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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 |
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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! |
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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 |
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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 |
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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! |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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. |
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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.. |
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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 |
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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 |
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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 |
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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 |
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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 |
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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. |
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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? |
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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 |
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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 |
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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
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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 |
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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 |
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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! |
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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 |
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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 |
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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... |
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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 |
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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. |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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
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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. |
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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 |
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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 |
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HAPPY BIRTHDAY SANDIE! Hope you have a dizzy free day xx |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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! |
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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 |
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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 |
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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 |
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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 |
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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
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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Melissa, Just seen your thumbnail picture of your lovely children. Taken yesterday I presume? Fabulous! Gloria |
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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 |
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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 |
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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. |
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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 |
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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 ! |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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? |
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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] |
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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! |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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! |
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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 |
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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
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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 |
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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 |
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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. |
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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 |
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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 |
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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. |
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Yes, that should have read, all the best to everyone. Well spotted ! |
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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 |
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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
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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!! |
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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 |
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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 |
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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? |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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 |
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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. |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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. |
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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 |
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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... |
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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 |
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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 |
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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 |
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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 |
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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 l |
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