reluctantly bought for a fortune. It is such a complicated schedule too. She wants me to not eat ANY sugar (including those in carbs) for two weeks! I really don't know if I can manage that. Not even bananas.

Fungi and yeast 3tsp a day (split the doses up) Boneset 3 full droppers in water (split doses up) E & E -B 2 full droppers in water split up Silver shield 3 tbs a day split up Super Supplemental 3 a day 2 in am and 1 afternoon B-complex 3 a day 2 am 1 afternoon Mineral Chi-tonic 3 tbls a day enzyme #12 3 pills with each meal bifidophilus 8 a day Dong Quai 3 a day Pro-G Yam cream

Okay this is ridiculous! But there it is! Not really 100% sure if I am going to follow this. Any thoguhts from some naturalists?

Melissa


Jemma - agreed - it is so hard to describe this feeling in your head, it is so weird. I still have loads of different kinds of symptoms and different kinds of dizziness, if that makes sense. Is the TENS machine working for you? I read an article last week saying that they don't actually work! However, I hope it does some good for you. All the heavy concentration you have to do at work cannot be helping you recover Jemma. But, there's nothing you can do about that as you need to work.

By the way Melissa - we are heavily taxed in this country especially if you are a high earner and all we get is a few minutes with a consultant after waiting three months or longer.

Gloria - I sincerely hope your uncle is Ok - and that you are too. Any type of stress like this brings on a a massive increase in symptoms. Take it easy girl! The cost for your VRT therapist actually works out at 137 american dollars, so that would be expensive compared to what you are paying Melissa. For things like this I do wish we had a better system in the UK - it is ridiculous the amount of time you have to wait to see someone and then you have to wait again once you are seen,for VRT etc. Nightmare! We pay a lot in taxes, council taxes etc and what do we get - three month waiting list or longer to see a specialist, the police won't come out when you are in trouble and you get fined if you leave your dustbin lid slightly open! Don't get me started - lol!

Anyway, I haven't been too bad of late - the asthma is playing up more lately.

Had a visit from a young guy who wanted me to sign up for the Red Cross - he was about eighteen - and he asked if he could sit down because he was feeling dizzy. I said to him " don't talk to me about dizzies" and he asked if I had inner ear problems. I was gobsmacked that someone so youngwould know about this stuff but when I probed further it turns out that his mother has this too. He said she has had it for years and years and years. No good news there then! But, it just goes to show - there's another one suffering.

Take care everyone

Sandie x


Melissa, Systematic candida is an internal yeast infection that can settle anywhere in the body prefering warm moist areas, like the nasal passages, ears, throat as well as the common oral thrush, vaginal and also the digestive tract and your organs like your liver. There is alot too this, there are really not any medical tests or medicines that cure it(thats why Dr's dont really pay attention to it) it is amazing that it affects so many people that we do not know more about it.The problem comes from the yeast living in the body go out of control do to over use of Antibiotics causing an imbalance in your digestive tract, then they overgrow and can spread througgh the blood. The symptoms are well drunk and hungover in plain terms. The yeast eat sugar in the intestines and blood and turn the sugar into alcohol as well as 75 or so different toxins (when making beer, wine or spirits these toxins and the other dangerous alcohol are filtered or distilled out before bottling only leaving the one alcohol that is drinkable, forgot the name)so there is the vertigo, lethargy, constipation/diarrhea, moodiness, weight gain, headaches/migraines and the build up of toxins in the system that the liver has to battle. The liver now gets backed up and the toxins circulate through the body and get stored in the liver, fat and joints in the body making you feel achy and flu like. Look into it, it is an uphill battle but like I said on a good day I feel about 95% and a bad day I have a headache, but I am learning with liver cleansing that I am having fewer bad days and they are less painful. I would be happy to help you in anyway. Michael


Gloria,

I do hope that your Uncle is fairing well. I posted a list of all the herbs/vitamins the homeopath suggested I take. Then when I checked my post was not on here. Don't you hate that?

I have been feeling well. It took me 8 hours to clean my son's bedroom and his three closets today. I only felt a slight bit of swirly head towards the end. Not bad for being up and down and lifting heavy (16) garbage bags full of old toys and junk.

Sandie, some people here in the US want a health system like that in Europe. I don't want it! I pay $1700.00 a month in medical insurance. I get a free (ha ha) physical and gyn appt each year. My kids get a free physical each year. I pay $15.00 copay each visit and $30.00 for specialist. We pay $100.00 for E.R. visits. I learned that this summer when I was in there twice. LOL

Michael, I was given some anti yeast tonic to take all day it seems. Not sure I buy into the whole thing, but if it works for you, great!

I tried an epsom salt bath tonight. It did work great. Try it all of you with stiff neck muscles.

Melissa


Hi

Melissa, when you say you are not to eat ANY sugar at all and you say not even the sugar found in carbs, do you actually know what the difference is? My husband and me have been having this discussion this week. As a rule we try and eat everything organic and with no added sugar. Organic orange juice says on the label 'carbohydrates 10.4g of which sugars 10.4g' We can't however decide whether this is sugar that is in the fruit already and is good for you or sugar that is bad for you!! Drives me mad all this labelling on food, why can't it be simple!

That 'diet' of herbs etc she has you on is so weird, don't think I could stick to that! Melissa your post is there along with your list. I nearly missed it because I have a habit of going back to my last post. Hey, I have been cleaning my kid's bedrooms too, must be something in the air. They don't half hoard some rubbish don't they - but I didn't have 16 bags full - lol!

Blooming heck Melissa - 1,700 dollars per month - we don't even earn that in the UK!! I think I'll stick with what we have got - and you having to pay again on top of that each time you use a doctor, no thanks! When you mentioned it before I didn't realise you were paying monthly as well!

Michael, what you say does make sense. I have a sweet tooth but I am trying to cut down. I don't eat cakes and biscuits, stuff like that, but I do like a bit of fudge and I bet that's full of sugar.

Take care everyone. Melissa how did your night out go?

Sandie x


Hi all

I am feeling quite rough at the moment. The off balance swirly head is much the same but I am sooooooo tired and achey and I can feel what seems to be my lymph nodes at the back of my head (occipital) are a bit tender and sore. My neck is killing me. I bought a book about the Perrin Technique which is for people with CFS/ME which was very interesting. Whilst I dont think I have full blown CFS/ME I definitely think vestibular disorders mimic some of the symptoms and I really feel like I have a lot of toxins in me at the moment which is making my lymph glands sore and my neck ache so badly. Apparently when toxins drain out of the brain they go into the tissues of the head and neck before they eventually get processed by the liver.

I really feel like I need a trip to a health farm and a year off work. I have bought some vitamin b and c supplements and some echinacea to boost the immune system. Give that a try now!

Melissa your list of supplements is huge and very costly! Hope they work! The prices for healthcare in the USA sounds astranomincal. Starting to think the NHS isnt so bad after all... How did you cope with the meal out?

Gloria - how are you. Are you home from Devon? Hope your uncle is ok and you coped with the trip.

Speak soon xx


Sandie,

I agree 100% with you about the herbs/vitamins. I am NOT taking them. First of all there is no proof it will do anything and second of all there is no government monitoring of them.

I tried, unsuccessfully, to cut sugar out. I agree Sandie, everything has sugar in it. She didn't want me to even eat a banana! Too much sugar. I eat healthy, mostly organic and I exercise daily. I am not overweight and I think everything in moderation.

Sandie, my night out was so much fun. I even had a Guinness! I felt a bit off until I ate. We didn't go until 8pm and that is late for me to wait to eat dinner.

Talk to you soon. Melissa


Melissa, your homeopathic Doctor has you on stuff for Yeast as well as Probiotics and other stuff to clean out your body. I am guessing your in the U.K.? You can get stuff alot cheaper in the states. Alot of the organic / health food companies do the right thing as far as ingredients. The yeast and toxin cleansing your Dr. has you on is good but it will not happen over night, it is a battle, to remember the pills as well as your diet. The fact that you stay very active and eat well to begin with is probably why you are dealing with this better than most. Keep it up you will see a difference. Michael


Hey its me again still dizzy :( just a question how long is this 24/7 feeling that im moving while still (diziness or vertigo) going to last its 10 weeks now and i feel as if its my worst symptom and would feel at 95% if it was gone as for the past two weeks my affected left ear feels very good as the fullness has gone but this horrible feeling still remains


Michael,

Actually I live in the U.S. in New Jersey, just 15 minutes from NYC. I found them to be expensive as a whole, not each individual one. I think I am going to stick to what I am doing. Trying hard to avoid salt. I feel that bloats me and then makes me dizzy. Thanks for your advice.

Melissa


Melissa, I live in Monmouth county (exit 100 for us Jersey people). We are almost neighbors. Good luck with everything. The vitamin Shoppe is where I go for all that stuff. It can be a little pricey, but you rotate through certain things so you can space it out. You should stick with what the doctor gave you, do some research on your own and ask alot of questions at health food stores like DEAN'S if you have one by you. It has taken me since a relapse in October to get better but I feel much healthier overall because I have learned so much about how the body functions, and how to improve my diet with supplements and vitamins, I am 41 so everything starts to help at this point. Keep it up. Michael


OK guys, I've been observing this website since my diagnosis yesterday afternoon and subsequent web surfing, between the really bad bouts of dizziness. It's always there, but sometimes seems worse than others.

First off, I guess I should mention that I am 28 weeks pregnant and diagnosed with viral labyrinthitis just yesterday. As I'm sure you have all guessed, this is not a winning combination. My symptoms started on the afternoon of January 17th, and like I'm reading is very common, they came out of nowhere. By the 18th, I could not get out of bed without assistance, and when I did, I was instantly and violently ill. So my husband took me to the hospital, on the advise of my OB. We were told to go to the Labor and Delivery ward (standard procedure considering how far along I am, I guess). While there, my basic vitals were not checked. I was asked about ear pain, but since I had/have no pain, that must have been overlooked somehow. They released me from the hospital with a battery of prescriptions for vertigo and nausea. Nothing has helped the vertigo to this day, though they have me on meclizine and some sort of motion sickness patch.

Anyway, I spent the majority of last week in bed, useless and unable to take care of myself or my family. I could not be trusted to be left alone because of the risk of falling, nor be trusted with the care of my 5 year old daughter. Every time I called my OB, I left messages and at one point, it took two days for him to return my phone call, and then when he did, he told me to call an ENT. (My OB will be dealt with as soon as I am back on my feet, I am NOT happy with him.) Great idea, right? Not if you're pregnant! I can't begin to tell you how many ENT's I spoke to last week. No one will touch me without a referral from him. So by Friday I was in agony, not to mention, frustrated and severely depressed, when I called my OB again. Finally, he agreed to see me and get a referral. While in his office, still not knowing what was wrong with me, he prescribed antibiotics and finally wrote me a referral, with which I was able to get an appointment yesterday. I saw the ENT and told her that the antibiotics have done nothing to assist me and she ran me through a battery of tests and came up with this diagnosis. Honestly, I don't know if it's the correct one, but after reading the personal stories that I have, as well as all the medical jargon, I am just a bit nervous, especially since no one would listen to me when I first started having problems....not that they could really do anything about it if they had known.

So far, I've been told to stay as immobile as possible, because of the fact that I am now a fall risk and that I can hurt the baby I am carrying. But then I read that keeping as active as possible is the way to go. And of course I can find nothing that combines Labs and pregnancy and what to do when you've got both going on. I don't really understand this disease at all, there seems to be so much conflicting information on it. Can anyone please point me in some sort of direction that might actually help me get through this? Thankfully, at least it does seem to be receding a bit, I can at least sit up for a little while now.

Any information, thoughts, direction etc etc any of you might have is sincerely appreciated.


Dawn, welcome to Sharp Blue. As I was reading your post, I really got tears in my eyes. I feel so bad that you have to deal with labs at all, not to forget pregnant!

I think that right now you are in the worst of it. So I would stay in bed or on the couch for another week or so. Then get as active each day as you can handle it. Start Vestibular Rehab Therapy (VRT) exercises as soon as you can. You can google Hawthorne Cawley and all the exercises are on there. Remember that this can take a long time to go away. It is not necessarily linear. The doctors really do not have much info and are VERY quick to dub you hysterical. With that in mind, keep pushing them. Keep asking questions of your ENT. I assume you are in the U.S. by how fast you got a referral to an ENT. I too live in the US in New Jersey. If you start to feel a tremendous amount of anxiety, it is completely normal. Labs and anxiety go hand in hand. Your vestibular system is messed up right now and your brain has no idea what is going on. So it panics. I never had a panic attack in my life until I got labs this past summer.

Always feel free to post on here whatever you want to. Questions, feelings etc..

Keep the faith that this will go away with active participation on your part.

Nice to talk to you, feel better soon.

Melissa


Im feeling like crap at the moment, I came down with a virus over Christmas which has left me fatigued, the same sort of fatigue I felt when I first came down with Labs. The weird thing about this is my balance has not been affected, its actually as good as its been since this all started, I just have this heavy arms and legs feeling with muscle fatigue again.... Im trying to stay positive but this really gets to me...

Hi everyone,

Returned last night. My uncle - still going - is in the best place - hospital. There is nothing they can do - it is his kidneys and at his age it is just a matter of time and keeping him comfortable.

Good to read all your posts. Melissa - how are you doing on all that strange herbal stuff? I do think if you cut out all the nasties from your diet then it can only help, but it is having the strength and determination to follow such a strict regime weeks on end.

DC - so sorry to hear you are not feeling too great, but I suppose some comfort in that it hasn't affected your balance/dizziness.

Whilst my dizziness or rather sinking feeling remains intermittent, it is the tight vice my head feels it is in, the painful neck/shoulder and headaches. Whether this is the sort of aftermath of the thing, I don't know. Am seeing the neurologist next Thursday , so will see what he says.

Dawn - my heart goes out to you. To be pregnant and have labs -just the worst. As Melissa said, you are at the beginning of this and the symptoms are most severe. It gets better although gradually and for quite a few it really seems to go altogether after a short while. However, it does get to the point that you are able to function but with the feeling of wooziness, which you actually get sort of used to. What is most frustrating - as most of us here have experienced - is the fact doctors do not know too much about this thing. Although fairly common, it is not as common as other illnesses like flu and because there are a myriad of symptoms that you can get, not everyone gets the same. So, they may have experience of people with the most common of the symptoms and don't recognise others. As headaches and head pressure have been a big part of my symptoms, the doctors said it is just a tension headache!!! I WISH! Do keep posting and let us know how you are doing. This site has been a god-send for us all.

S - sorry to hear you are also still suffering. The feeling you describe does get better and change to being more intermittent and hopefully fade away. Unfortunately, it does take a little while. Although, you say your ear has felt a little better. At 10 weeks I was still having major symptoms, so hopefully for you it will be a shorter process.

Jemma - you sound just like me - buying anything and everything to see if it will help. Labs does make you feel as though you need a huge injection of strong energy boosting things. I also think the weather we have had in the UK hasn't helped and I'm sure I get affected by lack of sunshine - what do they call it Seasonal Affected Disorder? I'm now trying vit D not only to build up vit D because of lack of sunshine, but it apparently repairs the nerve ending covering and not making it so receptive to pain etc - like stiff painful muscles. We'll see! Let us know how you are. Any news on the VRT therapy yet?

Sandie - hope you are still doing OK? Your talk of having a good clear out - I'm doing the same. Going through the house and bagging up anything that has been in a cupboard and not seen the light of day for a good few months. Old clothes, loads of old ornaments that were only collecting dust, and clothes from my hubby's wardrobe!!! Last time I did this, he actually went down to the charity shop where I had taken everything and bought back his old comfortable jeans!!!!!!!!! MEN!

Keeping the faith we will all soon feel better.

Hugs, Gloria x


Sounds like everyone is having a rough time at the moment.

DC - I too have been so fatigued since xmas. Don't know if I have some kind of virus but probably not. Although as I said in my last post, my lymph nodes are tender and my neck is really aching. I am going to try some osteopathy to see if that helps, got my first session this Friday.

Dawn - you sound really worried. It is such a horrible illness and what a cruel time to get it when you're pregnant! I have heard a few people having labs when pregnant, one of them is Ilia on the labyrinthitis.org website. If you read her story you will see and it may be worth sending her an email to ask how she coped. Chances are you will be lucky and it wont stay around too long. Good luck though!!

Melissa - this thing sure is a pain isnt it! Like you I never had panic attacks until labs but I am hoping they dont resurface because that was truly scary.

Here's hoping for better days xx


Gloria, So good to hear from you again. I spent $270.00 on all that crap and I am not even taking it. I am going to take the vitamins. I just can't take all those herbs all day long. I think I am a healty person. Exercising everyday and eating well. I tried to cut salt out of my diet this month. I just hope it works at that time of the month. Been feeling fine. Not one symptom now for 5 days. But...you know what is coming up to throw me out of whack again. I too have been on a cleaning spree. Many many garbage bags full of crap!

Jemma, I haven't had the anxiety or panic since early October, thank God! That was the worst of this. I hope you are feeling better soon. Like I told Gloria, try to ice your neck when you can during the day. It really helps with the tightness and headaches.

DC, have you tried to take a bath with Epsom Salts? It works great to ease muscle tension and aches in your body.

Keep the faith all, Melissa


Wow, this is a busy message board today!

Melissa, so glad you enjoyed your night out. I too feel really bad if I don't eat and then can feel so much better after I have eaten. This never used to happen to me before I got this Labs/VN stuff. I have two slices of toast for breakfast but always feel bad at about 11am so have to have a cracker or something and then I feel ok! Don't think I could drink Guinness, strong stuff, puts hairs on your chest!! My son loves it and its full of iron so it is good for you.

S - the off balance feelings differ with everyone. Mine didn't come on until I had been suffering with extreme 24/7 dizziness for about three months and then the balance problems kicked in for the next three months. The symptoms then got a lot milder and I would feel off balance for a few hours a day but this went on for a long time. Over the last five years I relapse at least once a year and it takes me six months or so to get back to 'normal' or what is normal for me! Please don't let that scare you because for most people it doesn't last so long.

Today, my balance is a bit off and my head is not good but I do have days where it doesn't affect me much at all. As I said, it just depends on the person, there are no hard and fast rules with this - it is a waiting game! For me, the balance stuff has always been the symptom I just cannot cope with at times - it sucks.

Dawn, hi and welcome. I feel so sorry for you being pregnant and having to cope with this. Melissa is right - take it easy for now. Most of us who have Labs cannot move around for a good week or so when we do get it - I was unable to move at all for three days. You will be terrified at this point as to what is happening to you as we all have been but try and be positive Dawn. This is an awful condition to have but a positive attitude helps a great deal. Dawn, this is NOT going to affect your baby so please don't worry about that. (Obviously I mean through your normal bodily functions not the falling over part). Also be reassured that I don't think many people have actually fallen over with this, you will feel like you are going to fall and that the world is moving and you are not but I have had this for five years and never fallen. If you are feeling unsteady, hang onto the wall and use the handrail to get up the stairs. Don't be afraid of this - it is a monster but you will win! Have a look at the UK website www.labyrinthitis.org.uk it really is full of information for new sufferers. To back up what Jemma says, Ilea and Emma who run the site do actually reply to emails sent to them - they really are wonderful people.

DC - sorry to hear you are feeling rubbish again. It's the same for me - I'm forever on that roller coaster and I just can't get off.

Gloria - you have got to be joking - your hubby went back and bought back his jeans - that is so funny!! Also, I too wish we could have a little bit of warmth. It's quite bright in the north east today but a bit windy. Why is it always windy nowadays?

Take care everyone and keep smiling

Sandie x


Dawn - My goodness, being pregnant and having labs? That is awful. I feel so bad for you. Please just rest and rest and take it easy. The most important thing is to take care of you and the baby.

DC - I have dealt with weak muscles and fatigue the whole time with labs. I am getting stronger, but have days where I'm set back again. I really need to watch what I do physically or else I pay for it the next day. My recovery times are getting shorter though.

Gloria - It's stressful having to deal with an ill family member especially when you aren't feeling great yourself. You want to help more, but you need to know your limits. What a laugh about your husband buying his jeans back. This must be global clean out your closet week because we have been doing the same thing that past few weeks. We've taken stuff to the goodwill store for the last 3 or 4 Saturdays and I have another pile started.

Melissa and Jemma - Of all the symptoms I'd say anxiety is the worst. It is so scary and you feel like you're going crazy. Really, this website has been such a comfort and reassurance to me just knowing I'm not alone and that others share this crazy illness.

Sandie - You described it very accurately. This is a waiting game and I'm tired of waiting too.

I have been doing not too bad lately although today and the last few days I've felt more lightheaded and tired, but I can still function with lots of rest. I need to go out and do some errands today, so I'll have to make it work. My favourite time of the day also is evening and bedtime since I can just relax and watch tv.

Keep looking ahead everyone.


Hi all,

Well tomorrow will be a true test of how far I have come. My son is a cub scout and has to race a sled and compete in 7 events called the Klondike Derby. I have to go with him because I am one of his den leaders.

The Klondike Derby is held at Ramapo Mountain here in New Jersey. We have to leave at 6:30 am and it lasts until 3pm. It is outside ALL day. It is going to be 19 degrees farenheit tomorrow! God please be on my side tomorrow!!!

How is everyone else doing?

Melissa

Hi all,

Melissa - you are one brave woman - but when you have someone who depends on you, there is no choice right? Sounds amazing - I'm sure you will be fine. Like me, if there is something to take my mind off how I feel does help. Its when you relax afterwards that it sometimes hits. Good luck & let us know how you do.

Susanne good to hear from you. Isn't it funny how bedtime becomes our sanctuary with this. I just feel I can lie down, relax, not feel guilty and feel so much better. But as you say I am SO tired of waiting to feel remotely normal.

Jemma - how is your neck & was the osteopath any good? Whilst I have been going to an osteo and physio - it is great for a while then it all seems to come back for me anyway. Hopefully you will have better results. For me at the moment it is the tightness around my head and funny feelings on the sides of my neck up to the back of my skull. I am sure it is all to do with balance as when I do my VRT, my head feels like it is trying to move but can't because it is in a tight sheath. It creaks so much and feels like `i need to oil it!!!

I think there is some truth in what my neurologist told me last time I saw him and that is you have to really make your brain and balance challenge more. It is no good just walking around and moving head side to side but to start running, jumping quickly turning -gym stuff or aerobics/pilates. As the weather has been so awful I haven't got out to do any of that. Still use our Wii most days and it is great fun but you can't move around too much - we don't have the room! Also, I have to admit I am not really a gym type person. I do like session keep fit, but pounding a treadmill (Melissa - good on you for doing this daily) and cross-trainer I find boring. Can I think of any more excuses?!!!!!!!! So when I see him later this week he will probably have a go at me.

Have good week-ends everyone. Love, Gloria xx


Hi all

melissa - good luck with your trip, sounds adventurous and challenging, hope all goes well. It will certainly be a test.

Susanne - did you ever go for those balance test? I wondered if you have done any VRT or physio since you got this.

I went to the osteopath yesterday as my neck and base of my head are aching so badly. I have had aching in my neck for years since carrying a school bag on my left shoulder and I think it damaged the muscles there but recently it has been so bad and the aching at work sitting at a desk is terrible. I think holding my neck stiffly due to the dizzines has been the final straw. The osteo told my I have scoliosis which is a curved spine and it affects about 2% of people which is why I might suffer from this aching neck more. Apparently you are just born with it so there is nothing I can do about it. I am going for a few sessions with her to see if she can help with it. She was not familiar with my vestibular issues particularly but she did sympathise and she said she wont get me doing loads of quick head movements as she doesnt want me to feel worse!

I am still very tired. I have tried some echinacea supplements but I feel quite woozy but may not take any more, i dont want to make myself worse.

Gloria - gosh you must be spending a fortune on all these therapists! sometimes you wonder if its worth it but we have to keep trying things dont we!

Anyway I am just about ready to collapse in front of the telly now and rest.

Take care everyone xx


Gloria, I think your Neurologist was spot on, I think the best VRT is actual activities that have you moving around and really challenging your balance, simple eye and head movements are not enough..

DC

Hi all.

I agree with DC. Which is why I'm starting a class of aikido (Japanese martial art) on Tuesday night. In aikido you use a person's momentum against them rather than hitting them, so it should be good as we will be stretching, learning to fall without hurting yourself, rolling on the floor etc, I can't think of much better VRT than that! It'll probably be tough for the first few classes and I expect to be really dizzy but no pain, no gain as they say.

http://www.doctorhoffman.com/sxdizzy.htm

I have also applied to go back to college full time in September, hence the need for pushing the VRT to a tougher level.

Overall it's been a pretty rotten month since Christmas, last few days have been ok, this time last year I was just going through the very beginnings of this, just never thought it would last this long.

Take care folks, I wish better times ahead for all.

Gary.


Hi Gary

So nice to hear from you. Hope the aikido classes go well for you and it's great that you have applied to go back to college. Gives you something to work towards.

Sorry to hear though that you haven't been too good since Christmas. It's the same for me. The last few days have not been good and I wonder if I'm heading for another relapse. My last major relapse was at this time last year - I really don't know why it should happen again. Strange thing is that last year I blamed it on trying to stop using the Beconase nasal spray and this year I have stopped again but I am using Nasonex instead. I really can't bear to go through all this stuff AGAIN - I get so sick of it.

Anyway, I hope you are all feeling a bit better.

Take care

Sandie x


Hi All, I didnt realise i had been off this site for so long, I have had computer problems but back now..I have just been reading through all your postings alot of you are still struggling and i sympathise so much with you all. I have been great for 2 months now but last ween i knew theb dreaded feeling of THE RETURN!!I just didnt feel right my head was muzzy and i was off balance my concentration down and my memory...well!!!!That is when i panic and it makes me worse and i also have to agree with alot of you stress definatly dosent help...anyway after last week my ears are blocked and i am bunged up and the muzzy head still there.I recommend a glass of red wine and a bar of frys chocolate cream and dancing on ice and wild at heart tonight for anyone else who feels like me today.I have 2 children so keep jolly for thema and i work full time so i tend to just carry on but sometimes i could just fall asleep..i do panic when i get forgetfull does anyone else have that??? i have missed talking to you all and take care.

Penny

Hi Sandie,

Sorry to hear you've not been well. This thing sucks doesn't it? I've been keeping track of all the posts since the new year, just haven't had anything really to add, but it seems most of us are having a rough time of it. Am beginning to think this is going to be long term - the aikido has to work - otherwise there'll be no college or anything like that.

Penny, I hear you - the forgetfulness is the worst part of this for me. The dizziness and brain fog I can mostly deal with, but my concentration and memory are total mush all of the time. Just another of the many symptoms though.

How's everyone else been over the weekend?

Gary.

Hi everyone,

Gary - great to hear from you! Had been thinking about how you were doing. It seems a lot of us are having yet more troublesome times - not that I've had any great ones yet!!! I think over the last couple of months I seem to have got used to feeling like this - not that I accept it. I just want to feel normal. My patience a lot of the time is now at the thin end of the wedge, but then I think what can I do but be patient because there is nothing on this earth that will make any difference - except time. This last couple of days have been very off again. Very dizzy and nauseous. Not quite as bad as at the beginning, but nonetheless horrible. I was reasonable a few days ago except the headaches neck stiffness and did too much and am now paying for it I think. Fantastic you are going to do Aikido - do let us know how you get on and how it affects you. I am finding doing more rigorous exercise is making me feel worse but that is what you have to do to get the brain to compensate - mine is for sure a slow learner!! Also Gary are you still taking the Serc. I remember some time ago you said your doctor put you back on a lower dosage. I haven't taken mine for a couple of months now. Haven't felt any different without it - so don't think it did too much for me. Good luck with going back to college. Is it a full time course? Hopefully by September you will feel loads better and much more able to cope. Keep positive.

DC - are you feeling a bit stronger now? Again, because I am going through a rough patch I feel so tired - feel like I've run a marathon - I wish!! Am doing aerobics most days though - at home to a DVD.

