Sharp Blue: Labyrinthitis comments, page 11

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Hi, Just giving the new facebook thing a try. DC, I went to my GP yesterday to have a bit of a discussion about several things and he really didn't seem concerned about the tingling. I guess my main fear has been MS but he was fairly definite that I don't have that! I will definitely talk to the neurologist in a few weeks but I am feeling a bit better about it. Cathy


Thats good to hear Cathy, I have also worried about MS but I have never had any symptoms until I got this infection so I don't think it could be that either, but its hard not to worry when you get tingling and burning sensations. Im still convinced its the physical symptoms of anxiety that are somehow amplified by inner ear dysfunction.

DC

Hello all...worked for me, too!

Stay well all...and it's great to put faces to names xx

I have to admit to being a mixture of excitement and apprehension heading up to my first ENT appointment as I am sure you all are/were.

Do any of you have some advice of the questions I should be asking? Things I should remember to tell him? I've got just over a week before I go so there's no huge rush.

Thanks!!!

\Tanya

Hi Tanya,

Well...hmmm, just be sure to tell them all your symptoms and what makes you feel worse, better, etc. It might be a good idea to start making notes of what you what to tell them and put it into some kind of order. I found that at my appointments I would just blurt out whatever I could remember at that time.

Be adamant and strong when speaking with the ENT person about what you are going through. The ones I saw seemed to think they knew everything when in actual fact, based on the things I have read here, they knew absolutely nothing except the term 'Labyrinthitis'.

Let us know how you get on.

All the best, El xxx

Hi, El!

I am too anal retentive not to take notes with me, I even did it when I was "healthy" and saw my GP!

I'm seeing a consultant privately (probably only UK residents will understand the significance of that, but it means the cream of the crop) so I'm hopeful he'll know what he's doing (and I was reassured by his secretary when I told her what I was being referred for she gasped and called me a "poor dear" so if -she- is that familiar with it... anyway, at this stage, because I haven't seen him yet it's speculation, but I'm hopeful nonetheless.

I will -definitely- keep you all posted :D

\Tanya


Hello all,

I am new to this blog. I have been suffering for 4 weeks with what my GP says is Labrynthitis. I am like all of you, good days and bad. I see the ENT next week and am not too hopeful for a successful treatment. One thing I was wondering is if anyone has had the steriod injected into the ear and if it was successful?

I have read pages and pages of your blogs, and saw the power line comments. I too grew up drictly under them. I wonder if it caused a weakness in our ears.... hmmmm any thoughts?

Thanks for your blog, it sure does help knowing I am not alone.

Vic


I have been suffering from what my doctor also says is Labrynthitis since the end of November, so going on 4 months. The first time I seen the GP, she told me it would be gone in 3 weeks - nope - still here. Went and seen an ENT in January, he told me it could take months, it's still here. Made another appt with ENT, I just want to make sure it's not something else. I've never in my life had these strange sensations - floating, pressure in head, behind nose?? I'm about to go out of my mind!


Hey there! Did anyone see the recent HOUSE episode Monday, 3/16? There was a real reference to Labyrinthitis!!! A friend of one of House's sidekicks had complained of similar symptoms. He told Taub that he had Labs and Taub had him lay all the way back on a table. Then he slowly turned the guy's head far left and then far right. The doctor told him he was doing this to try and shift the calcium deposit in the patient's inner ear. And guess what? it worked LOLOLOLOL It should be so easy, huh?

I had words with my designer today. Today was my first day back at the college and he got snarky again about something we had already agreed on. Long story short, he admitted that he was frustrated with my inability to retain information. I then told him what I had tried to tell him weeks ago.....about the Labyrithitis, and how I felt it was clouding my brain. He still cut me off, but said that it made sense now since it is all medical.. He wasn't at all sympathetic. I do not believe I'll stay with this job after this last show. It's just too stressful for me. I'd been feeling better. Dizzy spells are lessening, but my eyes are tired and sore. Will try to see my eye doctor tomorrow. I have been back on my vitamins as recommended on this site and I think it's been helping. The iron especially. Still wake up with sore legs, but a couple of aspirins usually do the trick. Thanks to all for your responses..... Laura P - stitch witch!

Hello all and welcome to newbies!

Heather, the few symptoms you mention sound like Labs symptoms. Do you have any dizziness or imbalance, heightened state of anxiety, sore eyes, headaches? Mine first struck on Sept. 15 and I went to my GP the same day - she said it sounded like an infection of some sort. I changed my GP a month into it and my new GP told me it would be gone in eight weeks or so and that it sounded like an ear infection.

I ran left and right like a headless chicken to any medically qualified person who would see me - they all said no more than eight to twelve weeks. I have just gone past the six month mark and am feeling a lot lot better - I'd say I am at around 90% now. No thanks to them at all. They just seemed to disregard my fears and worries and just exacerbated them by not explaining things to me - obviously because they were clueless.

Try reading through page 10 of these comments - there are a lot of suggestions on how to cope with Labs and related conditions.

Best, El xxx


Thanks El - yes, I can relate to the anxiety, worrying if this is ever going to go away. Your blog gave me hope and from some people I have talked to, they also said they felt much relief after the 6 month mark, so maybe in two more months all of this will disappear. My GP gave me meclazine - knocked me out, no way I can take that. I'm just sick of this feeling and want it to go away. I have appt with my ENT doctor on Wednesday - I'll let you know what I find out- hopefully some reassurance that this will end.


Did anyone watch the recent HOUSE episode? Dr. Taub meets up with an old friend who mentions that he was diagnosed with Labyrinthitis. Taub then has him lay back on a table and slowly turns the patient's head from left to right and then has him stand back up. The friend can't believe it but his symptoms are relieved! Dr. Taub tells him it sometime works to shift the calcium deposits from the inner ear. IT SHOULD BE SO EASY!!! LOL But I was impressed that my labs had a small part on HOUSE.

As for working with my costume designer - we had words yesterday. The dynamics aren't working for us and the stress/anxiety aggravates my Labs' symptoms. I tried to tell him again about the Labs and he seemed to be relieved to blame my inability to "retain information" my fault (medical condition), rather than to think he's difficult to work with - odd, huh? I don't have the retention/memory problem with my other jobs?

Anyway, I worked too many hours last week and I'm enjoying my day off today. Had a friend help me clean house, but then I must've overdone it because I started to feel woozy. I also eat more, because I think I'm trying to avoid the nausea. Feeling better now. I've also started on the vitamins again because of what I've read in these posts and I think they're helping! Thank You! Laura P - stitch witch


Hi, I'm new here. I was diagnosed with LABS about 4 weeks ago. I'm still feeling the spins. I have just recently started experiencing constant muscle twitches and strange electric sensations all over my body. It is very uncomfortable and it has been non stop for the last few days. Has anyone else felt these same symptoms alongside the Labyrinthitis?

I hope the best for everyone on here :)


se7en - I'm surprised too by the muscle issues I'd been having. Someone did explain here on the blog that we are constantly working to keep our balance while standing, so it makes sense that our muscles would feel more fatigued than usual. I've started back on my vitamins, esp. iron and E and I do think I'm improving. The other night I actually slept straight through, which I hadn't been doing since January. My biggest complaint is feeling so tired. And it hits so suddenly. I'm planning another appointment with my GP to review the symptoms and request bloodwork - again! If I take the meclezine I'm basically useless for 48 hours. It relieves the nausea but seems to exacerbate my fatigue. I also have Klonepin, an anti-anxiety med. and it also knocks me out. I've taken Klonepin in the past and prior to having Labs, I didn't react that strongly to it. Now if I take it at night to help me sleep, I'm exhausted for 24 hours. Interesting condition though. That a simple "inner ear" problem could cause so many symptoms? Laura P


Right.... Trying again


Hi Laura,

I think it was me that said your muscles would feel more fatigued due to the fact that we are trying to keep ourselves balanced! This possibly also goes for neck pain as I know I often have a stiff neck because I am trying not to move my head.

Se7en - I still (even after 4 years) suffer from electric shock sensations in my head which can be scary and I know lots of other people have mentioned them in their arms and legs so I wouldnt worry too much about that.

I'm still suffering quite badly at times. Went into our local DIY store last Friday and they have one of those moving walkways which doesn't have stairs, it is actually flat, and it is quite steep. I absolutely hate it. The week before I had been in by myself and went up and down no bother but this time I was with my hubby and we got off on the way back down and I took a mega dizzy spell. It only lasted a few minutes but it was really horrible and this is what I hate about this illness, you just don't know when it is going to hit. I can be fine one day doing a task and then the next doing the same task I can suffer like this.

Anyway, must keep fighting. My son is home from Uni tomorrow so that will cheer me up.

Happy Motheer's Day to all of you who are mothers and lets be thankful for the small things in life like breakfast in bed from my 12 year old daughter - really sweet!

Sandie


What a beautiful day it was here in my home state. I spent the day working at the greenhouse. - Notice the time? Fell asleep at 8pm and woke up 4 hours later. Now I'll be up a few hours and then go back to sleep. Sleeping straight through 8 hours is rare anymore. Anyway, I've noticed something with my condition. When I have the dizzies, mostly an ongoing mild sensation, throughout the day, I find that my thinking processes are more clear. When I'm not actively feeling dizzy, my brain seems more foggy. I think this is because my brain is too busy compensating for the dizzies! Does this make sense? So If I can reach an equilibrium - perhaps I could think clearly and still get by with moderate dizziness.......... Well today was great. I felt good mentally and physically. I was up and down ladders watering plants etc. I brace myself each time reminding myself about my condition, but did fairly well. There was only 1 time when I almost lost my balance. I feel fortunate to be able to do that much, but try hard to push myself further. Happpy Mother's Day to you too Sandie! My kids are older but still close by so that is nice.


Im no longer dizzy, just off balance, kind of feels like I have water in my head or Im on a boat rocking around, it gets worse after exercise or running around at work. I find I have to keep working through this feeling and keep pushing myself a little more everyday until my brain compensates and adapts. I also find certain lighting and stripped patterns seem to look like its shimmering as well, really odd. Also lining up at supermarkets seems to also effect my equilibrium as well, I start to feel an internal swaying and then my anxiety seems to kick up a notch.

Just some things Im going through at the moment.

DC


Hi DC

Just to let you know that I feel the same when standing in queues or any instances where I have to wait. I can be fine when doing the shopping or whatever but when it comes to the waiting I start to sway.

This has happened on and off for the last four years. And the weird thing is sometimes I am absolutely fine and can wait a good while and then other times I cannot wait at all. I know this is not all 'in my head' because I am a very patient person and will always wait my turn however long that might be, but I find myself getting very agitated and tutting and butting if people are 'wasting' time in queues i.e. chatting away to the cashiers, it drives me mad because I feel so bad!!

Take care

Sandie x


Vicky - By the time I got to see a specialist (Otolaryngologist), it was too late to save the hearing in my left ear. He said he would've given me a direct shot of steroid in my ear had I seen him 2 weeks earlier! As far as I know, getting the shot is a last ditch effort to improve hearing, not really for dizziness.

Everytime my hearing in my good ear feels like it's going down, my docs give me steroid pills to take for 1-2 weeks. I got that full-headed/rocking the boat sensation few months back and the steroids got rid of it.

Katie - Work has been piling up so I haven't been on in awhile. I've been through my share of bad relationships to last a lifetime so that's why I keep that poem close by. I did finally find someone worthy : )

I'm sure you will too soon (if it hasn't happened already)...you seem like such a vibrant and spirited person!

DC - I had the same symptoms during my 3-5 months. I'm in my 6th month now and mostly symptom free. Will keep my fingers crossed you will get better soon too.

Hope everyone else is doing great!


Just to comment DC and the shimmery patterns. I have had that at times too. My sister in-law said that is because our blood pressure is elevated during that time. Does yours hang on for a little while then leave? My first time was horrible, not only was I on my second day of labs but the shimmery pattern too. I thought I was loosing it for sure, or a tumor.....

I am feeling better today. This is day 3 of feeling 75%. My doc gave me Valium so I can sleep through the night. The first night I woke every hour, but the second night I slept 12 hours! I have not felt this good in over a month! I know it is still hanging on because I feel dizzy after sitting at the computer but I am not taking any drugs during the day now. Of which I am glad!

Hugs to you all,

Vic


I also got dizzy sitting in front of my PC originally but that has now passed, is anyone getting sinus pressure in the nose, i still have pressure in my ears and get alot of post nasal drip. I think I may have got my labs from a sinus infection as my GP kept telling me that I had sinusitis.

DC

Hi all- It sounds like there is some improvement which is great to hear. I just want everyone to know that there is hope. I am nearing my 6 month mark and feel like I have finally seen the light at the end of the tunnel. Last week was my best week since this all started. I had a few days where the dizziness seemed to have cleared and that is amazing after being dizzy 24/7 for 6 months. This week hasn't been quite as spectacular but it hasn't been horrible either. It seems like this is a 3 steps forward 2 steps back recovery. But eventually we will all get to the end of it. I am still doing VRT which I do believe is helping and trying to stay active. My dizziness is pretty mild now and I can get through the day a little easier. I had pink eye in both eyes a few weeks ago and ever since then my eyes have felt extremely tired. Even after a good nights sleep it seems that they never feel rested. I don't know if this is something lingering from the eye infection or if it is another symptom that comes with labs. Has anyone else experienced this?

DC- I also get sinus pressure in my nose and cheek area from time to time. It is strange all the side effects that come on due to labs.

Everyone hang in there, we will beat this.

Laura


Laura - from the way it sounds, most people are seeing some relief after the 6 month mark. I'm on my 4th month of this nonsense - seeing my ENT again today. I need some reassurance that this is going to go away. I too, have experienced the 24/7 dizzy/lightheadness. I have lots of pressure in my nose and cheek, and my eyes feel really tired too. So much pressure in my head also. Strangest thing I've ever dealt with.

Heather- I promise it will get better. I know it is discouraging, having good days and then going back to bad days is so frustrating. If I look back over my whole illness though I know what I consider to be a bad day now would have been a good day about 2 months ago. Even if the progress is extremely slow it is still progress. Just think how much more we will value our health and time and when this goes away! The pressure is weird, it is there some days and gone on others, I have a hard time trying to pinpoint what causes certain symptoms, there seems to be no rhyme or reason to it. Hope your ENT appt. goes well, let us know if they have any revelations:) Have a good day.

Laura


Hello Everyone Has been a few weeks since i have posted, not been having a great time really. Had yet another ear infection and more antibiotics, sure it is viral though and not bacterial so like it all will take time!!!!

Been back on the boat today, pardon the pun and been having really funny sensations on my scalp almost tingly cold feeling that lasts only a few seconds then passes. Any one had anything similar.

Heather i also have terrible pressure in my nose and cheek, thick head and pain in my eye on affected side.

I have my balance tests on Monday, which not sure will show anything, or what they involve?? Also waiting on MRI, hope this is done soon as like most of you i am sure you start to think this is much more than an ear infection!!!!

Hi to cathy,El, Laura, Sandie and Katie Hope you are all well and if not fully recovered well on the road.

To everyone else take care and keep fighting, love to hear your thoughts on my questions and anxieties Ruth xx


Hi Everyone

Well... It's going to be old school posting style for me. My PC has a hissy fit every time I attempt to go for the new funked - up version :)

Ruth... Nice to hear from you. You've had another ear infection!? That stinks. It would be lovely just to get two minutes peace. When I went for balance tests he just shoved me in different directions! Total waste of time. That was at Gartnavel in Glasgow. Is that where you're going? If not maybe you'll have some more luck. The tingly cold sensations sound more like flu-type symptoms, maybe they're just connected with your latest ear infection? Anyway let us all know how you get on honey :)

CL... That's very sweet:) Not tempted at all! I'm off back to my nasty high stress chefing job soon and I have to humour 20 mini Gordon Ramsays for 60 hours a week. Oh the joy :) Hope you are doing well? X

Sandie... How are you doing? I was just reading through your last posts, you seemed to be having a rough time of it? Are you feeling any better now?

Angela... How are you?

Lots of love

Katiexxx

Hi Ruth, it's good to hear from you. I've been wondering how you were. Good luck with your balance tests - I had them in January and they were okay - the one where they put hot/cold air in your ears made me feel like the room was spinning but apart from that I thought it wasn't too bad. Mine didn't show up anything but apparently that is quite common...

I am going quite well, am functioning fairly normally most of the time, but I do get dizzy and feel off balance sometimes, definitely more at "that time of the month". I have definitely improved a lot but I also think it's a case of learning to live with it. I am still having a lot of tingling/burning/pain in my arms hands and feet and a strange vibrating sensation which really worries me! and am finally going to the neurologist on Tuesday - will be very interested to see if she can offer any answers!

All the best everyone

Cathy


Hurray! I've had 3 nights in a row sleeping at least 7 hours straight through! It has been a long time since I've been able to sleep straight through. And I'm actually feeling better during the day! I'd started with the vitamins and then this week started taking a sudafed each morning which I'd hoped would help with the congestion. I guess it's all helping. My eyes are still tired and I have a low grade headache behind my eyes. I'm scheduled for an eye appointment next week. I'm probably due for some new lenses. So I'm keeping my fingers crossed!!!!!

Oh the funny thing is - when I am sleeping so well, my dreams usually involve water in some form. Either I'm on a boat, or standing by a lake or waterfall.... so I'm guessing I'm still dizzy/floating in my sleep but it's not enough now to wake me up. Weird huh? Laura P


Here is a link with some VRT exercises, Im going to start doing them and see if they help my balance, although working out and dong normal activities seems to be really good VRT, these additionally exercises may speed up our recovery.

http://www.michiganear.com/library/B/balanceexercises.html

DC


Just out of curiosity has anyone read that the herpes I - cold sore virus can be a culprit of labs? I get cold sores at least every other month and had an outbreak on my upper lip when this all began??? I don't know, I'm just trying to weed things out - this is the most frustrating ordeal I've ever been through.

Had my ENT appt - I demanded a CAT scan, so I am getting one next Monday, he is also sending me to an audiologist to perform the balance test - EEG?

It's strange how one symptom can disappear and then another one arises. Now I have the pressure again - also in my ears, pressure in my face, nose.

This is driving me nuts - has anyone gotten on some anti-anxiety medicine to get them through this?


It could be any number of viruses responsible for Labs, the problem with viruses is there are no cures for viruses we just have to allow our bodies immune system fight it off. The virus that causes Labs may already be gone, but the damage to the inner ear is what leaves us with symptoms, now our brain and CNS now have to compensate which can take some time. I have had pressure in my nose and ears for about 3 months now, not as bad as I had it initially, so I feel Im progressing.

Hi Heather, Yes, I have read that the herpes virus is thought to be a culprit - I don't know if there's any proof but I have read about it on the internet. I too have always been prone to cold sores - it makes sense as it's a virus that stays in your system. I know what you mean about symptoms changing all the time - it's frustrating.

Cathy


Cathy and Heather

I'm also prone to cold sores, how annoying. I take a Famvir whenever I feel one coming on and I use Abreva. Both work well to stop the onset. It is a virus.... My good friend who lives out of town, just told me that she went through Labs twice in 2 years. I'm guessing it's the same virus but was dormant for a while. Anyway, she's convinced that it is all related to menopause and is now taking "bio chemicals?" Well I'm also in menopause and wondering if this is all related. Anyone else having similar symptoms - with menopause? Laura P

Oh - another great day!!! Hopefully I'm through the dark side?

Hello all,

Hope you are all as good as can be expected! Yeap, I, too, suffer from cold sores - they appear whenever I am under even a slight bit of stress and I have often wondered if that was the cause of my labs. We'll never know and can only speculate and in my case, my money is on the cold sore virus!

I am doing a lot better and would say I am still at around 90%. I never thought I'd get here but I did and am positive that in the not so distant future I'll reach 100%. It will be seven months on April 15 but even if I never get better than I currently am, after what I went through I'd be grateful to feel even this way forever.

Heather, personally, I would stay far, far away from anti-anxiety medicine. You're much stronger than you're giving yourself credit for. I suffered from severe facial/head pressure during my ordeal and it eventually passed - I did a lot of steam inhalations which helped. I also had the sore eyes but that is passing, too. Stay strong and be as positive as you can be. I am sure your CT scan will come back clear as your symptoms really do sound like Labs.

Stay well everyone, El xxx


HI everyone, I am new and have had a dagnosis of labyrintitis for just under 4 weeks. I am a first year teacher, a mum of four, aged 38 and a tough cookie but this has me beatically both physically and mentally. Even typing is like hell......How long will my employer put up with my incapability to do my job? AND the big question, how long can I expcet to get paid as I have a wedding in 20 weeks to pay for? It is all going belly up for me and I just need someone to talk to who understands.

HELP!

Julie x


Hi Ruth,

I'm not too bad at the moment though still off balance and dizzy but not all day, so on the mend yet again - will I ever get there?

I have also had the tingling scalp sensations though I have not had them for a while so don't worry too much about them they are part and parcel of Labs. I also used to get sharp pains above my left ear from time to time which would only last a minute or so but boy were they scary. They used to make me feel really ill, I don't know if it was the fear or what, I was so scared in case it was something more sinister, but they would knock me for six. Over the years I have noticed a pattern, though it did take me a while to click and they nearly always come a week or so before my period was due. I also get weird feelings like warm water is trickling over my head.

Hope your balance tests go ok, let us know!

Katie - yeah - getting there again. The dizzies are getting less but the asthma is getting so much worse. I've been taking the nasal spray for a couple of weeks now and not seeing any benefit as yet, though I am getting less dizzy and lets face it, it's all connected! Just get so sick of it being one thing after another, what have I done to deserve all this - I am a good person (sometimes), haha! Good luck with all the little cheffies - I can just imagine the fun you will have!

Heather - I agree with El - stay away from the anti depressants. You have to be strong and remember that this does get better. Even if you don't recover fully as I have not (I have had this for 4 years and am still struggling with it), you get good periods and life is still worth living!!

Laura - I am 48 years and don't think I am in menopause as yet but it must be hovering! My periods are regular but have shortened over the last few years though still VERY heavy. My cousin has suffered the same as me in the past with the dizziness etc and she had a hysterectomy a few years back. Since having this she only gets the odd dizzy spell now and again so - yes - I think it can be all related and let's face it most of us are women and a lot of us are in our forties!

Hi Julie - welcome to the board. So sorry that you are suffering with all this junk at the momemt. Where are you located?

This must be hell for you with four kids as well. How old are they? I was lucky in that my youngest was 8 years old and my oldest two 17 and 15 when this started so no little ones to take care of. If you are UK based your employer cannot finish you when you are on the sick although if it keeps on happening like it has for me, I don't know where you would stand then. I have not had any harassment from my employers, they have been very understanding (to my face anyway!) but I know some people on here have gone through hell with theirs. I actually feel sorry for my employers having to put up with someone like me!! With you being a teacher I would think that they would be quite understanding.

I do hope you are one of the lucky ones and that you recover quickly.

Take care everyone.

Sandie x


Hey Julie - It's a tough call. Read through some of the prior posts. I fortunately work several part time jobs and actually only called off twice in 4 months. I feel very fortunate that my symptoms haven't been as severe as some others I've read about here. It is important to maintain as much of your regular lifestyle as possible. You really have to force your brain to compensate for the illness. I was doing what they refer to here as the gazing exercises early on, without realizing what they were. Whenever I felt dizzy I would focus on something and breathe through it. Occasionally I did have to brace myself and close my eyes. And there were a few times I had to suddenly sit on the floor. (Try explaining that behavior! LOL) My worst problem had been working at the college with the costume designer. He couldn't understand why I wasn't able to retain any info! I felt so stupid all of the time. But I also felt extremely overwhelmed and I think that is because this was a new situation for me. Stress exacerbates the symptoms! Anyway, we finally "had words" 2 weeks ago and I told him again about the Labs and how I felt it was affecting my brain activity. He listened this time and we worked things out beautifully. Hopefully I'll still have a job there next fall. But whatever - life goes on I'll manage...

It is scary and confusing and DRAINING! Rest as much as you possibly can and keep a stable surface always close by. I still find myself leaning a lot. Explain to your students what is going on (only as much as they need to know) and what to expect. It'll work out.

As for previous text re: anti anxiety meds. I have Klonepin which I've used in the past HOWEVER when I tried to use it during the Labs experience I only made myself exhausted! My body couldn't tolerate the added sedation of the Klonepin. So I now avoid it!!!!! Like I said the iron and sudafed have been working well. Laura P


Hi julie - I'm also 38 and have been dealing with this so called "labs" also, for 4 months! I know exactly how you feel and thank God for this website - it has kept my sanity - what exactly are your symptoms? I am having a CAT scan done tomorrow of my sinuses - if that comes back normal, I'm heading back to my family doctor


Hi Everyone Julie welcome to the site, i really understand what you are going through. I was told i had labs in January after a bad bout of flu at christmas and still struggling. My ear continues to be sore, congested, headaches and feeling of pressure in my eye and face, which sometimes feels numb. Anyone else had numbness? What are your symptoms? I am 42 years old, so just a bit older, mum of two and work as a specialist nurse in a hospital, work has been difficult but i have been trying to go every day and last as long as i can. My dizziness is more like being on a boat and my nausea is now a bit better so manage okay, worst is the pressure and headaches after a day at work. Hang in there!!

I went for my balance tests today and i know you all told me that they would not show anything, but my experience has to beat them all, she could not get the camera to work so had to rearrange appointment, bloody typical NHS didnt even have a back up one!!!!! Got my MRI in a couple of weeks and think will feel better when i know that there is nothing sinister going on...

Julie what kind of symptoms do you get from your sinuses? Mine seem to be bothering me a lot lately...

Cathy and El really glad you are doing well, Laura not sure about the menopause, i am not quite there yet, but sure it could make things worse.

Take care everyone and thank god again for this site.

Ruth xx


Hi Katie

I have been not too bad the past 2 weeks, up and down still, still waiting on my appointment for the spinal lumber puncture, pure dreading it. Terrified is the word. Doctor gave me new meds I have not started them yet, too scared, defo think they are going to make me sick. The Neurologist has told the doc to start me on them.

My employers where back out visiting me, they have stopped my money and told me I will be probably be sacked now, just waiting on the paperwork to tell me. Dont know what I am going to do. Am fed up boring everyone with all this, sorry doll.

Angela x


This site has made me feel better - no one knows what i am going through now the worst symptoms aren't visible - I think people think that i am just making a meal of it and using it as an excuse to skive - not so - in fact i am really worried about how long its all going to last and will I ever be able to do my job again - I was diagnosed 3 weeks ago after a violent attack of vertigo and dizzyness. After three weeks I have memory problems, cant get words out, heightened anxiety. Still have agitation - i have read lots of posts but havent seen the sympton agitation - I've got constant buzzing and hearing loss in my right ear. Everyhing i do its like i have to force it and i feel tired afterwards. Feel mentally exhaused and yet my brain wont stop working. I am a community fundraiser and just want to get on with my job. I did some gardening today and that calmed down the agitation. Thanks for reading - I feel better now.


Hey everyone Glad to read the updates - Why the lumbar puncture? What are they looking for, meningitis???? Woke up this morning feeling great, until I had my first sip of coffee which had a strong rusty taste. Shortly after I became very ill, similar to food poisoning? I did have to call off today. My 3rd in 4 months, though I do think this is really the flu. I'll know better tomorrow.

Talk about brain fog! The other day I was cleaning out my vacuum cleaner and then completely forgot how to put it back together. That was a scary moment, but then I reminded myself to just take a breather..... Take care everyone, spring is on its way!

Laura P


Hi Angela

So sorry to hear about your job. Keep sight of the fact that you are the important one here and your health comes first. Don't persecute yourself, you are not faking this thing, it is awful to suffer from it and there is really nothing you can do apart from concentrate on getting better. This illness takes time to go and it is small steps along the way, (sometimes very small!).

Carol, sorry to hear that you are suffering. Agitation is part of the anxiety which is all part of Labyrinthitis. Nearly everyone with Labs suffers from anxiety at some stage. For me, I was a couple of months into it when I started to get anxiety. I could be sitting doing absolutely nothing and I would get this awful feeling that would whoosh over my upper arms and I would get the feeling like I wanted to run somewhere. I don't know where, because I would already be in my safe place!!! I would also be highly agitated at these times because you don't actually know what to do with yourself. I used to have the curtains slighty open at night in my bedroom because I hated the idea of being in a dark room and I couldn't wear a watch because for some reason I thought it was cutting off my blood supply!! Strange or what? So don't worry too much about that, it is very normal. I suffered with this for a couple of months in the early days (four years ago) and have never had it since and I'm glad to say I wear a watch now, haha!!!

Laura - yeah - spring is certainly in the air, my garden is starting to look pretty and I can sit out in the sun, whoopee. It does make you feel better doesn't it.

Take care.

Sandie x


Hi Carol,

I had the same exact symptoms as you in the beginning. Things may seem scary now but do know that it does get better. I worked from home for the first 2-3 months due to the constant dizziness. I'm in my 6th month now and am almost symptom free so hang in there.

Note on your right ear - I lossed the hearing in one ear permanently cause I couldn't get to see a specialist in time. They can't do anything after 4-5 weeks. Wish someone had told me so I could've prevented it. Hope it's not too late for you.

- CL


Angela....

My God.... What a bunch of ars*h*les your employers are! It's just unfair on a whole new level. As if it wasn't tough enough. Listen sweetheart I really believe their day will come, and the old karma thing will kick in :) I know this is almost impossible but try not to take what they are doing personally. They only see the financial side of things. Not you, the person who's left struggling because of their actions.

Something I have noticed though Angela... Since you started posting here, you have mentioned your work in nearly every single one of them. They have clearly been a huge cause of stress and worry for you through all of this. Had they've not hassled you and not been on your back 24 - 7. I'm sure you would've had a better time of it. They've made an already bad situation intolerable and they should be ashamed of themselves. Just think how nice it will be to free of those bast*ards! They can shove their company doctors up their a****!

As for your job.. I would have a serious look at a work from home alternative. A 'plan B' to generate some kind of income. I mean... Really do it. You know what you're good at. Have a think about it. If you can sort something out, all that stress will be gone. You can work at your own pace, nobody glaring or breathing down your neck, and it would stop you from putting a time limit on your recovery and take all this pressure off you.

As for the latest batch of smarties you've been given. What are they hoping they'll do? And for the lumbar puncture.. Try not to worry too much about that now. Day at a time doll. Just do your research so you know what questions you want answered.

The fact you are up and down and the last couple of weeks haven't been too bad is an excellent sign. If it's not getting worse. I would see that as a really good thing :) You hang on in there sweetie and come on here and rant as much as you like!

Lots of love

Katiexxx

Hi, all.

Yeah. So. Went and saw Mr Special ENT Otologist Guy. He mentioned that the herpes/cold sore virus could have certainly caused my Labs (how strange that you all are now talking about it). Checked my hearing and suggested that with some physical therapy I could begin following a road to recovery.

Today I had my first appointment with the physical therapist and answered all of her questions which were the same as the questions asked by the ENT.

Her conclusion? MAV (Migraine-associated Vertigo). Now I'm all peeved off and deflated. So, I'm sitting here pretending to research MAV and thanking the heavens that I correctly told the Physical Therapist that asking me to completely give up coffee will land me in prison for murder (NOT a morning person, me) and I can't help but feel frustrated and annoyed at the "unfairness" of it all. Misdiagnosis happen, surely, but now I have to "start again"? WTH?

Hugging you all and sending warm, healing thoughts (I'm certainly not using them at this moment in time)

Much love, T

Hi all- Angela, I feel so bad for you. I hate that your employers can't understand how terrible this is. I think it makes it harder for people when we look like we feel fine and they can't see any signs of sickness. I have always had people tell me it doesnt look like there is anything wrong with me and that just infuriates you. It is a hard thing to understand unless you have gone through it. In the beginning I missed about a month and half of work and my employer was pretty understanding but I was afraid to let it go on much longer so I returned to work even though I felt terrible. Some days I know I was worthless, I was just a body at a desk. I do think not having the stress of work and when you have to go back hanging over you will help. I know that was very hard for me. You can't rush it. I promise things get better. I am just into my 6th month and things have started to turn around. It has been very slow but there has still been progress. I have been doing VRT for a few months and I really think it has helped. I know being active and moving is the last thing you want to do but I promise it helps.

Tanya- MAV and Labs have very similar symptoms. I was told at one point that they thought it was MAV but I was never given any medication for it and now I have started to take a turn for the better. Sometimes I think doctors just give us a diagnosis whether they know for sure or not. Keep researching and looking for answers.

Hope everyone else is doing well.

Laura

Hi Tanya, and everyone,

I too have received a diagnosis this week from the neurologist - she says I have Menieres. I'm not really convinced as from my reading you have to have the spinning vertigo and hearing loss and I have never had that!

When I talked about labs she said it's been going on too long to be that - but there are so many people on the internet who have labs for several months and then recover! When I asked about MAV she said it would be more of an 'attack' than chronic symptoms - but also I have read about many people on the different forums who have constant symptoms. Although I thought people with Menieres had attacks rather than constant symptoms!

So I don't know what to think either - especially as I was really going to the neurologist to ask about tingling/burning sensations rather than the dizziness as I thought that was pretty much under control. She has prescribed antidepressants not for depression but to help me sleep better and to mask the strange sensations - not really what I was after - I would really have appreciated an explanation as to what was causing them!

So I am feeling a bit lost at the moment - although I'm not really sure if giving a name to this condition matters anyway. It seems that no matter what it is it can be exacerbated by fatigue, hunger, another virus eg a cold etc. And diet seems to be crucial in all of them as well...

All the best to everyone Cathy


You are all so wonderful! It is just a blessing to me that I fell into this site - it's the only one of its kind that I've found so far.

Work can be so frustrating and I'm saying this in the general sense. I've left good jobs in the past because I didn't want to deal with the stress and crap. I knew then how it would affect my health and I also feel it now. I traded in my last fulltime job (profit sharing and all) for the three part time jobs I now have. I'm really tired some days, but most days I'm stress free.

I did have, I think, the stomach flu on Tuesday and sure enough, my dizzies came back to plague me the rest of the week. And along with that the restless sleep patterns. Oh well... I have eliminated my Dunkin Donuts coffee with espresso, but I refuse (I think) to give up coffee altogether! I have an eye exam scheduled for Monday, but I think I need a re check with my GP to let her know I'm still having symptoms. I still have problems with my right ear and I am suspecting some hearing loss.

I do believe in Karma and I believe in "letting go..." That has helped me before with my jobs and relationships, I hope it can help some of you also.

Laura P


Hi Cathy

Menieres is ALWAYS associated with hearing loss and disabling vertigo. That is what I have always been led to believe. You can be fine for months and even years between attacks and it is not constant dizziness like what we suffer. MAV, is a strange one, as it can be this even though you do not suffer the pain of a migraine.

I am living proof that Labs does and can go on for years. It is not the virus that stays with you for years - that leaves the body pretty quickly, but it is the damage it leaves behind that is the problem. And, you are right, it is all made worse with every further virus, cold, hayfever etc which bungs your head up and magnifies your problems. Also, like you, I need to eat on a regular basis as I feel really weird and light headed if I don't! And you do get more tired than a 'normal' person because your brain is working that much harder trying to keep you steady!

Please try and steer clear of the antidepressants as in the long run they really will not help - the same with other drugs prescribed for dizziness etc. They only mask the symptoms and dull the brain. Your brain needs to compensate for the damage the virus has done to your inner ear and it is not going to do that if it is constantly dulled!

I know I have been suffering for 4 years now but for everyone else, you should recover much quicker. I do have other things going on that have probably made my symptoms worse for all these years such as the severe allergenic rhinitis (all connected to the ears) and my low ferritin levels (which also causes dizziness and balance problems). Ferritin (iron reserves) takes years to deplete, so this could have been my problem for a long time.

Take care

Sandie x

Friends keep telling me to go private and forget about the NHS but what the hell are they going to do for me? I have heard so many stories of people on here getting expert 'specialist' treatment and coming away with the same old diagnosis each time!! My friend paid to go private and actually saw the same fellow she was seeing at the NHS hospital!


Cathy, Get another opinion, this is one reason Im hesitant to see a specialist at this stage, by the time they figure out what's wrong with me I'll probably be better. Im going into my 4th month now and every week I feel a little bit better, Im still doing acupuncture 2 days per week, exercising everyday and taking vitamin and herbal supplements, the way I look at it is if I am making progress thats all that matters. In regards to the burning tingling, I still get it but not as bad as before and its mainly in my feet and ankles now.

Hi, Cathy!

Hi, everyone :)

I completely understand your confusion, Cathy. I had been under the distinct impression (having been told) that I had a certain condition only to be then told that because my symptoms are "different" (I don't have positional vertigo, it's more of a constant thing though I don't feel nauseous most of the time) and I now feel as though I'm back to Square One.

Two things I -have- taken away from the whole visit with the physical therapist are A. I went to the appointment without a -shred- of anxiety and even shopping can make me feel anxious so that's a major milestone for me and B. I -did- significantly increase my chocolate (known migraine trigger) around the time that my symptoms moved from Labs to constant so I am going to try, as she suggested, cutting out the chocolate. (I was the "occasional" chocolate eater and then started having chocolate soy milk in my coffee every morning because it tasted better so while I don't think that it's the coffee that's triggered it I do feel that the chocolate may have as that's what was "new" or "different".)

She advised I go back on to Nortriptyline. I had been taking it because my bowels are depressed *laughs* No, it has muscle-relaxing properties and was to help ease my IBS. I stopped taking it because I didn't feel it was working only to come full circle the day of the appointment with the PT to realise that I do need to be on it as it helps tremendously. I started taking it again that night and the results aren't immediate, but it seems to make sense as there are now two separate health "issues" that call for it.

I've also been reading about links between Migraines and IBS so that's some interesting stuff.

Of course, I will keep you all posted about my results going chocolate-free and adding the anti-depressant back in and I'm still keeping my food diary so I can closely monitor and easily go back and check how I've done after certain foods, different triggers and the like.

One thing, however, that made scratch my head was that the PT wants me to pay attention to my "cycle" regarding hormones and migraines (my "freewheeling episodes") as there can often be a link between them but I'm confused. I don't get a "monthly" as a nice side-effect of the birth control I use and haven't suffered from PMS/PMT since I got clear of puberty so I'm not sure -how- I'm supposed to keep track of it!

I'm really of a mind to start Ginkgo Biloba but am hesitant until A. I go back to my Gastro to make sure he thinks it's OK with my IBS and B. investigate more the mentioned possibilities of allergic reactions as I have enough of those already, too!

(Yes, I am often told I should have been a bubble baby ;) )

*hugs you all*

Hanging in there.


Hi

A couple of my posts have not appeared on here, just wondering what is happening.

Might it because I did not click on the link for facebook? I'm not on facebook!!

Sandie

Ha!

I have -another- one for you.

My dietician (trying to help calm my IBS) screened me for something yesterday that can, apparently, also cause the head and tummy symptoms I have.

Chronic Hyperventilation Syndrome

It -also- causes tingling in extremities so it -might- be something to consider if you suffer from that symptom.

http://en.wikipedia.org/wiki/Hyperventilation_syndrome

It's not the breathing-into-a-bag type of hyperventilation but basically comes from using only the upper portion of your lungs.

Anyway, I am now off to ANOTHER Physio who can apparently diagnose this.

I just wanted to share in the hopes that it helps someone :)

*hugs*

Hi Sandie,

It doesn't have anything to do with Facebook: I've just been too busy over the last few days to manually approve comments. (People who sign in using Facebook, Livejournal, TypeKey or OpenID have their comments automatically approved. So far the spammers don't seem to be doing this, thank goodness.)

Rich


Hi Rich

Thanks for your reply. I'm not complaining (really I'm not!). I appreciate fully that you are a very busy person and you are also a very special person for doing all this for us. This site has been brilliant for me over the years as it has for so many people.

Thanks again.

Sandie


Hi everyone, I just wanted to update you about my progress. I posted about a month ago. I do feel better overall, definitely less dizzy & my numbness on my left side of the head & arm is gone.

I do still feel tired, a little spaced out & having difficulty concentrating. Tingling in my left foot is still there as well. Its been about 2months for me since I came down with this & Im thankful that there is a progress, However Im wondering do you guys experience above symptoms even as you are getting better? I have my bad days & good days, during good days I actually feel almost recovered, during bad days brain fog, spacey feeling comes back & I get really discouraged. Any thoughts? Thanks everyone for your support, even though I don't post often I do read all of your posts & it definitely helps. Thanks Katie as well for checking back & making us feel better! Natasha :o)


Hi Natasha

Yes, this is a normal progress for Labs. You will have good days and bad days. Your good periods will get longer and longer til you hardly notice it at all. You will feel rather like its one step forwards and two back but things will improve. It almost comes up all of a sudden and you'll say "hey, I haven't felt really bad in over a week now!". Hopefully, you will recover well from this, most people do.

Take care

Sandie x


Im still having ups and downs, feet tingle/burn from time to time, constant pressure in my ears, pressure in the left side of my face, slight rocking sensation and pressure in the back of my head. But even though I still experience these symptoms I feel there is improvement in my condition, its just very minimal and not something you notice day to day but more like week to week. Im just trying to relax and not worry about my symptoms to much, might drop in to my GP in week or so and tell him how I have been going.

DC


Tanya..

My god woman, you're so funny. You're attitude is pretty damm good irrespective of what weird and wonderful diagnosis you get! As for coldsores I've never had one in my life and I've also suffered from migraines since I was 13. I tried the no coffee,chocolate,cheese and eggs thing and it made no difference whatsoever, I now eat all of the above quite regularly and haven't had a migraine since I got over the labs. I also don't have periods. I was pescribed depo years ago to combat anaemia, so I've come to the conclusion I don't suffer from PMT, I'm just naturally a bit bad tempered :)

Sandie... I so agree with you when it comes to the subject of anti-depressents. I passionately believe taking them just stores up more trouble for the future, hiding your symptoms and emotions is not a good way to go forward. Everybody If you can. Face it head - on, everytime. What you said about you're friend and the NHS hospital and seeing the same chap when they went private, Spectacular:) Anyway... Hope you're doing well?

Natasha... Nice to hear from you. It's quite normal to get the weird symptoms one day and not the next as you are starting to recover. It's such a strange illness, unlike anything else! And I suppose that means anything goes:) Complete return of your concentration is probably the last thing to come back (and also in my case jumpy-eyes) My memory took a while and even after all my dizziness had left I still felt somewhat... 'Zombified' For want of a proper word. Just you hang on in there. You will beat it :)

Laura P ... I've got my fingers crossed about your hearing sweetie X

Lots of love everyone

Katie XXX

Ha, Katie, you do make me smile!!

I've had cold sores since I was a child. I used to get migraines (and thought I didn't anymore as my head doesn't hurt, but have since learned that you don't need pain to have a migraine. Go figure). I don't have PMT, as I mentioned, because I, too, was on Depo.

I'm allergic to Citrus and Cheese (milk) so I cut out Chinese (MSG) and I cut out chocolate (I was having Chocolate Soya milk every day in my coffee, so it really was too much anyway) and later in the week, when I have a couple of days to "recover" I am coming off coffee. Please pray for my husband, he still hasn't quite grasped that I am not a morning person even WITH coffee, poor man. That covers "The Five Cs" of Migraines so a couple of weeks from the final cut, I'll re-assess my symptoms.

Tomorrow I go for Balance Testing and I am NOT looking forward to it. Have any of you had it? From what I understand they put cold and warm water into each ear to make me dizzy on purpose and then gauge how I perform (walk, etc). I sense a massive case of Vomit-osis tomorrow :( I'll be sure to come back and let you know if it was, indeed, as bad as I had feared. I'm also having a blood test tomorrow to, apparently, determine if there is an auto-immune cause to my Labs.

Very "interesting" times, these!

I wish you all well and hope you're days are full of smiles!

*hugs* Tanya


Hi Tanya

I have had a few tests at the ENT namely the goggle test where you watch the red dot on the screen, the pressure test where they squirt air into your ears to measure the pressure and a hearing test. All were normal for me. The caloric tests I would not have because I was scared as hell. At the time I was very dizzy and was suffering from anxiety so it took me all my inner strength to actually go to the hospital so there was no way I was letting them make me more dizzy. One of the nurses did get a bit shirty with me because I refused but the other nurse was lovely and she said that whether I did the test or did not do the test the outcome would be the same - VRT exercises, so I decided not to go ahead with it. They can tell whether you go dizzy or not if there is damage there. There are lots of other tests that can be done to determine what is wrong but I was never offered these. I know lots of people who have had it done and were ok with it so you go for it girl!!

Be interested to see what this blood test is, keep us posted on that one.

Loads of luck with the tests.

Sandie


Hi Everyone - Tanya, I had the ENG testing this past Saturday - it's about 1 1/2 hours, and the part where they put hot and cold air in your ear is not fun. I was spinning horribly and thought I was going to come off the table - luckily, my doctor that did all of this was wonderful and his bedside manner was great, otherwise, that would have been the longest 1 1/2 hours of my life! I took my mom with me, I would suggest you taking someone also - it helps to have the support there. I haven't heard the results yet, I'm hoping they call me today. So this week, not really having much dizziness, but horrible pressure on the right side of my nose/eye, and ear. As soon as I hear my prognosis, I'll let you know!


Yippee!!!!

I have been to see my GP today and guess what - she actually agrees with my theories! A breakthrough at last, though I don't know where it is going to lead!

She said I seemed a little despondent, well excuse me, but I have suffered this junk for four years and yes I do get a 'little' despondent now and again, who wouldn't?

I told her that I thought I wasn't making a full recovery due to the fact that I had so many other things going on i.e. low ferritin, nasal swellings which could affect the inner ear and also impending menopause/hormone problems. She actually totally agreed with me and sympathised with my plight. I also told her that I did go on the messageboards on the internet and had done quite a bit of research so I knew what I was talking about and I also added that I know that this is not what doctors want to hear and she totally disagreed with me. She said, that by doing this it showed that I was keen to find out about what was happening to me and try and find ways to solve it. She asked what other people were saying and I told her it was pretty much the same as me, that GPs were not very sympathetic and ENT was a waste of time. She didn't even flinch! I suppose I was a little bit naughty saying that but what the hell!

Every other doctor has taken no notice of the fact my ferritin levels were so low though I do take iron pills to try and get them up. She was not happy at all that they were so low and has made it her mission (supposedly) to get me sorted.

It is so nice to have someone actually on your side and not to come away thinking that they couldn't care less.

I also said to her "I challenge you to live for a day like I live, and you will see what it is like". I told her that my life is totally ruled by this illness and that my little girl has been on holiday from school these last two weeks and has not been anywhere because of me feeling so poorly. I think I did get through to her!

Time will tell.

Heather - you poor thing. Now you know why I refused it! Hopefully you will get some answers, though I wouldn't hold my breath!