Sandie - it must be the weather - we are all feeling like this and you were doing do well. I could be very unlady like and write a string of bad words which will tell you exactly how I feel - but I'll keep my composure - not so composed within the four walls of my home at times though ha ha!!!!

Penny - how lovely to hear from you again too. Just when you think you are on the up - wham - back down that ladder again! Glad you have had a good 2 months though. Hopefully, you will get over this bout more quickly. Right on with the treats and telly though!! LOL!

Well, off under the duvet - always signifies I feel crap!

Better days all.

Love Gloria xx


Hi all,

I survived the freezing cold! Yeah!!! It was 11 degree F when we got up the mountain at 7:30 am. When we left it rose to 19 degrees! I was not dizzy or off feeling at all. Maybe God answered my prayers. I am slightly off now. It is the end of the day and I did a lot this weekend.

Gary, great idea to start aikido. I think that anything that will force your brain to see the world differently is a good thing. I have been taking a lot of yoga and pilates lately. It really forces you to use your balance.

Gloria, I wish you felt better. Is the weather bad there. I always do worse on rainy or snowy days. Would love it if one of the doctors did some research on labs. Maybe give us some answers to why we are affected to so many minor changes.

I hope your upcoming week is better. Sleep tight.

Melissa


Gloria, my strength and energy seems to be gradually getting better, but if I do a workout i feel a lot more fatigue the next day.

Gary, doing Aikido will definately help, I resumed my jiu jitsu training last year and I really started feeling better, all that rolling around makes you dizzy but eventually you will adapt to it and start to feel more balanced.

DC


Hi all

Sounds like everyone is a bit rough at the moment and I am no exception. Got a proper cold, the first I have had sinceg getting labs. It hasn't really made me more dizzy yet, but my head is woozy and I am so tired, achy and sneezing, sniffling the works! The worst part is trying to keep working through it AGHHHHH!

DC - glad you are improving albeit slowly. I hope you dont have any set backs.

Gloria - you sound like me, so tired and fatigued with it all. I just want to feel healthy...please!

Melissa - good job getting through the derby day. It sounds like it went well overall which must make you feel more positive.

Sandie - i do hope you dont have a relapse. After all this time, you just want to get rid of this for good dont you. I keep using my saline nasal spray but not sure if it is doing much.

I still have not heard anything about my VRT. Got some more osteo treatment this week but I really need to get rid of this cold which just makes me feel even worse.

Take care everyone xx


Is anyone here a musician and has anyone found playing a wind instrument makes this worse? Especially when playing higher notes?


Hi all,

Been at work all day head feeling muzzy all day.I am so fed up with this normally I just put up with is but this bout the more I think about it the more i feel there is no end to it.My first bout was april 2006 mr mri clear in july 2006 and since then bouts of it although not as bad as the first.I get so scared as sometimes my words come out wrong too especially when i havent slept well i feel today as though i am losing my mind...do you all feel like this and has anyone else had labs for this long back and fore?

Gloria..its always a joy to read your postings you cover everything and are always there..so helpful.

Gary...sorry your brain is mush like mine I am focused normally but think i am going mad sometimes how old are you? this affects all ages and i can certainly understand why people get so down with it..

Penny xxxx


Jemma, what is osteo treatment?

Penny, when I read your posts I get a bit scared. Sometimes just when I think I have beaten this labs, it does come roaring back. Of course, not as bad as the first bout of it. I hope in 4 years I am not still posting on here. Not that I don't enjoy all of you, just that I don't want labs symptoms still.

I have my "monthlies" and yes I hate to tell all of you this on here, as it is a bit embarrassing. I have been doing really well this month around. Not much in the way of fuzzy head, dizzy or very tired. I tried to not eat excess salt this month and it seemed to have worked. I am a bit off now, but it is the end of a long day. Hopefully, if I am vigilant in not eating salty foods, I will have another good month. Again I am grasping at straws here. Anything to use as an excuse that this won't hit me.

I have an orthopedist appt tonight regarding my hip. I have managed to pull my hip flexor muscle and it is not getting better after a month now. The guy is going to think I'm a Kook!

Gloria, I do hope you start to have some more good days. You are such a lovely person and really deserve them!

Keep the faith! Melissa


Hi melissa

An osteopath basically massages and manipulates bones and muscles, a bit like physiotherapy to relieve pain and eliminate toxins. I am hoping they can help relieve the pain in my neck which I have had for a while now but has been made worse recently by holding my head stiffly due to dizziness.

Jemma x


Jemma, thanks for explaining. My physical therapist does exactly that. It has worked great to relieve stress on my neck from holding it in one position.

Melissa


Hi Melissa,lease dont let me scare you, I hope too you wont still be the same years down the line.We are all different but with the same symptoms..so please dont get worried...i would hate to cause you that...and as i've said my good months are bril and now outdo the bad feelings.You will be fine.

I am feeling abit better today nose more blocked but head not as muzzy and light.Ears cracking too so going to steam now..then homework with the kids.

Melissa dont worry...i do rant alot when i am stressed...xxxx

Pennyx


Penny,

Really I do understand what you mean. You can't take this for granted and my worrying about it is long gone. Not much I can do, but ride it out. So please feel free to rant all you want!! LOL

Melissa


Week 11- No improvement over last week, still feel extremely dizzy 24/7 i.e still swaying or moving while still, it feels like this will never end and im starting to get very depressed :(

Although my concentration feels fine and only have mild sensitivity to light and my balance only feels slightly off ,this persistent feeling of movement is getting me down as when i was young i used to get quite sea sick and absolutely hated the feeling that you are rocking side to side.

At least ive been lucky over the past 11 weeks to be well enough to resume my prior schedule i.e Gym and my Job, although I am still unable to go out drinking with friends which before labrinthitis was a favourite activity D:

Hi all,

Feeling a bit better last couple of days - not so swimmy headed. More family probs though! My cousin (daughter of my old sick uncle) not only has had to deal with her dad being so unwell, but she had her car stolen by joy-riders and wrecked a few weeks back. As it was an old car she only got a couple of hundred pounds for it. She is on her own having lost her husband a couple of years ago and so money is very tight for her. So I gave her some money to buy another car - not new- but about 7/8 years old. Couple of nights ago I get a phone call from her to say she has had an accident and crashed that car which is non-repairable! As I think I have said before, we are close and she is like my sister so I can't abandon her. So we've had to scrape together some more money out of what little savings we have left after all these expert labs consultants (!!!LOL) to give her to get yet another car. What can you do? My uncle is not eating or drinking very much so it won't be long before his demise I fear - one damn thing after another - no wonder my head spins!

Anyway, have my neurologist appointment tomorrow - see what he comes up with next. If he has no more idea then I think we will call it a day as, personally, like we all know, it will take however long it takes and no-one can change that.

I am just fed up with it all. You get one or two days where you think it has improved, then as Melissa said, back it goes again.

Sorry S that you are still not too good, but at 11 weeks it is great you are doing your job and going to the gym. At 7 months and I think I have had half a glass of wine! Unlike me!!!! So I know how you feel on that score!

Penny/Jemma/Melissa - hope you are having more ups than downs! Jemma - it seems you are at the neck hurting stage. Mine is still stiff but a bit easier over the last couple of days. Mine is certainly to do with my balance. I feel it stiffen more when my balance is way off. Melissa - what have you done to your hip? Bad enough with the top half out of sync let alone the bottom half LOL!! Are you still taking your herbs and vitamins?

Anyway, onwards and upwards - I think I have stalled lately, but here's hoping.

Love & hugs, Gloria xx


S, sorry you are feeling so rocky all day. I think that feeling lasted for me about 3 months, then I felt like I was falling to one side or backwards when I would sit down. That too has gone away. I didn't so much feel depressed as anxious. Very scared all the time that it would not go away. It did thank god!!! It is good that you can work and go to the gym. Keep up your regular activities.

Gloria, you are a saint! Your cousin is very lucky to have you in her life. I pulled my hip flexor muscle jogging up hills. I usually run 3-4 miles a day on a treadmill. I did it about a month ago. I just ignored the pain and kept on running. I went to the orthopedist and he told me nothing for two weeks! It has to heal. On a more positive note I have now been symptom free again for a week. Every once in a while I get that swirly head feeling, not bad though. My daughter and I went communion dress shopping today. We bought a beautiful dress and headpiece with a veil. I felt like I was shopping for a bridal gown! LOL We had fun though and I felt just like my old self! I cut salt out of my diet this month. It really has helped. I am not taking the herbs or the vitamins that she suggested. I just take a multi vitamin and some b vitamins.

Melissa


Gloria - gosh you are kind! all that money for a two cars. Your cousin is lucky to have you. Glad you are doing ok at the moment. Unfotunately I am not. I have a terrible cold/flu thing which I think has been building for weeks and the reason why my neck has been so achey. I now have a full on cold which is making me feel awful and I have had to have today off work. I just so want to feel healthy but it feels like it will never happen.

Melissa - i have the swirly head feeling most of the time and the feeling off balance sitting on a chair etc, its very scary and horrible. You sound as though you are well on the way to full recovery though.

My neck is feeling a bit odd since the osteo treated me yesterday and i do hope she hasnt done any damage. I just worry about everything now. I am so scared of going worse or doing anything that might harm me even more.

It really does feel sometimes like i will never be healthy again. All this snow and cold weather doesnt help. I am starting to think i cant keep on working feeling like this as i am getting so run down but i cant just give up as much as i want and need to.

Take care everyone x


Gloria you are a lovely and caring person and good luck for tomorrow with the neurologist.i am still feeling like i am getting cold with ears still bunged hence dosent help my off balance feeling.

Jemma.my neck feels big but isnt!!! do you think physio would help the labs, it also creaks alot..

Melissa.. the shopping with you daughter will have done you good and i am glad you are feeling better.

Penny x


Hi everyone. Mine name is Jessica. I'm 29 and life in New York. When I was a baby I was in an accident and lost the hearing in my right ear, so imagine my horror when I woke up with labyrinthitis on October 26th, 2009. It took me 6 weeks to "nearly" recover from the initial episode and then just before Christmas I was hit again. By January 16th I was feeling pretty good again, and by the end of January I was feeling really great. I would say 99% like my old self. Then boom: I woke up February 2nd and I literally feel like I'm drunk except instead of feeling happy I feel depressed and my anxiety is through the roof. Had to take my valium last night I was so anxious. I just don't know how you can go from feeling so good to so bad overnight. I was trying to be cautiously optimistic; I just feel so depressed now. Why does this happen? I am seeing one of the top ENTs in New York and he basically staked his professional reputation on telling me that I will be fine and I just need to be patient. He said that he would not tell me something that might embarrass him in the future, but I just don't believe it anymore. There seems to be no rhyme or reason to recovery. I've got to get this anxiety under control though. One thing I have noticed and wanted to get opinions about is that most people who are on "labs" chat sites and who have documented their stories seem to be based in the UK. Has anyone else noticed that? Even on places like Facebook, the labs page there is mostly British people. I lived in Scotland for 5 years and I'm wondering if I could have somehow contracted it in Scotland and it just lay dormant for a few years?


Hi Jessica...welcome to you..sorry to hear you are suffering too.I live in Wales and you are right most cases do seem to be in the uk.It must be in the air here.I too get depressed but havent gone doen the line of any tablets atall with this just perservering and getting very worried and fed up.You are not alone and everyone on this site are lovely and all going through the same thing.I only found the site last year and it has been great to talk to others.

Gloria..How did your neurology appointment go today?

Penny x


hi everyone my name is angie ive been dizzy for a few weeks nothing that i couldnt cope with, but on friday i walked up to school to get the kids,and could nt see a thing i felt so drunk, began to panic, my hub had to come get me from school by the time we got home i was on the floor could not lift my head, my body in complete panic i thought i was having a stroke or heart attack felt so so bad he called paramedics, got taken to hos, they just did heart test and said i was fine maybe just a virus but need to see a nearologist to sort out this buzzing in my head!! really wasnt happy as i knew some thing was wrong. Any way my doc referred me to a neurologist and i managed to pay to see private one on tuesday he says def acute labinthitis but need to have mri scan just to be sure, so got to wait for a date, but how do you cope with this dizzyness and look after babies and kids!!! supposed to rest but impossible!!! can see why this can turn into depression, this is so hard, hope it goes away soon. thanks for listening everyone!!


Penny: thanks for the welcome. My ENT described the valium for the anxiety associated with this. I take it sparingly, and it helps. It's so just so frustrating that it waxes and wanes like it does.

Hi Angie: sounds like you are in the very early days of this. Did your doctor put you on prednisone? That may help with the buzzing in the head. It did for me. I had the MRI too and I was fine. I have a one-year-old baby and a full-time job. It's so hard but I keep going because I know my baby needs me to. Hopefully you recover quickly :)


Welcome Jessica,

I live in New Jersey 15 minutes outside of NYC. I agree that most of the people on here and the blogs are from the UK or Australia. The anxiety you are experiencing is all normal for labs. I had it so bad I didn't sleep for 4 days. Finally something had to give. My doctor prescribed xanax and Zoloft. I resisted taking these meds for numerous reasons. In the end, I had to give in. I too have two children and work part time. I could not function. The reason that you feel the anxiety is that your vestibular system is not working correctly right now. Your brain cannot process the info that you are taking in. So it panics. You have no control over it. It will go away. Valium and xanax do help a lot. Get into vestibular rehab therapy asap! I mean it. It saved me. I got hit with labs in late May. I started VRT at a Kessler Rehab Center in Westwood, NJ. You need to make sure you are seeing a specialist in vestibular issues, not just a regular physical therapist. I am 98% better now. I have some bad days, but they are not the bad from 9 months ago. Usually around the time of my period I get a swirly head feeling now. Try to be calm, it will pass, it may be a long road. Keep pushing your doctors. Many don't know much about this. You have to be your own advocate in this. Google as much info as you can about labs and read the blogs. All very helpful.

As we like to say on here Keep the Faith! Melissa


Hi Melissa, thanks for the welcome. I guess that my three main fears are really that 1) I'll never recover and this is what life will be like forever (impaired thinking and anxiety included), 2) that I might get another attack as bad as the first and end up deaf next time, 3) the fact that I'm already deaf in one ear will make it impossible for me to ever compensate. As I said before, I am seeing one of the very best ENTs in NYC and he keeps telling me I'm going to be fine, but he has also discouraged me from doing VRT. Says it's just "for people who require a hands-on approach to recovery". I just don't know what to believe anymore. I'm thinking about finding a cognitive behavioral therapist to help me control the anxiety problem.


Jessica,

I know and have been exactly where you are now. I too was told by my ENT that I would make a full recovery in 6-8 weeks. She did not even offer me VRT. Even after 4 months of symptoms. I just told my GP to write me the prescription for VRT and that I was going. I made the appt. and it has worked! Get into VRT ASAP!!! If you have a car, you could even go to the one I go to. Westwood is only about 20 minutes from NYC. Kessler Rehab Center Old Hood Rd, Westwood, NJ ask for Jen.

To answer some of your fears: 1) you will feel better. It may take 6 weeks or 6 months. There is no way to tell. My head is swirly today b/c it is going to snow. You may notice that you will become sensitive to the weather and during that time of the month. The recovery fromt this is not linear and therefore you won't feel better each day. One day you may be better the next not so great. 2) you won't suffer permanent hearing loss in the ear that is affected. If your ENT has done hearing tests and you haven't lost hearing in that ear by now, you will be fine. Be sure to take an antihistamine like Sudafed or Allavert. I also use a nasal spray Veramyst. 3) the anxiety from this is by far the worst part of it. I went to a cognitive therapist. He did me NO good! This is not about behavioral anxiety. There is nothing that you can tell yourself to stop feeling the anxiety. Your brain right now is not able to process how you are seeing the world right now. Therapy may help in that you can tell someone how you are feeling. I don't think it can stop the anxiety. It will go away. Either with medicines or without. I choose to take the meds. Made my life a whole lot better by the way. Many people on here choose not to. If you want to email personally it is thelttleman@msn.com. As we are so close to each other, if I can help at all please feel free to contact me personally.

Try hard not to worry, you will make it through this! Have a good weekend!

Melissa

Hi everyone, Again - I say again, because I have just written my usual book length post and the page just disappeared on me - so I start again! Maybe it is telling me not to talk so much!!

Thank you all for your lovely supporting comments at what is an emotionally difficult time at present with all my family probs. You all are really lovely.

Welcome to Jessica and Angie. Really know what you are going through and Melissa's description is very good. Angie, I was just like you at the beginning. Had a stomach upset, couple of days felt swimmy headed which lasted over the forthcoming few weeks and then wham. That was last June. You do get better, symptoms improve. It is slow, but you do adapt. It is also the scariest thing to deal with because it changes so frequently and is up and down over the recovery period. You will be fine. It is also true about doing VRT, whilst it doesn't make it go away overnight, it does help with the dizziness and help you feel better more quickly. Do find out about it.

I went to my neuro yesterday. He has changed my pills to a newer version of Prozac (like Zoloft in the US I think?). For me it is not depression, but to help with the nerves in the head and neck to stop reacting so much to the imbalance and dizziness which gives me all this head tightness and headaches. The tablet is called duloxetine and apart from helping with anxiety and depression, it helps with neuropathic pain. So we will see. He said I will get better and he could already see that I have improved. I said to my hubby, just because I put on my best frock and a bit of make-up, he thinks I am making a good recovery. I feel that it is a sad thing that these days I only get dressed up to go and see the doctor LOL!!! He gave me a lecture on trying to be more positive, try to forget my daily symptoms as we all have our crosses to bear in life and this is mine. It will go away eventually and I have to be patient!!! I paid him £150 to say that!!!! Dear God, please give me strength not to punch people like that. LET HIM GET THIS AND BE POSITIVE EVERY DAY!!!!!!

Sorry for my rant - but doesn't it make you mad?

Jemma - so sorry to hear you are feeling really down at the moment with your cold. Can't you take time off work? You must look after yourself, I am not really sure that they thank you for all your commitment. When I was working, I put work first every time, to the detriment of my health I am sure. Now, I shouldn't think they even remember who I am!

Melissa - really glad that you feel good and long may it last and improve even more. When is your daughter's communion? You must post a photo. Pray and hope you maintain your days of feeling great.

Penny - how are you doing? I am sure it will help when we start to get brighter and warmer weather over here in the UK, don't you think? Are you still snowy in Wales or like here is it just grey and damp and depressing!

Take care all and have good week-ends - if everything is quiet in Devon, then my hubby and I are painting our bedroom. Oh joy! Very good VRT though!!!!

Love and hugs, Gloria xx


Hi all,

Well I was doing ok but cant seem to shift these blocked ears and lightheaded feeling.my ears feel like they are so full of water and my head especially at the top of my nose feels so muzzy.I am now getting depressed with at as it normally stays afew days then clears but this time its over 9 days and i feel I am very snappy with people due to this.Doed any one else get snappy for no reason with this? I have made an appointment monday to go and see my doctor, i dont know why as i will get in there if and if i still feel like this i will start crying as i am worried again..it annoys me as i am so happy go lucky but this damn thing is taking me so low.

I HATE IT.. Peny


Gloria, many a doctor has told me that this is my cross to bare and that it could be worse, like cancer. Don't they just get you so angry!? They have no idea how difficult it is to live with the ups and downs of this. I never can make plans because I never know how I will feel on any given day!!! Meaghan's communion is May 2, 2010. I hope to God that I am all better by then. May will mark my one year of labs! Good luck painting your bedroom. What color did you pick? I was just thinking that my bathroom needed a paint job. I may just take that on. Very good VRT I would say!

Melissa


I am feeling really down at the moment. The flu thing is really taking it out of me and I don't seem to be shaking it off. I am now coughing and so weak and tired. My head is woozy and I feel a bit nauseous, its hard to know where labs ends and flu begins. I do sometimes wish I could take a pill and never wake up again, I am so worn down with dealing with this every second of the day!

Gloria - your neurologist obviously never has felt dizzy 24/7. They can be very patronising and assume just because you look ok then you feel ok. I feel like I could do with some anti-depressants at the moment though, for depression in my case!

I agree with you totally about work gloria but am scared that if I can more time off I will lose my job. Its really hard because at my age everyone expects you to work full time and I just keep making myself do it because I need the money even if its killing me. I just sometimes feel that I will never lead the life I hoped and I won't be able to do all the things a normal person can do. It really does get to me.

Sorry to be so negative, I am feeling really low at the moment but I hope everyone else is feeling better and seeing improvements.

xx

Dear Jemma,

When I had my cold at the beginning of January, I felt horrible and it made everything else so much worse - just when I was seeing a little glimpse of light at the end of the tunnel. Clearly, you are are feeling the same. I understand about your work and probably would have thought like you when I was your age, but if you have a doctors certificate, there is nothing they can do about it - otherwise they would be on a hiding to nothing in an Employment Tribunal. Why don't you ask your doctor for some anti-anxiety medication. I absolutely hate any medication, but am at the stage now where if it is going to help get through this nightmare, then so be it. I did have a few months on Prozac when my mum died a few years back. Never have considered myself a weakling where emotion is concerned and thought I would never need to take such stuff. It certainly helped me get over a raw time back then - so am hopeful that this new medication will have similar effects. It does work. Think about asking for some Jemma -ask about what I've been given - duloxetine - as it may help you with your sore neck muscles as well. Flu is really debilitating and that is enough to cope with in it self. You WILL get over the flu and labs - you will, you will, you will.

I am feeling reasonable-ish. Not quite so dizzy, but still have the tight-headband and neck thing going on. Anyway, have just helped paint the bedroom which hasn't helped I have to say, but at least I feel I have done something and not felt totally useless. My neck is so sore now.

Jemma - really send you big hugs and hope you start to feel a bit brighter soon, but do go to see your doctor - as well as getting your boyfriend to give you extra TLC (which I'm sure he does) and loads of nice treats!

Lots of love, Gloria xx


Hi Jemma..i am so sorry uou feel like you do snuggle up and keep warm..where do you live? I really do hope you feel better tomorrow.

Today i am having a real down scared day, my head is still mushy and i am so forgetfull it is unreal.I still have alot of stress going on and my ears feel full of water and the top of my nose is where my headiness is...I do get scared on these days...

Gloria did you get your painting done? and i may sound daft but i am going to see dr on monday adn i want to know what VRT is then i could mention it to her...

Just booked to go and see Status quo for the 35th time in July so thats something to focus on and my 40th in April thats something not to focus on!!!

I really do wish we could all wave a wand and get rid of this damn thing!! Does anyone get snappy for no reason with this too? is it because i am worried and all sorts of thoughs going through my head.The kids keep me going though..

Penny

Penny


Thanks for your message gloria - it really means a lot because I just feel so alone with this thing. It is such a cruel condition and really scares me so much. I am scared to go on anti-depressants and worried I might get really spaced out or some other side effects which might make me worse but like you say sometimes its worth it because right now I feel so low.

I am pleased you are feeling ok ish because you certainly deserve to see better times. I am so grateful for this forum because sometimes I dont feel I can carry on like this and it reminds me I am not totally alone xx

Jemma,

You are certainly not alone. As we can all testify, that this site has been our absolute saviour. We all feel each others pain and know precisely how we all feel - at our worst, and, when we feel a little better plus the fear that comes with that knowing it could all return with a vengeance as it does so many times.

I was scared of trying strange medications that I had never heard of before! I've really only ever taken paracetamol or ibuprofen and my migraine meds. When you read the notes inside these tablet packs and they list all the side effects, you think OMG. Anyway, I can testify that you won't get spaced out. It is only when you are given muscle relaxants like valium/diazepam that make you feel like that. The neuro said he would never prescribe medication like that if for no other reason than it impedes compensation whereas the amitriptyline that I was on and now this duloxetine does not interfere with compensation. At least consider talking it over with your doctor Jemma.

When I read this back, I sound like I am a drug pusher!! Not at all - I'm all for natural alternatives as you may recall with all the herbal stuff I have in my kitchen here! However, I think there are times when we do need something stronger than natural products. My neuro said that he didn't think I would need to take these more than 3 months and would want to see me medication free by late spring/summer.

You are so right when you say how cruel this is. Whilst I am feeling a bit less dizzy and think I'm turning a corner - it scares the life out of me that tomorrow it could all come back with full force - it's the not knowing that is so stressful.

Jemma - I'll post tomorrow to see how you are.

Sleep well and hope tomorrow is brighter. Love, Gloria x


Jemma and Gloria,

Let me say how proud I am of both of you. Gloria, taking the antidepressant is a huge step towards getting better. I have never once felt zoned out or spacey. I really feel like myself, except I never feel anxiety or panic. My doctor wants me on Zoloft for a year. Gloria, make sure that when you fill your prescription, you throw the side effects bulletin away! Don't read it! Way too scary!!! I have now been on Zoloft for 8 months. I was told that it would help heal the nerve that was damaged by labs. Also it would help my panic and anxiety. Which it absolutely has done.

I am actually having a nice glass of wine right now. To feel like a human again, even if brief, is so wonderful. I cherish these moments even more now. I may pay tomorrow, but it is only one glass.

Love and hugs (as Gloria always says)

Melissa


Jemma ..how are you feeling this morning, better i hope.I am not so muzzy headed this morning so a little bit better in myself.

Tke care and have a nice day Penny xx


Thank you everyone for your concern and support. It really is so nice of you and I am so grateful. I agree with you both Melissa and Gloria and if I keep feeling so down I will go to my doctors about the anti-depressants. I am hoping that it just a blip because of the flu because I have been lower than this, last June I was crying every day and really thought about ending my life. I am not that bad yet so if I can get through it then I hope I can get through it now.

I think I am just really worried about getting through the next week at work with such low energy levels. I have only just got up (10.15am) and I am already exhausted. I just want to rest,rest rest.

Thank you all so much for caring xx


HI all me again!!

When i woke this morning i seemrd ok just the tingling fingers..slept funny...but as the day has gone on i am so tearful and ears bunged again.I am thinking all sorts whats wrong with me and feel so stressed..god i want this to go...

Do any of you find yourselves talking to yourself ha i caught myself a couple of times and laugheed...think i going mad...

Penny


Penny - interested you say about tingling fingers. I get tingling in my hands and legs quite often with this especially at night? Do you think it is part of labs?

Jemma x

Hi everyone,

Jemma - the tingling thing I'm sure is part of labs. I had that a short while ago. Although it has passed I had it in my hands legs and arms. Again, more proof that this is a more complicated illness than people think. Not surprising when you think the mere fact of living is controlled by our brains and if that is not receiving correct signals just from one part of our body it puts everything else out of sync. I'm having a hard time trying to get people to understand (especially the doctors!!!) about this horrible tight feeling at the back of my head and down my neck and across my shoulders. I know it is to do with my balance because when I do my VRT exercises which are quite vigorous, I feel the balance systems at the rear of my head tightening and across the back of my eyes. Sigh sigh!

Penny, hope your day is progressing into better things. This labs makes you feel so so low, I've never had anything that has made me so depressed in my life which again is why I'm grateful for the anti-depressants. Trying to live every day, make an effort in front of everyone else is such a struggle.

Good on you Melissa - go girl and have another glass of wine - you deserve it! Saw the report on all the snow you are having again in the US. Has it reached you as bad as in Washington? Waiting for a call from my brother-in-law in NY to see if they have been affected.

Today am continuing with the decorating, but I have to say not without symptoms. Clearly the exertion of yesterday has made my head worse today, but I am trying to battle on remembering what the neuro said - trying to carry on as normal - HA HA! I used to be able to do this sort of thing and not think twice. A creaky bone here and there to be expected in middle-age was all I would experience. This is something else altogether.

Come on girls - group hug! We WILL get rid of this and have wonderful times again - remember my saying of a little while ago - will all this matter in 5 years time and what doesn't kill us makes us stronger.

Keeping the faith!