Take care

Sandie x

Sandie, that's good news that your GP is ready to take action! I hope you (finally) get the answers you need.

Heather, I hadn't been told about bringing someone with me though I wish I had been told that by the doctors or even the hospital where the test was booked.

In any event, I was one of the lucky ones and suffered very little with the caloric test. The technician told me I have a vestibular weakness in my right ear, which accounts for the dizziness. That's a relief, really. To know it's all in my head rather than being "all in my head" *laughs* sorry.

After the "Follow the pretty red light" Test (I'm sure there's a technical name for it, but that's what I call it) the technician asked me if I suffer from migraines. I told her I hadn't thought I did but as she was the second person to ask me recently, I was beginning to think I might. Apparently, I have nystagmus (groovy eyeball shaking) consistent with migraine and she was confident (though couldn't diagnose) that it's only relevant with migraines.

So, apparently, according to two different specialists lately; I have migraines without headache. Didn't think it was possible, but it seems it is, according to the vast and varied interwebs.

I bought Migraines for Dummies and plan to study it deeply. I remain sceptical but have, just today, cut out the final of the Five Cs of Migraine (caffeine) and will see if I get any relief.

I will call my ENT on Monday for an appointment to discuss the results of today's test (and blood test) and will let you all know how I do.

All the best!

*hugs* Tanya

Hi Tanya, In all my reading about migraines on the internet I have seen a book "Heal your Headache" by Eric Bucholz that a lot of people say is very helpful. I have been meaning to try to get hold of it myself as I think migraines have something to do with me as well.

I have been going okay, went away for a little beach holiday over Easter with great friends which I really enjoyed. I am not really dizzy very much any more, but have been having little 'spells' where I have pressure in my head or my whole head tingles, or I feel like I'm having a hot flush... can anyone relate to this? (by the way I have had my hormones tested and they are normal) I have really been functioning quite normally, but these strange things keep happening and bothering me! I guess I have to keep remembering that I have improved so much over the past few months and try not to worry. Hope everyone is having a good day. Cathy


Cathy, I can relate to the head pressure and spells, my dizziness is mostly gone but when I get that head and sinus pressure I have these split second spells that fell like a rush to the head, My balance is still off as well, but its slowly getting better, actually very slowly. Next week I might get my GP to refer me to an ENT for some tests, Cathy do you still get burning and tingling skin, I still get it in random place mostly my arms and legs.

DC


Hi everyone, I see one of my posts didn't make it, but that's ok. I was watching HOUSE yet again this week and they ran that ear test on a patient - pouring cold water into the ear canal. The doctor said it will either have no effect other than being uncomfortable, OR you'll have the dizzy symptoms. The patient promptly responded by vomiting on the doctor. I laughed so hard! Because that is how it is! It can be that sudden!

Fortunately, (I've hit the 5 month marker) I'm really starting to feel better. I've been taking the iron tablets religiously, and sudafed on/off, but really....I'm feeling better! I have way more energy than I've had in awhile and my head does feel clearer. I'm starting to feel more creative again with my sewing also. KNOCK ON WOOD - or my head LOL I've been going to bed at an early hour and I added a blanket to my bedding. I've been able to sleep 6-9 hours each night straight through which is a blessing! The sleep patterns alone help so much with my health. There is light at the end of the tunnel! Hang in there! Laura P

Hey guys! How is everyone feeling? Hopefully some improvement. Things are still getting better each day for me and I am so thankful. I would say that I am about 90-95% on most days and I am looking forward to the day when I am 100% again. I was curious if anyone had flown since having this illness? And if so how did it affect or did it at all? I have a trip planned in about 3 weeks and I am supposed to be flying and I am a little nervous about it. My ENT told me it should be fine as long as I use some Afrin nasal spray before getting on the plane to fight against the pressure. I hope this is accurate. I just don't want to have come this far to only trigger something and be right back to square one. If anyone has any advice I would greatly appreciate it. Thanks and have a good day.

Laura

Hi Laura, I have flown several times since I have had this and haven't had any trouble. I think there are several people who have posted on here that have said the same thing. Hopefully you should be fine too!

Cathy


Update - I went to my GP today and he said I have acute labyrinthitis and sinusitis, he basically said as long as Im making progress thats all that matters and there is no need to see an ENT as Im getting better. He did suggest Zyrtec and or Sudafed to help with the congestion and pressure, he stated there is really no set time for recovery and everybody is different, in regards to the sensations of burning and tingling, he put it down to anxiety and hyperventilating.


I've been using sudafed and I think it helped a lot! Laura P


OK Im at the 4month stage and feeling not too bad, went to the shopping centre looking around under the bright fluorescent lights and felt a little off balance and swimy in my head, this also brought about more pressure in my ears. Anyone else feel this way, man the progress is slow.

DC


Hi everyone

Seems a little quiet on here at the moment, where is everyone! Hopefully you have all recovered and moved on!

DC - yes this is entirely normal with Labs. Supermarkets, anywhere where there is noise, lots of movement and bright lights will make you feel unsteady. Don't forget this virus has damaged your inner ear and and it is therefore sending all these dodgy signals to your brain hence the confusion in there!

Katie - where are you - could do with some more of your stories! Hope you are well!

My ears are feeling a little blocked at the moment. This is what happens every year, the pollen season comes and I suffer allergies and then this brings on the dizziness and balance problems. I don't suffer hugely from allergies but it doesn't take much to set me off!

Take care

Sandie xx


Hi all I think I'm actually having a discharge from my right ear now. It seems to be crusty all of the time. I wonder if I've damaged the ear drum?

Still have the dizzies occasionally, usually when I need to bend over for some reason. That is tolerable. Labs is improving, but afraid I've lost a job anyway. The one part time position I had with he costume designer. Long story and I'm not really sad about it. His stress added to my physical stress. Still have 2 other part time jobs which I love!

Laura P


Hi Sandie...

Doing just fine sweetie. I'm a month into my pastry job at a 5 star hotel and I'm now offically 'Katie queen of cake' I'd better watch it though or my size 10 figure will double pretty quickly :) All I do all day is make ice-cream,cakes and fight with other chefs - quite entertaining really. I'd forgotten just how stroppy we are supposed to be :)

Nothing partically funny has been happening. Boo hoo to that. Although last week a disgruntled dog walker tied a 'poo bag' to my neighbours car. Right on the windscreen wiper. I hope they saw it before they turned them on. That's all I can say :)

So what's your latest? How are the dreaded allergies behaving? Can we not persuade you on to facebook? Rich, El, Tanya and both the lauras are on there:)

Anyway hope you are well honey.

Angela.... What's your news?

Lots of love

Katie XXX


Hi Katie

I am still no further forward, still living with this thing, I still dont understand whats happening to me. Got an appointment tomorrow at hospital to get a Spinal Lumber Puncture done, terrified I am!! The Neurologist started me on new meds last month Actezolomide, I lasted a week, could not feel my face, hands or feet, numb, pins and needles feeling, had shooting nerve pain down both my legs, was completely out of it too. My GP told me to come off them, So back to square one!! Neurologist wants me to try other tablets now. I feel like I am at the end of my tether now. The Neurologist thinks I have cerebellar ataxia!! He Thinks?? So after being diagnosed with Labs for a year and 4 months they now think its this, I dont know what to think, I just hope this Lumber Puncture shows up something so I know what I am dealing with. Feel like I am going mad now. Send me some cake please, I love cake! Let me know what hotel your working in and I will pop in for some cake sometime? I will let you know how I get on tomorrow.

Love Angela


Hi Katie

Lovely to hear from you! Glad you seem to be enjoying your job. My daughter's ex-boyfriend is a chef. What a nutter! Working practically 24/7 so not a lot of time for her. Strange personality that man! She loved him while it lasted but he wouldn't teach her to cook! Don't blame him coz she's a nutter as well!

Size 10, mmm I remember the days - lol! Just have a few kids that'll put paid to that. I remember the first time I met my husband's mother - 25 years ago - I was a size 10 then and cheeky woman was sitting there as big as you like and asked me if I had any old clothes for her! She was serious! She must have been a size 20 then! It was so funny and we've laughed about it for years! Strange how people see themselves isn't it.

I'll be up in Glasgow in October - coming up to see Green Day!!! Can't wait. I haven't been to Glasgow before.

I'm much the same, haven't really improved much. Due for my monthlies and I am feeling really off. About to book a holiday to Paris via Eurostar and not sure how I am going to be with that. I can potter about my daily life quite happily but the thought of going away anywhere scares me. I have had two holidays in Scotland ruined because of this crap over the last few years. The allergies make it so much worse for me and you can't really get away from them. I went shopping in an indoor centre last night and only lasted less than an hour. My balance and my head just went, I just had to get outta there.

Angela, good luck with the lumbar puncture. I really feel for you. What's making them think it's cerebellar ataxia? That sounds pretty serious and I really hope it is not that. What symptoms do you have now.

Have you improved over the last year, are your symptoms constant?

Take care

SANDIE XX

Hi everyone, Good to see lots more posts on here - it's been very quiet lately! Angela - good luck with the lumbar puncture - thinking of you. How is everyone going? Ruth? Tanya? DC?

My progress is that the dizziness/imbalance seems to have improved quite a lot, but I have been having these spells that I think might be panic attacks. It's a feeling that comes over me that something is seriously wrong with my body and that if it gets any worse I will have to call an ambulance. I'm fairly sure there's no dizziness involved. I had one last Friday and ended up calling my husband to come home from work and couldn't get my daughter to school... I have read since that labyrinthitis can be a direct cause of panic disorder and my neurologist said that the brain is getting dodgy signals from the inner ear and sends the body into panic mode so it does seem to fit. I wonder if this could be some residual thing left by the labs or whatever vestibular issue I have? Can anyone relate to this?

Anyway, I my GP is very understanding and supportive so at least I feel that I have someone to go to who will help.

DC - I read about something called Benign Fasciculation syndrome that I wonder is possibly the cause of the tingling/burning that we have been complaining of? It seems to make sense to me. I must say that mine has eased off lately. Just thought I'd mention it to see what you thought.

Hope everyone is having a good day, take care.

Cathy


Cathy - my burning tingling has eased off, very minor detail now. Balance and dizziness is gradually improving and the pressure in my nose and back of head has gradually gone away. The only thing that hasn't completely gone is the pressure in the left side of my cheek,jaw and temple area, my GP said its connected to Labs and my acupuncturist thinks that is the affected side. Who really knows as long as I continue to get better Im happy.

Cathy - panic and axiety is a symptom of Labyrinthitis and I believe all that burning and tingling was due to panic and anxiety caused by inner ear dysfunction, hang in there Cathy, It sounds like we are slowing getting there, there is light at the end of the tunnel.

DC


Hi Cathy

Yes - anxiety and panic attacks go hand in hand with Labyrinthitis. Apparently the nerves that control your anxiety/panic levels are very close to the inner ear.

I suffered anxiety for a few months though never on a massive scale and I have never had a panic attack. I think you might be suffering anxiety. I used to get this weird feeling which would come over the top half of my body. You feel like you want to run somewhere but every time it happened to me I was in my 'safe' place, at home! You feel scared and afraid that something horrible is happening to your body, it truly is awful. Panic attacks are very much worse, people think they are actually having a heart attack when these happen as you can hardly breathe. The main thing for you Cathy during these spells is to concentrate on keeping calm and don't get upset or that will make them worse. Breathe deeply and slowly, this helps a lot. Take longer to exhale as you do to inhale. Mine only lasted for a couple of months and I didn't have that many but they do go away. This was four years ago during my first attack of Labs and it has never come back.

Take care

Sandie x


I don't feel entirely comfortable posting to this site as I've only had VL for about 6 weeks, and so many of you have been dealing with these issues a LOT longer than me. I really feel for all of you and hope the best for everyone. You are all very courageous but not a lot of people can see that as they don't know what it feels like.

My situation: I had the flu in April, it was very mild, my two kids were way worse than me, it is like this every year! Just as I was getting better, it started to get worse again with the added feeling that things were off balance. One morning I got up and couldn't walk more than about 5 meters without feeling like I would pass out. I felt a distinct pull to the left or down at times. This freaked me out and I figured if it got any worse I'd have to go to the ER. We were supposed to go on a flight the next day for a spring vacation and I just could not imagine how I would walk thru the airport, so we cancelled the trip. So that was the worst day. No true vertigo, no bed spins, no vomiting. Pretty lucky I can see from some of these posts. I did have a day of mild vertigo about a week before the flu hit me and now I wonder if that was the true beginning of this infection.

I made an appointment with my GP for about 10 days later. By this time I had figured out from the internet that I most likely had viral labyrinthitis, but I wanted a blood test to make sure nothing really weird was going on. My doctor said "yeah, sounds like an inner ear infection" and wasn't that concerned since I didn't have any ear pain. I also felt at this time that I was well on my way to recovery.

At the peak for two or three days I had very loud tinnitus which made it hard to fall asleep, and that burning/tingling feeling over parts of your body which I believe is your nerve endings being inflammed or a systemic immune response. I had similar sensations about 6 years ago after a bad virus.

It got better over a week. I had a lot of the brain-fog, fatigue, tinnitus and walking like looking at the world thru a hand-held camera. No hearing problem, actually more sensitive to loud noises. Also a constant low grade fever (very low but very much always there), mild sore throat that came and went, and a flare up of what appears to be rosacea on my face. I don't have lupus and it doesn't really look like a lupus rash. It went down onto my neck a bit. Anyway, during all this time I still carried on and did the grocery shopping no problem even though I'd feel a little sick and off balance going round corners, and have to rest a lot when I got home. I am truly lucky as I am not working right now and can take my time and just focus on looking after the kids.

I even jogged a few times (I used to run a lot) and it didn't feel that bad during the run, but afterwards I would feel like I was going to faint. Horrible feeling. So then I thought I would just do a short hike one day. One mile and I got weak, faint and shaky and had to turn around. Too much for my vestibular nerves to handle. This was upsetting. Then last week I had a migraine and wow, it was all bad again. I went to the store and had to leave my cart there as I was so wobbly it set off a panic attack. I went out and rested in my car for 5 minutes then went back in and somehow managed to checkout without incident even though I felt so weak and shaky. Then yesterday I went into my kid's school for a small function, and as I was walking down the corridor I felt the wobblies come on, great! Then I went to the office to sign-in and saw a big puddle of pink vomit from some kid outside the door! That totally sent my panic button off as swine flu is in our school district now, and it had been on my mind all morning. Great. I made it to her classroom and just sat there for 5 minutes unable to socialize with anyone. I went outside for fresh air and it was hard just standing there feeling like passing out the whole time.

Basically I was doing fine before coping with the wobblies, but now I am having panic attacks whenever I don't feel steady. I posted this to try and get feedback on how to handle it. I did have panic attacks 15 years ago and got over them all on my own after a few months so I know this is temporary, but since there is a real physical component to this faint feeling I don't know how to tackle them this time. Any suggestions on how to get thru this? I really need to get out there and do the shopping. My dizziness is so mild compared to some of you and it is annoying that it is affecting my resolve to do normal things. I hope that since my VL seems to be a mild case that I will be one of those lucky ones done with this stuff in 3 months.

In many ways I am so much better than three weeks ago, brain fog and fatigue have lifted, I actually woke up semi-alert this morning and not dreading getting out of bed. And my low grade fever has mostly been gone the past week. But in other ways I feel worse. The wobblies are still there just as much. Is this left over nerve damage or residual inflammation? The tinnitus is still there. And now I have the panic issue which I did not have 3 weeks ago.

Any little suggestions are welcome!

I -knew- my ears were burning!

Hi, all!

I actually had my re-consultation (after the tests) with the Otolaryngologist (I can't pronounce that name for love nor money!).

The results of the caloric tests were as I had expected; I have a vestibular weakness in my right ear. What I had taken from the tests wasn't completely accurate, however... when the technician has said "migraines" I had taken that almost as gospel (Finally! An answer I can do something about!). But, as it turns out, the ENT (OK, I know, but it's shorter and easier to say!) thinks that migraines might not be my issue having looked at my blood tests.

As a reminder, the ENT had sent me for blood work to make sure that there wasn't any immune response reason for my Labs. There isn't. (I'm glad about that as it's one less worry, but disappointed as it's also one step farther from finding answers).

My sed rate is slightly elevated but that only means there is something inflamed/there's some inflammation somewhere. Well, gee. Thanks. That means nothing if we don't know what, where or why.

Also, my cholesterol level was very mildly elevated (but I have just finished a trial low-fibre diet as per my dietician and gastro doc so that was easy to explain and I'm back on low fibre again - thankfully!).

But. The thing that surprised us all was my thyroid and thyroid stimulation results.

According to the results my "Thyroid Stimulating Hormone" is slightly elevated while my "Free Thyroxine" level is slightly low.

The ENT thinks that this could be because my body is telling my pituitary gland that I don't have enough thyroxine so it's over-producing the stimulating hormone.

So, now... Off to a -professor- (no less) Endocrinologist and I'm headed for an MRI of my head (finally! I am really getting to the point that I am worrying about brain damage when I think of the cognitive ability I've lost as well as the inability to speak properly at times) and my ears.

He also recommended that I proceed with physical therapy. The physical therapy that I had dismissed because the therapist told me it was migraines and until I stopped them I wasn't going to see much relief from the therapy. Sigh.

So, that's my "deal".

We run away at the end of next week to bless our union in front of friends and family so all of the stress that I've put myself under dealing with that will be gone-zo! Woot! I can't wait to just sit and enjoy all of the efforts of everyone instead of worrying about all of the efforts!

Sending hugs and healing thoughts to you all!

~T

P.S. I was told that the vestibular weakness in my ear may or may not repair itself. it's a crapshoot.


Hi KC

All of the symptoms you describe are totally typical of Labs. In most cases (not all) Labs does hit after an upper respiratory tract infection or something like the flu as it did with me (and you). I was like you in the early days in the sense that I had no hearing loss, was very sensitive to loud noises etc and had dizziness and balance problems. I have also never vomited but have felt nausea from time to time when I am really dizzy.

You are doing well in that you are not letting it get the better of you. Keep trying to do stuff and you will beat this thing. At the moment your brain will be trying to make sense of the dodgy signals it is getting from your inner ear and this is where the dizziness and feelings of falling over come from. The Labs virus will now have left your body, it is the damage it has left behind that it the problem.

For me, I have had this for 4 years now and have had periods where I have felt ok. I have allergies and have very low iron stores and also probably about to enter menopause sometime soon (I am 48), and this is why (I think )I am having ongoing symptoms.

Don't worry too much you will probably get over this within 6 months or less and feel great again!

Don't be scared of it. I know that's hard to do as when it starts to happen you really do feel like you cannot cope and nobody can really see what is happening to you as you look normal, but in four years I have never fallen over though sometimes I can't walk in a straight line!

Do you have full blown panic attacks or just anxiety? They are both also linked to Labs as the nerves which control your anxiety levels are close to the inner ear.

With me, the dizziness/vertigo came first and the wobblies where I felt like I was falling over all the time came about 6/8 weeks into the illness. This lasted a couple of months and then I was ok for a few months with no symptoms whatsoever. I'm one of the unlucky ones in that sense (that I keep relapsing). But, you know, you still can have a decent quality of life and it's not life threatening. You just have to keep positive and keep trying to do stuff as long as you don't overdo it you'll be OK. And don't beat yourself up if you can't do stuff - that's ok too.

Tanya - yours is the same story I have heard so many times over the last few years. Loads and loads of tests for one thing and another and no definitive results. Like banging your head off a brick wall isn't it?

A friend of mine has thyroid trouble and she put on loads of weight, she went on some type of drug and lost all the weight. But it can cause loads of symptoms as can just about everything else!

AND, why do they even bother to look for this vestibular weakness in the ear if all they are going to say is 'oh, well it may cure itself or it may not'. It's mad!!!

Never mind Tanya,I am sure you will get there one day! What are your symptoms now, are you feeling any better.

I hope your blessing goes well next week. Have you designed another beautiful outfit?

Take care

Sandie xx


Sandie - You crack me up! I love reading your posts. Anyway, I'm in menopause - lovely - Add night (and some day) sweats to all of our LABS' symptoms with an occasional panic attack and that's my story! Sweating through my clothes........... Couldn't get any better.

I'm feeling pretty good really. I've been so much more relaxed since the one part time job ended. However, I've noticed that whenever I'm reaching and looking straight above me, I get the dizzies still. I breathe through it and pause. Customers must think I'm saying a prayer or something. I don't dare say anything about this at the greenhouse job since I may be up and down ladders etc. I don't want them to think I'm incapable. If it does flare up again I'll deal with it.

Things could be much worse. I recently had a "bleacher friend", (we sat together at wrestling matches since our sons were on the same school team) just die from ALS. Very sad, and we were the same age! So - I can live with the LABS!!

Don't mean to be morbid but it's Spring and the flowers are coming out and life really is good!

Happy Mother's Day!

Laura P


Hello, I am not sure if this is what I have or not. I rode the Gravitron at a carnival a few days ago and am still getting a lot of dizzy spells. I constantly feel like I am going to fall over or I am running into walls.

I am calling my dr. on Monday just to be sure. But it does sound like what I may have.

Hi Sandie and DC, Thanks for your support and encouragement. I really appreciate it.

KC -My main issue at the moment is anxiety/panic so I can definitely relate to your post. The way that I am trying to deal with it is just to tell myself that this is normal for this virus/disorder. Every time it happens it passes within a few minutes so I guess the more it happens the more I know it will pass! Hopefully that means that the anxiety will happen less... For what its worth I have heard that magnesium supplements are meant to be good for anxiety/panic.

I can also relate to having this thing and also having kids to look after - I have often had dizzy or anxious spells when I am out with my girls which I find more stressful than if it was just me.

Tanya - as we have discussed before I understand your frustration! Thinking of you as this continues.

My latest is that I went to my vestibular rehabilitation therapist on Friday - she works only with inner ear patients and really does seem to know what she is talking about, unlike many others! and didn't think that I have Menieres either. She said it is very common for people to have labs and take several months to recover. So I feel quite hopeful after seeing her.

Hope everyone has a good week Cathy


Thanks for your comments Sandie and Cathy. I tried to do a quick trip into the grocery store on Friday. I made it as far as the flower department, got unbalanced and headed back out. I'd say I am not having a full blown panic attack, but it did get quite intense last week at the grocery store. I've probably only had a few really intense panic attacks in my lifetime. Usually it starts to build and I can either distract myself or talk myself down. I go for short walks around the neighbourhood and when I start feeling weird and wobbly I just try to accept it as "normal" for now, and not something to worry about.

I've decided not to feel bad asking my DH to help with the shopping. I'll get there someday and I need to not push it right now. I had a really horrible day on Saturday. I was feeling bad in my head on Friday and then it became a pretty intense mirgraine on Saturday. Partly hormones, partly turbulent weather, compounded with the labs, it felt like the worst migraine ever. I was very upset all day thinking I've made no progress at all in 6 weeks, but really it was just a bad day. The next day I was much better and today even better.

I've decided to start a diary noting how I feel each day. I'm going to go back over the last 6 weeks and fill in that stuff too. Then I'll be able to look back occasionally and see some progress. I do feel much better in the evenings, like many of you. Some good patches where I reach about 95% I'd say.

I noticed something unusual yesterday. For years watching fast moving video games with the background rotating used to make me dizzy...this was pre-Labs I'm talking about. Movies with lots of fast-moving action as well. I'd always have to shut my eyes. I was watching my son play a video game yesterday, and it didn't bother me at all! Weird eh? I have read that many of you found watching TV impossible. It doesn't bother me at all now. I figure that my head has decided not to link my visual input with my motion detectors anymore, in an attempt to make me feel less dizzy, or simply because they sometimes do not synch. I also noticed a few weeks ago that my brain was trying to ignore inputs from my left periphery, especially if I was moving in a car. Taking in that visual stuff would make me feel uneasy. And then a week later I almost ran over a woman that had walked out into the road on my left side. I was looking right to see if the traffic was cleared, and when I pulled out to turn left, there she was about two feet away from my car! Appeared out of nowhere. I felt really bad. But what was she thinking crossing the street not at an intersection??

Have a good week everyone.


Well folks, I experienced a full blown panic attack two nights ago. It happened after probably my best day yet since this started. I couldn't fall asleep at all and by 4am got into such a state as I've never experienced before. Felt like my life was over, like I was going crazy. I took some valium that was left over from a dental appointment my son had two years ago and managed to sleep about 1.5 hours later that day. The anxiety was still cursing through my body after I awoke. I went to my GP this morning and filled out the questionnairs for both depression and anxiety. I am normal for depression (I wasn't sure myself) and moderate for anxiety and she is giving me some Xanax to take so that I can avoid another panic attack. She wants me back in a few weeks to make sure I am not taking too much Xanax as it can get addictive she says. I told her that it has been 7 weeks with this inner ear problem and she might send me on for more testing if I don't start improving (which I know will be a waste of time). I told her about feeling like fainting when I overdo something and she seemed surprised. I suppose my fear in stores is that I will faint and crack my head. Isn't that a classic sign of inner ear inflammation??

Well at least I will have the Xanax soon to keep in my purse and hopefully I can start going into stores again and living more normally. I have no problem with the balance issue, it seems pretty minor now, it is this anxiety that is stressing me out. And also not knowing how long I'm going to be feeling this way.

Hugs to everyone that needs them.


KC, I had the feeling like I was going to faint to if I over exerted myself in the first 2-8 weeks, Im into my 5th month now and I am getting there one day at a time, I think 2 more months and I'll feel close to normal (I hope). This has been the biggest test of mental strength I have ever had to face, we will overcome this and be stronger when we do.

DC


Good everyone -

I'm ending my 6th month and all of a sudden I've realized that I'm having fewer and fewer dizzy spells! I'm having more regular days than dizzy days. It's odd though, because the illness has become part of my routine. I almost expect being dizzy.......

So I'm glad that it's fading - hopefully

Laura P


Laura, I feel the same way, dizziness is slowly going and balance seems to be getting better, still have pressure in my face especially right behind my nose. It really is a slow process, I just want to be 100% again.

DC


Hello every1

I Havent been on here in a coupla months but i thought id give an update as to whats happening to me.

I was hit with labs around a year ago. I had recovered to around 95% by December/January time. Febuary 23rd, after driving around for a coupla hours I got up and suddenly felt a profound and comprehensive weakness from my hips down accompanied with tingling and pins and needles in mny legs. I thought it could be a relapse of labs except i wasnt dizzy. Since then I have had weakness in my legs although I have recovered slightly. My neuro thinks its some kind of post viral syndrome and not MS. I had a MRI scan done over 2 weeks ago and havent heard anything back...is this a good or bad...I know many of you have had MRI scans..would they have got back to my quickly had they found say a lesion or something?

Im glad that the dizzyness is over...I still get some lightheaded feelings now and again. But my main concern is the weakness in my legs, I mean i was staggering all over the place when it happened. Even now I can feel it in my hips and thighs and my legs will start shaking if I stand on the spot for more than 10 mins.

I have read on some websites how Labs can be one of the initial manifestations of MS. Anyone know if theres any truth to this?

Im feeling anxious, frustrated and scared. :-(.

Hope you are all well.

TC.


KAM

Not to be too bossy, but try contacting the doctor and nicely demanding the results of the MRI.

Bureaucratic details can be so annoying sometimes.

I had a breast exam scare once with a minor biopsy, which wasn't minor to me. Since it was all clear they didn't feel the urgency to tell me! I showed up unexpectedly at my doctor's office asking for the results. She apologized...... I'm a naturally anxious person anyway, so these little triggers make me nervous.

Interestingly, and I'm not sure if it is related, but once I confirmed that I would not be returning to the costume shop job, which was very stressful, I started feeling better! Stress for me is definitely a trigger for the Labs!

Laura P


Hi evryone...

Kam... I didn't get my MRI results back for a month. That's quite normal if there is nothing wrong. So it sounds like good news :) They check them immediately - even though they don't tell you that! You would've been called in straight away if there was anything obviously wrong. Don't scare the hell out of yourself with talk about MS. Alot of the symptoms are similar to labs and that's where it ends. I am sure if your doctors thought there was even the slightest possibility they would've tested you for it already. So, try and be positive.

Sandie... How the h*ll are you? Long time no chat girl. Been a bit busy lately - Shit excuse I know, have a nutter of a boss to contend with and I always seem to be short of time these days. How are you feeling overall? Has there been much improvement since we last spoke?

Angela.. Well sweetie, sorry it's taken me so long to write. How did the dreaded LP go? I hope it wasn't as bad a you feared? I had all my fingers and toes crossed and I thought about you that day. Have you had your results back from it? I think you've been so brave! I really hope you're doing better :)

Lots of love everyone

Katie XXX


Update -

OK I think Im finally seeing the light at the end of the tunnel, the last few days I have felt better then ever, Im at the 6 month mark now and I feel that Im winning. I still feel a little unsteady from time to time and still get a feeling of internal swaying but on a whole Im better. Still get pressure in my cheek and a tingling feeling right next to my nose but I have a feeling this is linked to my jaw which is constantly clicking, I also clench my teeth when I sleep.

DC

Everyone please feel free to give an update.


Hi Katie

I have been having a bit of a time of it again. Lumber Puncture was horrendous, It brought all my symptoms on 10 times worse, The severe headaches I got after it was unbearable, had to get the Emergency Doctor out, the back pain was just as bad, Was bedridden for 2 weeks, could not walk or talk again I was completly out of it. Doctor called the Neurologist from my house it has been pretty scary. Not had results back yet from it but they are convinced its the brain and that when they took Spinal Fluid out it has upset the brain bringing on my symptoms all that worse. The headaches were so severe I really thought my head was going to burst. Cried for 2 weeks non stop, it really has been hell! It has just been this week that I have really started to get over the worst. Back on my feet about the house again, Can get to the loo on my own without being carried. At least the weather has been good I have been sitting in my garden it definetly has made a difference, I am starting to think a wee bit more positive again after being so low. The worst mentally I have been I think through this whole 16 month nightmare!! They say this Cerebellar Ataxia probably started off with Labs, It can stem from a Virus!

Not had it 100% confirmed yet but the doctor and Neuro think its this Ataxia.

My symptoms have changed a bit, I cant read or watch television as my vision goes blurry and I feel the wierdness starting to happen, the heavy feeling around my eyes, the pains in my head and sensitivity around it, my eyes droop a bit and my speech slows right down. It feels like my eyeballs dont fit in their sockets, Wierd its really hard to explain to someone whats happening to me inside and very frustrating.

Dont really have a life at the moment, cant go out, cant read, cant watch tele, can only type on the computer a few words at a time then have to look away from the screen.

Thanks for thinking about me, I hope your still enjoying your new job. Have made a list of all the things I want to do when I am feeling a bit better. Your on my list to meet you and eat cake!

To everyone else on this site sending my love.

Take Care guys Angela x


And am still suffering from the swaying motion like a rocking horse!!

x


Hi Katie, glad to see you are still the same old Katie!!

Yes, I am still kicking about, not fully recovered but I am improving, at last! Nice to see you love your job - lol! I don't know - put someone in power and they turn into nutters, sounds a nice person your boss.

Hey, what do you think of this fantastic weather we have had lately (even in Scotland). It's great isn't it. I've been doing a lot of gardening, planting up my pots and stuff like that. And, my kids have been home from Uni. My daughter, who studies in Edinburgh, is off to New York until September doing this Camp America thing. My son, who studies at Oxford, is home at the moment but he is off on his travels to the South of France for a week and then on to Hong Kong for a month with his girlfriend. Lucky kids huh! Are you having a holiday this year Katie?

Angela, I feel for you so much. That Lumbar puncture sounds so painful. I really hope it is not this Ataxia thing you are talking about and that it is just Labs lingering on like it has for me. Try to be positive Angela, can I just ask if you have always constantly felt the imbalance or does it improve at times?

When I first got Labs, for months I could not watch TV, use the telephone, read a newspaper or magazine or even talk to people because it would bring the symptoms on so much worse. It was a very lonely 6 months I had and I also suffered slight anxiety (probably due to the fact that I thought I was dying). Using the loo was a nightmare for me as I would feel like I was falling off the toilet. The shower was HORRIFIC, because I could not keep my balance. I was living in a world where I could just not do anything and it is a viscious circle because you are worrying so much about what is actually wrong with you. The swaying motion you are feeling is also what I feel. I relapse every few months and it takes me months to feel steady again. This is a very scary feeling and is probably the worst for me. I can cope with the dizziness if it is not too bad i.e. I am not feeling the nausea etc with it but the balance - still scares the cr** out of me at times. Often it just hits me like a hammer and I just can't stand up.

Don't forget Angela - I have suffered from all this poop for over 4 years now and I accept the fact now that I am not actually going to die from it. I hope to god that you recover fully soon because I would not wish this on my worst enemy and would rather suffer physical pain than this, but try and be positive - chances are the Docs will not find anything from your lumbar puncture (fingers crossed), because let's be honest they know absolutely NOWT about Labs etc not even at the ENT!!

DC - just to say that I am glad you are feeling a lot better. Do you have trouble with your sinuses? I think this can make this thing worse and I am thinking now that this may be why I am still having symptoms so long after the initial Labs attack. I suffer from post nasal drip so I think this could be affecting my ears.

Anyway, take care everyone.

Sandie x


Hey Sandie

I dont always have the imbalance but sometimes it lasts for weeks then I have the odd day where it comes and goes.

Thanks for your support. Hugs to you.

Angela x


Sandie, Ive had alot of sinus issues since I got the labs, my doctor's diagnosis was Sinusitis and Labyrinthitis. Ive been doing acupuncture for about 3 months now and it has really helped with my balance and with my sinuses. My acupuncturists is a very smart man who knows alot about alternative healing and he really does put my mind at ease by telling me the power to heal is within all of us, we just have to activate it. He tells me to meditate twice daily, I have been a bit lazy lately but did notice when I was meditating daily that I felt really good mentally and physically, we really have to open our minds up to alternative healing especially when the doctors offer us no real help in terms of recovery. I have to constantly remind myself to stay positive, it really does make a difference, also say some positive affirmations everyday.

DC


Hi Angela

This is exactly the same as me, I get serious relapses with my balance and it takes me weeks/months to feel steady again and then every now and again in my 'better' periods, it will hit for a few hours at a time. Strange isn't it?

DC - yes, I do believe that positive thinking does help a lot with this illness. I think the more you think about it the more it manifests itself and you get really scared of it. But if you try and keep your mind occupied with other things and concentrate on the good things in life you will attain a good quality of life.

Take care everyone

Sandie x


Hi Angela

Well done doll. You made it through to the other side of the dreaded LP! Bravo :)God it sounds blo*dy awful. You've been through some time of it.

When you had your MRI scan done... I would have thought they would've found the ataxia. It's one the things they look for. If it is Cerebellar Ataxia you'll have to find out which type it is. Some are better to manage than others and I remember reading that Vitaimin E can be a factor in one sort and eating a gluten free diet can help with a another type. So I think it just depends. Isn't it crazy that a viral infection can cause so much trouble?

It is possible it is just labyrinthitis refusing to go away. It can go on for much longer than doctors will ever accept. We all know that or we wouldn't have ended up here :)

As for cake. You're on. Shall be there with bells on!

Hi Sandie.... Nice to hear from ya :) Still fighting this damm thing, but improving. Glad to hear it girl :)

As for my job. I could leave tomorrow without a second thought. My nutter of a boss has now shaved his head and looks likes GI Jane. I'm struggling even more to take him seriously.

I'm off to T in the park next month. we're going a day early this year so it means no shower for 5 days. Ermmm... Lovely. As for holidays and life in general have been thinking about jumping ship and moving to Bath or even going back to Uni. But yesterday my best mate through a spanner in the works... His flat is due to go up for sale soon and even in the current housing market stands to make a bit of money. He's asked me to scarper off round the world with him. He's looking for a beach bar in Thailand or the Caribbean and has offered me 30% of the profits for no risk. It's a pretty good offer! Lol :)

In the mean time I would quite like to go and do something peaceful for the Summer, like pick some fruit! ..... Who am I kidding that wouldn't be peaceful. I would just get prickles in my hands and fight with Polish people all day. Oh, who knows :)

What about you Sandie. You can't have the kids jet-setting all over the world and you're sat at home. Get down that travel agents! X

Lots of love to you both

Katie XXX


Im feeling better everyday, just getting one annoying symptom, at night I feel my calf muscles twitching/pulsating, it seems to be mainly in my left leg but also in the right from time to time. My thinking is that its just from my legs working harder then normal to compensate for my balance. Anyone else experiencing this???

DC


Angela - I really feel for you. I had an LP done 6 years ago and the damn hole they made just kept on leaking spinal fluid. I could have died from it. The procedure was done after an MRI that the doctor was sure showed no MS symptoms, so why he wanted to go ahead with an LP was beyond me. Anyway, I was completely bedridden for one week (sorry not as bad as your two weeks!) with horrible horrible migraine pain that I had to take vicodin for. Two trips to the ER during this time for a blood patch to stop the leak, since the first blood patch didn't work. After that I had a migraine for about another two weeks but at least I could get up and move about. So so sorry it made all your symptoms worse.

My update - I was taking the Xanax just a few times to deal with panic attacks but things just got worse and worse. I be fine during the day but awake in the middle of the night in a HUGE panic state, it felt like someone had hooked me up to a 12V battery during the night. I had no anxious thoughts going on at the time so I didn't understand it. I was sweating, rapid heart rate, huge, I mean huge body flush/ body burning up like I had a 105F fever, shakes, internal buzzing, tingling, you name it, ALL the physical symptoms of extreme anxiety. I could not get back to sleep because it was so uncomfortable. This all started after probably my best day ever with the labs - I was at 8.5 weeks and had one day where I did not notice any balance problems. So this chronic anxiety then stuck with me all day, I could only sleep about 1 or 2 hours a night, and after 2 or 3 days of this I became quite despondant because the Xanax did not seem to help at all and so I went to my GP.

She prescribed Lexapro, a SSRI. It immediately helped but I felt very weird on it....like it was working too well but at the same time making me really groggy. The second day on it I was almost vomiting. I stopped taking it since it was obviously toxic to me. But then the next day my anxiety shot thru the roof again, I got desperate and took just a very small dose of the Lexapro, thinking I was just very sensitive to the dose. Well what happened next is something very scary...I went into wild convulsions, psychosis and collapsed. My DH drove me to the ER and I ended up in a psych hospital for a week. Which was a very interesting experience in more ways than one. They put me on Ativan? and that immediately took away all my anxiety symptoms and body flushing. One night they gave me something specific for bi-polar (which I had not ever been diagnosed with, but it is possible as it runs in my family) and I had the same horrible body-burning/flush reaction to it. We next tried just Klonopin with some Ambien to get to sleep and I improved greatly each and every day. If only I could have had that at the beginning....none of this would have happened.

I feel pretty good now. Balance is still off but with the Klonopin (only taking 1 mg a day now) it doesn't upset me. I am seeing a therapist now too to help me with the panic attacks and anxiety. I do believe if I can get the right thought patterns going, I can help reverse the unbalance I have developed in my panic center in my brain.

I am going to chill this summer, not look for work until the fall and hopefully get anxiety free. I really felt at 8 weeks that I was only 4 to 8 weeks from being labs-free. Then this crap came upon me. But I know my mild labs symptoms are nothing compared to dealing with the extreme physically painful anxiety and depression I entered two weeks ago - which was precipitated by the labs. Kind of a vicious circle and I hope to break it. Interestly how many doctors didn't realize there is this connection between labs and anxiety. I printed off the wikipedia pages on labyrinthitis and highlighted the paragraphs on the anxiety connection to give to them. With the convulsions I was having I have to follow up with a neurologist, probably another MRI and EEG.

DC- glad to hear you are still improving. I get those muscle twitches too. But not really while on the sedative. I had those 6 years ago when I had some kind of mild encephalitis and they went away after about a month.

All in all I'm in a good place now and hope to wean off the klonopin once the labs goes away and my anxiety from the labs is under control.


Hi Everyone.

I'm just wondering if anyone has any advice for me. I'm waiting to see yet another doctor, but I feel like I'm losing confidence in them.

I've had labyrinthitis for almost a year now and am sick of it. My head isn't generally that dizzy really unless I move it about quickly, but I constantly feel slightly sick and feel like my head is getting squashed at the sides. However, I do get a bit wonky when in supermarkets, busy places etc. Sometimes things look like they're moving when I know they're not.

I've tried the exercises that seem to be popular (Cawthornes etc), but they don't really make me feel dizzy, so I don't know if they're actually worth doing. Some of the exercises say to do them on cushions, but I'm ok with that. However, if I'm not expecting a surface to be soft, that throws me and makes me feel ill.

Does anyone have any advice on what I should do? Should I keep doing them? Should I do things (like spin) to make me very dizzy in the hope that my head gets used to it? I really don't know what to do, but need to do something.

Thanks for any help.

Mark.


Mark, Get some Gingko, its really good for inner ear problems, I have also had a lot of success with acupuncture and massage. I found that forcing myself to exercise has really helped me, in the beginning I felt like I was on a boat swaying around, but with every workout I got a little bit better, Im now coming into my 7th month and I feel like Im getting there.

DC


Thanks for the info DC. I will go and get some today. I was having a look on Wikipedia for info on Ginkgo, and it says one of the side effects may be dizziness! Knowing my luck......

I've tried accupuncture, but that didn't really do anything for me. I will perservere with the exercises though.

Again, any further help is appreciated.

Thanks again.

Mark.


HI everyone - I haven't been on in awhile. Had the MRI, everything came back normal - seems to be the story on every test, which in some ways if frustrating.

DC, I'm about on the same timeframe as you (7 months) and I'm feeling better and can function, and I am also experiencing the muscle twitching. I have no idea what that is all about??

Mark, I can relate to you - my head feels like it's being squeezed also. I am not necessarily having the dizzy spells - just that contraction head feeling and I am still experiencing the pain on the side of my nose/cheek.

Hang in there - I think we are all making progress - unfortunately with this Labs, one symptom goes away another pops up!

Hi Mark, From what I understand the VRT exercises have to be tailored to an individual - it depends on what part of your inner ear has been damaged. Do you have a vestibular rehabilitation physio near you? I also found that the physio that I went to only dealt with inner ear patients and so was very knowledgeable compared to any other doctor I saw. Good luck! DC and Heather - I came across a website a while ago on Benign Fasciculation Syndrome which from my understanding is twitching, tingling, etc etc which can be caused by a virus. I haven't been diagnosed with this but reading about this has really helped my anxiety about these strange symptoms. Look it up and see what you think. I have been continuing to improve - have been doing some casual work and I think that being busier has really helped - I was spending way too much time in my own anxious company! I think it is about 8 months for me now and am feeling very close to normal. Tanya, KC - how are you going? Take care everyone Cathy


Hi Everyone, I wrote a long post a couple days ago detailing my latest experiences. I don't know if it just takes that long to get approved by Richard before posting or if I somehow didn't get it submitted correctly. Either way, I am doing fine now but have to, absolutely need to at the moment take anti-anxiety meds. It is a long story and maybe one I'd like to skip over. I am at 11.5 weeks and doing well, apart from the anxiety that flared up a few weeks ago, and got quite bad at one point. My balance is pretty good, my head feels mostly normal, and I am going to start light exercise again in a few days.

I just wanted to give extra hugs to Angela who went through that horrible lumbar puncture. I had one myself 6 years ago and was completed incapacitated by the procedure for a week with two more trips to the ER to fix the leaking spinal fluid. Angela honey, if you can survive two weeks of that, you are very very strong and I hope you get better and stronger each day.


Hi KC

Thank you for the hugs :-)I still have had no results back yet from the Lumber Puncture. I don't feel strong I feel like this thing is winning right now. I am exhausted its like a constant fight I am having with myself to try and be normal. Still not well enough to go anywhere. Stuck in the house, losing my sanity!! Tomorrows another day, Praying I wake with this thing gone!!

Love Angela


Hi

KC - me too - I've had a few of my posts go missing and they do take a while to type. Glad to hear that you are feeling better! The anxiety is just normal and that should soon pass too. Angela, have you had any results back yet?

Just a short post - see if it gets through.

Hope everyone is ok.

Sandie x


Hi Has anyone had vision problems "feels like vision is shaking and hard to focus its driving ne crazy" have a huge farm to run and getting more mad a this thing then worried


Jeff - My vision was really jumpy in the beginning but that got better with time.

Every week I feel I make a small step towards a full recovery, I function nearly normal at the moment but still feel a slight rocking and swaying. I just keep working out doing things that should make me feel off balance or dizzy, physical exercise seems to really make a difference in recovery.


Thanks my throat is swelled a bit the doctors say it is a viral infection I have had a ct scan which came back ok still have to get a MRI have been tested for everything Mono, lyme,Blood test perfect etc... Everything comes back OK If it wasent for my vision and a little dizzy with quick head movements I would feel good I guess I will have to wait it out. Its nice to talk to people who have had this or have this because some people just say "tough it out" but its really hard. It really affects your head its hard to think and concentrate some times. Thanks for the advice.


I've had this labs for about 7 months now, still feel a little unsteady on my feet but I am able to do most things, still get pressure behind my nose, but I have come a long way. How is everyone else going????


I'm at 3 months now. My main problem is anxiety but I'm working on that. I am down to 0.5 to 0.75 mg of Klonopin per day, so I am not as clumsy as before and can go out and do things again without having a panic attack. I have a nurse-practitioner trying different anti-anxiety meds on me that won't affect my already compromised balance. Too soon to say if they are working.

Jeff, this IS really hard, pat yourself on the back for getting on with life as best you can. No one can really see from the outside what is wrong so I feel like I don't receive much sympathy when I appear to be functioning normally most of the time.

Jeff - Sometimes my vision does that but rarily. My main problem is feeling off-balance when walking. I don't get any problems really with turning my head quickly. My tinnitus has gone down, in fact I hardly ever notice it now and I am hoping that is progress and not just an effect of the Klonopin. I do get occasional ear pain, mild, that I never had at the beginning, strange.

DC- when you say you can work out, does that include running or just lifting etc? I would really like to get back to running but the Klonopin for now makes me a bit clumsy...although at my current dose I could probably do it. I was up to running almost 4 miles every other day, broken up with walk breaks before I got hit with the anxiety thing (I found running to be not much more disconcerting than walking, so why not?). I hope to get back out there soon.


KC - I do a lot of calisthenics like pushups, pullups, squats etc etc, I also do a lot of Jump Rope training which initially made me very off balance, but now I feel much better after a session. Initially I had ear pain and pressure, now I get more of a burning feeling in my ear. It took me at least 2 months before I was able to work out again after I initially came down with this.