Love & hugs, Gloria xx


Gloria - your posts do cheer me up! I am sure the tingling is parts of labs as you say and I am sure the tightness you have in your head is too. Like you said, anything which affects the brain like this must have quite an impact on the rest of our bodies!

I am still very woozy headed, hoping I wake with more energy tomorrow to face the week at work. I totally agree that nothing makes you feel so drained on a daily basis as living with this. Sometimes you find some energy to do something then as soon as you stop the fatigue hits you like a sledgehammer and you have to rest for ages.

I hope you're right Gloria and none of this will matter in 5 years time. That would be such a nice relief from the endless worrying that this illness brings.

I'm going to collapse in front of Dancing on Ice soon. No wine for me - I am tee total nowadays but maybe some chocolate ice cream. xx


Gloria..i am at dr in morning do you thhink i should ask about anti depressants..never taken tablet except antibiotics n pill before so i very wary..i am very very stressed at home though and i know it is making me worse..at work i am fine but do tend to hide it alot..

Penny


Gloria,

Thanks for the hugs and encouragement. I live in the northern part of NJ. We did not get even a flurry. My mom lives in the southern part of NJ, just 80 miles south of me. They got about 20 inches! It is very cold here today.

I'm hosting a Super Bowl party tonight. Of course, I feel a bit swirly headed. I hope it is just from not eating much lunch. I just made a yogurt and fruit shake, in the hopes that it boosts my sugar levels.

Penny, I take Zoloft for the anxiety this caused me. It was a very hard decision to make. I got three prescriptions before I even filled it! I went to a very good psychiatrist, she had me start on the lowest dose and break that in half. I took that (12.5 mgs) for 10 days. Then I went to 25 mgs for ten days. Then I took 37.5 mgs for 10 days and so on until I got to 100mgs. That took about two months or so. I never felt a single side effect. Because I slowly titrated onto Zoloft. I can't speak for you. You need to decide if your anxiety/depression is that bad. Mine was so bad that I had a hard time functioning. I never had those feelings before labs. Talk it over with your doctor.

Love and hugs, Melissa

Hi everyone, I had the tingling and also numbness in my arm/hand/leg for quite a while and it made me so worried that I had MS or something! It eventually passed. I have read lots of people complaining about this on the different websites, not that the doctors would make any connection! Melissa - 'that time of the month' has definitely been a trigger for my symptoms as well - I guess the change in hormone levels or something causes it ... Gloria - sorry to hear all the hassles you have been having! But you do sound like you are recovering slowly which is great

I have been feeling really good for about the last 2 months. I think that 2 sessions of hypnotherapy have been really helpful for my anxiety, so much so that I'm gradually taking myself off the amitriptyline that I've been on for several months. Am feeling really positive that I'm ready to shut the door on this 15 months or so!

Anyway, just wanting to send lots of sympathy and understanding and encouragement to all of you who are struggling with this! I found a facebook site on labyrinthitis the other day that I hadn't seen before and there was a guy who had recovered from labs and had some 'secret' on how to cure it and was charging $30 for the answer! How annoying - when there are so many people on the internet just trying to offer support and help each other and this person is trying to make money from it! Made me really angry. I do wonder what the secret was though...

Take care everyone Cathy


Im feeling OK I guess, balance isn't too bad still slight rocking sensation, only thing is the fatigue is still lingering. Taking a green super nutrient drink to see if it helps with my energy and strength, that virus I had over the new years really has me feeling run down, but at the same time I probably haven't given my body enough rest by continuing to work long hours. Im Taking two weeks off in a couple of weeks, so hopefully some rest will do me the world of good.

DC

Hi all, What a day yesterday. I felt so unwell again, just like 5 months or so ago. I did too much decorating over the week-end. I could feel my head tightening and feeling more dizzy, but tried to ignore it and carry on. So had major spinney-head, sickness, sweats and felt horrible. Feel a bit better today, but still feel sick, dizzy-headed and bad headache. Why oh why is it impossible to do normal stuff without any come back?

Good to hear from you Cathy - really hope & pray for you that you continue to be well and even better than that! Don't people who try to make a quick buck out of other peoples' suffering the lowest of the low. The thing is that when people are so desperate for answers they succumb to these people. Let us know how you go coming off the amitriptyline.

DC - I take a gloopy super nutrient drink - dark green, tastes not too good! As well as vits etc it has stuff like spirulina and chlorella in it. I think it helps gives me more energy - although today I feel I could drink the whole bottle! Its from a company called Source of Life. Good on you to take a proper break though.

Melissa - hope your Super Bowl party went well. My hubby stayed up to watch probably the same game. It was on here about midnight. Anyway, I heard him come upstairs an hour or so later, so I think he was too tired to stay the course!

Jemma - hope you are feeling brighter and taking it a little easy at work. Are you taking vitamins - especially a good B complex. It may help with your energy levels. My cousin always says I should open a pharmacy with all the products I buy and knowledge I've gleaned over time!!! Still didn't stop me getting labs though did it LOL!!!!!

Going to take it easy today & hope this sickness passes.

Speak soon. Hugs, Gloria xx


Hi everyone

DC - I too feel the rocking sensation and it is particularly bad at the moment because I have had a flu thing which has totally zapped all my energy. I am going to bed at 9.30 every night I am so so tired.

Gloria - its true isn't it that it seems impossible to do normal things with this or when you try you feel so bad it isnt worth it! I am over the worst of the cold/flu I think but so tired and just want to sleep. My head is so woozy and feel a bit nauseous most of the time. It's the pitts isnt it! I have tried vitamin B but I have not noticed much difference really. Keep tryng different things but there is no magic cure that we all long for, maybe one day...

Keep fighting everyone xx


Hi All,,

Gloria... how are you feeling? it is awful one step forward and 2 back all the time.

I went to dr yesterday and she gave me a number for stress counciling which she said is very good and much better than medication...so i will give it a whirl...Just got home after a long day..work at 8.30am and then straight to school govenors meeting at 5.00.Head been abit muzzy today and an odd off balance feeling occasionally, but what is scaring me now is pins and needles on a morning in my hand which i know alot of you have.Icomes and goes comes and goes..is it labs doing it?

Kids off to bed in abit , hubby watching leeds utd so i am going to finish reading my fern britton autobiography and start collen nolans...sad i am!!!!

Hope you are all ok and cathy great to hear from you again.

Penny x

Hi all,

Still not feeling too good. Really swimmy headed and migraine from hell. AAAARRRRRGH!!!!!!! As we have been decorating the bedroom, we have been sleeping in the spare room. The mattress on that bed is more springy. Last night ended up on the sofa. My hubby who can be a restless sleeper - every time he rolled over or turned, the bed felt like we were on the sea or a water bed! It made me feel so ill.

Penny - it will be interesting to see what you make of stress counseling. It certainly is a different approach and if it works, yes of course it is better than being on medication. I do admire you Penny, another person who also works with this condition. Like Jemma, you are very brave. I was only thinking yesterday, with such a set back, I couldn't have coped with work. As for your tingling - I am absolutely sure it is what some of us have experienced due to labs. Try not to worry too much. It will go away. You just feel that with all these odd symptoms how on earth they can be related to labs. The weirdest illness I think I've ever known and want it long gone!

Jemma - how are you feeling being at work - any better?

Angie R and Jessica who posted earlier on this page - hope you are both doing better and improving. Do let us know.

Love to everyone - keep up the fight!

Gloria xx


Hi Gloria - These setbacks come all too often for my liking, in fact most of the time I think I am having a setback with a few odd glimmers of hope thrown in occasionally for good measure.

I still have the sniffles and the cough so I don't think I have properly shaken off the cold yet. I don't think my body has the energy to fight all these things because the tiredness is just horrendous. I am getting through each day at work - only just. I have to lie down all evening when I get home because of the exhaustion. I really don't feel it is doing me much good at the moment as I think my body needs total rest. I have spoken to my boyfriend and he thinks I should take more sick leave but I am afraid to keep doing this. I also have a few loans that are due to be paid off this year for my car and also my legal education fees which I have been paying off for years now. Also the credit card is not too healthy because my earnings have been hit by going part time and all the private medical bills. I am hoping that if I can force myself to get through work and pay off these debts this year I can take some time off because I dont see this going away any time soon.

Penny - well done coping with full time work. Didn't you say your were a nurse - that must be very tough feeling like this! I am sure the tingling is part of labs because I get the same thing intermittently and never had it before and other people also get it. God knows why though. I haven't even mentioned that to the doctors because they can't even explain the basics let alone the more weird symptoms.

Anyway we live to fight another day. Take care all xx


Hi all,

I too have the tingling in my fingers and hands. I woke up the other day and only three fingers had pins and needles (fallen asleep). I was told by my physical therapist that it is nerves in your neck that are pinched and therefore you feel the tingling feeling in your hands. Nothing to worry too much about.

We are in blizzard conditions here. The plows have not even come to plow the snow yet. My husband is home too. I am going to attempt to paint my bathroom. Should be interesting, the room is quite small and all that up and down motion. Good VRT. Gloria, how is the redecorating of your room going? Think how nice it will be to sleep in a brand new room! Now if only you had a brand new head to go with it! LOL

I have been feeling great. I don't want to wammy myself. I really feel like I should knock on wood right now. Every once in a while I get a swirly feeling in my head. Usually when I am hungry or tired. It is easily remedied by eating or resting. I am going crazy because I can't exercise. I pulled my hip flexor muscle and my orthopedist ordered me to rest it for two weeks! I feel like I have so much energy and can't do anything about it!

Melissa

Hi Jemma, Know where you are coming from - it just seems like one big setback and only blips of feeling better. I do understand about your work situation and oh boy do I understand about having to pay off credit cards etc - especially ludicrous private doctors' fees!!! Not prying Jemma, but don't you get paid sick leave or have you had time off already and are afraid what your company will say? It is just awful to feel under that type of pressure when you don't feel well.

Today, has just been another hard slog. Feeling unsteady and bad headache but trying to push myself because I feel I cannot give in to this. Jemma - do you still get your migraines with the blurry vision?

Melissa - so, the weather has reached you! Sounds horrific. Pretty to look at, but it can go on just a bit too long. We put back all the furniture into our bedroom and bathroom tonight. Really pleased it does look great. As the decorating made me feel worse - my hubby has had to finish it off but looks fab. Again, because of how I've felt, we did consider to get someone in to decorate, but the costs were just ridiculous. Not being in the millionaire bracket (BIG LOL!!!) I've always decorated, wall-papered even tiled bathrooms in the places we have lived before. Have always wondered what it must be like to just get people in to do all the work you ever need doing to a place - and then have someone to peel the grapes!!!!!!!! Delirium is setting in now - is this another side effect! Anyway, Melissa really pleased you are feeling so good.

Penny - hope you don't feel so muzzy-headed. I do know what you mean about hiding how you are feeling in front of others like you said you do at work. I think women are generally very good at this and to their detriment sometimes. Don't know about you, but my husband - as lovely as he is - if he is unwell - we all know about it! With labs, as many of us have said before, mostly we all look ok from the outside which bellies the angst going on within. Do look after yourself Penny. I was glad to read in your last post that you were off to bed with a good book. I feel bed-time is my haven at the moment. I can relax and feel better in bed knowing I shouldn't be rushing around, doing the washing, ironing shopping, cooking etc. and having to put on the brave face that I think we all do.

Tomorrow is another day as they say. Goodnight all, Hugs, Gloria xx


Started feeling a bit more energetic the last couple of days, I've also commenced meditating again which I cannot recommend enough for stress reduction as well as healing the body. My acupuncturist told me when meditating our nervous system and metabolism slows right down which puts our bodies into a deep state of relaxation in which the body begins to heal itself. Im making a lot of lifestyle changes to try to get my health right, Im meditating and exercising regularly, Im following a vegetarian diet and have chosen to limit my alcohol intake to 1 or 2 drinks when I do drink which is not very often. Hopefully the steps along with PMA (Positive Mental Attitude) can get me back to 100%..

Keep that PMA everyone..

DC


Hi all

Gloria - Just to answer your questions.... I did get about 3 weeks of full pay when I was off sick at the beginning of this but was told i would then be on SSP which is about 60 per week. I cannot pay off anything with that so I had to force myself to return. It was awful but what can you do.

I got those visual migraines pre-labs but only about once a year. I have not had one since December but have had plenty of headaches and neck aches. Like you Gloria I believe this is all due to the muscles tensing as we hold our heads differently and try to compensate.

I feel very muzzy today, being tired makes it worse. I can almost feel the left side being off and woozy and every movement is off. Please go away labs and never return!!

Jemma x


Hi all,

Well my daughter woke up today with a mystery rash. She already had the chicken pox, so I am not sure what this could be from. She had a fever and cough two weeks ago that lasted a week. The pediatrician put her on an antibiotic. I have to take her to the dr. today. Just a bit worried that is why I am telling you all.

I successfully painted my bathroom. I am a bit sore in my shoulders. Not at all dizzy though. Again, I don't take the days I feel well for granted. I never know when I will get hit again.

We got 14 inches of snow. It is pretty for today, tomorrow is another story.

Remember to ice your necks ladies. It makes a world of difference, especially for headaches. My headaches now are all in the back of my head. Like a tight band around the back.

Keep the faith! Melissa


Hey its me again, at the crucial milestone of 3 months another week same symptoms :( I was wondering if anyone could either describe me some VRT exercises or provide a link for them.

Anyways Ive been trying to keep as active as possible and doing my full routine in the hope that one day ill wake up and this nightmare is over because it feels like its going to last an eternity at the moment. Also Id love some reassurance from someone whose 24/7 dizziness eventually disappeared to find out how long this horrible symptom lasts :(

Hi all,

S - good to hear from you but sorry you are still suffering. As I'm sure you realise this is a slow progressing thing. My neurologist said it is well known in the medical profession that the recovery process is not a line that starts at the bottom (the worst period) and then rises to the point of optimum wellness which is how most illnesses work. With labs it zig zags - peaks and troughs all away along the recovery period which differs from person to person. Oh joy! The dizziness also starts to become intermittent although at 3 months mine was quite constant like you. VRT exercises have helped me - I'm not sure it speeds the recovery period, but doing them does make dizziness less severe. Google the well-known VRT exercises Cawthorne-Cooksey. They sound daunting to do, and maybe initially you may think you feel a little worse but then find you start to feel less dizzy. I go to see a special physio for my VRT. She tailors them to suit me. I see her about once a month. She tracks my progress and then ups the exercises to make them more challenging. Now I am at 8 months I have to start jumping and running around - aerobic exercise, tennis stuff like that. Having said that we haven't had the weather for me to come out of hibernation yet LOL!! Anyway, good luck and let us know how you do.

Melissa - how worrying for you. Maybe it could be measles? It isn't a reaction to the antibiotics? Children pick up things so easily and you feel so helpless as what to do sometimes. Just what you need with the weather so bad your way. Hope all is OK - let us know. Give your daughter a big hug from me - she must feel rotten bless her. I'm really interested to hear what you have said about the headaches at the back of your head like a tight band - that is exactly what I have been experiencing as I have said before. The doctors all dismiss it as a tension headache because I'm so stressed out!! To be honest it is them that are causing a lot of my stress! I'm convinced it is all to do with our balance being off. What do you think? Anyway, glad you did your bathroom - are you pleased? Do you tend to do most of the decorating in your house Melissa. It is only since I've had this that my hubby has been helping - he can't stand any DIY at all.

Jemma - if I win the lottery this week - you'll be my first port of call and then you can give up work and concentrate on getting better. Wouldn't that be grand?!

DC - glad that you are feeling stronger. Can you say that you are back to feeling normal now? You are quite right about the PMA - I try very hard. I also do deep breathing most days. My neighbour taught me and I must say it does help me relax. Wish I could indulge in the odd glass of vino though - now that does help me relax. I never have drunk what I call a lot because of being a migraine sufferer, but a glass now and then does do wonders.

Anyway, am feeling a lot better although this morning was very dizzy, but just a bit light headed this afternoon but not without that tight band as you described Melissa.

Love and hugs, Gloria xx


Thanks gloria - I dont play the lottery but maybe I should. I think that we deserve some good luck having had the cruellest trick of labs cast on us!

I have just phoned the doctors to chase up my VRT to be told that I need to ask the consultant as they cannot help me, so I emailed his secretary and she said they never had the letter from my GP - back to sqaure one! it really is hopeless and so much to bear when you feel bad. They just dont give two hoots about people suffering.

Gloria - I meant to ask, do your ears still crackle? Mine are up and down but still not right and I still feel crunching in the left one. Also you know you said the dizziness is now intermittent for you does that mean you feel normal for parts of the day? I wish I did. I sometimes question if I have improved at all.

S - sorry you are still not well. I remember the 3 month milestone all too well. Praying for improvement, feeling very scared and having my first (useless) ent apt. Have you seen any specialists yet? I am not really the person to reassure you as I have been having 24/7 dizziness for nearly 10 months now but I do know that it is quite rare to be like that so I am just unlucky I guess, you will probably improve quicker like a lot of others.

Melissa, hope your daughter is ok, the last thing you need now is another health scare.

Have a nice evening all xx


Gloria,

I couldn't say Im 100% normal in regards to the labs/vn, but all I can say is Im getting closer all the time, still have a slight rocking sway in certain situations like busy food courts and places with bright lights, another problem I still have is a slightly fuzzy/snowy vision, its really hard to describe, its more noticeable on bright white backgrounds or when reading text. My main battle now is to get my strength back to what it was before Christmas, I honestly believe that going out and getting wasted prior to Christmas caused me to get run down and then come down with a virus again leaving me totally fatigued again, so thats my main reason to not drink anymore, its just very hard on your body and with what we have been through its just not worth the relapses..

DC

Hi everyone,

Jemma - hope today finds you feeling better than you did this time last week. My ears - they are better although I wouldn't say totally. My problem ear - the left - still feels a little full but what I get now is a lot of tinnitus and sudden onset of imbalance of hearing in either ear. It almost feels as if I have gone deaf in one ear. It doesn't last too long, but is very disconcerting when it happens. Still get quite a bit of crunchy sounds though. As for my dizziness - perhaps it is not a fair description to say it is intermittent and the rest of the time I'm fine - oh I wish! Whilst the severeness of the dizziness has subsided and at times to a fairly unnoticeable level. The rest of my head with the tightness, pressure pains at the base of the skull and back of the head are always there. I'm sure if those muscles relaxed, then I would be more dizzy. Certainly don't feel normal at all and I cannot say I have had a period without any of these symptoms at all. I know what you mean when you say you wonder if you have improved at all. I said the very same to my physio I went to today. I said the pace of improvement is so glacial that I don't know if I am getting better or not - but then thinking back a few months to how I couldn't even cope with my day and was just lying around, crying all the time - then there is improvement as I'm out and about, driving the car albeit feeling odd all the time. Thankful for small mercies I suppose.

DC - This thing is quite incredible isn't it? If someone told you that you would be struggling with an illness for a year you would call them crazy. But here we all are doing just that! It's the pits though when you think to go out on a special occasion - like you did before Christmas - really have a good time and then have to pay for it by regressing ten steps back! DC before all this happened, were you conscious of your health and fitness only you are very active and sound like you look after yourself diet wise etc or is this a step you've taken since having labs?

Melissa - hope all is well with you and your family & that your daughter is OK. Send hugs & love.

More woozy headed today - very tight head and neck - lots of ice and heat pad. I keep alternating so hope will improve.

Have good week-ends.

Love, Gloria xx


Hi all

Gloria - I am feeling more positive than this time last week. Thank you so much for your caring and interested messages. I have shaken off the worst of that cold which has helped a bit as not as fatigued. The tiredness does make this seem even less bearable because at least if you have energy you can cope more with the dizzies.

In many ways what you say I completely feel myself. When things are bad it feels like there is no improvement and I get despairing but like you said 6 months ago I was crying all the time and not just every few weeks and I could not cope with as many things as I do now. I suppose when I try to think back there must be improvement but I have never know anything so slow. Sometimes you wonder if a lifetime is enough time to recover from this!! I do get some moments - fleeting moments - of almost normality and it is heaven. Reminds me what I used to take for granted all the time. I still like being in a car, I feel almost completely normal when its moving providing I havent got some other ailment.

The osteo is still treating my stiff neck. I think I need to try and do more exercise to build up all my body muscles to deal with this. Like you say Gloria I may have to try more vigorous exercises like tennis or aerobics as we move towards summer (wishful thinking methinks!)

I might buy a heat pad for my neck this weekend.

Take care everyone xx


I am feeling so alone, so down, so negative at the moment. My story: I lost my lovely husband 18 months ago, it was sudden, a brain aneurism, there was nothing I could do to save him, I so wanted to. I had support, my family, but being me I tried to be strong, showed everyone I was coping when actually I wasn�t. Then 4 days before this illness, my ex-husband, my children�s father, died suddenly of a heart attack in his sleep. I�m not sure whether his is relative but I have been told that stress can bring labs on and I was under a lot of stress. After my husband�s death I threw myself into my work, anything to blot the sadness out. For 10 weeks before this illness I was on a strict diet, the Cambridge diet, where I would only consume just over 400 calories a day. The morning it happened was Monday 2nd November 2009. My alarm went off and I opened my eyes and got up and the vertigo hit. I struggled with it and it passed. I�d never had that feeling and put it down to my diet and went downstairs and had drinks and something to eat. I didn�t feel too bad and started getting ready for work. I bent my head over the bath to wash my hair and WHAM the world span and I collapsed on the floor. I took what seemed forever to pass, but was probably only a couple of minutes. Dazed I phoned my boss and was crying over the phone, he told me to phone the doctor straight away, which I did, but couldn�t get an appointment until the afternoon. I also phoned my daughter to come over as I didn�t trust that it wouldn�t happen again. When I got to the doctors, he took my blood sugar and it showed that my blood sugar was really low, he said he was surprised I was able to get there. He gave me a chocolate bar and said eat that and go home to rest. That was it. However when I got home that was not it. The dizziness got worse and my son, who lives at home, got so worried he called an ambulance. They came, took my blood pressure which was very high, but heart monitor and everything else, including blood sugar was fine. However they decided to take me into A & E where I got examined and they decided to keep me in as my blood pressure was high when laying and low when standing. The next day the doctor came and told me I had a UTI and that can make you dizzy, gave me penicillin and sent me home. The next day I had sickness, etc. and four days later ended up back in hospital and stayed 4 days to get rid of this UTI which they said caused the dizziness. On the day I was discharged I was all over the place with dizziness but they still sent me home. In the days that followed I went back and forth to A&E with the same dizziness. In the end they gave me a heart scan, CAT scan and everything, including blood has all come back normal. The only thing they have found is that I was low in vitamins and was told to take a multi vitamin. At the moment I feel so alone, I don�t have anyone I can talk to about this, I think as it has gone on so long people as so surprised I am still in this state. I feel I should get out, and I do attempt to walk up and down the street, but there are times when I feel I can do it and other times when I panic when I�m out because I feel I am going to faint. I am better now than the early days, I know I have improved, but I still have the pressure in my ears and also a burning sensation in my left ear as though I have an infection but the doc says its clear. Also my neck on the left side is painful, it feels like my gland is up, and around my left ear also. I suffer with headaches, something I have never suffered with and also my shoulder and arm ache.

I find I can cope in my own home but the moment I go out, I find it hard. The movement around me makes me dizzy. I wish my darling husband was here, he was so kind and would have helped me no end. Also I cant work but need to. The bill wont get paid on the SSP I am getting paid at the moment and I keep having to dip into my savings which wont last forever. There are days I just want to end it all, I don�t want to be like this forever, I cant see it ever getting better. Reading your posts has really frightened me, I need to get back to work. I have always been an independent person, now I am a person that relies on people to do things for me, in fact apart from my children, I don�t have anybody. I feel so alone in this. I still haven�t seen an ENT. Nobody seems to care. I don�t want to be here. This is no life.

Hi all,

Dear Shirley - welcome to this site and if you have been reading our posts you know it is our saviour. I am so so sorry to learn of everything that has happened to you. Life can be so cruel. I and all of us here totally understand how you feel because labs is such a horrible and strange illness, doctors find it difficult to diagnose - even so called specialists. Mine was preceded by a virus, but, like you I had had a few years of extreme stress too. It is alarming when you read that we have all had this for a number of months - but it does become easier to handle and does get better. It peaks and troughs and you think it isn't going away, but each 'trough' isn't as bad as the previous and they slowly reduce in severity. Anxiety, ear pressure, headaches, painful neck, shoulder/arm aches is all very typical and I can relate to all of that. Shirley - please don't feel alone - you are not. We are all here for you. Use this site to rant and rave because we all know and understand what every stage is like. Do get to see an ENT if nothing else but to confirm your symptoms and get into VRT (Vestibular Rehabilitation Therapy). These are head movement exercises to help re-train the balance mechanism. Help relieve the dizziness and do make you feel a little better.

I, unfortunately came on here today to say I will be away for about 3/4 days only my uncle who I have recently mentioned finally passed away yesterday. So I am going down to Devon to comfort my cousin and help with funeral arrangements.

Take care everyone. Speak soon and Shirley - Melissa on our site has us say the mantra - Keep the faith - this too will pass!

Love & hugs, Gloria xx


Shirley - Sorry to read what a distressing time you have had and now you have this to contend with. From the symptoms you described it sure sounds like an inner ear problem but I wondered if the doctors have suggested labyrinthitis or have you just had to work it out yourself? I completely empathise when you said nobody seems to care as the doctors are hopeless with this and have no understanding of how debilitating and strange it makes you feel.

Perhaps you could ask to see an ENT and be referred for vestbular function testing. This will show whether you have any significant vestibular damage. Even if you don't (like me) then it is still very likely you could be suffering from labyrinthitis anyway because the tests are not accurate and only test one fifth of the balance mechanism. However if a problem does show up then you will know definitely what it is. Once you know what you are dealing with then you can come to terms with it and start trying to do something about it although you will have read on here that for some of us the recovery process is long and arduous with many ups and downs along the way. If you havent already done so read the www.labyrinthitis.org website and the guestbook on there too for more info. I have read that stress can cause labs and I also strongly believe certain medications can. It may be worth considering if you do take any medications whether they could be damaging your vestibular system.

I really feel for you especially not having your husband to support you. It is some comfort to be able to rely on those closest to you when you have such a scary and debilitating illness. Please try to keep the faith. I still have lots of down days 10 months on but there is every chance you will recover quicker than this.

Gloria - so sorry to hear about your uncle. I am thinking of you and all my best wishes for your journey to Devon and getting through the next few days. I just wanted to say that in reference to your earlier post about the tinnitus and momentary deafness you get, it does mention these things in the symptoms section of that labyrinthitis website. Take care and let us know how you are xx


Shirley,

I am so sorry that you are feeling so lousy and have to deal with this all by yourself. This blog has helped all of us. Please don't be scared when you read what we post on here. I think it is cathartic to vent and get it out. After a while the people in your everyday life, although they are there for us, don't necessarily understand how we feel. This is not a linear recovery. It can takes weeks, months or years to get back to 100%. I am on month 9 and now have mostly normal days. I get hit with a swirly head now only if I am tired or hungry or sick. It has been a long road to recovery. I have to say that even though the experience was awful, it has really changed me in a positive way. I don't take anything or anyone for granted now. My body is my temple now. We have been given one life and one body and now I treasure it.

So this weekend has been trying to say the least. I have felt fine. My poor poor daughter has been so sick. She broke out in an awful itchy rash on Thursday. I took her immediately to the pediatrician. He told me they were hives. So since my kids have all sorts of allergies, I decided to take her right over to our family allergist. He said not hives...get a load of this... he said bed bug bites! Can you imagine my disgust and surprise. Well I wasn't buying that diagnoses. We haven't traveled and she has been sleeping my bed now for two weeks. I don't have single bite mark or rash. Also, as the day progressed she got more and more spots. Finally after a very itchy night and me up with her. I took her to the dermatologist. One look at her and she said erythema multiforme. Yes a new one for the books. This is two diseases now that I had never heard of and have had to deal with. So I called her pediatrician and he said her strep test came back positive. She has strep throat. The strep throat is what is causing the erythema multiforme. Basically her little body was trying to fight the strep and broke out into a rash. Ah the joys of new rashes, ear infections etc... Talk about worrying. So now she is on three medications. One of which she has to take 5 times a day! She is only 7 years old.