That is the hardest part its not like i am lying in a bed not being able to move. And people think if you seem normal you are ok. I would rather have a broken leg then this. My GP was very thorough he has tested me for strep throat,lyme disease, carbon monoxide poisoning, 5 CBC tests in 4 weeks,a CT scan, tested for MONO twice and have had my throid tested. And all tests come back perfect. I feel like a pin cushion. My anxiety is pretty bad as I am a guy who gets stressed until there is concrete test done that says it is that for 100%. But I mean my GP just didnt send me away like he didnt believe me. So there is some comfort in that. It is just very hard not to think about it all the time as it affects everthing you do all day.


Its been 7 months for me and so far I see slight improvement but I still don't feel right. I know when I'm going to have a bad day when my vision gets blurred and then I begin to feel like I'm on a boat. After numerous Dr. visits including a trip to the ER and $3,000 later I still have no answers. I have an appointment next week for the dreaded Electronystagmography. Sounds scary. Any advice on this test? What can I expect? I appreciate reading everyone's posts. It makes me feel somewhat sane knowing that I'm not alone.


Jeff - just thought I'd mention I had a sore throat for the first 5 weeks, along with a low low grade fever. Neither has really come back since then. How far along are you?? One of the most frustrating things is not knowing how long till full recovery, for some it is 2 to 3 months, for others, much longer but you do improve gradually, with lots of ups and downs thrown in just to make it more challenging.


Does anyone get pressure at the base of the skull and behind the nose, when I last asked the doctor about he said its because thats where the inner ear is behind the nose and on the opposite side its at the base of the skull. I feel the pressure more when I tilt forward and backwards, other then that I feel my balance is getting better very gradually, I still feel a slight rocking which is annoying. My acupuncturists is telling me to stay positive and that I will recover to 100%, he told me worrying will just lead to more health problems.


I have been feeling rough for 5 weeks . I go to a specialist in 2 days. Hopefully it turns out ok. The hardest part is is waiting to get a 100% diagnosis so I at least wont worry it isnt anything else.


Hi everyone: I used to post frequently on this site, but have been really busy. It's nice to know that this site is still up and running.

I just want to tell all my fellow sufferers, that IT DOES GET BETTER, it just takes time. I was dizzy for 14 months, on and off, but have been much better this spring. Longer periods between episodes, although they still occur and taper off after a couple of days. The other thing I want to say is don't expect a linear recovery; don't forget the inner ear or the nerve is damaged so there will be setbacks now and then. But they won't last as long, and won't be as severe. Mine always acts up when the weather turns humid, or when I get overtired. Apparently the exercise ball is supposed to help with this. Anyone tried it? Katie and Sandie, I miss you guys. Cheers Maria

Hi, everyone, Cathy!

It's been an age since I last was here, there's been so much going on since just before the wedding that I am just now taking the time to breathe.

Just before we left for the wedding I had an MRI which was normal in all ways apart from some mild drop in T2 signal but the ENT thought it was artefactual and just coincidental that it was the same side that I have the caloric weakness in.

I was surprised that the brain part of the scan was "normal" as that's what's been annoying me the most lately.

While I was being tested by the ENT I was also diagnosed with "Hypothyroidism" and have started treatment for that.

It has helped my skin a little (it's now a little less dry) and I have started losing weight without trying so that's good news, but I don't feel that it's helped with all of the symptoms it was "supposed" to. According to the Endocrinologist and what I could find on the internets; Hypothyroidism can lead to dizziness and a host of other complaints like 'a disconnected feeling' (which I have).

I get re-tested for that next week to see if I am on the right amount of replacement hormone (and I wouldn't be surprised if I'm not).

The ENT has finally admitted that I "might" be having migraines without headaches (didn't know it was possible, but it appears that not only is it possible, but that it's pretty common, too!). I cut out MSG, chocolate, caffeine, soy and was already not having cheese or citrus... My symptoms of the "freewheeling" feeling have certainly lessened (which makes me think there really -is- something to this migraine-without-headache thing).

However.

Yes, there is a BIG "however" when it comes to my symptoms...

I am now tired ALL the time. I'm talking -sleeping- tired, not just the "lay lazily on the sofa all day" kind of tired. I wake up at 9 or 10 every morning (thanks to an alarm clock), stay awake until 11 or noon, depending on what time I got up at and how well I slept... then have to take a nap. That usually lasts me until about 3:30/4pm ish and I go to bed at 11:30ish and do it all again!

Nightmare.

Along with this overwhelming tiredness, I have a horrid feeling of being disconnected to the world. I often have to remind myself of what it was that I was wanting/trying to do because I've suddenly started to stare blankly into space for no reason.

The other day I was at the dentist getting my silver fillings replaced as I've heard that the mercury in them can cause a whole host of problems and sensitivities (let's hope it helps!) but while I was laying there with a mouth full of hands, drills and suction devices I was confused as to how I would get home when it was all over.

Not "which way will I walk home..." but more I -forgot- the concept of walking. At the time it didn't bother me because I was so disconnected and I remembered by the time I went to actually leave, but when I got home and was praising myself for not being anxious about being at the dentist I remembered how I had actually felt and was quite worried!

I've started to lose cognitive function... I have a difficult time finding the words (when speaking) to convey my thoughts. I was looking at some chocolate brownies last week and said "Bacon"! ( I can sort of see how I managed that one, they are baked, after all!).

I've also had to sometimes start reading things 3 or 4 times before they make sense as I seem to have some form of dyslexia but instead of inverting or transposing letters, I move the whole word (though it remains the correct way around) If that makes sense.. Basically, I can see a sign that says "If I stop can you?" I see it initially as "I stop if you can" or something similar.

Anyway, as I said; I get retested for the thyroid next week and have some VRT to get through and everyone thinks I should be right as rain in a month or so.... I'm not convinced as I'm now coming up on a year of being unemployed/unemployable and am becoming quite cynical about the whole thing. I think my next step will be getting a new GP. He's the one who decided that I could wait from August '08 to January '09 before seeing anyone about by telling me that I just had to "get used to it" and "wait for it to pass".

*hugs to all!* Tanya

Hi Tanya, and everyone, Great to hear from you - I was wondering where you had got to! I'm really sorry to hear that things aren't going so great. Not really sure what to say except that I'm thinking of you. I have been going pretty well. I am hardly ever dizzy any more and only rarely feel off balance. The problem still seems to be anxiety - I think that having had labs or whatever I have lost confidence in my body so any small thing that doesn't feel quite right makes me worry. I still don't feel too good in restaurants, shopping centres, airports etc - places with crowds - but I think it's more of a matter of getting used to it and hopefully it will eventually pass.

Hi to everyone else. Hope you are all going okay. Take care!

Cathy


I feel I'm getting closer everyday to a full recovery, but I still feel that internal swaying and head pressure. But overall I'm functioning alot better, I've got a month leave from work so I'm just relaxing and recorvering, this thing just takes time...

Dc


Hi Sandie, Maria and Katie

Well what can I say its been 18 months now and still no further forward to what the hell is wrong with me? Got the results of Lumber Puncture, They said they didnt record the pressure? Why I want to know? The CSF protein and Glucose were normal with only 2 white cells? Loads of medical jargon in letter the only bit I really understood was that it said none of these investigations have taken us any further with this lady's diagnosis. So they told me first it was Labs, then Cerebellar Ataxia and now they don't know. I am scheduled to see the Neurologist again in the next 2 weeks. Feel deflated and so depressed now, glad I dont have Cerebellar Ataxia but not knowing whats wrong with me is sending me off my head. It's my heads its the worst now the sensitivity is unbearable at times. I still cant watch tele or try to read a book, if I watch tele for more than 5 mins my vision goes blurred, I cant focus, then the stabbing pains from the top of my head start right down to the base of my skull my forehead goes tight and sore and I feel the wierdness come on me and my eyes droop and are all glazed and I start rubbing my head at the top of my skull to the point my hair is standing on end with static and I look like a Women Possessed! Everything slows down my speech, my movements everything. I dont understand it, I could watch television 6 months ago, my symptoms have definetly changed, my ears are not really a problem now, its all my head and eyes and functioning. I cant even wear sunglasses on my head as the legs put pressure on the side of my head and its unbearable as if my heads in a vice!I cant drive my car, I cant go out on my own. I feel like I am just existing right now sitting in my conservatory 24/7 staring out the window. I can do a bit of housework now. I fell over last week just came crashing down and smashed my hip off the chair, I have given myself a right sore one. My partner is struggling to cope with me now, he said he does not get it? How they cannot detect anything. This whole thing is taking its toll, I dont know who I am now, I forget who I was, I am now this little angry person thats ill everyday and struggles to function. I feel like I am starting to become depressed and this is not me. I never ever felt I would be a person that would get depressed but this is bringing me down and I am so sad.

I have the odd day where at times I feel semi-normal but within half an hour I can be ill again. Everyone can see it, they see my face and eyes change and they know its happening to me. I know as soon as I open my eyes in the morning what kind of day am going to have. I still feel the internal swaying and my head pressure is really bad.

As for my employers still giving me grief, getting paid SSP pennies a week, they sent me a P45 in the post without any warning and I was very upset as you can imagine, they said the computer sent it as a error as I am not sacked. I am so stressed but cant be bothered with a fight with them, everyone thinks I should seek legal advice but I have not got the strength! Will keep you posted but think its going to get complicated and more stressful!!

sorry for the rant guys but its took me all my time to do this on the computer and I need to let it out as no one understands except you guys.

Angela


The above post was to KC too!

Angela


Hi Guys

In my last post I said my ears where not bothering me as now, Well today they are killing me, I do not get it!

KC I hope you are well

Angela

So, for those who have added me on FB: we may have another, non Labs, contender for what's been making me sick.

Where's Dr Gregory House when you need him?!?! ;)

*hugs to all* Tanya

Sorry.

I meant to say: The pictures are up on FB.

Can anyone say "Brain Fog"?


Hi Everyone, Tanya, so what is the non-Labs contender? Sorry to hear you are having such annoying cognitive symptoms.

Angela - somehow I am not surprised they found nothing in the lumbar puncture. Although I have never had the type of symptoms you describe I have 100% sympathy for what you are going through. You have every right to feel depressed but try not to let it spoil the good moments. Fight back with your fighting spirit. Be kind to yourself. I hope the neurologist can help you find a diagnosis. Has he ever considered anti-seizure medication? Sounds like it might help in your case. I am not in the health care profession, just a thought I had as I am taking a sedative/anti-convulsant right now and have not had a single headache since I started it over a month ago.

Cathy - I feel I am on the same path as you. It is mostly anxiety with me now. I am in therapy for it - my therapist says I am still extremely anxious, originally I was worrying about the labs, but now I worry much more about the anxiety and how it has ruined the last 6 weeks of my life, which only makes me more anxious. I have been reading up on cognitive behaviour therapy and trying some of those techniques but the anxiety is still a huge part of my messed up brain chemistry right now. I spent a lot of time in her office today all teary-eyed because I tried to taper down the Klonopin and ended up extremely nauseous for two days (withdrawal symptoms). So I am stuck on this stuff for awhile and have to wean much more slowly after first crossing over to diazepam (longer half-life in your body). I hate taking any drugs at all, so this was a hard blow to me, and I have finally admitted to myself that I need to start taking something to stabilize my moods, which are not that extreme but I can't deny it anymore that I am perfectly fine either.

On sunny high pressure days, I feel almost zero balance issues, which is a joy, but on other days it is still definitely there, but I also think I am just getting used to it and so don't notice it as much as I did previously. One thing I read about CBT is to not fear the weird sensations. I was trying to tell the therapist at the beginning of labs you feel weird all the time, it is hard not to be aware of it, and be anxious about it, since you never know how you will feel when you go out until you actually do go out. Or how you will feel day to day, morning to morning. I don't think these people can truly "get it". She thinks I am over-reacting to every little tingle or tummy ache I get.

Well enough about that. I am not supposed to be worrying about it so, there, over and out!

To KC (and others):

You can see pictures here...

http://www.facebook.com/album.php?aid=283111&id=820225110&l=0c36f9d77b

There's a nasty-looking mould that's been growing in our bathroom since before we moved in.

(We asked to have the leak fixed a year ago and they are just now doing it. The local government owns the outsides of our flat as well as any pipes that run -through- it that service the public areas. Don't ask. Weird British set-up)


Hello everyone!

Things are improving but lately as the weather has become stormy again, I've noticed a return of my dizzies. Fortunately I'm mostly affected only when I tilt my head to look upward, or to reach for something on a high shelf. I'm fairly certain I'm through the tunnel with the menopause and I'm starting to believe that many of these symptoms are related to this change in my body chemistry. One new symptom I've had recently (which I'm thinking is NOT related to Labs?) is waking up gasping for air. It's happened 3-4 times now, this severe sleep apnea. The last episode was the scariest as I was facedown on my pillow and really woke up with a major adrenaline rush. I gasped so hard for air that my throat was sore for 2 days. I hope to not have THAT happen again! oh - getting older..... Take care all Laura P


I would definitely check out the MOLD situation!!! When I was teaching and we moved to another building, the building was old, but they had remodeled inside with new paint and carpeting - I was SO SICK EVERY MINUTE I WAS INSIDE THE BUILDING! Nausea, dizziness, faintness, vomiting - oh it was horrible. I thought I would have to quit teaching. It took 3 months for me to acclimate to the building, and then I stayed off the carpeting and avoided older areas of the building. It was a nightmare. I wonde if this is the basis for your illness??


Dear all,

I am so scared.I was diagnosed with lab in april 2006 and since then i have been having days when i feel spaced out in my head.I cant really describe it except its lightheaded foggy and asif i am not in same room as people.I get forgetful and tearful and i am very stressed.When i feel it coming on my ears block and the top of my nose blocks.Steaming helps relieve my symptoms.But i cant believe it can go on for so long although reading your posts one lady has had it for years.I am very scares that i have ms or a tumour and as i work iin the hospital i am to scared to go for mri or ct incase i have.I went to dr loads when first diagnosed and each time bloods were fine and lab was the outcome.I had full blood count last months and that was normal.I still get foggy like i am today and worry myself sick i never suffer from headaches or nausea which i know is good news but my head feels tight when it comes on.I hate the lightheadedness and tearfullness.Cna someone please tell me they have had this for so long too. Sarah


i forgot to say on my last posting above i had an mri in 2006 when i was first diagnosed i didnt work in hospital then so was oblivious to what is could be..it was clear and ent put it down to allergic rhinitus too.


Hi everyone,

Maria - I am still floating about! Nice that you are missing me!

Tanya - poor you. I am so sorry that you are having all these problems and hope that you get sorted soon.

Angela - I am soooo glad it is not this cerebellar ataxia thing with you. That sounds like an awful thing to have. Try not to worry so much about your symptoms. I had a lot of your symptoms (not the standing hair though - lol). And, I can guarantee that from the day I started feeling dizzy my symptoms would change every few weeks. There are so many of them with Labs! One of my weirdest was that I could not bear to wear a watch on my arm as I felt it was cutting my circulation off. I didn't wear one for months, even when I was back at work and feeling much better! Strange!

Try and be positive - it is a waiting game and you will get better. Small steps - I know it is so frustrating and you say your partner doesn't get it but it is hard for other people to get it because you probably look ok. Get him to take a look on these sites with you and see that there are actually loads of other people with the same problems. To your friends and family - they know you are suffering (my little girl always knew when I was at my worst just by reading my face even though I didn't say anything to her). But, to others they cannot tell, which is frustrating in itself.

Laura - ooh I can't wait to get this menopause over and done with. I still have my periods though a couple have been delayed by a month or so but I am so off balance and dizzy at period time it is so awful. So if I could get rid of that part of my life I do believe I would be much recovered.

Take care every one - be positive

Sandie


Hi Sarah

I have had this junk for four years gone March. I know of people who have had it for longer than me. My friend has had it for about 7 years now and I have another personal friend who has had it just under four years.

Your symptoms sound typical of someone with Labs who has ongoing problems.

I also suffer from sinus trouble which makes my dizziness/balance worse. Hayfever season is terrible for me and I am sure that if I did not have this allergenic rhinitis I would have recovered a long time ago. When my symptoms are at their worst I also feel that my ears are blocked especially the right one, though when my GP looks in there they see no blockage. My allergies are all year round and though they are not serious allergies they do affect my ears and therefore cause dizziness and balance problems for me.

I was also offered an MRI about 6 months back by the ENT but was too scared to have that, I was then offered a CT scan but cancelled my appointment. You always wonder if there is something there but when it comes to the crunch you don't really want to know - lol. But really I figured that after four years and with good periods where I have virtually no symptoms the chances of there being something sinister in my head were pretty low! This is going to be the case with you too so try to stop worrying so much. Anxiety and stress feed this thing and make your symptoms worse.

I also do not really suffer from headaches or nausea. I have had slight nausea but have never been sick with it.

When I first started researching Labs etc they were saying (on the internet) that people who had ongoing problems would usually recover after 2 years but I have surpassed this mark and then when I was looking a few months back it was mentioned that you could now recover after 5 years. So only a year to go (now wouldn't that be nice!!!).

Best thing Sarah is to try and stay calm. Take each day as it comes - be kind to yourself.

Take Care.

Sandie xx


Hi Sandie:

I also had read that people usually recover after 2 years. But you are right, if you have good periods in-between, it can't be anything more than that. I had a really good 6 months and bam, Wednesday started feeling nauseous and dizzy. Here we go again. I wonder if I have allergies too, although I never used to. Had nausea but never got sick either. Just dizzy and sick like I have a virus. It might make you feel better to have a CT or MRI just for your own peace of mind. Sarah, try not to worry. I had the exact same symptoms as you. 3 years is a long time. Why don't you go for tests, like balance testing and at least get a clear diagnosis. It might make you less anxious. Your symptoms are very typical. My next-door neightbour started with this crap the same time as me, and still has it, although she has had good periods as well. I hate to break it to you menopausal ladies, but after the change, it's not much better, you get hot flashes for a long time, and it doesn't help if you already have this. My doc says this is a virus and stays in the inner-ear or nerve forever, but flares up, especially when the weather is humid. Well it certainly has been humid here. As for anxiety isuues, they go on for a long time, I can certainly sympathize with that. Who wouldn't be anxious when you are going through this?Easy for people to tell you to relax, fact is you just can't. Has anyone flown with this? Haven't been anywhere in two years, am afraid I will start all over again. Everyone take care, Maria


Hi Maria

I, like you, have never suffered from allergies until after I got Labs. I didn't even realise that I did suffer badly until my GP looked up my nose a few months ago!

I did go for all the testings at the ENT and my final diagnosis was vestibular neuronitis due to the fact that I have problems with my balance. Strange you should mention your neighbour having this too because my neighbour from my last house has also been suffering with this. Also a friend of mine from the next street has had it (not as bad as us). Strange isn't it? But then again it is caused by a virus. Oh, and thanks for shattering my hopes about the menopause! Here's me thinking it was all going to disappear once I had gone through it! Once all the hormones and all that had settled. I'm not in menopause yet but at 48 must be close. As I always feel pretty dizzy and my balance goes haywire at period time I was hoping that once they were out of the way things would be good. Oh well, think I'll just go jump off that cliff now - lol!

I haven't flown since I got Labs and have totally avoided it though lots of people are fine with it. I also steer clear of boats. But, that's just me and I'm sure you would be fine if you were to go for it!

Take care

Sandie xx


HI Sandie: Well your menopause may be okay. You don't have as many ups and downs, but the hot flashes continue for a while. O the fun of growing old! I'd have huge anxiety regarding flying. I guess I am not ready, and with this latest flare-up, (the first in 7 months), it's making me even more nervous. Boats were never my thing, so that's okay. The humidity is pretty bad here, my de-humidifier in the basement has to be emptied out at least twice a day. I see the Doc tomorrow anyway for an annual check. But I'm sure he won't shed much light on the situation, except to tell me I have to live with it. Do you take anything for your allergies? I have some nasal spray which works only marginally. My nose is really plugged at the moment. We seem to have the same symptoms, I was diagnosed with VN too based on the caloric test and no hearing loss. As I said in an earlier posting, recovery is not linear.But at least we know we will recover.

Take care, Maria


Hi Maria

Yes, I do take stuff for my allergies. I take an anti histamine pill every day (benadryl), and I use a nasal spray (beconase) twice a day. I have also been using a saline nasal spray which is totally natural (just salt water), and this is really good at shifting the gunge in the nose! The effects don't last long but you can use it as often as you want.

Hope it goes ok with your annual check.

Sandie xx


Hi Sandie: I had a good laugh when I read about the gunge in the nose. Ain't that true. I use the saline spray too, as well as another one (forget what's it's called). My annual check went fine. He says I'm healthy. When I complained about my inner ear symptoms, he said "don't worry, it's just a virus". Obviously he has never had it. It's darned humid here,not helping the Labs situation, although I feel somewhat better after having a heck of a weekend with incredible dizziness and nausea-first time in 7 months. I guess I shouldn't complain. Some people never have a break from the symptoms. I think back longinlgy at the pre-labs days, when I never had to worry about being dizzy. Taking a flight would be nothing. I asked my neighbour who has had labs for 20 months if she would fly, and she said no way. Even a long car ride would be too much. It's not just the flight, but airports and people moving and bright lights etc. How are you in cars,Sandie? I remember last summer, you got sick when you went to Scotland was it? Take care Maria


Hi Maria

Glad your annual check went well. Mmmm, it's always the same with these docs, even the so called expert ones, they haven't experienced this so they don't know what it's like to live with it. I often say that I would love to give this to some people (i.e. my boss), just for a little while so that they can feel what it is actually like. Wicked or what?

Where is it that you live? You have mentioned humidity a couple of times. It can't be the UK, at least not up north, as it has been freezing here some days. I've actually had my heating on a couple of times over the last week!

I'm like you in that I don't suffer symptoms 24/7 but when I do have a relapse it takes me months to get back to 'normality'. I tend to suffer only minor symptoms in my 'good' periods so i suppose we shouldn't really complain. However, it does get so frustrating that you are never fully clear of it.

Yeah, last year I did get really sick after the long drive to Scotland. I don't do the driving but it is about about a 300 mile drive. I can feel quite bad in the car but not every time. Just like sometimes I can be totally fine in the supermarket/busy places etc and then other times it just washes over me and I have to get out of there fast.

Oh well, maybe one day it will be a distant memory!!

Take care.

Sandie xx


I am going on 8 weeks I have high anxiety right know my vision is most affected not really blurry eyes but kind of shake a bit. I have never had the real bad vertigo my vision and mental end of it (brain fog) is the worst. I am struggling as I am a farmer and cant just take time off is really hard driving in the field bouncing around. Some days I think I am losing my mind. 12-16 hour days in the tractor are mounting making the anxiety worse. Good luck everyone.


4 months now and I just had my best week so far. A whole week with close to zero symptoms. I ran twice in the mornings....without feeling pukey or faint or off balance afterwards. But today I woke up a bit dizzy and nauseous. I still think my week of nearly no symptoms means I am close to a full recovery. What a blessing and joy that would be.

Jeff - don't get anxious! Try to accept what is happening and not worry. The brain fog will eventually lift, your gaze will steady. I turned into a basket case from worrying about this illness. I know it is hard not to....without a time-line to recovery, but try not to. Make others sympathetic to what you are going through so that they let you rest when you need to. You will be fine. It is not serious, life-threatening, just annoying and really crappy at times.

I am going to fly at the end of August and I'm not really worried about it. I've had some car rides make me nauseous and others where I've been fine.


Hi everyone:

Jeff: your symptoms are so typical. You are not losing your mind, but the anxiety can be bad with this. We are all with you, it's such a frustrating illness. But you are not really sick, your brain is just getting mixed signals.

Sandie, I have exactly the same problem, only minor symptoms during my good periods, here and there, clears up quickly. This relapse has been a bad one. Only a week or so, but feel like c--p. It'll probably take time to get over this one. Ugh! In answer to your question, I live in Toronto, and this week the humidex is really high, and I'm pretty sure my relapse is connected to that, since it started around the same time the humidity starting being high. Yesterday I was fine, today I feel awful. The worst part of this illness, are the ups and downs. Take care eveyone Maria

Hi I'm Stacy and I was reading all of your comments about Labyrinthitis. I got it Friday the 13th (of Feb.)BIGGEST NIGHTMARE I am in my 5th month and I don't seem to feel any better then 3 months ago. I'm depressed and feel so alone in fight this. I went to a Hearing and Balance center where they tested me and said oh you lost your balance on the left side bla bla. They showed me somethings to do everyday and sent me on my way. Ok, now what? I've tried everything I walk, jog, shop you name it and I still feel extreme dizziness and bubble headish and walk like a bad drunk. It seems so good to read that there's others who are going through this nightmare too.


I've had it for 7months and from everything I have read everybody recovers at a different rate, I am now almost recovered but still have a slight internal swaying feeling, what I've noticed is that you cannot feel improvement day by day, its more like month by month you will see small breakthroughs in your recovery. What helped me the most was exercise along with acupuncture and herbs, exercise everyday no matter what, it will make you feel dizzier but with every session your body will start to compensate. Herbs I took were Cordyceps for the immune system and Gingko to help bring more blood and oxygen into the inner ear. I also found Zyrtec and Steroid Nasal sprays to help with reducing the pressure in the sinuses. Stay active and stay positive, I thought I was also losing my mind but stay strong you will get better its just going to take some time. In regards to flying, I have flown 4 times since I got Labs and didnt notice any real problems other then pressure in my ears.

DC


Hi everyone

I started feeling strange on 16th April 2009 and at first thought it was a hayfever tablet which had somehow drugged my brain. About a week in I started having severe panic which lasted for weeks and I sill don't fel it has completely gone away but its a lot better. I feel off balance all the time and get really fatigued mentally after doing two hours at work. I took a month off work and then returned to half day which I am still doing. It's really hard to see improvement because it happens so slowly. I have not been diagnosed with anything yet but am seeing a private ENT specialist as NHS are useless to say the least. Am due to have a caloric test next week. Hearing test has shown mild hearing loss in left ear. When this started I was convinced I had some kind of brain damage but doctors have convinced me this is not the case. Nobody who has not had had an inner ear disorder can imagine how it makes you feel and how scary it is. I really feel for everyone who is suffering and pray that we all recover.


Hi everyone;

Jemma, good luck on your caloric test. Maybe the hearing loss is connected to an inner ear problem. You sure sound like you have all the symptoms. It's hard to tell anyone who hasn't had this what it feels like: there are so many symptoms. Tired, dizzy, nauseous, head full of cotton, marshmallow feet, not to mention just feeling bad. When I first came down with this, I though I was dying- I have never had anything that made me feel so bad. But people look at you and say "but you don't look sick!" All the while you feel just awful. And you are right, it's really scary. I couldn't imagine that a simple virus could turn your life upside down. But it has. You lose your confidence, and just when you feel better and get confident, bam, there's another relapse. We are getting nothing but thunderstorms, so my symptoms are really acting up. Hopefully we will get some dry weather soon. I don't think with the amount of rain we have been getting, that I will need to water the lawn for the next ten years!

Hope everyone is having a dizzy-free day.

Cheers, Maria


Hi everyone,

My name is Natasha I got diagnosed with Labyrinthitis April.14 2009 I am still battling this crazy thing trying to stay positive but considering I had to take a semister off school and cant work its been hard very hard I keep waking up each morning hoping this will be the day I feel better. I just had a question I have the foggy feeling, lightheaded feeling, fullness in my ears I was just wandering if anyone had a constant ringing in there ears and if there is anything to help this ? Its so annoying if any advice that would be greatly appreciated...Its so nice to know we are not alone and the recovery stories are giving me hope.

P.S Stacy I completely understand what your saying stay strong we can beat this :)


I have only had this 8 weeks but I have noticed that caffine pop, coffee, even chocolate make things worse. Dont know if that helps anybody. Has anyone had a bad post nasal drip with the Labs. I have also been on real high end oil of oregeno drops and seems to be helping. Best of luck to all

STACEY - you seem to be as depressed as me but I stay strong by thinking one morning I just might wake up and it might be gone good luck and stay positive all the best


Hi Jeff

Just to let you know that I have had severe post nasal drip and a host of allergies since I started with Labs. Before I got Labs I was not allergic to anything!

I didn't know that I had post nasal drip and that the lining of my nose was severely swollen until a few months ago when my GP had a look up there! This is, would you believe, after many visits to the ENT where they have never lookd up my nose - unbelievable!!! I am using a steroid nasal spray and a saline nasal spray and take antihistamines every day but it is still there. And, I do think that this is part of the problem for me in still suffering after 4 years.

Take care

Sandie


Hi Angela

I cannot tell you how delighted I am for you. I cheered when I read your last post! I know you still have no proper answers but that fact it's not cerebellar ataxia is bl**dy brilliant. Which basically means you can recover 100%. Fantastic. I understand the not knowing thing stinks but it's still a major victory.

Don't be mean to yourself. This illness makes everybody, angry, depressed and off their rocker (the latter I already suffered from) I'm sure your situation is made more complicated by the scoliosis. This would explain a lot as far as your extreme symptoms are concerned. Are you taking gingko? Or having head massages? I say that because they made a big difference to me. I would look into anything alternative. It's pretty apparent the convential stuff they've tried on you has been total rubbish!

As for the P45 incident... Wow what bright spark put that in the post?! Angela, don't be upset. They're just a bunch of meat heads. I bet your boss wouldn't have lasted a week with what you've got. Never mind 18 months. Tw*ts. Fight them all the way.

Let us know how your appointment with the neurologist goes.

Jeff.... I had lots of weird eye movements. I had nystagmus(eye ball shaking) and then something called superior oblique myokmia (nerves and muscles around the eye twitching) Both brought on by labs and I'm happy to say are now gone. It will stop :)

Sandie and Maria. Fab to hear from both you girls. X

Welcome to everyone new.

Lots of love

Katiexxx


Hi Sandie

Yeah I have bad nasal drip but it is really bothering my throat and chest my throat is always inflammed . I go to see a well repected ENT in 3 days. I have been getting real strange muscle twitchs in my one arm as well. I am suffering from severe fatigue as well, as I cant take time off work.(farmer) We make 80% of a yearly income in the summer. I am really suffering with this, runny big equipment all day is difficult and the stress is mounting. I am at the end of my rope (anxiety wise). I have always been super healthy my whole life and it is hard to deal with something that I cant just beat. I pray everyday that I wake up and this is gone. Although my wife has never had any illness like this it really helps that she understands that for me to be down this long something is wrong.

Well all the best

Jeff


Hi Jeff,,

The post nasal drip is a nightmare, and could be made worse because you work in the fields(allergies, hayfever). Mine has been much worse during the summer because I suffer from hayfever, (nose running, itchy eyes and asthma gets worse with the pollen.) Do you use antihistamines? My throat is also sore now and again but nothing major. I also suffer from fatigue but this can actually be a symptom of hayfever too. But it is most probably from the fact that your brain is trying to compensate for the dodgy signals it is receiving from the inner ear. This in turn makes you tired because it is tiring trying to make sense of it all, poor brain!!

Jeff, it is very hard to deal with this stuff but you will get better. Try not to be so hard on yourself and I know you are very busy but take regular breaks and rest while you can. For all you have a very physical job, you are lucky in a way because you are outdoors and believe me that is the best place to be when suffering with something like this. Being indoors, in busy environments is so bad! At least you are out there with no-one to bother you and loads of fresh air!

The anxiety is also part and parcel of this so don't worry too much about that, it will also go away when you start to feel better. If you worry you will make your symptoms worse and then your anxiety gets worse - a vicious circle!

Don't put too much hope in the ENT - I saw the top dizzy consultant at my ENT and he did nothing for me. There really is not a lot they can do for you although the exercises they give you can help, but you can get them off the internet!

I am glad your wife is being so supportive because that will be such a help to you. Lots of people don't get this support and that must be awful for them. Just to have someone that understands is half the battle. My husband has been great for me as he also knows that I am not the type to feign illness! The thing with this thing is that you actually look well and healthy, so people don't really understand.

I hope your wife is having a look on here with you so she too can understand what you are going through. Hopefully, it will not last too long for you.

Take care

Sandie x


Had my caloric test today. It made me really dizzy when he put the warm water in my ears but this is normal apparently. Afterwards he told me there was no sign that anything is wrong with my ears and he does not think it's ear related. My left ear does feel strange, kind of full and uncomfortable. I am not sure what is wrong now. Has anyone else had balance tests which were normal but still has an inner ear problem? I feel constant imbalance unless lying down, never had the spinning vertigo thing though. My ears, especially the left one, feel full and twinge sometimes. I get extremely fatigued after a few hours at work, on computer etc. Like a kind of brain fog and drained mental fatigue. I also feel strange in shops and places with lots of visual stimulus. If it isn't an inner ear problem I just can't imagine what else can be causing it because it doesn't seem to be getting worse or better and the doctors don't think it is a brain problem. Any ideas anyone?

Hope you're all ok Jemma


Hi everyone: Jeff I am so sorry you are having to suffer this crap. Especially if you have the aditional pressure of working extra hard in the summer. We are all rooting for you. It sure isn't easy. You are blessed with a wonderful supportive wife. Jemma, lots of people have the caloric test and are told it is normal. But apparently, according to what I have read, it's not all that accurate because it is not that sensitive. So if you have a mild problem, (which can still be hell) it doesn't show up on the test. Very difficult to be sent home and told that is nothing wrong with you. I was almost relieved when I was told my caloric test showed a weakness in the left side. That's when the doc started taking me seriously. Your symptoms are exactly like mine were, fullness in the ear, slight pain sometimes, and this butterfly kind of feeling. And always dizzy, and like you I never had the real vertigo and never felt dizzy when lying down. Walking was a nightmare last year in the beginning, always felt like I was being pulled down, and the looking through the wrong glasses kind of feeling. Do you have nausea Jemma, and a kind of sick feeling? Honestly I don't know what else it could be, though I am not a doctor. But just because your caloric test showed nothing, it doesn't mean you have nothing. Has the doc considered MAV(Migraine Associated Vertigo) apparently the symptoms can be simillar. But if it's in one ear only, it's got to be an inner-ear thing that the test just didn't pick up. Did you feel the same amount of dizziness on both sides when they did the test. I felt a definite difference (hardly dizzy at all in the left ear) and was going to have it out with the Doc if he told me the tests were normal. Anyway, don't know if that helps. How long have you had it? Am having a better week this week, almost normal. I won't say it too loud though.

Katie, nice to hear from you. Sandie, any better?

Take care everyone Maria


Hi

Thanks Maria - Previously the doc said I had mild hearing loss in left ear and I felt less dizzy when the water was put in the left side so I think it could be a problem with the left ear but he said both sides were in the normal range of vestibular function. Like you said though if one side is different it could be a mild difference but causing me to feel awful.

I dont feel nausea but just always imbalanced and get so fatigued. Also suffer some confusion/brain fog which has improved a bit over time but can only do half days at work. It started mid April and caused me to panic at first but this subsided and now Im left feeling strange and imbalanced and tired. I just cant think what else it can be and it seems to fit with a lot of th other ear symptoms people have.

Thanks for your advice


Hi Maria,

I'm really quite good at the minute. I have just been into town and coped quite well! I did have a real bad day two days ago and my balance was all over the place but it didn't last into the next day! This is because for me, it is 'that time of the month' so my hormones are all over the place! I find that the extra fluid in my body (water retention) plays havoc!

Anyway, I took a Stugeron tablet this morning before I went into town because I am usually terrible in crowded places and I had no dizziness or balance problems. I have heard that some people are treated with this for ear problems so I thought I would give it a go. It is a travel sickness tablet.

Jemma, I agree with Maria, this is probably 99% certain to be an inner ear problem! The tests they use are rubbish and are not conclusive. The ENT's are also useless and a waste of time in my opinion! Sorry, I know I am not a doctor but they make you so mad at times! All your symptoms do seem inner ear related and I did not have the spinning vertigo which usually occurs first or any deafness and I only ever get slight nausea. Everything you describe is the same as me and are all inner ear disfunction symptoms.

Take care

Sandie x


Hi everyone: Jemmma, for a good descrition of the symptoms go to Labyrinthitis/org. UK. If you read the case histories as well as the symptoms, you will find that yours are right on.

I'm having a couple of not-great days, after 5 really good days.What a crappy illness. Going on two years.Yesterday I sat out in the sun with a book, it was a beautiful day, and when I came back in I didn't feel well. Is the sun bad for you too? Maybe the humidity.

Sandie, glad to hear you are feeling better. I have never tried Sturgeon. Is that a prescription? I have heard sea bands are good too.

Jeff, caffeine ,chocolate etc. are often an indication of Migraine Associated Vertigo. They are on the no-no list. Are you sure you don't have that?

We have been having a garbage strike in this city for around 6 weeks, the union want 18 sick days. Hello! We are in a recession! So everything stinks. But the rats are loving it! So guys, Toronto should definately not be on your list of places to visit, it's not a pretty sight.

Better days are ahead, (I hope)

Cheers everyone, Maria


Hi everyone

Thanks Maria - Yes been on that labyrinthitis website so many times and also emailed Emma, one of the site's creators, a few times. It is a really good website and it's been really helpful to me as otherwise I could not have believed this could be an ear thing. Most people just would not have a clue how strange it can make you feel, even the doctors don't seem to realise how scary and debilitating it can be. Goes on so long as well, its hard to tell if you are getting better or just getting used to feeling ill.

Anyway we all plod on hoping each day brings some improvement however small.

Jemma


Hello All! Things had been going well. Actually had a few weeks with barely any symptoms - yeah. Then it hits. My last post I had commented on the "waking up gasping episodes" Has anyone else had anything like this? I had such a severe attack a week ago, my husband almost called for an ambulance. I wasn't sure I would be able to breathe again. Terrifying. Long story short. Doctor set me up for a sleep study as she's convinced it's sleep apnea. I do not agree. I think it's an allergy of some sort. During the exam I mentioned to her that I was still having symptoms of Labs. She was very surprised and wants me to have an MRI. I told her about the blogs and how many people have Labs for years and she didn't seem as informed. Anyway, she's looking for a benign "acoustical neuroma"? I agree with someone else who posted that I feel this is unnecessary as I was having some long stretches between episodes. The solution is to narrow down my triggers. When I called about the MRI and found out a contrast was involved, I said no. I hate the idea of having a strange substance injected into my bloodstream - yech

Sleep study results are not back, but I do not believe it's sleep apnea. I've done my own research and found LPR Larynxpharengeal reflux, also spasmodic larynx, which is exactly the symptoms I've been having. So I'm on Prilosec twice a day and back to Allegra for the allergies and a nasal spray to clear my cruddy sinuses. I've also raised the head of my bed 3 inches and I'm watching my diet. Having a positive turn around! Head is clearing out, I'm sleeping a bit better and the Labs goes away. We'll see -

Laura


Hi to all,

Just want to introduce myself. I've come down with what i believe is Labs since 28th May 2009 and the first month was an absolute killer. I was so dazed everyday, walking on foam kinda feeling and throbbing headaches. I never got the Room spinning kind of dizziness, but more of a walking on the deck of a boat sort of feeling. The worst thing like Jeff mentioned is the Brain Fog and the tension type headache or pressure. I mean i can cope with the not walking straight, but the mental fog, just cuts like a knife.

Had CT scan and everything came out clear and will need to go to ENT to check on vestibular function.

I think i have crossed over the line to recovery now though, as the past week has almost been completely symptom free, albeit it is starting to come on again the last 2 days.

I have also been wearing this healing necklace thing called Phiten, im not sure if that has helped, but since i worn it, i am having more good days than bad.

The most important thing for me is to go out everyday and walk. I thnk the more you try to get it your brain to compensate the better.

This illness is no fun at all. But you guys have given me a lot of hope and advice as i always read your comments.

Does anybody else get this throbbing like headache on their temples? Its not always, but when i comes on, it makes the symptoms worse.


Well ENT didnt do much but she did agree that anxiety is making things much worse. So they gave me Xanax for times I am really bad. I am not a guy to ever takes medicine like that. Or even admit that I need help and cant get over this on my own. I am kinda disappointed in myself that I need it but the doc said sometimes these things are out of peoples control. I hope I am making the right decision, but has anyone else tried this.

Thanks JEFF


Hi Everyone, I have been suffering with BPPV for 3 years now and went through Vest. Rehab Therapy which seemed to work. I had a glass of wine Sat night and woke up with the spinning Sunday morning. This has happened many times before but my audiologist says it is not related to drinking. Does anyone know otherwise or has there been documented research?


Hi everyone: Hope everyone is feeling somewhat better. It's hard to deal with the ups and downs. Robin, I think drinking can exacerbate this problem. I don't indulge when I'm going through a bad patch, but when I feel normal, drinking doesn't bother me. But I can't see why it would wait until the following morning to act up, by that time the effects of the wine would have worn off.

We are still having humid weather, so I'm still in up and down mode, but this week was better than last week. Take care everyone Maria


Im feeling a lot better, still feeling that slight internal swaying from time to time and get a slight tingling in the scalp as well, but other than that I cannot complain. Ive come a long way since Jan when it all started, I just keep reminding myself that Im nearly there and too not think about it anymore, going through this has only made me stronger.

DC


Natasha,

Many people complain about the ringing/tinnitus in their ears after this... sadly enough, it is just like any of the other symptoms you have with this thing.. it will get better with everything else.


Hey Guys,

I have been dealing with this thing for 5 years now...... I am in the middle of a very bad patch -- been ongoing fo 2+ months and I am going nutty... Ughhh... Its been quite a while since I posted.. maybe page 5-6? I cannot remember. Anyways, I just wanted to mention the strange symptoms I get, and just to let people out there know that these are symptoms of labs.

1. Night Sweats I get these when My dizzies act up.. I wake up soaked.. when I am not dizzy -- no sweats

2. Vivid Dreams -- Very Vivid and colorful dreams about stuff I have no clue.. guess its like Alice in wonderland for my brain

3. Electric Shocks.. -- I get sorta these 1 second shocks that pulse through my head once in a while... sometimes there are alot.. sometimes none.. very strange indeed

4. Shaky Head -- I can wake up and feel my head actually shaking... I cannot even move my head up and down without it being jerky..


Hi Jeff,

Xanax can definateky help with the anxiety when it is bad... it will probably also make the dizzies less severe as it works by dulling the brain signals that cause the strange symptoms... However better it may make you feel, it should be taken in very small doses because it can affect your brains ability to compensate for the damage and thus recover....

I have used it in the past... If the anxiety is bothering you, it likely can get out of hand if not treated... especially with this illness as the anxiety and inner ear go hand in hand.... I would recommend researching an SSRI like prozac, lexapro... etc...


Wheres Anna,

There was a girl on here a while back... Her name was Anna... She had a PH.D. and she was suffereing with some severe symptoms.... Anyone know her outcome... I hope she is better and that is the reason why she does not come here anymore.

Anna, If y ou are reading this... I hope you are recovered.


Does anyone else have eye problems as a result of their ear problems. I have had a kind of stiff dry feeling in my right eye which comes from time to time. Also for the last two days my left eyeball is sore, when I move my eyes it aches and is slightly sore if I press my eyeball with my eyelid shut.

My ear feels uncomfortable deep inside. Still really tired but hoping it is slowly getting better even if it is happening very slowly.

DC - you are giving me hope that recovery is possible.

Sam - I have had night sweats and vivid dreams. They were worse at the beginning especially as I had really bad panic symptoms for the first few weeks. Fortunately that settled about 6 weeks ago and I hope it doesn't return as it was one of the worst things I have ever been through.

Hope everyone is feeling ok.

Jemma


Hi Jemma,

They were worse for me as well in the beginning.. During my good periods.. I dont get them... But I can usually tell when I wake up.. due to the type of dreams I had wetehr or not today will be a good or bad day....

Currently I am in HELLLL!L!L!!L!L


Jemma, I believe full recovery will happen, its just a slow process, I kept focusing on what I was feeling and that made me more depressed and angry. Now I focus on how much better I am compared to 3 months ago, the healing process seems to be very gradual and very slow, we have to just look at this as a minor setback in our lives and remember that 6-12 months from now we will be back to our normal selves.

DC


Yes I think you're right. Improvement is so slow you barely notice it then you remember certain situations and places at the beginning and think I must have recovered since then because everything feels a bit less strange and I am managing to do more than before. It is easy to think there is no improvement when you don't feel completely right but like you say hopefully in another 6 to 12 months we will be able to forget all about this.

Jemma


Hi Everyone,

I'm doing well, had a really good two weeks straight of virtually no symptoms!! (I'm at 4.5 months), then PMS time hit and my balance was off again a bit but nothing that bad. Ladies, from what I have read, this seems typical?

I was really excited/happy to be able to start running again over the past three weeks. I was so slow and had to walk a lot the first couple of times, but last weekend I did 6 hilly miles, without walk breaks. I had arrived at the trail, gotten out of the car and felt the drunken walk, off balance thing, so I did not have high hopes for the run but it went fine. It feels a little bit better each time. Getting some cardio shape and muscle mass back has been so nice after being so sedentary for 4 months.

Night sweats and vivid dreams, Yup totally can relate to that! Some nights I feel all I do is dream, and that I don't get the really deep sleep I need. Thankfully, I never had the head zaps, except maybe once...woke me up in the middle of the night?

Jeff - please be careful with the Xanax - I was in the same situation as you, getting the bad anxiety and additionally, out of the blue, panic attacks in the middle of the night. I got some Xanax from my doctor, she said no more than 2 or 3 pills a week (0.25mg) and I was faithful to her instructions, but the anxiety/panic got worse anyway. Since I am very sensitive to drugs and have been known to develop "rebound" from short-acting drugs, even ibuprofen, I think the few times I took the Xanax might have led to a bit of rebound anxiety. Eventually I got so ramped up I couldn't sleep for more than a couple hours for days on end and ended up having to be hospitalized and heavily sedated. You can read my earlier post on this page. I have never suffered from any mood problems like this before, I am 45 years old, so their tentative diagnosis that I might be manic/depressive I still find hard to believe (average age of onset is 22 years old). I think this was entirely due to the Labs anxiety, and a basic predispostion I have to anxiety.....but not THAT kind of anxiety.

I am now taking diazepam (long-acting) and feel it has helped me tremedously. I know I have to wean off of it as soon as I can, and I am working with a nurse-practitioner to do so. She wants me cutting the doses a little faster than I'd like to. I already went through severe withdrawal symptoms when I tried to cut down the Klonopin too quickly, so I am doing it in the least painful way, which is reducing the daily dose by 1mg, and holding at that dose for a week before the next reduction, roughly, depending on how I feel. Thank God there is another drug that I can take, that takes away the anxiety when it flares up. It is non-addictive, very sedating and helps me sleep. It is INVEGA, an anti-psychotic, but is also used off-label for anxiety disorders. One pill at the lowest dose and I am good and mellow for at least two days, and I've only taken it 5 times in the past two months, and twice was because of the Klonopin disaster when I tried to cut my dose too quickly. I couldn't tolerate the SSRI I was given, but typically Labs patients should try an SSRI first if they are having a lot of anxiety and depression from the illness. Trust me, Benzo's are not the way to go, unless you can guarantee you will not use them very often or steadily for very long (no more than two weeks).