Thanks for letting me rant. Hope everyone is doing well.

Gloria, I am so sorry for your loss. You must be very sad at this point. I do hope you feel well for the funeral.

Keep the faith! Melissa


Melissa, I agree our body is a temple, if we start treating it like one we will heal from this, it may take time but we will heal, I have made some big changes in my life since getting this thing and the only way to stay positive is to look at this like wake up call and to start taking care of my body and mind. No more junk food, exercise as often as possible, meditate every day, no alcohol and keep a positive mental attitude..

DC

Hi Gloria,

Sorry to hear about your uncle, it really puts everything else into perspective when you hear news like that.

Hope you are doing ok.

Take care,

Gary.


Hi everyone. Really need to vent today, so I am sorry if this is a bit on the long side, but I just came from my regular ENT check-up and things did not go well.

It's only been 3.5 months since I contracted labyrinthitis and I've been seeing the same ENT since the first week it struck. I chose him because he is one of the best ENTs in New York City and has been listed among the top doctors in the United States many times for his contributions to the profession. He has been very encouraging all along, and as many of you know here, labs can be a long road with lots of ups and downs, as well as tons of anxiety and depression.

Today I went to see him after a month since my last visit and I told him how I am in a good phase right now, but that I had another bad period at the start of February. He asked me what happened and I said that I just woke up Febraury 2nd and felt like I was drunk. I've been battling brain fog, unsteadiness, and anxiety every day since. He then proceeded to tell me that I've made a great recovery, there is nothing more sinister underlying the illness, and that "we all have days where we don't feel so great" and that my anxiety issues are probably the real problem and that he can refer me to a psychologist. My jaw nearly hit the floor! Anyone here can tell you what I described to him today is par for the course with this illness. I then said that I get the feeling that he doesn't seem to believe in uncompensated labyrinthitis and he got visibly irritated and told me not to put those words in his mouth. I asked him why he doesn't believe me when I say that I'm not experiencing a linear recovery, and he said "who says recovery from illness is linear?" Then I said "well, don't most illnesses get steadily better over time?" and he said something about how we all pick up new viruses all the time and they can make us feel bad or something like that. Then he suggested that I start seeing a new doctor that specializes in the ear only. Basically, he decided to part ways with me!

Since I could see that things had deteriorated between us, I decided to request VRT and Vestibular Psychology services at the RUSK Institute here in New York. He told me that he doesn't generally make a referral unless someone can barely function, but he agreed to do it anyway. He thinks the Vestibular Psychology service will be of most benefit to me and admitted he hadn't thought of that himself. He filled out the referral and that was that. I will go see this new doctor he recommended for me, but I feel so crushed today. He was my only support system. The one person I thought could understand because he's an expert. It makes me feel like a nutcase to be told that "we all have good days and bad days". I mean, I'm sitting here with the monitor bouncing at me and a head that feels so sluggish it's like a have a weight pulling down on my brain! I feel angry.


Hi jessica

I completely empathise with your frustration. The way many doctors treat people with this condition is quite frankly disgusting in my opinion. I have heard so many people feel frustrated and upset when they have visited a doctor or ENT because of the lack of understanding they encounter. They either act like there is nothing wrong with you or treat you as if you are a hypochondriac that just needs to stop worrying. If they had to spend a day feeling this way maybe they would understand how weird we have to feel all the time for months and years on end!

I am still 10 months into this waiting for VRT and keep having to chase it up because i dont seem to be getting anywhere.

I had a panic attack on sat night which was awful. Whilst my dizziness has been not too bad these last few days I have been coughing and really short of breath. My heart keeps racing and my muscles are trembly. I dont know whether this is due to labs but i have a feeling it might be a reaction to the bromeelain supplements i have bee taking. I have stopped taking them now.

How is everyone else? Gloria, hope you're ok? Sandie not heard from you for a while and Maria? Also Susanne are you doing alright?

Take care all xxx


Thanks, Jemma. Do you take any medication for anxiety or depression? I'm thinking about starting a trial of it. I read on several website (including Wikipedia) that SSRIs can help speed labyrinthitis recovery in some patients because it helps stimulate new neural growth ... plus I really want to stop feeling like I'd rather die than live like this forever. I know that my inner ear is causing me this anxiety and the anxiety fuels the dizziness, so I want to combat the anxiety too. I feel lucky that I can start VRT whenever I want with my healthcare plan, but I needed to have a referral. They should call me within a week to set-up an appointment. So anxious to get the ball rolling with people who understand!


Thank you Gloria, Jemma and Melissa for your replies, its so nice to know that I am not alone and there are people out there that understand this horrible illness. I have not yet managed to see an ENT yet. I'm not looking forward to it as after reading all your post it really does seem a waste of time. My GP is absolutely useless, just tells me it will get better with time. I am not on any medication as nothing seemed to work for me. In the early days the only thing that seemed to work was stugeron but I only used to take it when I really needed to. I am not one for taking tablets but at the moment if they could give me a drug to alleviate this then I would take it like a shot. I had some more bad news today, I had put in for some benefits and today got told I didnt qualify for any. I am a widow living on my own and only get SSP which you probably know is 79 pounds at week. How on earth am I supposed to live on that. So more stress.

Hope everyone is OK today, one day I will write on here that I am feeling near normal. Cant wait for that day to arrive.

Gloria - I am so sorry to hear about your uncle, and thank you for taking the time to write to me before going off to your family.

Shirley x


Jessica,

I am so angry! These doctors are ALL the same! They don't have any understanding of labs at all! I went to two GP's before the one I go to now would listen to me. They all said that I was anxious. That woman my age (39) experience a lot of anxiety due to changing hormones etc.. HA HA Ha !!! Hormones I wish! My ENT was very patient with me and she told me that it will take a year for the nerve in my ear to fully heal. That I should expect "moments" where I will feel the symptoms. I had constant brain fog and rocking sensations for 4 months straight. When the fog lifted and the rocking stopped, I started to feel like I was walking on a funhouse floor. Like the floor was moving with me. The anxiety was AWFUL! Three different dr.s prescribed Lexapro. I didn't want to take it. I fought it hard. In the end, I did seek the counsel of a psychiatrist that prescribed Zoloft and Xanax. It has helped tremendously. I can honestly say that I feel 100% better most of the time. Now if I feel dizzy I don't panic. It took a good 2 months for the Zoloft to take affect. Jessica, you will come across many doctors that just don't understand this. Getting into VRT as soon as possible is your best bet. The physical therapists are the ones that will really support you through this. They deal with people all the time with vestibular issues. Rely on your instincts and know that you are not crazy and do not need that kind of help. You just need someone to listen to you and understand that this is not going away as quickly as you hoped it would.

Shirley,

I hope that you have seen better days. Try to see and ENT as soon as possible.

Jemma, how have you been feeling lately? Sorry about the panic attack. I HATE that feeling. Panic attacks were the first sign that I had labs. One night I woke up and had a huge panic attack. I had no idea what was wrong!

My daughter is much better thank god. That was a bit scary! My kids are off for winter break. It is snowing here again.

Gloria, I hope all is well! Melissa


I remember when I came down with this labs I had anxiety and panic for no reason at all, at the time I was feeling the best I had in years mentally and physically, the Doctor says to me "around this time of the year (holidays) people experience a lot of anxiety and worry", I was blown away, this guy was totally missing the point that the reason for the anxiety was the dizziness and imbalance. He ran blood tests, throat swabs and urine tests which all came back clear, but they did shown signs of infection but he didn't know what sort of infection, so he sent me home with antibiotics. On the next visit he says it may be your thyroid and we should run tests next time I see him, I never went back to him. So then I went to my regular GP who says its Labyrinthitis and Sinusitis and it will take time to heal, that was 14 months ago and Im pretty much functioning normal most of the time, but I do believe that the virus responsible for Labyrinthitis has lasting effects on our body physically and this would explain the fatigue and weakness which lingers for months and even years following the initial infection, some sort of Post Viral Fatigue Syndrome seems to accompany Labs and VN.. This is just my theory anyways, stay positive everyone..

DC


Hey again its me , I hope everyone out there is improving.

Well its Week 13 for me and im getting better slowly i believe, the 24/7 diziness is still there but i feel like i can cope with it for the moment.

I visited my ENT for the 2nd time after 3 months and he has begun to do the typical send around to a neurologist because hes not sure now if its Labrinthitis, im 100% sure it is and had to have a MRI which i knew would be normal and was 100%.

Anyways Ive had alot of suffering in the past 13 weeks so i hope this horrible thing disappears, its been particularly tough considering pre-labs Ive suffered with a general anxiety disorder my entire life which has only been exemplified by this horrible condition and has made me deeply depressed :(


Hi everyone

Just popping in to say hello and have been reading Shirley' story. It is so sad.

Shirley I feel so sorry for you and wish I could help but as we all know it is only time that will make you better (so your doctor is right in that respect). How much time is the question. For me, I have had it for five years. Albeit, it is on and off for me. Never 100% recovered but able to live a 'normal' life for some of the time.

I agree with you about the stress aspect bringing on Labs. I had had very mild dizziness just after a terrible throat infection/cold and this lasted for about 5 months, it didn't overly affect my life. Then my Dad went into hospital for a heart operation. My Dad is a big guy, weighing in at 21 stone though he is 6' tall. I convinced myself that because of his weight he was going to die on the operating table and one week after he had the operation (which went really well) the Labs hit. I was unable to function at all for about 5 months.

I also take stugeron as and when I need it - for shopping in town, going for a meal etc. I swear by it but wouldn't take it everyday though I do know it is prescribed for people with menieres disease.

Where are you from Shirley? I am sure it is the UK as you mention the 79 pounds p.w. SSP. This is what I got when I was on the sick from work. I ask because I am from the N.E. of England and I have a friend who was fighting for benefits as she was told she was not eligible. She went to a place called Disability North as they said they would help her fight her case. I don't know what the outcome was but maybe there is some group where you are that can help you. NOBODY can live on that small amount of money. Are you eligble for housing benefit and council tax benefit? This is an illness that totally controls your life and it is so unfair that it is not recognised.

Hello to everyone else and Gloria I am thinking of you, take care.

Sandie xx

Hi everyone,

I'm back for a few days before we go back again for my uncle's funeral at the end of next week. You have all been so kind with your words of concern. THANK YOU xx. It was lovely of you too Gary to especially write on here. I do hope you are continuing to improve & life is better than this time last year.

I am completely stressed - it is not easy having to sort other people's problems out and dealing with yourself when you are not 100%. We are a small close knit family and really, now it is just my cousin & I left - so we have to support each other. Although she looked after her dad, he supported her financially as well. Now that is gone, she is in a state of panic as what she will do. We have gone through everything and have made a plan of action (sounds like when I was at work!!). She will have to increase her hours at work and her son who lives with her will have to start contributing more. I know I don't have kids - but what is it with some of them that think at the age of 27 - as he is - he doesn't have to pay his way because he lives with his mum?!! I have been so unbalanced and swirly headed whilst away. My cousin's house is smaller - smaller room sizes and isn't it weird how that effects my head - but in a way it has been a good test, because I know I have had to just grin & bear it and carry on.

But, I just am so fed up with not feeling right. When you need all your energies and need to feel normal - it is such a strain when you don't at times like this.

Shirley - I do hope you are a little better or at least feel you are coping a bit better. People say money isn't everything but it is. Sorting out my cousin who is in a similar situation. Everything you do each day depends on money in some way or another. We have to keep strong & positive though.

S -my ENT consultant sent me to a neurologist. I think it is their way of saying well there is nothing sinister going on because of negative MRIs, and there is nothing more they can do. It is a waiting game. So not to make us feel abandoned, they refer to a neuro who will probably prescribe some sort of anti-depressant - which is what happened to me.

Melissa - so glad your daughter is better. Hope you are still doing great?

Jessica - your post about your visit to your ENT resonates so well. Initially I went to hospital because everything was so scary. They told me I had a tension headache and for me to get my hubby to massage my head!!!!! Then recently, the neuro said I was looking so much better and clearly progressing - that's the thing with this - you look OK from the outside which belies what is going on in the inside - right?!

Jemma - hope you have felt better having stopped the bromelain tablets. I think you have had a little relapse of your labs symptoms. Post flu/cold that you had? I did last week - probably stress-related. I had blurry vision, objects jumping around and huge sweats plus more dizziness than of late. So, as we have said before it peaks and troughs all the way through. So you don't get any idea really that this is getting better or going away.

Sandie - how lovely to hear from you. Thanks for your concern too. We all keep trudging on don't we? Good days, better days awful days all intermingle. It does become a way of life. I am hoping for better weather very soon. I'm sure more warmth & sunshine makes us all feel more energetic and brighter. What are you up to - apart from recent events - we have been decorating the inside of our house. Still got the front door to do this year though!!!!!!!!!

Anyway to all the Sharp Blue Crew (that's my name for us all now LOL!!!) - my love and hugs. Gloria xx

Hi everyone,

I'm back for a few days before we go back again for my uncle's funeral at the end of next week. You have all been so kind with your words of concern. THANK YOU xx. It was lovely of you too Gary to especially write on here. I do hope you are continuing to improve & life is better than this time last year.

I am completely stressed - it is not easy having to sort other people's problems out and dealing with yourself when you are not 100%. We are a small close knit family and really, now it is just my cousin & I left - so we have to support each other. Although she looked after her dad, he supported her financially as well. Now that is gone, she is in a state of panic as what she will do. We have gone through everything and have made a plan of action (sounds like when I was at work!!). She will have to increase her hours at work and her son who lives with her will have to start contributing more. I know I don't have kids - but what is it with some of them that think at the age of 27 - as he is - he doesn't have to pay his way because he lives with his mum?!! I have been so unbalanced and swirly headed whilst away. My cousin's house is smaller - smaller room sizes and isn't it weird how that effects my head - but in a way it has been a good test, because I know I have had to just grin & bear it and carry on.

But, I just am so fed up with not feeling right. When you need all your energies and need to feel normal - it is such a strain when you don't at times like this.

Shirley - I do hope you are a little better or at least feel you are coping a bit better. People say money isn't everything but it is. Sorting out my cousin who is in a similar situation. Everything you do each day depends on money in some way or another. We have to keep strong & positive though.

S -my ENT consultant sent me to a neurologist. I think it is their way of saying well there is nothing sinister going on because of negative MRIs, and there is nothing more they can do. It is a waiting game. So not to make us feel abandoned, they refer to a neuro who will probably prescribe some sort of anti-depressant - which is what happened to me.

Melissa - so glad your daughter is better. Hope you are still doing great?

Jessica - your post about your visit to your ENT resonates so well. Initially I went to hospital because everything was so scary. They told me I had a tension headache and for me to get my hubby to massage my head!!!!! Then recently, the neuro said I was looking so much better and clearly progressing - that's the thing with this - you look OK from the outside which belies what is going on in the inside - right?!

Jemma - hope you have felt better having stopped the bromelain tablets. I think you have had a little relapse of your labs symptoms. Post flu/cold that you had? I did last week - probably stress-related. I had blurry vision, objects jumping around and huge sweats plus more dizziness than of late. So, as we have said before it peaks and troughs all the way through. So you don't get any idea really that this is getting better or going away.

Sandie - how lovely to hear from you. Thanks for your concern too. We all keep trudging on don't we? Good days, better days awful days all intermingle. It does become a way of life. I am hoping for better weather very soon. I'm sure more warmth & sunshine makes us all feel more energetic and brighter. What are you up to - apart from recent events - we have been decorating the inside of our house. Still got the front door to do this year though!!!!!!!!!

Anyway to all the Sharp Blue Crew (that's my name for us all now LOL!!!) - my love and hugs. Gloria xx

Sorry folks - after my first submission - it didn't accept and went into error page. So I re-submitted. Sorry for the double entry!


Hi Gloria

Sharp Blue Crew - love it!

I'm hoping for some warmth soon too, it certainly does make a difference.

I have had quite a busy week as my daughter is on her half term holiday from school. Have been to the cinema twice and have been shopping in town and have been for a coupe of walks with her. The main challenge though was taking her to the Chinese New Year celebrations in the city centre. I did take some stugeron but it was still quite scary at times. There were thousands of people there and we were right in the middle of it all. I had visions of getting crushed in the crowd and my balance did go a bit but I managed to get through it and did quite enjoy it. We were there for 5 hours so I did really well.

As for the decorating - I have had the paint and new bits and pieces for the kitchen and the en suite for months but haven't got round to it!! I think the front door put me off big time! But I must say the front door does look good. If you want to know the paint I used so you don't have to go through the same nightmare then I will pop into the shed and get that for you. It was definitely using the wrong type that caused all my problems.

Take care

Sandie xx


Gloria - nice to hear from you and glad you are coping ok with all the arrangements albeit with a swirly head. I know exactly what you mean about smaller room sizes etc it happens to me as well. I haven't been too bad dizzy wise this week but my heart rate feels too fast and a bit like its pounding sometimes and I feel a bit nauseous too. I dont know if it's the after effects of the bromelain or just labs again.

I hope not to repeat the panic attack on sat night but you just dont know what's round the corner with this.

Jessica to answer your question I dont take any anti-depressants although at times I have been sorely tempted to ask my GP for some just to try to help get through this. So far I have resisted because I hate taking things but we will see. Some people avoid them but some find them very helpful so I am not sure....

DC totally agree with you about that post-viral fatigue. When you have this it is as though your body just cannot cope with anything else, so if you get even a minor cold or something it just makes you feel so bad and exhausted.

Sandie - nice to hear from you and glad you are feeling ok right now, long may it last. Did you ever have any formal VRT Sandie? I am still chasing up about mine. The ENT I saw privately does not seem to know if they offer VRT at my local hospital, in fact nobody seems to know. At this point I feel like they barely know what VRT is. They thought I meant balance tests when I first mentioned it! I cannot believe people who are supposedly highly qualified in these areas are so clueless. I may have to travel to Manchester anyway which will be a bit of a hassle especially trying to fit in around work. The wait goes on....

Speak soon Jemma xx


Gloria, Sharp Blue Crew!! I love it! Sorry that you have been so stressed. May I ask, if your uncle left any money for your cousin? You said that he supported her, he must have a will that he left her some money to live on. I know it is not my business, but I know that you are trying to help her. As for the 27 year son, my husband's nephew is 30 years old and lives on his Grandmother's (my husband's mother) futon in her one bedroom apartment!!!! With NO job!!! What is with these kids today? At 30 I worked and had a child and house and husband!

Gloria, I too feel a bit swirly headed in small homes. One of my very dear friends has a small home and striped wallpaper and ceiling fans. That room really gets me!!! LOL

Well I have been 100% better for a good 98% of each day. I usually feel a bit swirly in the head before I am due to eat a meal. I also feel it a bit before I go to sleep at night.

I'm a bit troubled by the fact that each morning I wake up with fluid in my right ear. Anyone else have this? I wonder what it could be from. Any thoughts?

Keep the faith Sharp Blue Crew!! Melissa


I find it comforting that the majority of people that post here eventually drop off. I take it as a sign that they got better and didn't feel the need to vent any longer! I wish we could get status updates on how those people are doing today.

Still I have read some scary stuff that makes me not want to read the older posts. One person said that they read an article about labs that says if you still suffer after a year, you will always suffer. Is that a fair assessment?

Melissa: I am considering taking Zoloft or Lexapro or maybe Wellbutrin? I've heard good things about these particular 3 medications. I am worried about the side effects, but have to weight it against the terrible anxiety I feel right now. Do you think you will be doing as well if you weaned off of them?


Jessica,

I think that at this point in labs I would be fine if I weaned off Zoloft. My plan and my dr.'s plan is to wean me off in October 2010. She wanted me to go on it for 12-18 months. It has helped me greatly to not panic over the symptoms that lingered for so long. I really feel that I am almost 100% better. It took me 9 months to say that. I will say that I never take it for granted. I could wake up tomorrow and get slammed with symptoms, but I would not panic over it. That is how the Zoloft has helped me. As for healing the nerve in my ear, I have no idea. I would like to say that yes it sped up my recovery. There is no way for me to know that though. As for the side effects of Zoloft, NONE! Really and truly, none. It is important to seek the counsel of a psychiatrist when taking these meds. I found that my GP had no clue what she was talking about with the SSRI's. Always get the real (brand name) Zoloft, not generic. The generic has additives that make you sick. Something that I learned first hand. Real Zoloft or Lexapro starting at half of the recommended starting dose. DO NOT jump onto them at the full dose! Make sure that you half the smallest dose. So if you take Zoloft that would be 12.5mgs for ten days. If you start Lexapro that would be .5 mgs for ten days. Then you gradually go up each ten days. I found that 100mgs of Zoloft worked best for me. I can't even believe that I know so much about this crap!!! It really did help me though. I am not one to take medications, but I really had no choice. Good luck. My advice is to not read back about what everyone wrote. You will drive yourself insane. Your symptoms and length of illness may be much shorter than theirs. Try hard to not get nervous. Fight really hard to get back to you! You can do it!!

Melissa


Hi All, thank you for all your replies. I've managed to get another cold which has made me feel off but I did manage to go into town to get myself some reading glasses as I've noticed since having this thing that I do feel worse when I cant focus properly. I thought I would be quite bad with all the lights in the shop and with the actual eye test but I was surprisingly fine. I even managed to go into a couple of other shops and would through the shopping centre and even though on occassions I felt a bit panicky, I really was ok. Coming home on the bus I even said to my daughter that I can feel I have made an improvement. However the following days I have definately felt imbalanced but I am hoping this is all down to the cold they I've got.

I'm also thinking of going back to work if I can get a lift in and a lift home. I'm working on that bit. I do have my own office at work and my work in generally computer bound which again is the reason I bought the reading glasses. I'm wondering what anyone thinks and if those who have returned to work think it has made them feel better or worse. I'm only asking this as I dont want to return to work and make this thing worse. However I am thinking that maybe it will make me feel better and be a kind of VRT as at the moment I still havent got an appointment even to see an ENT. I keep phoning but still no appointment. Any views on this would be greatly appreciated.

Hope your all fine, Gloria I think you are being so strong with dealing with everything you have going on in your life.

Take care Shirley


Shirley, I have been at work since day one and Im now at month 14 and nearly recovered, I think staying busy is important with the recovery process.

DC

Hi all,

Shirley - I'm so pleased to hear how positive you are being - well done you. My eyes have been weird with this thing too. I wear varifocals, but at the onset of this my brain could not cope with varifocals and dizziness. I spent a fortune to get, what was recommended, and that is 2 pairs of glasses. One normal distance and one for reading. It is a pain because I have to keep swopping, but still find I can't wear my varifocals for any length. As for your cold - anything like this seems to make labs symptoms a little worse, but you soon recover back to where you were before the cold. Although you maybe can't see it, but you are progressing. Keep onwards and upwards Shirley!

I think if you can manage to get back to work - even part-time or shorter hours until you see how you fair - is a very good idea. DC is right - if you can keep your mind pre-occupied it does help you not think so much about your condition. Do you have an understanding employer?

Jemma - guess what - the ear thing has returned. It feels so full and really hurts. Also have started to get daily nose bleeds. Went to the GP she said the nose bleeds are as a result of all the steroid nose drops the ENT gave me and have weakened the membranes in my nose - I need it quarterised!!!!!! Felt really off and shaky today - am convinced I am having a small relapse. That anxious feeling creeping up all over you - it is so horrible, but am carrying on with all the things I have to do today - you have to don't you!

Hope my SBC friends have a good week-end! Hugs Gloria xx


Hi everyone

Shirley you sound much more upbeat and I am pleased you are seeing progress. Hope it continues. I went back to work after a month due to finances. I dont know if it has helped as regard VRT but psychologically it has not helped me because I dont feel normal and I am constantly aware of it. it is a strain trying to keep going especially when you feel really bad and many times I come home feeling very tired and upset. That said, I suppose sitting at home all day would have made me feel down anyway. its the devil or the deep blue sea really!

Gloria - oh no about your ear, mine have been ok this week but I have suffered a relapse of the anxiety which i had hoped had gone for good. Even though I am not consciously anxious about anything my chest is so tight, I cant get enough breath, i am shaky and my heart is racing. It gets worse as the day goes on and has been like this since sat. I hate it and dont know why it is happening. I wondered if it is to do with compensating and the brain adjusting again because dizzy wise I have not been too terrible this week. I do hate the anxiety though and if it doesnt improve soon i may be forced against my will to take something for it.

This illness is a nightmare! xx


Hi Jemma, so sorry that you are not having a good time - when is it going to get better for you? I am not too bad at the moment but not brilliant either - oh I wish I could get those times back again when I felt good before all this - you do take a lot for granted when you have your health!

Today I have been out for lunch with a friend. I was dreading it this morning as I didn't sleep at all last night (couple of hours at most) and I am always so much worse when I am tired. I met up with my friend at 12 noon and was still feeling very wobbly. I did take some stugeron. However, once I was in there I was absolutely fine. The place was heaving, for one it was half term and for another they had a flipping discount deal on with coupons, which we didn't have! And it was sooooo hot. Anyway, as I said I was great and stayed for three and a half hours! I do wonder if I just get myself worked up about things, even though I am not consious of doing that because I am usually OK once I get there.

I did get VRT from the hospital but by the time I actually got my appointment with the balance guy I was only having minor problems, I was actually back at work. It took about 9 months before I saw him. The VRT you do get is no different to what you see on the internet but if you like I can post it for you. As you can tell by the amount of time I waited I went through the NHS and I saw a consultant who is supposedly a top specialist. He did nothing for me. My friend paid to go private and she got the same guy!! He did nothing for her either!

Melissa,I agree with you about Gloria's cousins's son. He should be paying his way. I was working at the time I met my husband and took on his child full time and another part time and I was only 23. Then we had three kids together! Kids these days don't know they are born. We pamper them too much! Glad to hear you are feeling so much better, good for you.

Jessica I'm at five years with this now but don't worry too much - you may recover much sooner than that. I have seen reports on the internet that most people are done with it by two years if the symptoms last more than the usual 6 weeks but I also read one report a few months back saying that five years could see a recovery too. I'm at five years in March so I'm keeping my fingers crossed. I must say though that I am feeling better than I have done for a long time though not reovered, I still have awful days, but maybe I feel better because I am not working now. Gloria - you make me laugh - you are having your nose quarterised - do you not mean cauterized. You don't want four noses do you!!! Seriously though it sounds awful. What drops do you use and how much. I use Beconase nasal spray which is a steroid and often notice small amounts of blood but have never had a proper nose bleed. If this is happening to you I might just ease off a bit on it.

Gloria how long have you had Labs now? I used to get that anxiety feeling and it does 'creep' over you. Mine used to start in my upper arms and then it would affect the upper part of my body - that's what would start the anxiety for me every time. But, you are right - you just have to get on with it and take each day as it comes.

Take care everyone

Sandie xx


Hi all,

Shirey ..welcome to the site..it has been my saviour these wonderful people all going through the same unfortunatly, but you can atlease know that is is labs and you are not the only one. So sorry to hear about your husband and ex husband, i am 40 and have lost both my parents and believe me although you will never get over it it will get better...I believe stress contributes so much to labs so maybe as you are down it hit you then..where do you work? take care xx

I am feeling alot better again probably for a short while though until i feel..oh no here comes that feeling again!!!and panic..i had a crown fit today but my dentist is great even my children skip and sing on the way to see him and for 9 year olds that is great that they dont mind the dentist..

Jessica..totally agree with you..i would love to see how the people who have dropped off the site are...shall we all decide now to stay in touch when we are back to full health.That would be great as you have all been so good at advise, feelings, and putting me at ease....and listening to my rants..