I have read up on CBT for anxiety disorders, and I think that has helped me also. I no longer fear when I start to feel off-balance in grocery stores. I found that by walking a lot slower in stores...I don't notice the balance issue as much and it reduces my anxiety.


Just was diagnosed with Labyrinthitis today. And reading through this is freaking me out on some levels and comforting me on others (ie. it has an end!) I am a mom of four little boys and I have two dogs... how will I survive this? How common is it for this to last for months and months? I've spent the last few days crying and trying to figure out what led to this... went on vacation, swam a lot, went on a big boat for a short trip, drove a long way, got a little cold probably caught from my three year old who had croup... suffered extreme insomnia one night then woke up with a terrible headache that lasted all day and then it became this awful constant rocking and swaying sensation, off balance walking (is this normal?! to feel like a drunk?), exhaustion... I'm frightened of how long this could go on. When do the good days start coming? After only a week of this I am already experiencing the feelings that many here have expressed... I'm just praying for this to disappear quickly!

Thank you to whomever started this forum.


Nan in Can, For some 2-10 weeks they completely recover, but for others it can be an ongoing battle lasting up to and beyond 12 months, something that will help is gingko, I just wish I started taking it as soon as I came down with it. Also I have had good results with acupuncture and massage, stay positive you will recover.

DC


Hi Nan,

Sorry you are with us now.. However, the bright side is that it will end.. Its hard.. (actually almost impossible), but DO NOT let the depression hit you.. it will make the ordeal much worse than it actually is... just try to do your best to stay together and get through the days... Noone here can tell you how long it will last.... Statistically, 3 months and you will be back to normal... others have this for years... HOWEVER!! When I say they have it for years, that does not mean it has been constant.... its most probably up and down good days, bad days etc.... I hope this doesnt scare you, and I believe you will recover... Just be prepared for the ups and down that go with this thing.. you may feel fine one day and then the next feel like garbage.... dont let it get to you... its just normal progression.


I have tried ginkgo biloba - started by having 2 tablets a day. I did notice an improvement after the first week and I feel less off balance now however it seemed to give me bad headaches and I have had to stop taking it now. Also seems to make my eyeballs sore and my eyes a bit bloodshot. I wondered if this is because it dilates the blood vessels round the brain and head area? has anyone else experienced this?

Jemma

Hi everyone and welcome to all the new people. Sorry that you are all dealing with this.

Nan - I can relate to your situation having young children myself. I hope you recover soon. Most people recover after only a few weeks. My labs started about 10 months ago and I think I can say I am pretty much back to normal. What I tried to do is eat really well, stay active, (not hard for you with 4 little boys), take vitamins etc. I also found that if I drank coffee or alcohol I felt worse. There is plenty of advice on these pages about supplements etc - read them and see what you think. For me It was a hellish few months made worse by anxiety - hopefully you have a good support network around you that can help out a little bit? Hope you recover quicly. Take care everyone!

Cathy


Thanks for the responses and encouragement. I don't have family nearby but thankfully good friends and they have taken the boys off of my hands for the last few days. I also have made an appointment with a balance center nearby (associated with a physiotherapy center.) I almost sang for joy when I found out that I wouldn't have to be referred by my doctor as those referrals often take many months here.

I am thinking of making an appt. with a chiro and massage therapist today... my neck is really bothering me. Thanks so much. I will survive! Fortunately I've staved off a couple of panic attacks already so I think I might be past having to deal with those. I think I need a tranquilizer at night though. It's really hard falling asleep normally now.

Thanks again everyone!


Hi all,

Been ages since I've posted here! I've not been diagnosed with anything yet but over the last 14 months I've had 7 attacks of nausea and vomiting with unsteadiness and dizziness.

The attacks were relatively short lived and in between them I had a little bit of residual dizziness but was pretty 'normal'.

3 days ago on Saturday night I had the worst attack yet, my whole body started feeling like it was being pulled to the left side and I couldn't walk properly. I vomited and dry reeched and fell over and cried for about 8 hours and when we realised that I wasn't going to get better on my own, went to the GP for an injection.

It's Tuesday now and I'm only marginally better. I do have my appetite back (for dry, boring foods) but this unsteadiness is sticking with me, I'm hunched over this keyboard like a half-dead zombie right now.

I'm getting a CT scan done tomorrow, see how that goes.

From reading your posts it seems like most of you have been diagnosed with Labs? Does that 'come and go' like what I've described? I have no ringing in ears or loss of hearing or even headache at all...

Sick of this thing whatever it is...

Take care xx

Beck - Perth, Australia


hi Beck,

Sorry your feeling so awful.... I am not sure what you have, but it is possible that it is inner ear related... Maybe Meneires?. I myself do have epiosdes usually sparked by something like a cold which throw me into dizziness for months.. I could be fine for months at a time and then BAM... Its miserable I know

Try to hang in there.. get the basics ruled out and usually the diagnoses of Inner Ear disorder is the last to come.. Either way you can do VRT and that seems to help people...


Hi everyone,

Thanks Sam for the response the the ringing in the ears is much better comes and goes but mainly I do not even notice...It's been about 4 and half months doing much better so I am really happy was kinda scared for awhile.This site is great thanks for all the stories shared really helped me feel at ease.

P.S For anyone planning to fly I just did a couple days ago was really nervous about it but everything was fine and I was not effected so just wanted to share that...cheers everyone wishing a full recovery


Hi,

I've been battling with labyrinthitis for over 10 years. First time I got it was in college and like many of the posts, I couldn't move at all and have no idea how my parents took me to the doctor. I was informed that it was due to a viral infection. Ever since then, I've had recurring episodes at least once a year, usually more often. To this day, I cannot figure out what triggers them (I have lots of theories that I make up to try to figure it out, but I'm sure that they are all wrong!). I'm so tired of doctors just telling me that there is nothing you can do. Go take meclizine and it will pass in a few days. OK, that's fine if it happens only once but if it reoccurs over and over, this is not a solution. I just cannot believe that with so many people that suffer from this, there isn't some form of treatment or prevention out there to help us. Has anyone tried anything that has worked??

After many years of suffering with this, I did go to an osteopath. The first time I went to see him, I was so truly excited because I was free from the vertigo for over 1 1/2 years! It was amazing. But then it came back and has been coming back at least twice a year. I continue to go see the osteopath but now am back to being frustrated again. Anyone try acupuncture? Vestibular Rehabilitation Therapy? Anything else that you can share that I can look into. I'm determined to get some help for this in some way.


Hi folks, I'm now into my 8th month with VL, but am hopefully starting to improve a bit, the bad days are less and less frequent, but I have a couple of questions for those who have recovered from it. I have a constant buzzing in both ears which doesn't seem to be going away and my memory is shot to bits with this, I have trouble remembering detail and concentration issues, does this improve with time? Am planning to return to college full time soon, just a bit worried that this will affect my ability to study.

Thanks,

Gary


Gary - Im also in my 8th month and Im function all most normal but I still dont feel Im 100%, I had buzzing in my ears initially but it passed, try some Gingko really good for inner ear problems.

My main issue these days is pressure in the sinuses, and slight imbalance, which leaves me feeling like I haven't got my legs back yet, its really hard to explain, its as though I dont feel right on my feet and get this anxious type feeling in my lower legs.. Can anyone else relate to this...

DC


I see many people have some of the same symptoms as myself. I feel greatly empathetic towards everyone suffering from the disastrous dizzy disease! Doctors don't know what to do, friends and family look at you like you're nuts or brush you off by making trite comments like "Oh I get that sometimes when I have a cold." or "Don't be silly, it's just dizziness.".

I've gotten what doctors diagnose as inner ear infection (Labyrinthitis but there is another name for it) a few times in my life. It lasts about two to three weeks and goes away.

I have two questions for you guys and am hoping you can help me understand a little better.

1. I had terrible ear infections as a child (I'm now 36) and I had to get my adenoids removed and tubes put in my ear (to widen the eustachian tubes so I wouldn't get as many infections). When a doctor looks in my ear the first thing he/she says is "You have a lot of scar tissue" and they say my ear looks "milky" or cloudy. Does having these issues as a child cause dizziness and other ear problems as an adult? Am I looking at a long life of dizziness?

2. I woke up early this morning and tried to go back to sleep. I sleep on my side. I noticed I was a little dizzy when I first laid down on my side (either side) but it subsided quickly. Then I started to fall asleep. Within what seemed like seconds but could have been longer since I really think I fell asleep for a moment, I had a sensation of spinning violently. I could have sworn I woke up and opened my eyes and the room was spinning like you wouldn't believe (much more intense then my previous bouts of Labs in the past). It was SOOOOO violent that my heart started beating fast and I felt a little nauseous. Within seconds it was gone. The room was not spinning at all, nothing was wrong except my heart was still beating a little fast from the scare.

My husband said I just had a "waking dream" and he has felt the sensation of falling even after he felt like he was awake but in reality he was just coming out of "dream land" as he puts it.

Do you think this is a possibility? The spinning did go away immediately after I had rubbed my eyes and completely woken up. Very, very, strange indeed!!!


HI everyone: Well there are a few new people so welcome to the site. Nan, we are all thinking of you trying to deal with this beast at the same time as dealing with 4 little ones. Hope this goes quickly for you. Gary, I had buzzing in the ear for a long time, (now 22 months into this illness) but I never had memory problems or anything like that.Just awful dizziness and some nausea. I did have a seven-month good period,so it does get better, but can take ages to go away altogether. I try and be thankful for the good days. Beck, I'm wondering if you have Meniere's too. Have you been checked out? I have Neuronitis (same as Labs except in the inner ear nerve) and yes the symptoms come and go. They can go for a long time, and they can stay for a long time too. But never vomiting or room-spinning dizziness. But the pulling to one side, I had that all the time. Hopefully the CT scan will at least rule other disorders out. If you have balance tests, they help to idetify the specific disorder. It helps to know, because not knowing is hell. Everyone else, hope you are having better days, Sandie and Katie everything okay? Cheers, Maria


This board has been very helpful. I was diagnosed with Labs at the beginning of 4/09. I previously had a history of Menieres, however after seeing the ENT and having caloric testing the asymptomatic Labs diagnosis was given. I took 4 weeks of Vestibular Rehab which I believe helped, probably more in a matter of self-confidence than any real physical change.

My symptoms have changed over the past 5 months but still consist of: Lightheadedness, a feeling of being yanked by a rope tied around my head, muscle tightness in my neck going around and up my left ear and above my left eye, eyes feel out of allignment with one another, left eye feels as though it is being pulled up and to the left. Overall sense of being in a mild trance and sense of physical detachment.

Six weeks ago I decided to visit the ENT again. In that my caloric (dizziness tests) showed asymptomatic elements, I was then referred to a neurologist, who to my surprise and somewhat relief, diagnosed me with having had a mild stroke of the cerebellum. I say relief only because this would put all of my symptoms to a nice understandable cause. By the way, several days earlier I went to my opthalmologist who gave my eyes a clean bill of health.

Last week out of the blue, I stood up and for the first time felt an incredible dizziness (intense vertigo) I collapsed back down in my seat and then proceeded to pass out. My wife called for an ambulance. After they arrived I threw up violently (in the toilet thank goodness) and I was taken to the local hospital for observation and further testing. I took every test there was except a driver's test. MRI, CAT scan, EEG, EKG, echo cardiogram, sonogram for carotid artery, etc. etc. I was seen by Cardiologist, Neurologist (different guy than the "you had a stroke" fellow) and a whole stream of white coated people. I was home in three days and the findings were a vasovagal episode. What brings on this episode is anything you can imagine: sit up too fast, sit down too fast, laugh too hard, too cold, too hot, etc....... The interesting thing is that the second neurologist has doubts that I had a "minor stroke" (MRI, EEG and Catscan all negative). He has subsequently recommended that I see a Neurotologist.

So, has anyone out there had any complications connected to their labyrinthitis such as this (or anything else for that matter). I felt soooo badly a few days ago that simply coming back to my normal "bad labs" symptoms seems like a plus.

Thank you for reading this novelette.


Hi not really sure what's going on with me. I had a ear polypt in my ear and used anti biotics and that's gone. But for the past four weeks I have had symptoms that haven't gone away 24/7. These include the rocking in boat sensaion. I font feel real it's like disrealzation lightheded eyes strain. Seeing colors and circles move down eyes. Tingling all over body. Feeing faint all the time. Everytim I even move I just feel so floaty and have hard time dong anything bed ridden for a month. I'm trying to figure out if this is what I have bc I didn't have the flu or anything just the ear infection. Well 4 weeks haven't improved getting to be scary I'm Only 20 yrs old and understand this will take time I'm trying to do vrt everyday. Had anyone else had all these sypmtoms and have a hard time even moving for a month straight housebound? Thanks guys


Hello everyone! Welcome to all the new people:)

Mon... Have you tryed Ginkgo Biloba? That helped me alot. I also took ginger, fresh rosemary and manuka honey and after about 8 months I was finally symptom free.

Gary... I had terrible problems with my memory. I would tell someone the same story 5 times and have no recollection of doing so! It does totally knacker your concentration and your capacity to remember things. But it is tempory and it does come back. Promise :)

Hi Jeffrey. you're situation sounds pretty damn complicated. Although, I believe that a TIA can be easily misdiagnosed until properly checked out. One dr suggested that might have happened to me and another scoffed at the very suggestion. As it turned out I hadn't had a TIA. It's so frustrating. They really don't know enough!

Brett... We've all been where you are now. You might be one of the lucky ones and be rid of this soon. Most people recover within 8 weeks. The rocking sensation, tingling feelings are all part of it and will eventually stop. Keep going with the VRT and consider trying Ginkgo, it makes you feel half human again.

Maria :).... Nice to hear from you! How are you?

Sandie.... Long time no chat. I hope no news is good news?! :)

Angela... What's your latest? Hope things are going better for you. X

Lots of love everyone

Katiexxx


Well been going for walks everyday for about 10 minutes. It's just so werid because when I do I see circles all over the place and longer I walk I feel lie my body is just going to give out and fall and I get confused on where I am haha. I bought some ginkgo hope it helps. This is a life changer bc now I'm apperiating the abilty to walk and go to work which I can't even come close to right now. Coming into week 4 hopefully see improvments in next coupl weeks you all on here are amazing and this truly is a hard illness and is very scary with all the symptoms from the vestibular system in the brain been reading that it controls your sence of touch and nerves very intreeting things to think about. Well I hope everyone else is making improvments I'll keep everyone posted how I do as time goes on. But just asking I was never diagnosed so is a very bad ear infection possible for this? Thnks


Hi everyone

Katie - you said you recovered after around 8 months, did you have a diagnosis of labs? What were your symptoms and how did they progress. I've had this problem over 4.5 months - off balance fatigue, brain fog, confusion, anxiety at first and muscles trembly and achy, dry eyes and mouth, no official diagnosis from the ENT but I can feel that my ears aren't right. They feel full and kind of blocked inside, more with pressure than with wax or anything. I think i have improved but with such slow progress sometimes you start to question it.

Brett - you sound like you are really suffering at the moment. I can identify with the feeling that the longer you walk the more you feel like you might fall over. I was like that for 2 months or so along with really bad anxiety symptoms. Gradually, I have got stronger and the anxiety subsided. My confidence doing things has slowly increased. I'm at 4.5 months now and still feel weird and off balance but it has got better than it was. It is very scary but I think it helps to know that other people have gone through and are experiencing the same thing. Just hang in there and take each day at a time.


Hi everyone,

Hope everyone is feeling somewhat better. Took the subway this morning, no dizziness, which is a good sign after one month of up and down symptoms.

Jemma, I had the ears blocked thing for a long time. But one always seemed worse than the other (turns out that was the affected ear). Do you have sinus problems? That seems to really aggravate the Labs situation. Glad to hear you are better. The progress sure is slow, but I find the ups and downs are worse. Because you get your confidence back, then all of a sudden, it comes back and you feel you are back to square one. One heck of an illness. Brett if you have not been diagnosed, it's probably an inner ear problem, because it plays havoc with your balance and equilibrium. Hard to believe that something as minor as a virus could turn your life upside down. But because of the location it does. Walking was a nightmare for me in the beginning. You are doing very well in walking 10 minutes. Very hard espceially if you are so dizzy you can't stand it. Sounds like you are doing better. Hang in there, it does get better. Katie, Sandy, hope you gals are okay. Maria


Jemma...

It took 2 different doctors and a nurse and 3 weeks before they confirmed labs. Although the nurse spotted it before the first doctor did.

I didn't have true vertigo in the spinning sense. I had extreme dizziness and blurred vision. This got worse as I lost all ability to remember things, had extreme anxiety,stress,nightmares, obsessional thought patterns,also had terrible headaches about 6 a week,neck pain,sore hair ( if that makes sense) nystagmus, myokmia, -(both eye problems).The ground would never hold still,rocking sensation, different sized pupils. The list goes on and on and on! Right joyful experience :)

After 4 months the worst of the above had pretty much stopped. But is was slow and not as obvious as you might think. I was left with myokmia, which took a further 4 months to go away. I think it isn't that obvious because you're knackered. It's so exhausting being unwell! Takes many months to get you're strength back. I think you can feel unwell for longer because of that.

Hope you are doing ok :)

Cheers Katiexxx


Thanks for the comments folks but I fear something worse now, the results of my first MRI scan showed up "polypoid lesions" on my brain. Waiting to go back for a 2nd scan to confirm this and I don't know if these things are dangerous or even connected with the labs, time will tell.

Glad to hear that people are getting better from this curse of an illness.

Take care all.

Gary.


Hi

I have been reading back through the past posts on here and there was someone called El who posted quite a lot and by April this year was feeling a lot better. Just wondered if El is still reading this site and wondered whether she is recovered yet?

Jemma


Hi everyone,

Maria and Katie, thanks for asking after me!

Katie you are a darling - coming back on here and helping people even though you are recovered! That is so nice of you and helps people realise that there is light at the end of the tunnel!

Maria, you took the subway? That is excellent - keep it up. These things are sooooooo scary when you are suffering aren't they?

Well, I have been quite good lately. I have been to PARIS for a week and had a brilliant holiday!

I met up with my cousin's wife a few weeks ago and she said that she had suffered from the same stuff as me about 20 years ago. She was told by her GP to take Stugeron (cinnirizine) when she felt dizzy. This is a travel sickness pill and I did a bit of research into it and it is actually prescribed for people with Menieres disease, though I don't know what the dosage is. I asked my own GP about it and she said she wouldn't prescribe it because of side effects. The only side effect on the enclosed leaflet is drowsiness though it doesn't list what long term usage might cause. So, I decided that for my holiday I would take one every day and see how I fared. I would rather be tired than dizzy! It was brilliant! I had an excellent time, I was on the Metro system every day, I travelled there by train then eurostar, I was up the Eiffel Tower, I was up the Arch de Triomphe, you name it I did it. My husband and my daughter couldn't believe it! It was fantastic.

Anyway, whether it was the pills or not I don't 100% know but as soon as I came back to England I started to feel dizzy again and my balance went haywire. I have a lot of allergies and it could have just been that the air was different over there. But, since I have been back I have had a few full day outings as my sister has been visiting from down South, and have taken the pills and have been fine. So there you go. I won't take them every day but will take them when I need them!

Brett - you are so young to have this and must be wondering what the hell is going on. Just to let you know that I was also bedridden with this at first for a good few weeks - I think about five - I just couldn't walk properly. I was getting out of bed now and again but my life revolved around my bed for most of that time, mainly because I didn't know what was wrong. My first bout lasted 6 months and horrible thoughts entered my head which doesn't help. Keep fighting and keep going for those walks. I know you feel like you are going to collapse at times but it really is helping you and you will get more and more confident as time goes on. I have had this for over four years now and I still won't let it get the better of me!

Mind you, saying that, I have had to give up my job. I am much better than I was a few months ago but I have decided that it is so unfair that my employers have to put up with me as I have had so much sick time over the last few years. Though I do have good days, I have never been completely free of it and I keep having severe relapses.

Katie - I will be up in Scotland next week! Up to Aviemore in the Highlands! Only going up for three nights and staying in an eco chalet, made from willow! Whatever that might be! So pray for some sunshine for me!

Take care everyone and keep fighting!

Sandie xx


hi everyone. Well today is 4 weeks in and I seem to be getting worse and worse each week instead of better Laying down feels bad for me now. I was wondering I was taking tramadol pain killer for over a year for a soccer accident in legs could that drug ruin vesibular system? Or could ear infection cause this bc I had a bad ear infection I'm just trying to figure out how I got this. Well I keep going for walks but nothing seems to be helpi g I understand this can take a very long time and trying to stay positive. Everyone e starting to get mad at me like parents and girlfriend bc I can't do anything but they don't understand what this feels like to me. Thanks to everyone here I'll keep everyone updated. 4 weeks in hoping to see improvemtns soon thanks guys!


Hi Brett

Sorry you're feeling worse, I've not been diagnosed with labs but I strongly believe I have an inner ear disorder (since April). It started one day feeling off balance and progressed within a week to feeling really off balance, trance like, fatigued, brain fog, couldn't stand looking at my computer at work, feeling detatched, heavy head and terrible anxiety. Had to stop work for a month then returned to do half days, and I am still doing part time now. Over the first month to six weeks the anxiety subsided but the other symptoms were pretty bad. After two months or so they began to decrease a bit and recently I have been feeling less tired. However after just getting hope I may be recovering a bit the last few days I have been really dizzy as bad as ever. I spent today crying and have got really down as it feeels like this will never end. I get so scared sometimes.

I, like you, think a medication may have caused some damage to my ear(s)- in my case the antihistamines I was taking when this started. The doctors both private and NHS have been useless for me and not helped at all which gets me down even more as it feels like nobody cares or can help.

I have been taking ginkgo biloba and green tea supplements - not sure if they help, lots of people think ginkgo does. I have also been doing VRT exercises which i thought were helping but the last few days I have really felt a set back so am not sure now.

Sandie - really pleased for you getting a holiday and feeling better. You deserve it!

Nobody can understand what this is like until they have been through it.


Although Im at month 8 and feeling a lot better, I still get a fatigue feeling in my legs along with a anxiety feeling in my feet and calves. I think the reason is my body is still compensating for the balance issues and my legs have to contract harder to maintain balance. Im am still able to train hard and I think that is what is getting me through this, although there was a time when I couldn't even bend over without feeling so dizzy and off balance it was not funny. But Im getting better and thats all that matters, stay positive everyone..

DC


Hi everyone,

I am going for my first appointment of cranial sacral therapy it is suppose to be effective in helping people with inner ear disorders it was highly recommended...I looked around in Vancouver and found a place that speacializes in this and they said they deal with many cases of people with labyrinthitis and have really helped alot of people...I will keep everybody updated hopefully it helps . Reading previous posts it did seem to help one lady named Lisa going onto my fifth month staying positve trying to enjoy each moment this virus really taught me how precious life is...


Hi everyone,

Jemma, don't get disheartened - you will feel really good and then it will hit again like a bolt out of the blue. It's like one step forward and two steps backwards! This is so frustrating and it does make you feel so upset so don't worry about the crying!! I've cried plenty of tears over this stuff over the last few years but you just have to dust yourself down and start again!

Always remember that what you have is not life threatening and though it does totally control your life at least you still have a life! I think of all the people that are so much worse off then me when I am feeling down and you know it's not that bad. I have lost my job because of it but there is still plenty that I can do! And, that's what you have to focus on - what you can do, not what you can't do!

Keep fighting - keep positive - keep smiling.