Glora...how are you doing? Like i mentioned earlier it is so hard to lose someone close to you,aswell as my parents i lost an auntie 2 years ago she was like my gran and it is very hard.

Sandie..5 years i thought i was bad april 2006 my first dizzy spell and from then on labsssssssssssss!!! do you think we will get better .

Does anyone feel this thing coming on when you have had a good few weeks.I feel odd like spaced out to start with and then thats it its stared..i hate it but i do try and keep busy, and as i love my job work does help.

Jemmajessica, melissa ..how are you all? Take care everyone

Penny xx


Im achy again, I have been hit with a virus on the eve of my 2 week holiday, doctor said its going around, Im of the belief that the stress of labs over the last 12 months has completely run my immunity down. Anyone else seem to be more prone to colds and flus since getting this..

DC

Sandie - my wonderful friend and spellchecker!!!!!! Do you know, my hubby wanted to look up on the NHS site to see how long I will have to wait for an appointment - no wonder we couldn't find anything - so that's how you spell CAUTERIZED!!! I try so hard to give this image that I'm so intelligent LOL!!!!!

Well, Sandie to answer your question, I am now 8 months with this. Yes, I am tons better than I was, but not normal. For me it is the weird head pressure, tightness thing that is a constant and then throw in the swirly head throughout the day. Still, 8 months is nothing. I realise that this is going to be with me for as long as it decides to be with me and I have to accept that. My symptoms don't scare me any more, but it just gets frustrating and worrying because progression is so glacial. By the way, as an aside, what front door paint did you end up using Sandie?

Penny - good to hear from you and so pleased you are feeling better. Sounds like you have had a busy week - dentist and half-term! I'm OK - thank you for asking. As you know too well, it is up and down. My recovery is quicker than it was on the down moments, so I suppose that is progression! You are so right - I was very close to my uncle. We all lived together in the same house for years - he, his wife (my auntie) and of course my cousin (their daughter). He still lived with us when Andy & I moved back home to look after my mum after my dad died. Although he was more able then, but he was in his 80s and still needed a certain level of care (meals etc). After my mum died and we had to sell the house, was when he had to go down to Devon and live with his daughter. So, although it is her dad, he was like a second dad to me in many ways. So the stress of all what is going on at the moment is not helping the old labs thing! You are right about making sure we all keep in touch just to say if we have conquered this thing. Will give us all hope maybe!!

Jemma - I'm taking a Vogels tincture called Plantago. It is supposed to be really good for middle ear and lymph gland clearance. Many people apparently take it for recurrent ear infections. Google it and see what you think. I'll let you know how I get on. I don't feel so anxious today, but it is only the morning - I hope not, but considering I'm on an anti-depressant - makes you wonder if that is working. Think I might wean myself of of it just to see.

DC - you poor thing. What a run of bad luck you are having. I'm quite sure you are so right about having weakened immunity, but, like you I'm taking so much vits etc I don't know what more to do - other than a relaxing holiday somewhere hot! Are you intending to go away for your holiday or stay at home. We've booked a week at the end of March. Only to the south-west of England in Cornwall. We have rented a small cottage by the sea. I know for us here there is no guarantee over the weather at that time of year, but it's peaceful and tranquil. The cottage is on a cliff overlooking the sea and has a huge picture window. So to sit and gaze out to sea even if the weather is no good, will be lovely! I hope you feel better to enjoy your 2 weeks. I don't know if you are a person to take holidays, but just a change of scenery and to totally relax - no phones, email etc - just make you unwind a bit more and regain some positivity. Take care.

Well, another day - doing more clearing out of cupboards and loft space today - getting rid of more junk. That for me is quite therapeutic - just getting rid of stuff and having more space in the house (probably to fill up with more useless things as I'm sure my hubby will say)!!!!!

Take care all. Speak soon

Sandie - sorry forgot to answer your question about the drops. I used Betnesol for 6 weeks and then went on to a nasal spray (can't remember name, but similar to Beconase) for another 6 weeks. I finished this medication last November. Then I had intermittent nose bleeds. Why I think it was related to the drops, is because when I went back to using them or the spray if my nose felt blocked only a few hours later I would have a nose bleed. Because I had my nose cauterized (!) about 20 years ago, I'm sure the lining of my nose is quite thin and susceptible to meds like steroids which is known for its skin thinning properties. Hey ho - just another little thing!! Gloria x


I forgot to say, my dentist appointment was at 12 yesterday so i had a small pastie befeore going.Last night i fancied a glass of wine this i did but oh dear...as i had not eaten it went straight to my head i lay on the bed feeling so rough and today i am still not to clever...This feeling is almost asbad as labs as i never get drunk and i am mortified i did after one glass!!! I steamed this morning and my nose is blocked again, heady and headache which i dont normally get, so i think i got abit of everything going on. Wether here lovely

penny xx


Hi everyone

Can you believe we have snow again in the North East of England? Not much but it makes it hard to walk and I still have problems with my balance if I am not on normal ground.

Gloria, 8 months in now for you. If you still had your job do you think you would have been able to go back at this stage? For me from the day of my first massive dizzy spell it took me about five months to start feeling better, the anxiety kicked in at about three months in and was over by then, and the balance problems started at about three months in as well. I went back to work six months in but I was nowhere near recovered. I forced myself to go back and I remember feeling so bad at work,all I ever did was go to work from 9 til 5 and have tea and go to bed. I only worked three days a week but it was awful. I thought it had all gone about nine months in as I felt really good and this continued for about three months til it all came back again. And that's the way it's been for me ever since. Good days, bad days, good weeks, bad weeks and so on and so on.

Anyway, Gloria, I can just imagine you googling 'quarterise' and coming up with nothing, that is so funny! As for the nasal spray - I've been using Beconase and now Nasonex for about a year now with no problems. I would like to stop using it but I do feel it helps to keep everything clear and my asthma has been better since I started using the Nasonex (I have post nasal drip and it was making my asthma worse). I have used a Vicks Sinex spray for years and years every night so that's probably why I have sinus trouble now!

I'm going to have a look at this Plantago stuff - how do you come across all these things? As for our immune systems - I take a very high dose of Vitamin C as it helps to absorb iron better (on a large dose of that every day), and I still catch colds and viruses! Makes you wonder why you bother doesn't it - lol!

My door is a lovely cream colour which I would say is more of a pale yellow - it is so nice - I love it. I will put another coat on when the weather is a bit warmer but my husband says I should leave it alone in case I have a repeat of last year!

Penny, I don't know if I will ever recover completely from this - but you know it could be a lot worse. You just kind of accept what has happened and it does get more bearable. When I relapse now I know I am going to get better again whether it takes two weeks or six months. Even between relapses (I have at least two every year) I still suffer but my symptoms are milder but I am still able to do things (with the help of my Stugeron!!).

DC - poor you, suffering again, I for one have suffered more with colds, viruses, allergies etc since I got Labs. For god's sakes I got the mumps last year at 48 years old and I had it when I was young - beat that - lol! Even my GP thought it was hilarious!

Anybody watch Eastenders last night - the live episode? Most excitement in our house for a long time - lol!

Take care

Sandie xx

Hi Penny,

So understand how you are feeling. I did similar the other week. Feeling so stressed with everything, I thought blow it I'm going to have a small glass of wine. Can't be done can it?! A couple of sips and makes me feel as if I'm in the first days of labs. Awful! Maybe we need to 'break ourselves in' a couple of sips daily?

Weather here just outside London is great today but very cold. Have just finished clearing out the loft. Hubby & I have been clearing for about 4 hours now and my head is started to get all swirly. Up and down stairs, bending, lifting - all good VRT I suppose. Anyway, rest time now.

Hope you feel brighter tomorrow. Love Gloria xx


Hi all,

Just checking in. I use a nasal spray everyday too. Veramyst is the name of it. It really helps, but I hope I don't have the same problems as you did Gloria! LOL

I have been feeling wonderful lately. I hate to say it, as I don't want to jinks myself! I get a bit swirly in the head if I am hungry or tired. Both easily remedied. I just hope not to relapse. You know how easily it can hit.

Have a great weekend! Melissa


Hi everybody, this site does wonders for me, it's so nice to know that I am not imagining my symptons, but not nice that you are all suffering the same.

Sandie - I was so interested in your post about returning to work as this is something I am hoping to do in the near future. What kind of work do you do and do any of you drive to get to work. If so how do you feel after doing a day's work, are you able to drive home ok? This is one of my worries that I will be able to get there but after working will be unable to drive home.

Gloria - whereabouts do you live as I live just outside London in Essex.

Penny - thank you so much for the welcome.

DC - what kind of work do you do and do you work full time?

I am enjoying, probably not the right word, reading your posts, you all sound so positive. I guess for me the thought of having this for years makes me feel frightened and depressed, I really dont know how any of you has coped for that long. I got an appointment today to see the ENT and its on the 19th April. That will bring the time I would have had this thing to 7 months. Has anyone found their GP to be supportive. As I've said before my GPs are absolutely useless and I feel that they think I am a hypocondriac (spelt that wrong I'm sure Sandie)but if they go back through my records they would see that in my entire life, I have been lucky enough not to need treatment for anything.

Today I went out for the first time since Wednesday, my brother came over and took me to Homebase because I wanted to get a new toilet seat. I don't know if anyone else feels the same but as soon as the front door opened and I step outside it's like, WOOOOOO ... the outside just hit me. I'm sure it's the difference in the closeness of everything inside and the vastness of the outside. I noticed that once your out for a while things do seem to settle down. Same with Homebase, once I was inside for a while I just seemed to get used to it. I wish I could just take this anxiety away.

Take care everyone. Love Shirley x


Hi Shirley,

I used to work in a Garden Centre mostly on the tills. I really loved working there and it was such a nice place to work but I found it very tough. I was on my feet all day and if we had a lot of customers and I was on a till it was an absolute nightmare. I would have to keep coming off and take a break. (That didn't really make much difference because standing or sitting I feel the same). If I was having a really bad day I would always be 'hiding' somewhere, not skiving but doing something that didn't make me so dizzy and would dread being called over to go on a till. I'm one of these people who doesn't say how they are feeling (apart from on here!) and I would always go on and on until I nearly keeled over. Then I would be sent home in a terrible state and then would be off for up to six months recovering. The business was family run and I really did feel that I was letting the side down as they really couldn't afford to have an employee like me on the books. I felt sorry for them! So, after my last relapse I made the decision that if I was ever going to have a chance to get over this I would have to give up my job for my sake and for theirs. They were really good and said that if I do ever get better my job would be open for me! Regarding driving, I have not driven a car for about 12 years which was long before I got this condition but lots of people do drive. I don't think I ever could though as I would, like you, feel too scared. Oh, and my sister has lived in Essex for a good few years now. We are from the North East (and I'm still here!). She has just moved to a brand new house on West Mersea - do you know it? She's only been there since just before christmas but it looks so nice. And, no Shirley, GPs really don't know much about this condtion. My GP at present is really nice and I can talk to her easily but I don't think she knows much about it! Like you, I was very rarely at the doctors before all this and indeed after the first year or so when you realise that you don't get any help at all, I have only ever visited for sick notes.

Also, the feelings you are having when you go outside are completely normal with this condition. When I used to go out in the early days it seemed like the ground was actually moving for me. It was so awful. If I looked over the fields they would 'bounce' even when I was standing still. It does make you want to stay where you feel better but you must get out as much as you can. Even if it's a walk to the post box and back. This is what I do now - when I have a relapse I get myself out, just for five minutes at first and gradually build it up. You will feel rubbish and if you can have someone to help you all the better, but challenge yourelf to do it and you will feel so proud of yourself. Do you have problems in the shower? - that was the worst place for me - I would make my daughter sit in the bathroom with me in case I fell over! Shirley a lot of these horrible feelings you have are ruled by fear. I used to be terrified that I would fall over because my balance was all over the place and I would be hanging onto the walls as I walked around the house but I have NEVER fallen over. Don't get me wrong it still all terrifies me when I get a relapse but you do get less afraid of it.

Oh and by the way it's hypochondriac - LOL!!

Gloria - have had a quick look at the Vogels Plantago - would be very interested to see if it actually works - keep us posted!

Take care

Sandie xx


Hello sandie - thank you for taking the time to talk with me. I don't think I am going to have any choice in the matter of returning to work, I will have to go back for financial reasons, I guess I am just stressing over the fact that I might not be good when I'm there and then have to return home. I don't know whether to wait a month of two and let my money run out or just bite the bullet and return. My boss has been understanding but I think there is only so much understanding he will give me.

You are right with it being fear that is stopping me doing things. I'm just so frightened of going out on my own and I know the longer I am leaving in the more anxious I am about it.

I am having a really bad day today, not with the imbalance but with anxiety and depression. I have had a crying day today, and just feel that I don't want to be here. I just feel that everything is getting on top of me and there is no one, apart from on here, that I can talk to about it. My family just get upset and say the odd "oh dear", my kids - well I just don't want to put this on them as they have their own problems to worry about. Sometimes I just can't cope with everything. I miss my husband terribly, he was always someone I could talk to and was always understanding and supportive. I just feel so alone. My son, bless him, bought me some flowers as he left me crying outside in the garden as I just couldn't stand being in the house, or anywhere in fact. He asked me if I wanted to go with him to Tesco but I just couldn't muster the energy. And also didnt look too good with all the crying - didn't want to ruin my image LOL!!

Sorry for the moan, I'm crying now typing this, lucky I can touch type as can't see the keyboard - or the monitor. God I used to have such a great sense of fun and humour - where has it gone !!!

Keep well my friends x


Shirley I can really identify with how you feel. I have had so many tearful days wishing i was not hear and thinking life isnt worth living. I try to think that i will get through it and i have laughed and had good times despite this. It is always hanging over me and stopping me doing everything i want to at the moment but so many people on this forum and other forums say it does get better and if it is labs the doctors say it does get better so we just need to hang onto that.

I know it must be so so tough for you without your husband. I sometimes feel that the only people who really care about me are my boyfriend and my mum and i dont know what i would do without them. I have other family, friends and work colleagues who show some interest in my condition but only my boyfriend and my mum REALLY care about me. This site is so helpful because it is so reassuring to talk to other sufferers so you dont feel like you are going mad. When i have thought about ending my life i have always thought that i cannot do that to the people who care about me and for all the other people out there who suffer worse than us, also i think about my grandparents who are no longer alive but who were always so proud of me when i was younger and i just think how it would have broken their hearts if they thought of me doing that. My granny lived with parkinsons disease for the last 28 years of her life and she never complained once and gosh how she must have suffered.

Sorry to go on, but i hope tomorrow is better for you and please hang on and keep fighting, WE WILL GET THROUGH THIS!!! WE WILL!!! xxx


Shirley you poor thing, i can too relate to your tearfullness.Many days i feel like that and sometimes for no apparant reason, i think it is to do with being scared aswell.Lke Sandie i tend not to show peolpe how i am feeling and just try and get on with it.Thats when my tearful moments start when no one is around and i think oh my god what if i have got this and what if i have got that...stupid isnt it??

Today has been an odd day for me up and down and again foggy head, drifting off and pressure top of my nose and side of my face and ear still bunged up!!Its the foggy/muzzy head i cant stand and thinking about how long this is going to last.

Work tomorrow aagh..i dont mind i love my job and it seems to take my mind off things, twins are back at school after half term.

Hope we all have better postings tomorrow!! I have still not heard from the stress councilling people i called last week after i had seen the dr, i will let you know if it works when i start going.

Sandie..i stopped having a shower as it seemed everytime i was having a shower i was having a worse relapse and i thought it could have been water getting in my ears..not sure though.

Take care all

Penny xx


Shirley, you have got to believe me that this does get better. I have been where you are now and I have cried many tears - tears of fear, tears of frustration and tears of happiness when you do have a good day! Shirley, you have had this for appx 4 months now and if you read my recent post you will see that I had the same symptoms as you are having at around the same stage. The anxiety was awful and I felt the same - I would be just sitting not particularly doing anything when that awful feeling would start creeping over me and I would know that the anxiety was starting. I would want to be anywhere but where I was at that moment and that is so hard to understand as you are already in your 'safe' place. I suffered for a few months with that and Shirley it did go away and has never returned even though I have had many relapses with dizziness/balance since. It must be so hard for you not having someone who you can talk to. How old are your kids? My daughter was 8 years old when I started with this - she was and still is my rock. I have two older kids at Uni too and they are brilliant with me too. Your son, bless him, how sweet was that? You really do need to talk to one of them - open up to them and you might be surprised at how much they really do care! This will not be a burden to them - they love you and will want to help even if it is just to listen. The trouble with this thing Shirley is that you will probably look normal to everyone else and it is hard for them to understand what you are actually going through. Get them to have a look on this website and the website www.labyrinthitis.org.uk - it is full of information for you and for them.

Jemma you are right, it is only the ones that are very close who really do care - they are the ones who know that you are suffering. And of course, your true friends but other people do just make the 'ah, poor you' sounds and get on with their lives!!

As for going back to work, you do not seem ready for that, I would take as much time as necessary to get back to a point where you really do feel better.

Jemma, Shirley, you actually have me in tears when I read your stories. Please - no more talk about ending your lives. I have been there and I know exactly how you feel but please believe me - you will both get better. You see and read what I get up to now so you know there is light at the end of the tunnel! I have suffered with this and I have had to give up work because of it but I take pleasure in the simple things of life now and I thank god for what I do have. Ok, so it is quite bad at times but I remind myself that it will and does get better.

At the moment I am more concerned about who is going to give me my asthma meds when I am old and grey - now that does concern me - lol!

Today I'm not too bad apart from the odd 'falling over' sensation that keeps hitting me. It only lasts a second or so though! My sinuses are a bit blocked and my right ear (always the right) is so itchy today I want to poke it out of my head. Penny, I have that pressure at the side of my nose/face too. And spots!! Three huge spots - don't know that is happening to me but my daughter thinks they are hilarious and is taking great pleasure in pointing them out every five minutes! She too, has gone back to school today - aaah - peace!

Penny, you will laugh, but when I first used to go in the shower with this I used to bung my ears up with cotton wool and vaseline to try and keep the water out.

Take care everyone and keep smiling - life is tough but you gotta be tougher!!

Sandie xx

Hi everyone,

Sandie without you explaining everything we would all have lost hope by now I think!

Shirley - please try not to get so downbeat - I know it is easier to say than do. Especially for you as you are on your own, but even if people do have close family and friends, they don't understand fully what it is you go through with labs. It is not just a matter of feeling dizzy, but there are so many associated symptoms like anxiety, depression, aches and pains etc. which when we all look fine on the outside, makes it harder for others to think you are not well. I have a lovely GP, but she hasn't had the experience of enough people with labs to know what all the additional symptoms are and, therefore, cannot relate to all my moans and groans about muscle pains, head pains and fatigue. So I give up now.

I drive, Shirley and have driven for most of the time I have had labs (except for the first couple of months when I felt so unwell). Like Jemma on here, driving actually makes me feel better. We can't understand why. My ENT consultant said it is because you are concentrating more - I'm not sure if that is why, but I enjoy going out in the car.

I live on the other side of London in Middlesex near Hampton Court. Many many years ago I lived in Bishops Stortford for a while and had friends in Saffron Walden. Loved all the little villages around Essex -and the country pubs!

I, too am feeling really off again. I think it was all the bending up and down to clear our loft on Saturday. Like Sandie, I too have given up work. I was only part time as I've semi-retired, but before all this happened was very young at heart and active. Although I do feel tons better, but still not 100%, I seem to have lost the spontaneity I used to have - maybe one day it'll return!

You must keep positive Shirley - for some of us it does seem to take a little longer to get rid, but that doesn't mean to say it will not go and you start to have, soon I'm sure, periods when your symptoms become a little less and then for a few days - it is slow and gradual, but you will get there. Even though it is 8 months for me and not without symptoms of some sort, but I have been functioning every day doing pretty near normal things for quite some months now. Anyway, send you a big big hug.

Penny/Jemma - hope you are battling well?! I can't believe my ear and muzziness has re-appeared the last couple of days. Maybe it was the glass of wine I succumbed to on Saturday night (like you Penny - needed a tipple)!!

Love to all - let us keep the faith now!! Onwards and upwards! Gloria xx


Shirley, please, please, please don't think about ending it all! I know how you feel. At the 3 month mark my anxiety kicked in so bad. I was awake for 3 straight days!! I could not sleep! I cried everyday! I have a wonderful husband and a supportive family and friends, they still didn't understand what I was going through. I looked normal after all. I am at my 9 month mark now. I have fought and clawed my way back to health. I have gone to countless doctors, had an MRI, CAT scan, blood tests. Shirley, start fighting! Get good and mad at this labs and fight as hard as you can to get back to "normal". I took up running everyday just to get the anxiety out of me. Eat healthy, avoid caffeine and alcohol (for now at least). Try yoga or pilates. Take control of this thing! DO NOT allow it to take control of you. You will suffer with it. God I hate it! I will say that I feel 100% normal most of the time now. It was a LONG road to recovery. It is still so painful for me to think back to how I felt this past summer. I don't even allow myself to go there with my thoughts. You can and will get better. It is not a linear recovery process. You will have many ups and downs in your battle. I still don't know when and if I will be hit again with symptoms. I NEVER take my health for granted anymore. Please try to hold on for a little longer. I did have to start taking Zoloft (anti depressant) I could not have done it without it. I am so proud of all of you on here that battled the anxiety/depression without the help of an SSRI. You are amazing!!

Gloria, I had not one, but TWO glasses of wine the other night!!! Whoo hooo!! That is a big feat as you can well imagine. I felt fine too!! YEAH!! I have to enjoy the times I feel good. You know what is lurking around the corner. That time of the month kills me!!

Everyone, please keep the faith! Please fight hard to get through it all! You are all amazing, strong and healthy!!!!

Go Sharp Blue Crew! (my small attempt at boosting your spirits)

Melissa


Hi all,

Head been very whoosy again today, ears still blocked and top of nose seen to have headache too.I am now going to steam ( which does nothing fo my natrally curly hair that my friend straightens every week!!!)Kept waking up in the night just dreaming of rubbish.anyone else like that.Must be so much on my mind i cant relax.

My car was due to go to the garage tonight as it wasnt registering any petrol, but it broke down lunch time...my work collegue bless him drove me to get petrol to see if it was that then bump started it and followed me to the garage.the car is only 2 years old..i too love driving so i am lost without my car.

I am going to watch the new drama tonight married single other which looks good, anyone else fancy it.Hope it takes my mind of this headiness.

I think the headace ( as normally i dont get one only at the time of the month) could be my new crown, i find i am clenching my teeth alot with it.

Shirley..please no more talk of ending it, come on here anytime we all listen, i know its not the same as face to face but i feel i could type and go on forever..so shirley be strong and take carexx

Off now to get my head under a towel in the bowl and dream of how my porche is doing in the garage without me....ha only joking i mean proton!!!

Love penny xx


Hi everyone. Just popping on to say that I had a call from the VRT clinic today. Someone is supposed to ring me tomorrow to set-up an initial consultation and assessment. Bad news is they told me that vestibular psychology services are "out of network", which in American healthcare speak means "it's expensive and your health insurance won't cover it." So the one thing that could probably benefit me most is probably not within my grasp! Between that and reading an article online about vestibular disorders causing permanent cognitive impairment, I am feeling super depressed now. Thank God it's the end of the day and I can go home from work. Keep well, everybody!


Jessica,

My plan doesn't allow me to go out of network either. I ended up paying a fortune for therapy. How about vestibular rehab therapy? Does it cover that? Not sure what vestibular psychology is. Can you explain?

Melissa


Hey Everybody its me again

Week 14 - So its Week 14 and they have thrown every test in the book at me MRI, caloric tests ENG im still waiting on the results of the latter two but the MRI was 100% fine. IM seeing my ENT in a day and im hoping he will get me onto VRT asap to cure this horrible ailment.

Anyways i have something very interesting to describe; i find it peculiar that despite this terrible rocking sensation i am still able to balance on one leg with my eyes closed for 1min on my left and right legs, so i don't think it has affected my balance at all its just the rocking sensation that gets me the most down :(.

Although at the start of Labs if I put my legs together and closed my eyes i would start to fall over almost and now i don't even sway so its definitely improving :D

If this rocking sensation or pendulum whatever you want to call it disappears i will be 95% as i feel like the brain fog and lightheadedness has disappeared that i had at the start of Labs and i am able to concentrate very well.

For the moment im trying to keep as active as possible in my physical cashier job and going to gym to excercise in the hope that it will improve my condition.


S - I was always able to balance on one leg without falling over too. It's weird isn't it that you actually get these feelings that you are about to fall over or that the world has moved from under you but you can actually balance on one leg! I did have a test at the ENT where you walk in a line, heel to toe, and I failed that but when I asked if I could do it again because I felt that I could actually do it, my consultant wouldn't let me. I found that very strange too! For me, I would love to just feel the dizziness etc because I could cope with that - but I will NEVER get used to the 'falling over' sensations - they still scare the life out of me!

I also get that swaying feeling especially if I had to queue somewhere - I did actually sway because whoever I was with would sense it. That only happens now and again now.

Take care

Sandie xx


Melissa: my insurance covers VRT, but I have a $40 copay each visit. I'm prepared to pay for that. However, they also offer Vestibular psychology and group therapy sessions, I suppose to address the unique anxiety and depression issues associated with vestibular dysfunction. Basically a psychologist who knows exactly why and what we're experiencing on a psychological level with this. Isn't that great! I want to go so badly, but I'm sure it's about $150 a session out of pocket. I don't know if group therapy has a fee, but I might attend that. It's a group of vestibular rehab patients meeting with a vestibular psychologist to talk. Also, they offer a question and answer session with former vestibular patients. RUSK Institute at NYU Medical. I'm dying to get started!


S and Sandie,

I too had great balance and never fell over doing my VRT exercises. I HATED the rocking sensation, but I HATED the falling over feeling more! Sandie, that feeling scared me too. Every once in while I will sit down somewhere and feel it every so often, like I'm falling backwards. Then the feeling that the floor was moving under my feet came. HATED that too! Now I am better.

Bitter sweet news today, my physical therapist decided that I'm done with VRT. I have to agree with her, as I have been feeling fine for 6 weeks now. I'm still a bit scared to actually let go of her. I guess it's a security thing. We all know that this labs can kick in at anytime! Wish me luck!

S, good for you working out through this. You sound very positive about all this. Keep it up.

Keep the faith! Melissa

Hi all,

Melissa - sounds all good to me! No more VRT whoopee!! I am due to go to mine in two weeks. Whilst I still have symptoms, I don't think I need more VRT. I don't know what more exercises they can give me. Basically, I have all the routines possible for this plus the fact they have advised me to up my physical activity which means I am at the end of the road with them. So I can't see the point of paying out more money just to be told to carry on as I am!! For me at the moment it is the heaviness of my head and the pressure and tightness across my eyes and back of my head. Anyway, way to go girl!

Jessica - although you have to pay for the group therapy sessions, I am sure that would help. Being able to meet others in the same situation and a chance to discuss how you feel, must be very good. Only wish we had similar here in the UK. It would be like having us all here on this site in the same room, sharing our experiences, but then have the advantage of having someone who is qualified to tell you why things happen and how to tackle them. Go for it and let us know how you get on.

Penny - how are you today? Like you I'm not that great at the moment. But have been here with same symptoms before, so more of the same basically! What did you think of Married, Single, Other? We watched it - like Cold Feet and the like. Quite good, although I find Lucy Davies a bit annoying!

S - good to hear from you. You sound more positive and more active - hope this is a turning point for you!

Shirley/Jemma - how are you both feeling today. Our weather down south is YUK! Soooooo need some warmer, sunnier weather to cheer us all up I think!

The upwards bit of the onwards and upwards has got stuck at one speed with me at the moment. I'm onwards, but not really going upwards. Please God let that change soon for us all!

Love & hugs, Gloria xx


Hi everyone

Melissa you sound like you are pretty much recovered now which is brilliant! I do hope it lasts forever.

I was very down yesterday with life in general. I have been off work today so not as bad and less tired but still dizzy of course. Have been chasing round after my VRT. I had just phoned someone about private sessions and she sounded good but then a letter has come in saying I can start on the NHS on 16th March so now I may as well wait for that before I start paying anyone privately. The woman I spoke to today did say that because of my age she would expect me to get back to 100% and she also asked if I get migraines because apparently she said people with the migraine gene find it harder to compensate which is why she thinks some people suffer for longer with this. I did not think I was a migraine sufferer until recently when I looked up about those weird little visual attacks I get occasionally and found out they are visual occular migraines (think I mentioned this before) so I guess I am disposed to migraines and Gloria I know you are too!

I personally have a theory that many people who seem to take longer to recover with this have left sided ear damage. I feel mine is left sided and I know both Ilia and Emma of the labs website also were left sided.

I have the falling sensation and swaying feeling as well as swirly head and trancy feeling at times. Horrible! My anxiety is still in the background, not quite as bad as last week but I do find my heart is racing and I go all shakey for no reason. It just seems to happen suddenly often without me consciously feeling worried. Quite often moving about can set it off but sometimes when I am sitting watching tv or lying in bed it happens and obviously any other stresses in life can make it worse.

Can't believe all these people finishing their VRT and I haven't even started mine yet. I do hope it brings some relief anyway.

Take care everyone xx


Hello everyone..another head swimming day for me with top of nose pressure and ear pressure...god when will it go.Sort of headache too but not too bad.My left eye also has a nerve than annoyingly is flickering intermitantly which is so annoying.

You all keep talking about VRT and i am not sure what it is, can you tell me. I should have asked before.

Gloria..married single other..hmm not sure bit boring i thought, mayne next week will improve. I too tried beconase nasal spray but got nose bleeds with it so i havent tried anymore.How long did you say you have had labs gloria, and how did it start with you?

Shirley...hope you are ok.

Good luck Melissa!!

Penny x


Well they just called to schedule my first VRT appointment for Monday, 1 March. I should be delighted, but that also happens to be my 30th birthday! Never would have imagined that one day I'd spend such a milestone b-day in vestibular rehabilitation, LOL.


Hi all, I was just wondering if any of you get hiccups after eating, drinking or just moving, not lengthy episodes just 1 or 2 hiccups

Hi Do any of you suffer from hiccups when just eating drinking or moving...not lengthy bouts just a couple of hiccups


Hi all,

Well of course last night I had a bit of a swirly head. It didn't last long, but a bit longer than I liked. Again, you know what is right around the corner for me. That is a trigger. I made it through last month without anything. Maybe I can make it through this month too. Cross your fingers!

Jessica, Happy Birthday!!! Good luck with VRT. I researched a VRT support group here in NJ and came up with nothing. Holy Name Hospital in Teaneck used to have a program, but it has since closed. Tell us how it is.

Shirley, Sandie, Penny, I too get eye twitches in my right eye. My right ear was the one that had labs. As a matter of a fact, my eye was twitching so bad for a whole day, a few days before the onset of all of my symptoms back in May. I was scared about it too. Who knew what it would bring! I guess it has something to do with nerves.

Keep up the faith everyone on Sharp Blue Crew! Melissa


Jemma - that awful feeling you get even when you are sitting or lying down was true of Labs for me too. I used to feel like I was falling over even if I was sitting on a chair or lying in bed. You can be as still as anything and actually feel like your balance has gone. I think it is probably because your ears are sending thousands of messages per second (or maybe it's hundreds) to your brain and the brain can't make any sense of these messages from the damaged ear. These messages are being sent constantly so that's probably why we never get a break! The racing heart and the shakiness are all part of anxiety. Anxiety is controlled by something (a nerve?), which is very close to the inner ear and it makes sense that these anxiety attacks are random and even occur when you are not worried about anything because of all the chaos that is going on with your ears and your brain.

Penny, VRT is a programme of exercises designed to get the brain to compensate. They can actually make you dizzier but this is good as it gets the brain used to the dodgy signals it is receiving from your inner ear. You will be given them by the ENT (eventually) but there are exercises you can get from the internet. With or without VRT you should recover but they reckon with VRT you should recover quicker. You usually have to do them a couple of times a day. Have a look at www.healthboards.com and go to the inner ear disorders board. Hope it's ok to post this Rich? There is loads of stuff on there and if you look in the 'sticky' which is the first post on the board titled 'information archive' you will find loads of information and some VRT for you to try.

Jessica, happy birthday for Monday!

Take care

Sandie xx


Hi everyone and thank you Penny, Sandie, Melissa, jemma and Gloria for your response to my last message. I am sorry if I have worried anyone.

Melissa thank you so much for the kick up the bum, I really needed that. I am so jealous that you and Gloria have had glasses of wine .. oh how I miss that.

I have taken it upon myself to book up some private VRT. The lady I spoke to seemed really knowledgeable and said she works for Whips Cross hospital with another consultant and also does talks on the subject. She said she will examine me and work out which exercises I should do and she spoke about the Cawthorne Cooksey exercises. She said that there are about 30 of these to do but only 2 might relate to me and that some people who do all 30 will end up dizzier as the others will not work for them. Seemed to make sense. She said that once my brain gets use to the exercises she gives me she will then give me ones that are more difficult.

It does worry me that these can make me dizzier until my brain gets used to them but I am having a dizzier time at the moment since my Sunday episode. Seems like I have gone back a bit so hope it doesn't last.

Jemma - you have worried me about the left sided ear damage taking longer to recover, mine is on the left side .. oh dear !!

Take care everyone


Oh sorry Shirley I dont want to scare anyone! It was just a thought about the left side, in fact the neurologist said it is possible i had a bit of damage to both. I feel its the left though. I have noticed that more people seem to have left sided damage but i could well be totally wrong. Please dont worry and i do hope the VRT helps. At least you are getting it early, I am at 10 months and not had any yet.

Hope everyone else is ok?

Jemma x


Today i feel very very off balance, worse than i have in along time.i sit and my ears seem to be filling up pressure at the top of my nose and i feel asthough i am moving..thats the only way i can describe it..maybe you are right Gloria my eye nerve may have been the start...again.. I asked my dr about the mri i had 4 years ago as i was so scared this was something else again the way i was feeling today..i said would anything have changed since i had it..and again for probably the 4th time now she said to me..no and you havent got a tumour!!!! she seems to know what i am going to ask and that was on the phone.

Mine to is the left ear, left eye and left side of face cheek bone too which i get the funny feeling in.

I have got lots going on at the moment with my hubby and i am very very stressed with it all although i do try and stay calm and dont think i am stressed i am obviously very stressed which is not helping my labs.

Very fed up tonight sorry all, swometimes i think i am loosing my marbles with this bthing i hate the feeling. and my nose is running too.Maybe i got abit of cold...

VRT who refers you for it?

Love to all from a 39 yaer old who feels 79 with this labs today!!!

Penny x


Jemma I should have said that I am paying for in privately as I havent been offered it on the NHS and I am not seeing the ENT until the 19th April. I just cant wait that long.

Penny so sorry to hear about your symptons .. I've had a cold too and that's what I am putting my returning symptoms down to, hopefully it will go soon for the both of us. I truely sympathise with you over the anxiety, its so hard to stop once it starts. Try to stay strong xx


Penny, I'm 39 too and feel like an old lady when this s... hits!

Today I felt swirly headed when shopping at the mall. Does anyone ever feel like your head are soooo heavy? Almost hard to hold up at times?

Am I the only one with right ear damage? I know it is my right ear, as I felt small tinges in that ear and have had fluid in it every morning now since this hit me. I wonder where the fluid is coming from? Any ideas? My ENT said it was just sweat. Well why wouldn't both my ears sweat? How come I never had that before labs? I'm not buying the sweat theory. Anyone have this too?

Shirley, you sound much better! It's okay to get down about this sh.t! Just don't ever give up the fight! It is going to be a huge battle. One day up, the next down. Awful really! Just perservere through it all, it will get better.

Melissa


Thanks for all the nice pre-birthday wishes, everyone! My VRT institute just called to say they've had a cancellation tomorrow, so now I don't have to go on my birthday. Hooray!

Melissa: now your VRT is over do you have to keep up the exercises at home?

Jemma: I have left-sided labyrinthitis too! Then again, I'm deaf in my right ear anyway, so I wouldn't know if that one had been affected too.

Just a couple of thoughts I wanted to share today that I hope make people feel better about recovery:

The first is that when I had an accident as a baby and lost my hearing in my right ear, I suffered permanent nerve damage. I was already walking, but I couldn't hold my head up or walk. My eyes just rolled in my head. I don't remember it, but I assume I couldn't tell which way was up or down. The doctors told my parents they didn't know how long it would take me to learn to hold my head up and walk again, but I did it. The nerve is still permanently damaged, but I made a full recovery. We are all experiencing this same type of damage from the labyrinthitis (not even as severe), so I know we will all recover in time.

The second thing is that Emma and Illia's website is so fantastically full of information to discover when you're first diagnosed with this condition, but it's also intimidating because they were both extreme and long-term sufferers. Their cases are so very, very lengthy. Your chances of suffering like that are statistically unlikely. Think of it like this: if you read product reviews of something before you buy it, and 25 people have left negative reviews, that's not accounting for the possibly hundreds or thousands of others who had no problems and therefore felt no need to complain about it.

I believe we're all going to be fine in time and that we should do whatever it takes to get there: VRT, meds, psychologists, support groups. We'll get there! x


I haven't posted in a long time, but I wanted to give some of you hope.

I think I am fully recovered. My labs started after the flu March 2009, and was never that severe. I had bad head symptoms for 5 weeks, then those lifted. I had wobbly legs and moving ground for months. I developed bad anxiety at about two months into it and that led to some psychiatric problems. I know that at 7 months I felt 95% recovered but would still occasionally feel wobbly and off balance. I was on some drugs that made me a little spaced out and dizzy so I never knew if I was getting better or not. I am almost off the drugs and my balance seems fine....so 7 to 11 months for a relatively mild case.

I never think about the labs now, except sometimes I feel my peripheral vision does not track moving objects very well. Hopefully that will improve too. I want everyone on this site to get well. This is an invisible illness, partly because it is relatively rare and partly because it is hard to describe the symptoms to other people.

Oh, and I still have some tinnitus, but it rarely bothers me, it is not that loud anymore.

Don't give up. I recovered, you will too. I can run and grocery shop and go for car rides just like I used to. :)


So i saw my ENT today and got the results of my caloric and ENG back, apparently there is nothing wrong with my labyrinth or my inner ear / ear or so says the ENT that diagnosed labrinthitis 3 months ago ... What the f*** honestly now hes retracted his diagnosis and is convinced that it is nothing to do with the ears and must see a neurologist :(. He said that if i had labrinthitis it would of completely wiped out my left sided labyrinth but as it is still working i didn't suffer labrinthtis, this doesn't make sense.

I know its inner ear because i still get pain in my left ear and all the typical labs symptoms i.e terrible rocking/ swaying while still ;(yet he doesent want to listen to me and i even asked if he could explain if its not my inner ear why did i wake up with terrible true vertigo that first morning of suffering in November ;(

Hi all,

Melissa - hope you are going back up to feeling better. Just when you think you are on the upwards road to full health - wham! Hopefully, it is just that time of month and will only be for a couple of days.

Jessica - Happy Birthday for Monday. Hope you feel much brighter and have a good time on your special day. Good luck with your VRT.

Penny - so sorry to read you are feeling so low. It certainly doesn't help if you have other worries on your mind as well as coping with labs. I can't think too much into the future at the moment and take each day as it comes. I am so fed up with not feeling 100% and trying to cope each day as if everything was normal - it is EXHAUSTING.

My labs is all to do with my left side and I too get that eye-twitching thing on my left eye. It is so annoying - I think look like that mad French police inspector in The Pink Panther whose eye kept twitching when he was in a rage LOL!!

Shirley - pleased you are going to start VRT. Don't be alarmed - you really do cope with it fine. It is quite amazing how the brain quickly adapts to what you are doing.

Jemma - hope you are feeling a bit better. I, too have felt so down again this last few days. Maybe, because I had another bit of a relapse and like Melissa have this heavy headed feeling which is causing my muscle strain to my neck like nothing else. How is your neck these days? Interesting, too to read about those with migraines - aren't we the lucky ones Jemma?!!!!!!!

Anyway, just to say again I won't be around for a few days. Going down to Devon for my uncle's funeral tomorrow and staying with my cousin over the week-end. I do hope it stops raining and will be a bit brighter. These occasions are gloomy enough without the addition of gloomy weather.

Anyway, take care my Sharp Blue Crew!

Love & hugs, Gloria xx


Hi Melissa,

I have never had a diagnosis as to what ear is affected for me but I think it is my right ear. I always get pain, flutterings, pressure etc in that ear. Today it is bugging me again and I feel a bit woozy headed. Strange thing, last year (Aug) I stopped using the beconase nasal spray because of the steroid link and started on Rhinoplast but within a day I felt weird, yesterday I used the Rhinolast again and today I feel weird. I think I'm going to be on these steroid nasal sprays for life. Anyway about the ears, I am always poking my finger inside my right ear and my GP says my eardrums are quite scarred!

Jessica your childhood accident sounds awful - I am so glad you recovered from that. When I was about 5 years old I had my adenoids removed as they were affecting my hearing and also throughout my childhood I never went on swings, roundabouts etc as they always made me feel so ill. It makes me wonder if I have always had something wrong with my ears/balance. I am also one of these people who can't stand heights or standing at cliff tops that sort of thing.

KC - lovely to hear from you and hope you never have to suffer again - long may it last xx

S - don't worry too much about your diagnosis at the ENT - they are numpty's!! Almost everyone who has Labs has normal test results. They cannot tell 100% if you have Labs until they do an autopsy after your death - the inner ear cannot be seen on MRI and the tests are often unclear - they can only go on symptoms. Don't know why they bother with all the tests in the first place! My diagnosis was Vestibular Neuronitis and all my test results came back 'normal'. They said it was VN (which has the same symptoms as Labs so most doctors call it Labs anyway), and this was because I had continuing balance problems and they said it was probably because the virus had damaged my balance nerves just outside the inner ear. It does make you so mad doesn't it - you know what is wrong with you and there is so much information out there but do these doctors actually look into any of it - I don't think so!

Gloria - thinking of you xx

Take care everyone x


Jessica, I do hope that you are able to get to your VRT appt today. It is snowing pretty hard now. You sound very positive. Good for you!!! I think it is a matter of taking your your health into your own hands and standing up to fight this monster. I am so sorry about the accident you had as a child. What a way to start out! At least you don't remember feeling dizzy. I have read that accidents, even from years before, can cause vertigo. Google cervical vertigo and you will some info on it. I wonder if maybe yours is just a flair up from when you had the original accident.

Gloria, I feel fine and only had a brief moment yesterday when I was on here typing. Today I am okay. It is snowing here and the barometric pressure gets me a little. All in all, I really do feel fine.

Keep the faith! We are all fighting hard! Melissa


Hi Melissa. I am off to my VRT appointment now. The snow couldn't stop me! I've been waiting for this day too long. :)

As for my vertigo, it's definitely labyrinthitis in my "good" ear, not a flair-up in my deaf ear. I know because this all started with a cold. I woke up one morning with a sound like a motor running in my "good" ear. Between that and my deaf ear, I could hardly hear myself speak. The temporary deafness was from inflammation in the inner ear. Been dizzy ever since.

Wish me luck!


Jessica, good for you getting there! How did it go? By the way, to answer your question regarding doing VRT on my own. I started VRT in October. So that is 4 months of VRT. She didn't mention to do it at home. However, I haven't even been doing them at home! LOL If I feel dizzy, I know what to do. Good luck

Melissa


VRT went well yesterday, although I had to hike across Manhattan in blinding snow and was soaking wet when I arrived.

My first thought was I was amazed by the variety of people there with vestibular problems. From young, healthy-looking men to old, frail-looking women. My therapist was really nice and explained all about the inner ear to me before having me perform a series of tests. I did very well at some and quite poorly at others. She told me that 90% of physical therapy success will be practicing these exercises at home. She gave me thing to put on the walls in my house and balance exercises too.

Wants to see me twice a week, but no way I can afford that at $40 per session. That would be $320 month for the next several months. Plus the costs of my monthly ENT check-ups? No way. I would go every day if I could, but once a week will have to do. The good news is she told me "recovery can take a while, but you won't be dizzy for life." Yay! Have a good weekend everyone! :)


Jemma- Funnily enough my Left ear is my labs ear as well so maybe your theory is right about people with left sided labs taking longer to recover :*(

Hi everyone,

Am back after a fairly exhausting week-end, but successful - if you can call a funeral that! The weather, which had been awful - so much rain - finally ceased and on Friday, the sun shone and was truly spring like. This made the whole thing so much better to handle. It was a great celebration of his 90 years rather than a gloomy, sad occasion.

I have been troubled the whole time with such horrible neck, head muscle spasms it is driving me mad. I had bad imbalance and dizziness last week, but this week am left with very tight muscles. For me I think this is part of the aftermath and the brain still not connecting to everything. I'm having a physio massage this afternoon. She is a person I was introduced to and she does home visits which are half the price of my physio that I usually see - so we'll see how that goes.

Anyway how are you all doing. Jessica - you sound really positive. The thing you pin on the wall? What do you do with that?

Penny/Jemma/Melissa/Sandie - hope things are good with you too.

Take care Hugs, Gloria xx


Hi Gloria

Glad things went well for you. I'm ok, still slightly dizzy at times and ears are playing up but not too bad.

The things Jessica pins on the wall are probably just cards with shapes or something on that you look at - nothing spectacular!

Take care

Sandie xx


Hi Gloria. My VR therapist gave me a letter "B" (not sure why) that's about an inch tall, black on a white background, that I pin to the wall at eye level. Then, keeping my eyes fixed on the "B", I shake my head as if to say no for 60 seconds. I can only shake my head at a pace that will keep the letter steady and not bounce, jump or blur. Then I take a small break and repeat the exercise, but nodding my head as if to say yes for 60 seconds. I do this twice a day now along with some balance exercise where I have to shut my eyes and require my inner ear to help me balance. I Keep the "B" on the wall in my kitchen so that every time I'm in there it reminds me to practice.

I am feeling really positive, Gloria. I've been having "good days" for the past 4 or 5 days, and my head just feels different this time than it has over the past few months when I've had good days. I'm being cautiously optimistic that I may have turned a corner here. Only time will tell!

P.S. Had a lovely 30th birthday yesterday, so that also helped with the positivity :)


Gloria, I'm glad that your uncle's funeral was a positive, happy time for you and your family. That is the best way to celebrate someone's life.

Jessica, you sound great! Try to add the following to your head turning no: Walk backwards and forwards shaking your head no for 3 minutes. Stand tandem, shaking your head no for 3 minutes, stand on a pillow or piece of foam and shake your head no for 3 minutes, stand tandem on the foam and shake your head no for 3 minutes and finally close your eyes for three minutes, while standing tandem! Those are the exercises I had to do in VRT. Good clean fun! LOL

I have been surprisingly well! YEAH!!! I really feel like my brain has compensated, but I am also so scared to write that down! You all know what I mean... I really just a get a wee bit swirly headed in the evening right before dinner. As soon as I eat, I feel fine again.

Has anyone flown with this condition? We are flying to Florida in April and I am so scared that it will trigger something.

Keep the faith, Melissa

Hi all,

Jessica - so glad you had a really great birthday. I didn't have a letter to pin on the wall, but with me, I hold a word on a piece of paper and do the head shaking stuff. Then I had to hold the paper and move it from left to right but look at in from the opposite direction (that sounds weird - difficult to describe). In other words when the word was to my right I was looking at with my head turned slightly to the left, but still keeping the word in focus. This I then have to do whilst walking in a straight line (ha!) toe to heel. Depends on how imbalanced and dizzy I feel. I have days when I can do this no problem then others where its like back to square one. Anyway, sounds like you're doing great - keep up the good work!

Melissa - sounds like you are definately well on your road to full recovery and are at the winning line - maybe just over it! Has your daughter had her Communion yet? I remember you spoke of getting her dress.

For me, I still don't think I have fully compensated yet. Whilst I feel better than I did last year, my head still doesn't feel right. So, have to keep on hoping and praying for my 'release'!

I, too, would love to know if flying can put us back to square one (God forbid). We have no plans this year to go abroad, but that is only because I don't feel confident enough to take a risk. I want to feel really well - so maybe next year. But would love to hear from anyone who has flown. I remember Cathy who posts on this site, saying she had flown 3 times whilst suffering with labs, but don't know if that was at the beginning or at the end of her 'time'. Keeping the faith (although so difficult at times - like now - when my patience seems to have run out).

Love, Gloria xx


Hi everyone

Not posted for a few days as been very stressed at work. We seem to be getting busier and the workload is growing and of course people dont seem to take any account of the fact I am not 100%. I think a lot of people probably think I am skiving because I finish early each day but dont realise how hard it is to keep working through this illness every day.

I do feel the dizziness has improved a bit and the swirly head feeling has times when it is improved but of course times like today when it is worse again. I have a really stiff neck despite the osteo treatment which I am certain is part of the compensation process. I am still tired a lot and have had a bad headache these last few days - but that may be due to stress at work.

Gloria - so glad you coped with the funeral ok. Getting through events like that are hard at the best of times but with this it's so much harder to be social.

I start VRT on the NHS at my local hospital on 16th March. Can you believe that many of the doctors and ENTs did not even know if their own hospital offered VRT and actually told me I would have to travel 15 miles to Manchester for it. I then received a letter from the Neuro Physio Dept at my local hospital saying they do offer VRT. How crap are these ENTS!!!

Melissa I have heard many people say they coped fine with flying and labs although I think there are a few exceptions (see Emma's Story on the labs website). You sounds really good at the moment though and as Gloria says I am sure you are almost at total recovery so just go for it and have a great holiday!

Glad you had a good birthday Jessica - My birthday was in October and it was a bad day. I know what you mean when you said you do not ever think you will be spending such a large part of time and even important occasions with this condition which most of us had never even heard of until it happened to us!

I am not planning to go abroad this year Gloria but I think you mentioned renting a cottage in England sometime and that is a really good idea and something I would like to do. It would be nice just to have some quiet walks and a change of scenery but without the hassle or airports and the worry of flying and being stuck abroad if your symptoms get worse. I wonder if you have to declare with your travel insurer that you have this condition - probably the premium would shoot up if so - any excuse to rip us off!!

Anyway I will get back to work now. Still praying to get to full recovery one day!

Wondered how some previous posters are - Susanne, Amanda, Niki, Gary, Shirley?

Jemma x


Hmmm, well my husband is Irish and we're going to visit his family in Ireland at the end of this month or start of April. I'm not worried about it. I can do everything else while dizzy, so I may as well have a dizzy holiday too, if the worst should happen, LOL.

I think that the unless you have that mal de debarquement syndrome you should be fine flying. I intend to take a valium before I board the plane! :)

Melissa, I totally know what you're saying about not wanting to write it down incase you jinx it. I have had the best three days in a row now. I would say 99% myself. Previously I've only been about 95% on good days, so I am keeping my fingers crossed. For you too! For everyone here!

Jemma - great to hear from you. I was wondering if you are ok. I still don't know how you cope with working - amazing, but you just know there are things you just have to get on with if there is no alternative. I know if I was younger then I would be in the same boat as you and would have had to work. Do try and get a short break in the country sorted - as you say a change of scenery can be very refreshing.

Well today I went to see my VRT therapist. Because I now get so much head and neck stiffness which has really messed up my muscles, she says its back to the old neck thing causing problems. She did quite a bit of work on my neck and shoulders and has suggested I now go back to my doctor for a referral (again) to see the orthopaedic consultant and get a pectoralis minor syndrome and thoracic outlet syndrome test done??!!!!!!!!!!! WHAT!!!!!!!! She is saying that I have residual dizziness from labs but the neck shoulder thing is now the more predominant problem. Whilst she would love to help, it is now more general physio I need. So what to do!! I still told her that my head doesn't feel right and I know it is balanced related. Afterall, I never felt like this before labs. Aren't you at the mercy of so many people just because we do not understand and like to think that they do - but clearly I don't think they do. As you say Jemma - you would think that they should know who and who doesn't have VRT facilities! Interesting that you still have the stiff neck thing. You see, I am sure it is related to having labs. Afterall, if you have been dizzy for so long of course muscles are going to get exhausted, but I wish there was someone who would say that and tell you what to do! AAAAARRRGH!!!!

So here I am not knowing what is what except I don't feel normal and am so so fed up with the lot of it.

Anyway, glad you have finally got a date for your VRT - do let us know what exercises you have to do. It will be interesting to compare notes.

Jessica - glad you are feeling a lot better and continue that way like Melissa. You must be excited about your holiday to Ireland - it is beautiful and you should arrive just in time for some better weather. Have you still got snow in the US?

Echo Jemma's remark about previous folks - how are you all doing. Some total recoveries perhaps?

Hugs Gloria xx


Gloria, yes we still have snow here and it is very dirty now! LOL Meaghan's communion is May 2nd. We have her dress, shoes and the invitations all mailed out! Gloria, I had the same problem with my neck. The muscles are tight and then they spasm and push on the greater occiputal nerve and other nerves that control your balance. What really helped me was to strengthen my neck and shoulder muscles. I was given a theraband (red, flat, stretchy) and I had to and still do, 30 reps hold band in your two hands with your arms straight out in front of you. Pull the band open and closed 30 times. Remember to not bend your arms. Then do 30 reps with your arms at an angle. Like a cheerleader. Hard to explain. Also, I had to roll a piece of foam like a pool noodle up and down the wall 30 times. Each time I went up, I had to extend my right then left arm backwards. I had a million of these exercises. Now I just take yoga and pilates and do very light weights. Then my physio would do a deep tissue massage. I will miss that the most!!

Jessica, I'm not concerned about being dizzy from flying. More afraid that it will hurt my ears or throw me off again. It is so nice to actually feel like myself again! My husband is Irish too. Both sets of his grandparents came here from Ireland. County Roscommon. Where is your husband's family from?

Keep the faith!! :) Melissa

Thanks Melissa for that. I do have a red thera band - can't remember what for now - think it was years ago and therabands were all the rage for strengthening exercises. Since then it has been collecting dust!! I spoke to my physio this morning and she understands the problem - this is a secondary condition from labs. So I need to see my GP to get a referral otherwise I have to pay yet more money. I have been given some stretches to do, but will definately try yours too. I am so pleased you feel normal Melissa - you give people like me encouragement that normality is there!

Hopefully by May your weather should also be much improved. Like us in the UK you have had a bad stretch of weather. I bet Meaghan will look absolutely fabulous. I remember mine only too well. I think I was about 9 years old and wouldn't take my dress off even to go to bed!

Anyway, will start therabanding and of course keeping the faith!

Love & hugs, Gloria xx


Hi Gloria - I think you are hitting the old problem of one expert cant really do much more so they try and fob you off to another one. Whatever they say I am sure your symptoms all stem from the balance problems because so many of us on here have stiff necks etc it cant be coincidence!

Melissa - those massages are great aren't they. I have stopped my osteopathy now due to money shortages and I will miss that part a lot.

I have been so busy at work it really is sending my head into a spin. It is so hard trying to keep up with everything whilst feeling woozy and off balance. I just collapse as soon as I get home. My ear has been so clicky these last few days. I wonder if that is the muscles inside the ear or fluid building up again. How are your ears Gloria?

I really wish I had more time to do exercises and sort this out but with work I am just too tired to do anything when I get home.

Take care all xxx


Hi Melissa. Have you been over to Ireland? I lived there for years. My husband is from County Kerry. His entire immediate family live there. They've not seen our son since he was a newborn and he's about to turn 2 next month! We're very excited to visit them. I especially need a vacation after all the stress I've been under.

VRT went amazingly well yesterday. My physio was having a tough time finding any exercise to make me dizzy. But the thing is, I've been here before. Feeling amazing only to slide back again. I hope she doesn't get the wrong impression and think I don't need the VRT. It's a horrible way to live, always worrying when the other shoe is going to drop. Cautiously optimistic is the key!

Hello all, it's been a while since I posted but have been keeping track of what's been going on, and glad to hear some of ye are feeling better. Thanks Jemma and Gloria for asking about us.

Gloria, first of all, I'm glad you managed to get through the funeral ok, it's always a rough time, only recently I was at the funeral of a 30 year old, a friend of one of my best friends, he had a heart attack. It really makes you think when you hear news like that, we were only out with him the weekend before he died. You asked me a couple of things before that I never replied to. I'm 35, and I'm no longer taking the SERC, waste of time tbh, might as well have been eating smarties, at least they taste better :)

Full of Irish and those of Irish descent on here isn't it, maybe we should change it to the Sharp Blue Paddy Crew, only messing ;)

As for myself, this last week to 10 days has been rotten, a total throwback to this time last year. I've had another chest infection that took ages to go away, had 3 courses of anti-biotics and a course of steroids, and now have a constant dull ache in my left lung and it's tender to touch that area of my back where the lung is. Had a chest x-ray last Tuesday week, and am still waiting on the results of that. The dizziness has flared right back up as a result. Part of it is probably self inflicted though, I managed to get to 4 aikido classes before I had to stop due to my chest. Aikido is brilliant folks, it really puts you through your paces, lots of rolling and falling, better than any VRT I've done before, DC was right, and I'd recommend it to anyone. That or Tai Chi. You get that buzz like when you finish a workout in the gym, and I can't wait to go back. Hopefully the chest thing turns out to be nothing major.

Interesting to read what your VRT therapist said Gloria, I went for physio before Christmas, and didn't go back due to the bad weather but had problems with the 4th and 5th vertebrae in my neck, it was quite sore when she pressed down on it, maybe that's not helping. Posture is a major thing when it comes to the neck and upper back, and mine is terrible apparently :) Or so she said.

Jessica, it's a shame you're not in Ireland today, it's really nice atm, it feels like Spring, the sun is shining and it's not too cold, hopefully you'll get the same when you come over. Kerry is a beautiful part of the country, will be heading that direction (well almost, Cork) for a wedding in May.

Melissa, Sandie, how are things?

Take care all,

Gary.

Gary - hi! how great to hear from you - have been wondering about you. Sorry to hear you have been so poorly. Chest infections are not the greatest and do take ages to shift - although are you sure you haven't had a touch of pneumonia? Sounds a little like it with a tender back area. Anyway, wish you well and a very speedy, total recovery - at 35 you are just a wee nipper (!) you'll be bounding along soon! Good for you that you got into doing the Aikido - has to be the best VRT. I am sick and tired of doing VRT, exercising and the like. My head and neck is a total mess at the moment. I cannot get anyone to say why I have this vice-like band around my head all the time. When my VRT physio felt my neck and shoulders, gasped, and took off her jacket as if to say - this is going to be a tough challenge - I didn't hold out too much hope! My posture isn't what it should be either, but whose is? So, tomorrow back to the doctors to request a vestibular and muscular-skeletal physio. Apparently, if you have other physical issues as well as vestibular, they are the people you need to see. Fortunately, my neighbour next door works in the physio department of a hospital a few miles away and has told me to be referred to her. So here we go again. Will this thing ever end. Expect you are asking the same Gary?

Thanks for your concern about my uncle and I'm so sorry to hear of your friend's death - so so young. You do have to put life into perspective when you hear of shocking things like that for sure. You mention the Irish contingency on here, well I also had the Irish contingency from Castlebar at the funeral. They certainly made my uncle's wake more cheerful!!!

Gary have your dizzy spells been better before you got your chest infection or has it been a constant up and down?

Anyway, lovely to hear from you - wish you well. Do keep in touch.

Jemma - you seem a bit stressed again. Any improvement at all? My ear has subsided again compared to what it was a few weeks ago, but still feels a bit 'full'.

Onwards & upwards I suppose - what else to do eh?

So love and hugs to the Sharp Blue PADDY Crew!!!!

Gloria xx


First I want to say hi to Gary who I've never spoken with before. I've seen your posts but figured you lived in Glasgow with your Hoops strip on! Hope you feel better soon. Do you live in Dublin?

I just came across something I wanted to share with some of the ladies on here complaining of neck pain and ear fullness, etc. Are you familiar with TMJD? This is something I've had for a few years. I caused it by clenching my jaw at night when I sleep due to stress. I have a mouth guard I'm supposed to wear, but I always forget to. In the past few days I have been having pain in jaw and a clicking sound in my ear after I talk. I also have this feeling of fullness in my ears that I assumed was leftover labs symptoms. Then I remembered my TMJD and started googling symptoms.

I never knew that it's predominantly a women's disease affecting women 30-50 years-of-age. That the symptoms generally include, headaches, ear pains and fullness, tinnitus, clicking in ears, *dizziness*, neck pain and back pain, etc. This is because the TMJ muscles put pressure on the inner ear and cause all sort of trouble. Look at this:

"Another muscle adjacent to the inner ear is the sternocleidomastoid muscle which attaches just below the ear. This neck muscle is almost always involve in patients with TMJ disorder. The sternocleidomastoid can refer pain into the ear and also can cause significant dizziness since this large muscle helps the head balance and orient itself."

I'm just putting it out there as something to consider, especially with the stress we've all been under. You might be causing yourself TMJD. I'm sure that's why mine's flared up, and who knows, maybe it's a contributing factor to my dizziness too.


Can I post a link here? This link explains a bit about unresolved ear problems/symptoms and TMJ:

http://www.migrainedentistry.com/symptoms/earsymptoms.html


Hi all,

Jessica, i too did look at TMJ but never mentioned it to dr as took labs as my diagnosis.I too hace a mouth guard which i have never worn as i always clench my teeth when stressed.My jaw cracks just below my ear and sounds really loud to me!!!

Gloria.glad you got through the funeral ok.

I "touch wood" havent been so bad the past week, i have had afew odd moments but not as bad as i have been, and i find now i have no blocked nose and ears seem ok....i know now when the dodgy feeling comes of blocked nose and ears i on the road to another bout.

Gary. sorry you are not feeling to good, and sorry to hear about your friens friend, so young too.

Shirley, i hope you are feeling ok.

Jessica..Happy belated birthday, did you do anything special?

Love to all

Penny x


Gary,

Good to hear from you again. I have been 100% fine now for over a month. Every once in a while my head is a slightly bit swirly. Usually only when I am tired or hungry. Hopefully this is it, but as Jessica said you never know when the other shoe is going to drop.

This weekend will be a true test of my wits. I am going to Cornerstone at my church. Basically I have to be there for 24 hours! Sleep there too!

I have to go. Talk to you later. Melissa

Well, cannot believe I have relapsed so bad. Awful today - so dizzy, that lovely nausea back, shivery and shaky, upset stomach plus the on edge anxiety feeling. The whole works!

I suppose this is the result of quite a hectic last few weeks. Before all this, I would have coped with that and more.

Jessica - did see my dentist about TMJ and even though he gave me a mouth guard (anything for a sale!!) he said I didn't have TMJ. I have worn the guard a few times - didn't notice much difference and as you say, keep forgetting to put it in!

Anyway, back under the duvet time for me and pray so much for this to go.

Have good week-ends everyone.

Hugs, Gloria xx


Hi everyone

Gary glad to hear from you and sorry about your friend. I hope you get rid of the chest thing. I had a flu a few weeks ago which really made me feel bad and for several weeks after I was coughing and my chest was really tight. I was so short of breath I started to think i was getting asthma. This seemed to then set off the anxiety again and Gloria like you I had a relapse of the anxiety symptoms, racing heart, shaking, a panic attack in the night, horrible. It has improved this last week but you just never know what is coming!!

I never had much nausea at the beginning of this but I do find that sometimes i feel nauseous now but it isnt so bad i lose my appetite. It seems to tie in with the woozy head feeling.

I managed to see Alice in Wonderland at the cinema today and felt ok. My eyes felt strange when i came out and i had the usual odd feeling in my head but overall i seem to be coping better. Stress of work does not help and of course new symptoms can appear at any time.

Hope you feel better tomorrow Gloria and Melissa good luck the the sleep over thing, that will be a real test.

Take care all Jemma xx


Gloria, Hope you start feeling better soon, I had another flu 2 weeks ago when I finally got my holidays, it really got me depressed but I have pretty much overcome it and my balance is good only slightly out, this is a rollercoaster ride but we will get to where we once were...

DC


Hi all,

Well I made it with NO symptoms at all!!!!!! I have a cold and I have my monthlies. Just love how you call it that. I have had no problems. I am very tired and had a wonderful experience at Cornerstone this weekend. Without sounding like a holy roller, it was very cathartic. Especially after all that I went through this year. I am going to pray for all you. I am not in any way a "Holy Roller" nor am I that religious. I just think we could all use a little extra help with this crap.

Gloria, I am so sorry you are feeling ill. Could you have eaten something or caught a bug of some sort that has made you feel sick?

Jemma, Sandie, DC, Jessica, Gary, Penny and anyone I forgot...How are you?

Keep the Faith! Melissa


Hi All,

Just a quick update: I am finally over my cold although I still feel a bit sniffy (if that's the word)that's 2 colds now in the 4 months I've had this thing and before this it was about 3 years. I guess I am just more susceptible to getting them now.

I have seen the phsysiotherapist for my VRT. I've been doing them now for about 4 days. They are quite easy ones so I guess she will give me harder ones as time goes on. I need to see her again in 2 weeks where she will assess me. It has been so nice to talk to someone who understands this problem. She gave me tests to do and said that I had come on well considering how bad I was at the beginning. She has given me hope that one day this will go. I asked her what the percentage was for this to return and she said around 10 to 20 per cent so the odds are in my favour. She tested my balance and I was ok with eyes open but once closed no good. She is also going to try and help me lie flat when sleeping. I used to prop myself up with 5 pillows but now 4 and later on in the week I will try 3. I think its more anxiety than anything else that makes me think I cant lie flat .. just don't want that spinning feeling to return on waking I guess.

I think a lot of mine is anxiety related. She said she will try to work with me on this. It's a lovely day and my car needs a clean. There is a hand wash just down the road and I am sure I can drive that far but the axiety asks me "what will you do if you get dizzy whilst out" it does it to me all the time and I am beginning to become a prisoner in my own home. If someone is with me I can cope, but on my own not so good.

Mellissa: fingers crossed this is it with you. It does make me feel there is hope when I read stories like yours.

Penny: Hope your ok

Gloria: Sorry to hear your cold has pulled your down again, hopefully will pass soon and you will be back to how you were or better.

Jemma: Was Alice in Wonderland good: If I can get over this anxiety I would love to go and see it.

Jessica: Another story that brings me hope. Keep the faith.

Take care Shirley

Hi all.

Gloria, sorry you've relapsed. This thing is the absolute pits isn't it? You think you have a handle on it and then it kicks back in. My dizzy spells have been a constant up and down - good as in almost symptom free for weeks then bad for weeks, this last one was a particularly bad one with the infection, but I'm expecting to go back to how it was before getting ill. A good guide for me is the tinnitus in the left ear - the louder it is when I wake in the morning, the worse the day will be. It's probably a permanent thing now, but it's not normally too bad. You mentioned pneumonia - I had it as a kid - but my doctor didn't seem to think it was that, will hopefully get the chest x-ray results tomorrow, but it's not as bad as it was. Am hoping even to be able to go back to aikido on Tuesday night. Hope you feel better soon.

Jessica, I'm from Monaghan, on the border with Northern Ireland originally, spend half my time up there and the other half in Maynooth in Kildare. Hoping to go back to college in Maynooth in September, great little town.

Penny and Jemma, thanks for the concern, hope things are well with you.

Melissa, fingers crossed for you from me too, it's always good to hear recovery stories, gives the rest of us a lift so with a bit of luck you're there :)

DC - was it jiu-jitsu you said you were doing? You still at that? There's a class doing BJJ who train alongside us on a Tuesday night, it looks brilliant and I'd love to give it a go sometime. It seems all martial arts around where I live happen on at the same time every Tuesday and Thursday night which is unfortunate, but I'm just happy enough to be able to go to one of them - 6 months ago there wouldn't have been a chance. So that's improvement in itself.

Anyway, that's my lot for now,

Good luck all,

Gary.


Gary, Yeah I was doing BJJ, its and awesome style all based on the ground grappling, I only go casually at the moment but I am looking to get back into regular training in the near future. Just trying to get through this fatigue I have been battling, if its not one thing its another...

Daniel (DC)


Good morning, everyone. It's just past 9:00 a.m. here in NYC. Everyone watch the Oscars lat night? Was probably on too late for UK and Ireland, so I won't spoil anything for you by talking about it now :)

I have been doing really well lately. Hovering between 95% and 100% for the past week. I feel 100% in familiar settings like my home and office, but new places can throw me a bit. Went to get my hair cut on Saturday and the salon was making me feel a bit unfocused. Went to Home Depot too (big DIY shop) and the aisles were getting to me. Still, I must say that even my bad moments are nothing compared to where I was just 8 weeks ago.

The only thing really bugging me is I have this fullness in my ears, occasional ear pains, and the clicking sounds after I talk. This is all new (about a week ago it started), that is why I am thinking TMJ rather than labs. I see my new otologist today, so I am going to ask him his what he thinks. I am looking forward to a fresh perspective.

Have a good day!

Hi all, Gary/DC/Shirley/Melissa and Jemma - thank you so much for your words of comfort. Feeling a bit better today than over the week-end, but still worse than I have felt of late. This is the time when you really do need to have max strength, because you think if I have relapsed this further back symptoms-wise, then is it going to take a good while to be as I was a few weeks ago?

The nausea for me is part and parcel of my worst symptoms. Haven't had that for about 4 months or so.

Am seeing my neurologist on Thursday - I can't wait to see what he has up his sleeve for me this time, especially if his advice last time was we all have our crosses to bear and this is yours I'm afraid!!! So constructive.

Tonight, I am going to make myself go the the local aerobics class. It seems I need the more vigorous exercise now to compensate my brain. Gary/DC would you both agree that being alot more physical in your activities has helped?

I don't feel like going but I can't stand feeling like this - so whatever it takes!

Shirley - glad you are ok with your VRT. Like you I am OK with eyes open, but closed am everywhere. Keep doing them - it does take a while and as you can see, will have to up them eventually to doing stuff which is a lot more active. For me this is hard. I am not and have never been someone who relishes going to the gym loads or running round the streets. But as exercise is good for you, maybe this is the kick up the proverbial I need to get a bit more in shape!!!

Gary - hope your x-ray results are fine - you sound as if your chest is better & get back tomorrow to all that throwing around! I'm sorry, but am a bit naive about martial arts and the difference between each one.

DC - sorry to hear your 2 week break was not a brilliant one. Hope your fatigue is improving. When you feel so exhausted it is difficult to get motivated. Don't know where you are situated, but for us in this part of the hemisphere, can't wait for warmer, brighter days. Our winter has been so long. I, also think I suffer from a bit of what they call SAD - a deficit of bright daylight and sunshine!

Take care all, Hugs, Gloria xx


I haven't followed in a couple years. Just wanted to say I'm doing fine although I still don't feel normal. I got VN in June of 2006. I had it in both ears with the left being the worst. I had terrifying symptoms like many of you all. One thing I do know is that the only way VN can go from one vestibular nerve to the other is through the brainstem. And even if one ear is involved, the brainstem on the affected side can be damaged from the infection or whatever. That will NOT show up on an MRI or CT scan. The brainstem is responsible for all the things we don't have to think about like heart rate, breathing, balance, anti-gravity postures, etc. Thus during the initial illness I had abnormal heart rhythms and difficulty breathing plus so many odd symptoms that the dumb doctors couldn't figure out. If you think about it, it makes sense. Anyway, I have learned to live with the damage and I am so much better than I was almost 4 years ago. I have compensated and still am. I started back to yoga recently. I was terrified to go back as I knew I would feel bad in all these weird positions. Well I was right. I felt horrible after yoga and for a day or 2 afterward but now I can do some of the positions without getting dizzy. I am posting this now because I am finally not scared anymore. I know I won't die. I remember the horrible anxiety and hated lying down. Anyway, keep hanging in there all of you. The brain is amazing that to some extent it can heal because of neuroplasticity. Hope I didn't sound like a smartass. Just trying to give comfort. Megan


Gloria,

Exercise has helped me compensate. I run usually 4-5 days a week and I do yoga and pilates. It has helped with my balance too. Good luck tonight.

I have a bad cold, but no symptoms other than normal cold symptoms. I pray that this is it!

Jessica, a lot of us on here with labs had crackling, clicking noises and ear pain/fullness too. I have had tinnitus and ear pain.

Megan, glad to hear that you are doing well. The anxiety is much more manageable because we know what to expect from the symptoms.

Keep the faith! Melissa

Gloria,

I can't really say it's helped yet, as I got ill again after taking up aikido and havent' been back since, but it definitely tests you. I felt great after each session bar the 2nd one, but that's because there was no ventilation in the gym, the heat was on and there was no water to drink and I felt rotten with a headache after that. Am still brainfogged up at the minute, it's been 2 weeks now, but nothing out of the ordinary and I'll go back tomorrow night even if I still feel like this tomorrow. The fitness side of it is great. Just made sure to keep hydrated if you go the aerobics, and if you feel too dizzy, explain to your instructor beforehand about labs, and they will understand if you need to stop. My aikido instructor I was shocked to find out has had a vestibular disorder for years, and she's in her 50's, but is a 3rd dan black belt (very good) so there's hope for us all :)

Good luck with it anyway, and let us know how you get on.

Thanks Gary/Melissa for your replies. I am really pleased I went last night. I explained to the instructor of my condition, ( she hadn't heard of it but like you say Gary, did say to stop if I needed to) but I was amazed I got through the session. Having done aerobics in the past I was fairly familiar with the moves and it was constant. Mid-way I did feel a bit woozy and thought I would have to stop, but just slowed the pace and drank my water.

Anyway, this morning my head does feel loads better than it has of late. Still have the tightness and feel as if my muscles are trying to keep everything stable, but feel inspired that maybe this is what I need to do.

Maybe like you Gary it feels good after each exercise session, but time will tell if I go backwards a little after a couple of days.

Melissa - so really glad you are better - I'm sure you are out of this now. I do think the amount of physical exercise you do has obviously helped enormously. However, I don't think I am in your fitness league LOL!!! Whilst I will increase my number of sessions - (instructor said try to do 2 classes next week) in the interim I am going to do very brisk walks some little trots ( I can't run for any length to save my life!!). Hope your cold gives over soon. You must be looking forward to your holiday in April?!

Good to hear from you too Megan - thanks for your encouragement. After last nights exercise session, I can see how you need to quite vigorously challenge the brain the further on in this illness that you are. I have stopped doing the other VRT exercises - except balance ones as I am sure they aren't doing my neck any good and they aren't challenging me anymore anyway.

Well I hope this sounds like a more positive post than of recent days. My body will probably be a quivering wreck tomorrow as a backlash from exercise of which it hasn't known the like lately LOL!!!! So I may not feel so positive then.

Anyway - thank you all - as usual - for your tremendous help and support by caring. It really does mean loads to me.

Love & hugs,

Gloria xx


Hi all

I am pleased you coped with your aerobics Gloria -doesn't it make you feel so much more positive when you achieve something you couldn't do before. It really is such a comfort thinking you may be on the road to recovery.

I have been quite good since Sunday. The dizziness has improved and whilst I am still a bit tired and daze-like at times I do feel I am coping quite well. You never know when things will go worse again, I dont think I'm out of the woods yet but for the first time I am starting to have hope that a full recovery may be possible. Ear (left) is still annoyingly clicky though!

Gary and DC and Melissa - gosh well done with all the exercise. Now that the weather is improving I really want to do some more walks. Like you Gloria I dont have the stamina to run anywhere. That would kill me even when I was well! I just dont seem to have much time or energy after work to do much exercise which is annoying.

Shirley - Alice in Wonderland is worth seeing for the impressive sets and costumes etc but it does not really follow the book and some of the characters are missing so in that respect a bit disappointing.

Anyway as Gloria says, onwards and upwards (I hope!)

Jemma xx


Hey Sharp Blue its me again i wish i had more positive news , but yesterday was the 4month mark and my swaying/ movement 24/7 is as violent as it was the first day of Suffering November 17th , my ear in general feels better with the feeling of fullness gone but my worst symptom persists :( i can can take comfort that my balance is slowly improving however and my light sensitivity is easing.

Gloria- perhaps Exercise can help relieve our symptoms at least temporarily it seems to help me at times not with the swaying but definitely relieves me of the stress and worry associated with this condition :)


S,

I found that exercising everyday has helped me tremendously. Try to do something everyday. Walking, yoga, pilates.

I am very slightly swirly headed today. I am just getting over a cold and didn't want to take anymore cold medicine. I guess that I have some fluid in my ears. Not sure, when I bent over before my right ear (the one that was affected) hurt. I am going to take antivert tonight before bed. That usually works to clear up my ears.

All in all I really feel 100% better. Considering I have a cold, I thought I would be way worse!

Melissa

Hi all,

Went to the neurologist yesterday. Instead of my usual 'putting- on -a-happy-face' - I was very tearful and told him that this was all getting too much. I have found the tight, painful muscle thing worse, can you believe, than the swirly head. So in his usual matter of fact way said we can try other medication, I can do physiotherapy (been doing that for the last zillion months) or a good old fashioned holiday somewhere hot! Would he be paying for me to go then??!!! Anyway, he told me that because of the imbalance of messages from muscles to brain with labs - my muscles are now in a non-stop spin so to speak and I need something to stop that cycle. So here I am now on an anti-epileptic drug also used for neuropathic pain. Apparently, among the side-effects are in the very common category - viral infection (?!!), drowsiness, DIZZINESS (oh joy!) and anger towards others - have warned my hubby!!!!!!!!!!

He has told me that this isn't a life sentence and I will be better but admitted it could be between months or a couple of years. Maybe the vodka bottle will be a more pleasant answer (Joking)!

However, I am going to continue with my exercise (if I don't drop off to sleep in the middle of it).

Good to hear from you all - S - you are doing OK. Although maybe slow, but improvement is there. Do exercise as much as you can - I only wish I had started earlier in all this.

Melissa - you are still doing great albeit with a little blip. Your cold I'm sure to blame.

Jemma - I am so thrilled for you that you seem to be coming out of what I call a stagnant phase when you are just caught in a whirlpool of symptoms. I feel like that just now. Great you managed the cinema. Keep going girl - upwards and onwards!!

Friday again and nearly the end of what has not been a good week for me - but hopefull next will be better. Two weeks away from our break down to Cornwall - can't wait. It might not be the holiday abroad the neuro talked of - clearly for him money is no object. For me it is a huge object. That said, I am going to invest in a bicycle this week-end as that is also good for balance. My last bike was stolen (and my hubby's) from our garden shed a year back. I will be intrigued to see if I can get on a bike again and cycle without falling off!

Anyway, have good times this week-end.

Hugs, Gloria xx


Hi everyone,

I've been lurking here for a few weeks now, but have finally decided to say hi after seeing S's latest post - I'm in almost exactly the same boat as him, having been struck down with a dizzy spell out of the blue in early November, and now four months later I'm still having a lot of feelings of swaying and swirling in my head, and my vision is also still really messed up when I'm reading or using computers (which is basically all the time, as those two things are both my job and my hobby!). During Christmas and over much of January I suffered big-time from anxiety, but although I'm still worrying all the time about how I feel and what's wrong with me thankfully almost all of that anxiety has subsided now.

I do feel better than I did during the first 6-8 weeks of all this (when I couldn't even look at a TV screen for more than a couple of minutes!), but this last week in particular has been really bad and I'm feeling very down that four months later I still feel so rough. I'm still working full-time, but it doesn't seem to be getting easier (I always feel at my worst at work), and the only time I seem to feel more like myself is when I'm out walking (which I try to do for 45 minutes or so every day).

My doctor has told me that my problem certainly sounds like an inner ear issue, and after a hearing test which showed a bit of hearing loss on one side (where I also have tinnitus and an occasional feeling of slight fullness) I've been referred to the ENT department, so I'm currently waiting for an appointment. In the meantime though, every day seems to be more difficult, and aside from maybe one or two days where I've felt close to normal over recent weeks I can't even see much light at the end of the tunnel.

Hi Andy, Welcome - so glad you felt able to post your situation and how you are currently feeling. This site, as all of us have said has been our saviour. We can all vent how we feel and how it affects our lives because we all totally understand.

Certainly you seem to have an inner ear disorder. Labs can come on just like that. Although for me and some others it followed a very nasty viral infection, in my case a chest infection. Did you have anything like that before the symptoms came on? However, that said a lot of us, me included, had a hugely stressful period in our lives that could have been the reason why our immune systems were so low.

You WILL get better - it just takes time. Longer for some than others. Already you are saying you notice a difference in how you feel compared to the beginning. The fact that recovery, unlike other illnesses, isn't linear. This peaks and troughs all the way through until it finally leaves you. For me I am at nine months. Have had some good periods, then have felt a bit rough again. This you have to accept. Key things - try to be positive. Keep active every day. Brisk walking, exercising, whatever you like to do. Ask your GP about VRT vestibular rehabilitation therapy. These are a series of daily exercises to help retrain your brain to re compensate. All of what you describe I have had as have the others here, but now I can watch telly, and am doing everything normally. I still know my head isn't right and doesn't feel normal, but you get used to it. It is slowly getting better. As you may have read, my neurologist has said this isn't a life sentence. It will get better. For me at present the way my imbalance has made all my head and neck muscles stiffen has been horrible, but I try to keep positive and active. My only annoyance is I still can't tolerate an odd glass of wine. Am loving red grape juice though LOL!!!!!

Andy - we know just how you are feeling. If you feel it helps then keep posting your thoughts and feelings. If you have odd symptoms tell us because this thing gives so many odd feelings and symptoms that you think they cannot be possibly related. They all are and one of us will have had them I'm sure!!

Good to hear from you. Take care and hope your week-end is better than last. Our mantras - keep the faith and onwards and upwards!

Hope everyone else is fairing OK. My new drugs are OK at the moment and seem to be helping - early days though!!

Love & hugs, Gloria xx


Hi everyone

Andy sorry to hear you are feeling low, this thing really is horrible and at times makes you feel like life is not worth living. As Gloria says though, despite the downs there are some ups and it slowly improves albeit with some very odd symptoms along the way.

I am still feeling ok dizzy wise. I have got a tight chest again though, feels like asthma sometimes although i never had this before. I also feel my throat is tight and i keep swallowing. Really weird. I dont know if that has anything to do with my clicky ear.

gloria - you really do have to show these doctors your bad side to get anywhere dont you. My natural response is to try and be positive to other people but if you do that the doctors dont take you seriously and send you away. good luck with the new medication, it sounds a bit scary but hopefully you will see some good improvements in your symptoms.

How is everyone else? xx


Hi all,

Damn Labs!!!! Just when I was in the clear for almost two whole months, BAM!!! It rears it's ugly head again! I had a cold this week and apart from feeling tired and rundown from the cold, I felt fine. No dizziness or swirly head. Wouldn't you know it, yesterday I started to feel that funhouse floor feeling again. You all know the feeling I am talking about. My head feels tight and swirly and when I walk it feels like the floor is moving under me. I HATE that feeling the most. I think it is because of the cold I had and it is raining so hard here for the past two days and it is not going to let up for another two days. Maybe being stuffed up and the barometric pressure change is affecting me? Anyone thinks so?

I am not anxious about it, just mad! When will this go away for good? When can I trust feeling better means I will stay better.

Gloria, you said it, this is not linear!

Andy, welcome. You have found a wonderful place to seek advice and vent all your feelings. We all feel and felt exactly how you feel and felt! LOL You will get better. You WILL have days where you feel nothing. Again, this is not linear. You will have ups and downs. Just ride them out and have faith. Stop looking at the time frame of how long you have had this. For me it's 10 months! I have been fine the past two months. Just have faith and look at how far you have come.

Gloria, good luck with the new medication. Do they want you to stop the other medication or take it together? Is that medicine really going to help or do you need more physio? I hate these doctors and their presciption pads. PUT DOWN the pads doctors. Just put down the blue pads....

Keep the faith! Melissa


Welcome Andy....

Melissa poor you, and you were doing so well. I have been ok for 3 weeks now!!! I havent had a glass of wine since i had that very bad experience with 1 glas 3 weeks ago on an empty stomach.I wonder if that has anything to do with it.My nose isnt as bunged or my ears.My head still slightly muzzy but not half as much.

I am awaiting its return!!!! this is too good to be true....but you never know.

Gloria...Hope you are back on the raod to recovery and that the tablets work for you..

Does anyone have a problem with heat with labs..I find my hand are freezing cold but the rest of me warm, then my hands are warm, its very odd.

Jemma, Shirley, Gary and the rest of you hope you are all coping ok. I havent seen alice in wonderland yet, the kids (and me!!) are waiting for the 26th for nanny mcphee the new one.I loved the first one. Going to the races next week my friends are treating me for my 40th so i am focusing on that this week, i find if u try not to be anxious and stressed which i am trying not to be and look forward to something it helps take your mind of labs. But it is always there and i am thinking when will it return...i really hope it dosent...as 3 weeks sympton free is so lovely!!

Love Penny xx


Hi Everyone, I'm so glad that I found this website! It has been the best thing to happen to me since I started feeling strange (for lack of a better word). I have had a rough time the last couple weeks and its nice to know I'm not alone.

My ordeal started at the beginning of February when I had the flu to end all flus. I was sicker than I had been in a very long time and was so relieved that I felt better in time to go to Jamaica. However, when I was in Jamaica, I noticed that my vision was impaired and that I felt dizzy all the time. Not too dizzy but enough that I felt slightly nauseated all the time. My vision continued to deteriorate and I was experiencing pain in my face, mostly in my sinuses. I was also feeling anxious (but this could have been because I thought I was going blind).

When I got home, I immediately made an appointment with my optometrist who sent me immediately to an emergency appointment with a eye specialist who diagnosed me with uveitis, inflammation of the eye's vitrious (eye jelly). I mentioned that I was experiencing sinus pain but was assured that it wasn't related. I was put on a very aggressive course of steroid and anti-inflammatory drops. Because this condition is very rare in people without auto-immune disease, I was sent for a battery of tests (blood and xray) to see if I was arthritis, IBD, or MS. This obviously scared me quite a bit.

For a few days, my eyes seemed to be improving. My vision improved and the light sensitivity I was experiencing also diminished. My anxiety levels were still pretty high but they were manageable, especially after my tests came back normal. I thought I was on the mend...

Then, about a week ago, I was in the car talking with my boyfriend when out of nowhere I had this strange feeling that started in my head around my ears and radiated down my body. I felt lightheaded like I was going to pass out and the world looked totally surreal. My heart rate shot up and I was feeling very anxious. When I got out of the car, I felt like the earth was moving under my feet and I had a hard time getting into the house. My boyfriend's father is a doctor so I told him how I was feeling an he took my pulse and blood pressure (which were both high). He got me to lay down to see if it would help but I kept panicking (thinking that it was MS or something). I jkept feeling the jolts down my spine and the feeling that I was being pulled backwards. My head also felt heavy. I managed to sleep that night but not very well.

The next day the spinning got worse and I vomited. My anxiety was so bad that I got my mom to take me to the emergency room. I got in right away because my blood pressure was 156/103. Since I'm only 24 they were concerned and tested my heart (which is fine). The ER doc was great and diagnosed me with VL pretty quickly. I'm on Serc for the dizziness and have taken ativan when my anxiety levels have been particularly high.

Since then, I've had weakness in my right arm as well as tingling and numbness in the right side of my face. Although I do see some improvement, I've found the anxiety and depression the most difficult to handle. I'm unemployed and it a great deal of debt so that stress is adding to the situation. I'm just glad that I've found other people who have experienced my symptoms so I can stop worrying that its something worse.

Has anyone here had problems with their eyes (iritis, vitritis, uveitis, etc). Or just eye pain/pressure? I'm trying to figure out what else can get inflamed next so I can be prepared haha.

Anyways, I thought I would post my experiences (catharsis) but also because it might help someone else is freaking out like I was.


Thanks for the welcome everyone!

Finally got my ENT appointment on Friday, but it isn't for another six weeks!! Very depressing knowing I'll have to wait that long to even see someone.

Funnily enough, I don't have any problems drinking wine these days - A couple of sips would make me feel drunk back when this first started, but now I can have a couple of glasses and not really feel any different to how I'd tolerate it before this began.

I started yesterday feeling really low but cheered up a fair bit after an entire shopping trip without feeling too bad at all, and I actually had a good, relaxing afternoon and evening afterwards. If every day was like that I wouldn't mind so much! The trouble is, it's always going back to work that I dread, as I know that means a day of aching back and neck muscles and feeling way more tired and "spinny" for most of it.

I am trying to do some "home-made" VRT a couple of times a day, which I think is maybe helping a little, although I'm not sure whether I'm doing it right or focusing on the right exercises for my problems!

Hi all, Welcome Laura when you have never had or even heard of this illness before (like me & most of us) it totally freaks you out. I spent so many days in A & E (UK equivalent of ER) because I thought I was having a stroke or had a brain tumour. My vision was badly affected - I had to change my varifocal glasses to single vision because my brain couldn't cope with the varifocal lenses. Watching TV in the early days was impossible - everything was so bright, loud I couldn't take it. Sickness, tingling and numbness, racing heart, first hot then shivering cold, electric impulses shooting through my head, heavy head feeling and such tightness around my head like someone was blowing a balloon I thought it would burst. Pain behind my eyes - just so many symptoms.

Try to keep calm Laura - you probably have read all our posts of late perhaps to get an idea of how we all suffer. You are young and will fight this off quicker I'm sure. It does get better but as you can see from Melissa's post isn't a straight line to recovery. A lot of people do recover by 3-4 months, but others like a few of us it seems to take a little longer. Probably like us all, I am so so impatient - just want it all to end. One thing this does teach you though is how to be strong and oh so patient!!!! After the initial few weeks you do get to a point of where you are coping with day to day stuff albeit feeling a little odd.

As I said to Andy who posted a couple of days ago - if it helps to write about how you are feeling - just to vent - we are all here to help.

MELISSA - what the heck?!!! You poor thing - it must be the worst to have such a long period of being fine and then back to square 1. What will be interesting is to make a note of when it came back, how long the bad symptoms lasted for and if you got back to feeling fine again as you have been doing, then note how long you have had a good spell. Maybe it will show that your good phases are getting longer and longer and the relapses shorter and shorter.

Penny - good to hear from you. Glad you are on the up as they say! Funny, since this I too get freezing cold hands to the point I think my fingers are going to drop off, but the rest of me is OK. Obviously has to do with circulation which also seems to be affected.

Let me know what the new Nanny McPhee film is like - I loved the last one. I am just a big kid at heart LOL!!

Jemma - good to hear the dizzies are OK - yay! Whilst you appear to be having a tight chest, for me as you've read has or rather still is tight tight head and neck muscles. So maybe again it is a muscle thing but with you it is your chest? What do you think?

Andy - hope your week-end has been a little better. Laura/Andy - keep us updated on your progress.

Love & Hugs to all,

Gloria xx


Thanks for the welcome everyone!

Finally got my ENT appointment on Friday, but it isn't for another six weeks!! Very depressing knowing I'll have to wait that long to even see someone.

Funnily enough, I don't have any problems drinking wine these days - A couple of sips would make me feel drunk back when this first started, but now I can have a couple of glasses and not really feel any different to how I'd tolerate it before this began.

I started yesterday feeling really low but cheered up a fair bit after an entire shopping trip without feeling too bad at all, and I actually had a good, relaxing afternoon and evening afterwards. If every day was like that I wouldn't mind so much! The trouble is, it's always going back to work that I dread, as I know that means a day of aching back and neck muscles and feeling way more tired and "spinny" for most of it.

I am trying to do some "home-made" VRT a couple of times a day, which I think is maybe helping a little, although I'm not sure whether I'm doing it right or focusing on the right exercises for my problems!


Hi everyone

Laura i have had some problems with my eye linked to this although nowhere near as serious as yours sound. For me it is an intermittent stiff discomfort in my right eye, very weird.

Gloria - i think i now know why i had a tight chest... i have developed a really sore throat today, my mouth and throat are dry and sandpaper sore. I have just got over one flu, i cant belive im getting another so soon ARGHHHHHH!!! my immune system must be dreadful!!

Melissa sorry you have had a bit of a relapse, so frustrating. i am hoping this wont make my dizziness worse but this thing never seems to fully leave you does it.

I havent drunk a drop of alcohol since getting this and i dont know if i will ever dare again. The thought of giving myself some of the symptoms of labs,ie dizzy, headache etc just fills me with dread. I just want a clear head for the rest of my days!!

Happy mothers day for all the mums on here, hope you have a non-dizzy day xxx

Andy - glad to hear back from you. Glad that your Saturday ended out better than it started. Most of my days start out this way, but after a deep intake of breath, I have to take the bull by the horns so to speak and try to do the best I can with my day. It is exhausting battling with this, but it will all go and we will all have a lot of catching up with life to do!

What are your home-made VRT exercises? Good for you for doing something. You are right though - you need to get a VRT referral when you see your ENT consultant as they will assess you individually and give you exercises appropriate to you. On this site, Page 11 September 23rd last year, a lovely lady on here called Sandie, who has kept us all very buoyant with her pearls of wisdom - listed 2 posts of VRT exercises - maybe helpful.

Where are you based Andy? Six weeks for an ENT appointment is good. I had to wait 3 months! I decided the wait was too much and went privately. Don't think I got any better advice or treatment - it was just quicker!

Melissa - hope your relapse is subsiding and Jemma - another cold! You need (we all do) what my neuro suggested - a holiday somewhere hot and relaxing! Shall we go and send him the bill LOL!!!!

Take care all. Speak soon.

Hugs, Gloria xx


Gloria - Mainly I'm just doing head movements (up and down and side to side with eyes open and then closed), and then some gaze stabilisation stuff, looking at a letter on a piece of paper while I move my head or the paper. I only spend around 5-10 minutes on them each day, and I have no idea if it's helping, but at least I feel as though I'm doing something. I also walk a couple of kilometres each day, which I find always makes me feel a bit better after some long hours in front of the computer.

I'm based in Poole down on the south coast of the UK - I'm trying to look into a private consultation at the moment, but I keep getting passed from department to department with broken promises to phone me back all round! I know it won't give me a miracle cure or anything getting a quicker consultation, but at least some official answers rather than my self-diagnosis might make me feel a little more confident in what's going on.


Hi everyone,

Melissa, so sorry that you are having a bit of a relapse - this is so normal with inner ear stuff. Hopefully your symptoms will improve for you soon.

Gloria - aaah, thanks for calling me a 'lovely lady' - how are you and what are these pills you are taking?

I wish I had some pearls of wisdom today but I actually feel quite bad. Over the last couple of weeks my symptoms have got worse and today seem to have peaked. My head is spinning and my balance has gone again. Hence the revisit to this board! This happened last month with my 'monthlies' - I was a couple of weeks late last month (menopausal!!) and this month the same. So I think it's definitely the hormones controlling everything at the moment along with the blocked ears. I know that if I can't blow my nose properly in the morning then I'm in trouble!

So, I'm stuck back in the house as I wouldn't dare to go out alone when I feel like this. It's so scary. Sitting on the computer now I keep lurching forwards as the balance thing still affects me even though I am sitting down. It's five years for me this month - should I celebrate - no bloody way!! But, I do know that I'll maybe feel better tomorrow - ups and downs - that's the way it goes.

Take care everyone.

Sandie xx


First, just want to say that this comments thread, along with several message boards I've seen on the topic of labyrinthitis have been very eye-opening for me, and I mean that in a good way.

I have a few specific questions, so I'll give a brief recap of my situation. About a year ago, the day after getting a blood test, I woke up feeling unsteady (not really dizzy, not vertigo, but the feeling you get after coming ashore after a boat trip.) These symptoms were soon matched with fatigue, a general head fog and eye aches (which were solved when an ophthalmologist noticed that my eyes were drying out and that I should apply fake tears.) The symptoms would come in "spells" which could last, in differing degrees, for weeks. This went on for months, I saw several doctors and neurologist, none of them really had an explanation -- the last possibility they raised was migraines.

About six months into it, I generally started getting better, and eight or nine months into it I was somewhat back to normal, though occasionally the spells would hit me.

One event I recall occurred after I got through the initial hump: I was at a movie theater and I was upfront sitting in a chair that leaned back kind of funny, so for two hours I was seated in this rather abnormal position. And after the movie, I felt semi-nauseous and generally unsteady. Then, about three weeks ago, I was leaning down to check to see if my car was leaking --- in a sort of strange position where my head was lower than the truck of my body and turned --- and instantly I got the unsteadiness and head fog, and was hit with fatigue later that night. It took me about a week to get back to normal. Then, around a week ago, I found myself in the same position rifling through some newspapers to be thrown out. I didn't instantly get the feeling, but it did show up within an hour.

My general sense, from everything I've read, is that this is labyrinthitis (or similar inner ear issue.) And what I seemed to notice is that putting my head in this awkward position would bring it on. I'm curious if anyone else has experienced a similar "trigger?" If so, why? (I've read about calcium deposits moving around in your ear etc.)

Thanks for any insight, and I can't express what a relief it is to see people talking about symptoms identical to mine after receiving blank stares from the medical community.

Wil


Hi all, Boy have I had a rough couple of days. We had a terrible rain storm with really strong winds. The winds were so strong that 100s of trees were blown down and took down power lines and landed on people's homes. I was without power, water, phone for 2 1/2 days. Brrr it was cold! It rained here for 3 straight days.

I really think that the barometric pressure and the fact that I had just gotten over a cold and had residual phlegm made my symptoms come back. I have to say that I had to take a Xanax just to get my head to stop swirling. I wasn't nervous thank god! I just have to have faith that I will go back to the way I was feeling.,

Gloria, great idea to mark down how I felt and why and how long it lasted! Thanks

Welcome all new people! You have found a wonderful bunch of people to vent to.

Melissa

Hi all,

Andy - those exercises sound fine. Also try doing them walking with heel to toe. Really test balance and co-ordination. To start I was rubbish - all over the place. Doing these exercises do help, but whether it makes this go away more quickly - I'm not sure. My VRT physio told me to do the exercises 3/4 times everyday for about the same time you are doing now. Walking is the best thing. Like you - to go for a walk just helps me to relax a bit and take my mind off how I am feeling.

The private consultation, which I did only because I was so anxious as to what was wrong with me. I had an MRI done which was clear. They check for nasties but can't really tell what damage is done to the inner ear. Then I was referred to the VRT physio and now a neurologist to help with my muscle spasms in my head and neck and shoulders. This all has worked out horribly expensive and our life savings have dwindled. The only plus is that all the treatment I've had has taken place more quickly than waiting for the NHS and as you say getting an official confirmation of your diagnosis does help. My GP gave me a referral letter to the private ENT consultant and got an appointment within a week. Has your GP given you a name of a private consultant? Keep us posted on how you get on Andy and keep positive.

Sandie - how lovely to hear from you, but sorry that you are having a bad time again. I do think yours will be affected by being menopausal - my friend experienced similar dizzy spells whilst going through that phase, but only because of that and hadn't had any vestibular probs. Bad enough but to have to deal with both problems. What did we do in our previous lives Sandie to deserve all this rubbish?!!!!

As for me - the dizziness is now less - not non-existent though, but as you've probably read am having so much trouble with my head, neck and shoulder muscles trapping all the nerves. I can hardly turn my head. I had a relapse just a few weeks ago and unlike when this came on last year - the dizziness just spasmed all my muscles. So the tablets are to stop me feeling the muscle pain and trying to relax everything because the vestibular system apparently cannot improve until the muscles are more relaxed. Sandie, how have you coped with this for so long? Mind you, I would just love to have a clear, totally symptom free period. Now 9 months and it's getting me down big time. As you've seen, the neurologist told me it is not a life sentence and he hasn't known anyone with it for more than 2 years at the most - shall I introduce you to him LOL?!!!!

We're off to Cornwall in 2 weeks - can't wait. Don't care if I feel rubbish. We have rented a little cottage over-looking the sea. The long range forecast looks good - so maybe that will help. Have you got any time away booked Sandie? Anyway let us know how you're fairing and I hope feeling better today than yesterday. By the way, still haven't got around to the front door - first on the list as soon as the weather gets better - what was the paint you used?

Speak soon

Love to all

Gloria xx


Hi Gloria

It's the pits, this menopause thing. I have had dodgy periods for a while now and even went about three months without one last year. I soooo wish I was through it all and then hopefully once everything has settled down I might get rid of all this junk! Trouble is, it goes on for years and years! You can be in peri-menopause for about ten years and then another five years for menopause itself! Bummer!

Your neck sounds so painful - it can take a long time to recover from all this muscular stuff - I do hope the pills work for you. I have suffered from a 'dead' shoulder for months now but it only bothered me in bed when I slept on that side. However, my lovely little daughter and I had an arm wrestle contest two weeks ago using that side and she nearly killed me. Super strong my daughter is! But, since then I am experiencing terrible pain right down to my elbow and I unwittingly turn over in my sleep and wake up crippled with pain. It's not fun. Also, talking about the neck, I have never experienced pain like you but I do get this weird crackling and crunching from time to time. I also hear a noise like when you rub dry onion skins and that used to scare me but it has been happening for years and I have put it down to wear and tear of the ligaments (or whatever is in there!!). I also get a weird sensation in my head where I can hear this sound like bubbling going through a vein and - this will scare you - it happened the other morning when my daughter was in bed with me for a cuddle and she heard it. That has freaked me out a bit and she said that she often hears it when she is close to me - what the hell can that be?

Haha, I like what your neurologist says about the two year thing. He is right some people do get over it in two years but I read somewhere a couple of months back that they were now saying five years. A lady who used to post on here a couple of years back called Anna - she had had it for about 30 years! But don't let that frighten you Gloria because as you know I do have a lot of good days and even weeks and it doesn't control my life all the time.

Good on you for booking your trip to Cornwall. You have the right attitude and you might as well be dizzy there as at home. Fight this monster and you will win! My son has an internship up at Aberdeen starting at the end of June, so we'll be popping up there and we have our main holiday booked for Scotland this year (again, but we love it). Something to look forward too.

Gawd, I just got my first lot of bedding plants delivered today and it's still so cold!! Don't know what I am going to do with them, it's too cold in my cold frame for them!

Gloria, the paint I used was Dulux Weathershield exterior satin for wood and metal. It's quick drying so you can shut your door at night, self undercoating and weatherproof and it's guaranteed for 6 years. It's stood up to this awful winter we've just had and I only put one coat on. Really nice.

Take care

Sandie xx


Well I started VRT today. I woke up with a migraine and I already have a cold so I wasnt feeling my best. The therapist was really nice and said she had treated a few dizzy people recently. I didnt get the feeling she was an expert in vestibular disorders because she is a general neuro physio but she did explain the balance system to me and showed more compassion than the ents!

I have been given a few pages of exercises to do, pretty standard ones everyone on here is doing anyway. She stressed that I need to spend 30 mins a day on them and to do them fairly slowly to allow the brain to process the information and therefore recalibrate. I see her again in a week.

Gloria - i sympathise with the neck pain although yours does sound dreadful. I was told that the neck muscles are all affected by this and she could feel mine were tight. Complete normality within 2 years like your neuro said would be great but its hard to have faith in all they say as you said Sandie has had symptoms for five years and likewise for Ilia and Emma and loads of others in fact. The thing we can all take comfort in though is that it should improve rather than get worse with time like many illnesses.

Sandie and Melissa sorry to hear you are having mini relapses. Hope they are short lived and you start picking up again soon.

Andy - hope you see some improvement soon.

Take care everyone xx


Hi all,

The sun finally came out today and it was a lovely 70 degrees F. I am a bit swirly headed still. Mostly when I sit still. I have good friends coming to stay with me tonight and until they get power back on. So I have been so busy grocery shopping, cooking, cleaning and baking St. Patty's Day cupcakes for my daughter's class party tomorrow. I'm trying to be optimistic about this relaspe. Wouldn't you know it, it had to happen when I am no longer in physical therapy! Just my luck! I feel better than yesterday. I just hope I can go back to how I was. I literally had two straight months with nothing.

I'm working on keeping my faith!

Jemma glad that you finally got into VRT. Gloria ice ice baby! Remember to ice your neck and try to take advil everyday. It does help. Not for a long time though. Just a few weeks.

Keep the faith Melissa


Well, I've now had my ENT appointment switched to a private one, which means I get seen next Wednesday! A big improvement in itself.

Having felt slightly better Monday and Tuesday, today I feel like I've taken another step back, everything just feels more weird all round, not helped by the fact that I woke up at about 4am this morning and couldn't get back to sleep! Has anyone else found their sleeping patterns get really disrupted by this? I can get off to sleep at night just fine, but once I wake up that's it, no more sleep for me no matter what!

Gloria, what exercises do you do heel-to-toe? To be honest my balance feels pretty decent these days (and I suspect it was never great even before all this!), it's my vision and the various weird feelings of motion or just general oddness in my head that really get to me and grind me down.


Hi Everyone. Happy Paddy's Day! I just wanted to check-in and say hello. Things seem a bit different on here lately. Some of the people who were quite bad off in early February seem to be feeling better, and then there's poor Melissa with her relapse.

Melissa: It's the nature of the beast. You've done so well for 2 months; I'm confident that it's really going to stick soon for you. Call your VR therapist this week if you need another session.

I've been doing really well since 26 February. I hate to put that in writing, but I've been feeling great. I can't complain. I would say I'm about 98% most days. Some days 100%. Even the ringing in my ear has subsided and I have been sleeping without my white noise machine at night. I've been doing my VRT exercises at home religiously, so I give that a lot of the credit. The brain fog has lifted and I've been able to work and stare at my computer monitor all day long without the swaying and bouncing and slow-head feeling.

Another positive sign is that I have a bad head cold right now and it has not had any effect on my dizziness. I wake up every morning and brace myself for the dizziness to start, but it hasn't. My ears are so congested that I can't even "pop" them and equalize the pressure (which is driving me nuts), but it's not bringing on any symptoms.

Nevertheless, I was sent for a CT scan last week and I have an ENG and an ECoG test tomorrow. My new ENT is doing a good job looking for answers and my VRT is working, so I am feeling very grateful right now. Hoping it sticks :)

Jess


PS Andy H: of every labs story on here, your description resonates the most with my own experience. My labs started in late October 2009. I too work full time and feel my worst at work. I feel best when I'm out walking or--funnily enough--riding the subway. It's when I'm still in front of my computer I felt the worst. As for sleeping problems: you sounds like you have anxiety (understandably). I can fall asleep no problem too, but stress and anxiety wake me frequently. Sometimes I take a valium at bedtime to help me sleep better. It's not the labs disrupting your sleep; it's your subconscious feeling anxious. Do you exercise? Maybe try jogging after work too.

Happy St. Patrick's Day to all concerned too!! Don't think I'll be imbibing any alcohol to celebrate though!!

Just got back from VRT physio. Like the neurologist said, for me now it is the imbalance causing the small muscles in the back of the head and neck to spasm. The nerve that runs from the inner ear to the brain stem is like a healing wound and for me that is why it is so sore at the back of my head. She thinks I have probably had viral neuritis - ??? The medication I am on she says is a good thing to release the pain signals from the muscles which will help everything settle down. Do you know, I wish I understood all this 'brain/neuro' speak. All I know is my head and neck hurt, I still get swirly headed and just want it to stop. Simple!!!

Andy - brilliant that you've got your private appointment and even better that you have had a couple of good days. I never know whether it is good to have good spells because it makes you more depressed when you revert back again - but that is the nature of this beast.

The heel to toe stuff is walk in straight line, looking ahead doing h-t, then do the same but walk h-t turning your head from left to right and then up and down. Then, if OK then do the same but with your eyes closed - that's when it gets interesting, well it was difficult for me. My eyes apparently were compensating for my balance which is why the physio got me to do the exercises with eyes shut. The trick is that when you feel unbalanced or dizzy, open your eyes immediately and just straight gaze for a minute to stabilize you balance. Let us know how you manage and keep us updated when you have had your appointment with the ENT. Your sleep pattern is very normal with this. I certainly found I couldn't sleep more than a few hours. If it gets too bad then maybe ask you GP for something. I never thought I would have to resort to taking the medications that I have recently taken (amitriptyline - great to help with sleep but no good for me in helping with the stress/anxiety issues). The Gabapentin I'm taking for the muscle pain thing seems to be OK in the fact I haven't reacted to it, which I do with most medications. I'm still titrating up to the full dose though -so we will see. I do hate taking medication but when needs must and I'd advise the same Andy. As this thing does drag it's heels, some of us have needed extra help to get through - no shame in that.

Jess/Melissa - great to hear from you both. Jess - sounds you are on a roll girl. Hope and pray it continues that way indefinitely for you. Melissa - Cannot believe how warm it is where you are after such awful winter snow etc. We are having a couple of really nice days - not as warm, but can leave the coat off. Sounds like you have also recovered to a better stage than before when it would be awful for days on end? We do keep going through all this don't we? Shopping/cooking/entertaining/ looking after everyone - you just have to get on with it although sometimes lately I have felt the effort has been too great.

Just got my new bicycle today. Had a go in our car park outside the house - felt really wobbly afterwards, so maybe good VRT again? My physio also suggested skipping or jumping up and down on a small trampoline - this is all getting quite ridiculous but I will do it because I think if I don't, then I'll be burdened longer with this.

Sandie - how are you today? Have been thinking about you and hoping things are on the up and your relapse isn't lasting as long as before. You see - you will have to go get a skipping rope?!!!!!!

Take care all,

Love, Gloria xx


Jessica: I haven't been on any other forms of transport of late, but I certainly feel fine in the car (driving or as a passenger), it's better than sitting here in the office that's for sure!

It's good to hear you're doing well though... I wish I could say the same considering I've had this problem the same length of time as you! Out of interest, how slowly do you do your VRT exercises? (A weird question I know!) I sometimes wonder if I'm rushing mine and doing them too quickly.


Andy: my VR therapist says to do the head exercises as fast as you can, but without the letter/word you're staring at jumping or blurring. It has to remain steady in your vision. If it's jumping around, slow your pace down. Also, I'm only supposed to do it twice a day for 90 seconds at a time. Take breaks between your exercises to get back to your baseline. I do the head shaking, balance exercises, and walking while head turning exercises 2x a day.


For those of you who stopped swaying/ moving when still 24/7, how did it stop? was it sudden or gradual, Did you wake up one morning and it was gone?


Hi all,

Happy St. Patty's Day!!!! I went to see my GP today. She said that I have fluid in my ears (no duh) and slightly ruptured membranes in my right ear. That is the ear I had labs in. She asked if I was coughing last week. I said that I was and she feels that is how they got ruptured. She also said I have a sinus infection. She gave me a script for antibiotics and hydroclorathizide. It is a diuretic. She thinks that these medicines should help clear up the fluid in my ears. Cross your fingers please. I knew that was why I was feeling that funhouse feeling. I especially feel it when I bend down or turn my head