Brett - I took tramadol a couple of weeks ago when I did my back in. I only took two and they knocked me for six! Don't know how you can take that stuff - it is so strong. I vomited for hours and will never touch them again! Give me paracetamol any day! Anyway, you are right in that certain medications can cause inner ear problems but I'm not sure if that one would. You would have to do a bit of research on that one!

As regards you actually feeling worse, this is normal with Labs - I started off with the dizziness/vertigo and the balance problems didn't kick in until a couple of months later and the anxiety followed that. As you go on with Labs (if indeed you do go on with it - hopefully you will be fine), you will find that there are many different symptoms which don't all hit at the same time! My last relapse consisted of constant spinning vertigo which I had never really suffered much before so it is a very strange condition. Why don't you have a look at the website www.labyrinthitis.org.uk for which you will find the link at the top right hand side of this page - all the different symptoms are listed there and it is a really good site. Have a look at the guestbook and read everyone's stories!

Brett, I am so sad that your parents and your girlfriend don't understand what is going on with you. The problem is that you actually probably look ok and they can't see that you are suffering. Get them to have a look at the website with you and they will begin to understand what you are going through. This is one hell of a horrible thing to experience and you really do need support from someone.

Please don't lose sight of the fact that you will probably recover from this soon and keep up that walking because it really is helping you. Have you tried the VRT exercises - they can also be downloaded from the internet?

Natasha - this therapy seems very interesting but sounds a little scary. What does it consist of - keep us posted on that one.

Take care everyone.

Sandie xx


I am desperate for answers. I came down with Labyrinthitis just over three weeks ago. A week and a half ago I began to see a dramatic improvement in the unsteady being on a ship feeling. Right when that started to subside I began having terrible sleep problems. Twitches all over and terrible sleep starts with whole body contractions, gasping for breath, a sort of pulsating headache and waking up with my eyes and arms in a tremor (everything appears shaky for about 30 seconds after waking.) I can't seem to make it through more than one sleep cycle at a time when I am lucky enough to fall asleep and then the process begins again with the sleep starts and jerks. I have googled and googled for answers. I live in Canada and am simply not getting anywhere with my doctor as of yet. I actually went to the ER last week because of a profound lack of sleep caused by these things. They pretty much patted me on the head and made me feel like a jackass for going to the ER. I am crying myself to sleep a lot and waking up crying because of these things. I just want to be the normal person I was before.

Has anyone else had these kinds of profound sleep issues caused by their labyrinthitis or is it possible that I actually have had something else from the beginning? It's beginning to feel like it will never end and it's making me and my husband miserable at night. And I'm not the fun mom that I used to be.


Nan in Can, I also had the sleep problems, I would also wake and have full body tremors as well, it seems to come with this condition. Get some magnesium it relaxes the muscles and nervous system, generally you take it before bed for a deeper sleep...

On a side note I have now come down with a flu just as I felt as close to normal as I ever have, I just can't believe my luck, so far it hasn't really made me worse but I feel a little unsteady... Im hoping and praying it does not get worse again..

DC


Hi Nan

When I first got Labs I would have a problem where I would be falling asleep, you know when you are in that comfortable phase just before sleep hits?. Then I would wake up with a start and I wouldn't be able to swallow. This was really scary. It could happen many times in the same night. I didn't have body tremors or anything like that but I think it was possibly linked to the anxiety part of Labs. DC is right in that you should maybe take some magnesium and ever since I first fell ill I have made sure I get all the necessary vitamins etc that my body needs.

Take care

Sandie x


Brett, sorry you are feeling so awful. It is hard for anyone not experiencing these symptoms to understand. Getting out for 10 minute walks is very courageous. I don't think the medicine messed with your ears, most likely the infection.

I have been greatly relieved reading about other people's anxiety symptoms. At least I know now FOR SURE that the Labs set off my bad anxiety. The doctors all assumed that I was just crazy. The tremors in the middle of the night, getting only two hours of sleep at night, tingly feelings, waking up sweating and anxious, this started at two months just as I was starting to feel well. Nan in Can, glad you went to the ER. I also had to get something so I could sleep. Yes the symptoms can change on you after a few weeks/months.

Just had a week holiday and it went great. Somedays I feel 98% recovered (and I am only at 5 months), then other days I go for a walk and feel like a drunk.

One last comment for Jeffrey K. I get that vasovagal stuff sometimes too, but have never passed out. Some reading I did said that anxiety can cause a paradoxical effect and lower your heart rate when you recline. I have had a few episodes of this, starting when I got Labs, never really before. Not sure if this is at all related to your situation, but I wouldn't be surprised if the vestibular system being out of whack caused this, it affects so much, like everyone said. I had bad memory problems the first couple weeks too but they have improved somewhat.

I recently read an excellent book - it won't solve anyone's problems but it details just how IMPORTANT and DISREGARDED our SIXTH sense, BALANCE is. It is called "Balance: In Search of the Lost Sense" by Scott McCredie. If you can find it at your library, please check it out. He also discusses the memory problems that persons with vestibular disorders can have and how no one really understands it....but we sufferers know it is real....


I got Labs from the VARICELLA immunization that i was required to get in order to keep my job at my doctors office. I tried to tell them I had the chicken pox when i was 8... but I couldn't prove it. Ironically, my doctor is an amazing, MD, ND, and Acupuncturist. She treated me for three days in a row with SCALP ACUPUNCTURE and it got rid of 80% of my symptoms and all of the dizzyness!

I suffered for two weeks with severe symptoms, 2 trip to ER, (ct,blood work, ear wash, urine, ekg, rhythym strip) ... and then I got the 3 acupuncture treatments. Those first few weeks I had the whole dizzy, confusion, extreme fatigue, low blood pressure, strange eye movements (i could hear my eyes move...another weird effect)

But after the acupuncture the most severe symptoms were gone. Now I'm left with random episodes of fatigue, fear, concentration lulls, some headaches and eye pain. After reading through this i'm going to get gingko tomorrow and schedule cranial sacral therapy sessions... as I think one of the other docs does that here.

I also had a reiki session and talked to a therapist about clearing chakra energy, which I strongly feel helped a lot too... if anyone's interested in that part, just ask.

It's sort of bittersweet to find this site. Reading all these posts... I FINALLY feel as if someone understands. I'm not alone. On the other hand, all this reading does two things...it's hard on my eyes and concentration after a bit... and it adds a lot of other symptoms to fear that i hadn't even thought of. I know that fear and anxiety are playing a role in the remaining symptoms i have... it helps to read the posts of those who have survived it. So i'm writing to tell mine... I feel as though i'm almost through it... because of the acupuncture mostly. I feel very lucky. Very very lucky.


Hi All,

Some time since I posted and it's been almost a year now since the onset so I felt time for an update;

First of all reading back a few posts I haven't had any sleep problems, as a matter of fact it seems to be the only part of my life right now that is normal.

My "bobble head" symptoms have stayed vitually unchanged over the long term and don't really change much from day to day. I've tried all the herbal remedies and vitamins recommended on this site and haven't seen any change. I have been seeing Dr. Epley in Portland since the onset and have tried several different treatments including a metered profusion into the inner ear with a steroid which again hasn't made any difference. I've been on beta serc for about 3 months now, also without any measured affect good or bad....wondering if we're not "barking up the wrong tree."

Sad news is that Dr. Epley suffered a stroke and will be closing his research clinic which is a heart breaker because Dr. Epley and his staff are the greatest folks and really understand what we are going through.

I've been back at work now for 6 months and even though parts of my job are a struggle I've been able to work through them. I have not been back in a small airplane since the onset and while I feel I could safely fly I don't want to risk it. I have started back racing vintage motocross but really slowed down and fall a lot but at least I'm out hanging with my friends and not letting this POS disease ruin my life.

Since last September I've met 2 people who had labs, one for 18 months and the other for 26 months, both woke up one day and the symptoms were gone so don't ever give up.

Fritz


Hi everyone. Coming into week 5 on Thursday but anyways just wondering about some symptoms I'm having. Whenever I move my eyes in certai. Direction sometimes I feel a sharp tingle threw my body like I'm going down a roller coaster like if I look away at something boom I get a sharp tingle like I said idk what the deal that is. Also wondeing if maybe playing video games like a football game could help with all of this bc concentrating at a ball on the screen or something? With this illness I guess anything g is possible to help or not help haha. I'm seeing a neurologist September 9th so I will see how I goes. Had MRI it was clear. Ent doesn't seem to take my symptoms serisouly and said give it a week well it's almost been 5 so hope neurologist is more helpful. I've never had any labs test done so I think this is what I have since I have all these crazy symptoms but there 24/7 and really affecting my life bc I can't really do anything at this point but trying to stay positive like all of you. Been shooti g some hoops and playing catch with baseball last couple days. Forcing my self to do things in hope my brain Leans faster. Only way I can think I got this is I had a ear polypt in my ear and a infection went untreated for over a year the ent said so I think I must have tons of damage but antibiotic cleared infection. Well let me know about that eye thing if anyone else gets that thanks everyone will keep posting as each week passses take care


KC, DC and Sandie, thank you so much. It's so comforting to know these sleep things are not just me! How long did the crazy sleep issues last for you? Did they eventually fade on their own? Did you have to take meds? I started taking magnesium two nights ago. I'm guessing it needs to start building up before it really helps... Thanks so much!!


Nan, I think it took me around 4-8 weeks for all the weird sleep things to stop, but with me one symptom would subside then another would start, thats what is so draining about labs.. But another thing I done was acupuncture and massage 2 times a week for about 6 months now, its been expensive but I feel better every week and have started to have days of feeling almost normal. On top of the magnesium I also took Gingko and a multivitamin, another thing I really felt that helped me was exercise, it took me about 8 weeks to start exercising but it did make me feel better..

DC


Thank you so much DC. I'm up here at 2 in the morning, crying my eyes out. My husband seems mad at me every night because he thinks I'm fighting sleep or the sleeping pill that I was prescribed that isn't working worth a bean. I just want this to go away. I'm getting so discouraged and depressed. Thank you for your encouraging words.


Hi everyone

I too am so discouraged at the moment. Over the last week my dizziness has gone really bad. I am now feeling so off balance and it is scaring me to death. I thought I was improving a bit but now I feel like I'm going backwards. I dont know what to do because it seems that the doctors cannot do anything to help. They can't even work out what's wrong with me. Im so terrified this will never go.


Hi Nan

My symptoms while falling asleep lasted for several months and I have not had a reoccurence since they went away.

Please try and keep away from using medication as they do not help your condition and it really is a matter of time before this will get better for you. Even if, like me,you never get rid it is better not to have to battle with getting off the meds they will give you. I was offered anti depressants but there is no way I would ever get involved with mind bending stuff like that! Sorry, if I am being self opinionated but they really do not help. Your brain needs to be able to deal with this on it's own and it is never going to do that if it is being 'numbed' by these drugs. On the other hand I do agree with changing your lifestyle - i.e. only eating healthy food and ditching all the junk and supplementing with vitamins etc. Nan, please don't get upset, you are not alone with this and it will get better. Small steps is the answer - try and do little things and praise yourself when you accomplish it. Stuff everyone else, and concentrate on getting better.

Don't be afraid to pour your heart out on here - we are here for you.

DC - you are so right - there are so many different symptoms with Labs and they don't all hit at the same time! And, exercising is so good, especially walking. It is really exercising your brain as you are making it take in loads of different stimuli and it is good to look around while you are walking and not just concentrate on looking at the ground which is what most of us with Labs want to do!

Jemma, the doctors are absolutely useless when dealing with this. You have to take it into your own hands. Apart from VRT there is really nothing else that they can do and everyone who goes through the ENT etc end up with the same VRT exercises. So really they just go by your symptoms. The balance thing is very, very scary and I suffer from that a lot. But, try not to worry about that too much because it will also get better. It is happening because your damaged inner ear is sending dodgy signals to your brain and your brain can't make any sense of it. We need all our senses to work properly to keep us upright and when your inner ear isn't working properly your sense of balance is severly disrupted. For me, since my ear has been damaged, allsorts of things now affect that i.e. allergies, viruses, hormones etc and it seems it is never going to end! But I still have a life that is worth living and that's what I hold on to! Positive thinking! You will win in the end!

Take care

Sandie xx


Thanks Sandie. I guess I am just so worried because I felt a slight improvement then it got worse again and after nearly 5 months I am starting to think it could be something else or that it will never get any better. I hope you're right and it does improve, its just such a struggle getting through each day x


It's so frustrating. I do eat healthy and take vitamins. If I could get more than 1-2 hours of sleep a night without meds I would be happy to turn them away. I hate being on any meds. The dizziness is pretty much completely gone but the sleep problems are unbearable. I cry half the night because this feels like seizures every time I start falling asleep or waking up.


Hi, i have been down with possible Labs for the last 3 months, and this pulsating headache is really annoying me. I have had a CAT scan and that came back clear. Does anyone here gets a bad headache along with their symtoms?


Hi Mikey

I don't really get headaches with my symptoms, its more just fatigue and off balance, feeling strange headed and trance like. However I did find that ginkgo biloba which is meant to help with ear problems gives me really bad headaches so now I can only take it ocassionally if at all. Are you taking anything that could be causing the headaches?

Jemma


Mikey...

Headaches are normal with labs. I had about 6 a week for months. So don't worry about them, it's all part of it. Ginkgo never gave me headaches, if anything it helped to stop them. Each persons symptoms will vary from the next. Drink plenty of fluids and try and eat as much fruit and vege as possible. You will eventually get rid of them.

Cheers Katie XXX


Hi everyone: sounds like some of you are having a really rough time. It's so hard to figure out this illness. So up and down, I just don't get it. Jemma and Nan: we are all here for you, we all know how frustrating and discouraging this can be. I still cry tears of frustration, because although it can go away for weeks (and even months) it always comes back! You can't help but feel there is something else going on. I still can't believe this thing can cause so many problems. And so many symptoms. Today I felt nauseaous and dizzy after 2 clear weeks. No warning, bam here I am! I also find that my stomach feels unsettled when that happens, whether that's related, I don't know, but it always happens. Does anyone have flu-like symptoms, that come and go along with the dizzies? I seldom get headaches, but I have a splitting one right now. It's gotten quite hot, that may be the reason. Sandie, so nice to hear you had a wonderful time in Paris. I lived there for 6 months when I was young, and absolutely adored it. I speak French so that helped. I envy you being able to hop on a train. I would have to fly for 7 hours, and at the moment I am hugely anxious about taking a plane, especially for that long. Maybe next spring. This setback has been on and off all summer, and is very disheartening. I thought I had turned the corner in the winter and spring when I had 7 dizzy-free months. But you are right Sandie, when you have a bad setack, it can take a long time to get over it. Jemma and Nan, have you been diagnosed with Labs yet, or haven't gotten there yet. It will get better, but unfortunately, recovery isn't linear. Peple around me are getting tired of hearing about it, but no one is more tired of this than me. Going on 2 years. love everyone, you are not alone. Maria


Hi, thanks for the reply. I reserached into Gingko, but because it thins the blood, it will make my headaches worse : ( Nothing im taking should cause the headaches. And recently they only come and go throughout the day instead of constantly headache brain fog like. Its hard to explain to doctors how I feel, because there are so many dizzy, brainfog feelings. Hopefully this will go away soon. I feel for everyone who is suffering from this, so strange how it can turn everything upside down in a day. I am staying positive tho, as i know how i felt the first 2 weeks compared to now, it seems i have come very far. But as Jemma says aswell, its so frustrating to go back 1 step when you have taken 2 steps forward.


Hi Maria

I haven't been diagnosed with anything yet. Blood test fine, hearing test showed slight loss in left ear. Caloric test was fine. Doctors don't know what's wrong with me so I am just supposing its an inner ear thing based on my symptoms and peoples' descriptions on here. I cannot think what else it can be. I have been really dizzy and exhausted this week. More than ever really so am going back to my GP. I don't really know what else to do. It's nearly 5 months now and still no better or further on. Very depressing and worrying. I can't face a life like this.


Oh Maria,

I have just realised it is you! I have been talking to you for the last month or so and not realised it! It is you isn't it, who used to post and talk to me and Katie last year?

I was thinking of you a few days ago and wondering how you were and then came on here today and there you were!! Dooooooohhh, how daft is that.

Really though I am sorry that you are back here after so many good months. That is what it has been like for me! I am getting back to being able to lead my life again but I still have days that are not so good.

I'm off to Scotland tomorrow and the forecast is dreadful, it's like flaming winter here! I have the central heating on today and I don't usually feel the cold!

Maria, you are so right that people around you get tired of hearing it. So much so that you feel like a fraud yourself when you are telling them again and again! You get sick of your own voice! It can be a lonely illness but never give up girl!

Sandie xx


Hi everyo e week 5 today and wondering if I have labs or something else bc is it normals to have these craZy symptoms 24/7 without a break for 5 weeks ppl talk about good days and bad days but I have yet to have a good day been trying to do things but very had my body feels like I'm notin it and very uncomfertable feeling. Well hope to get better soon but it doesn't seem like itbqill be anytime soon take care everyone. I have neuro appointment Wednesday maybe they can shed some light?


HI Sandie:

Yup, it's the same old me that used to yak to you and Katie last year. This site helps me a lot, because sometimes I think I am losing my mind. Very discouraging, especially after so many good months. But like you Sandie, my labs tends to act up when it gets hot and muggy. Yesterday it got hot and muggy, and after 3 very good weeks, I relapsed again. Today is very hot but I am staying indoors. And the humidity makes me congested which then affects the illness. You and I have similar symptoms and similar patterns. I don't stay as optimistic as you, tend to get cranky when it acts up again and again.Hard to plan things, everything seems to be dictated by this illness. I found out about a Vestibular Rehab place and got an appointment for a week Monday. one hour and a half appointment. Apparently this physio only does vestibular stuff so she may shed some light on the situation, more than the docs, who tell me you have Neuronitis and you will have to live with it.

Jemma, honey, we are there for you. It is depressing and worrying. I know you said your caloric test was normal, but why else would you have some hearing loss? Did yours start with an infection of any kind? Is yours an up and down thing, you know good days, bad days. I just can't think of what else it could be, although I am not a doctor. Although let's face it, they don't seem to know much about this disorder either. I have often felt that I don't want a life like this either, but mine got a lot better this past winter and spring, so that gives me hope. Maybe because of the heat, I won't have such great summers. I have learned to try one day at a time, and am very grateful for good days.

Nan, how are you doing? Any better with the sleep? Of course you are going to be overwrought if you don't get any sleep. Have you tried reading, a book or a magazine. It's hard when you get into a cycle to get back to normal again. Thinking of you.

Everyone else, hope you are having better days.

Take care, Maria


Hi, thanks for reply. I might try Gingko, i've heard it makes headaches worse as expericend by Jemma, because it is a blood thinner? I cant believe how in 1 day everything can turn upside down. I always stay positive though and go for walks everyday. Lucky for me, i dont get the spinning room sort of dizziness. But more of the marshmellow feet, although, even that has gone now. Its more the brain fog and in a dream like state that bothers me. Im not complaining too much, considering i have come so far compared to my first 2 weeks.

And Brett, yea i had 24/7 symptoms for around 4 weeks without any good days. Hang in there buddy. Because once you expereience 1 good day, you know there is hope. It is the hardest during the first month (for me anyway).


I have been back to my GP - had another blood test. Don't think it will show anything! I really am at a loss. I'm 5 months in and still feeling so dizzy and strange. It is worse than last month and I just dont think it will ever get better. I'm so disheartened especially not knowing for sure what is wrong with me. It is making me seriously depressed.

Brett - have you seen an ENT or did your doctor just refer you to a neuro? Have you had any scans or anything?

Jemma


Jemma,

5 Months is really not a long time... I know it does seem like a long time, but in the whole scheme of things its not... It took me some 7-8 months just to get some good days... and about a year to feel somewhat better on a daily basis.. I still get relapses constantly but so far I have been almost 100% between those relapses.... It stinks, but it will go.. just try and keep positive.. I know an Anti-depressant may help atleast keep you in a more positive mood while struggling to deal with this.....

Sam


I saw a ent I had a ear polypt in my ear huge infection but I got rid of with antibiotics no eng done he just laughed at my symptoms saying oh some people drink to get dizzy. Went to gp had MRI and have mastoid on left ear. I think this is what I have inner ear infection but the symptoms are crazy it feels like my body is paralyized half the tile hard to move and it's just a uncomfertable feeling being in my body I have these crazy symptoms 24/7 never a time I don't have them I think there's a huge problem with my vestibular system. Been trying to do things slowy everyday but as the day goes on I feel worse and worse and feel like I'm on a bad acid trip or something idk 6 weeks in praying I get better soon I'm losing everyone in my life blah.


Brett,

I know its rough.. especially at where you are now.... 6 Weeks is not necessarily a long time however statistically, you should start feeling better soon.... Noone knows exactly since everyone is different... but you have to try and hang in there. If 6 weeks is enough to lose everyone in your life, what does that say about the people in your life. I have lost alot of people in my life, but the ones that are still around ae the ones who really mean something. This is a tough illness as you already know... but try and get moving.... and keep positve.


Well I went to neurologist today and says I def have damage to vestibular system and is sendin me to vrt which I hope it works out. And Sam I know what younmean 6 weeks isn't long to lose everyone but the people in my life are just like come on you feel fine you look fine let's go to the movies. Dads like come back to work now (which is 9 hours a day ) and I just can't do these things and they don't understand and now there like you must feel better now it's been 2 months how's it possible. Just not supportive I guess but I'll let everyone know how vrt goes


Brett,

I see, that can be hard.. This is the invisible illness you know... its very hard for people to see whats going on or what your feeling, hence why us labs ppl always get sent to Psychs... I think your going to have to try and explain to him the symptoms that your having... or get him some literature on the illness...... noone will ever understand completely unless they go through it... Its like the worst hangover ever that doesnt go away...


Hi Brett - How did the neuro diagnose the vestibular problem, did you do the caloric test? Have you had any scans? I think I might have to demand a scan as I don't seem to be getting anywhere and my dizziness is so bad right now I think there must be something else going on.

Sorry that you aren't getting much support. My boyfriend and my mum have been great. If it wasn't for them I don't know what I would have done. At least if you have been diagnosed with something then your family can't dispute it exists and as people say perhaps show them some websites and literature on this to let them see how bad it is. When something goes on so long you do start to feel that people will doubt you. I get paranoid about that but it's just a case of getting through each day right now.

Take care everyone


Hi all, Hope everyone is feeling somewhat better. After a bad week, I went to my GP to complain and he has put me on diuretics for 2 weeks to see if maybe there was some residual fluid build up. He says sometimes it happens in cases like this, and it's worth a try. Anyone else try that. I remember someone on this site had tried it and felt better. I feel much better, but this illness is nothing but ups and downs, I'm not holding my breath.

Jemma, any improvement in the symptoms? It will get better, it just takes time, and unfortunately there are lots of ups and downs. That's the worst part. And so unpredictable!

I made an appointment to see a vestibular therapist next week. $150 for 90 minutes. We'll see what she says, apparently she does nothing but these disorders. Will keep you posted.

One day at a time eveyone

hugs, Maria


Hi Maria

I'm still really dizzy. Have been worse for two weeks or so now. I feel a bit nauseous at times too recently. I feel like there is something going on inside my ears - I dont think it is labs but I do feel there is something wrong in there. I am very dried out - eyes, mouth etc and I think that the fluid in my ears may have been affected and this could be causing it. Not sure really. That's why I want a scan so they can check this for me. It's just so scary being like this 24/7.

Hope the VRT goes ok.

Jemma


Hi all,

Going through a rough spell at the minute, almost as bad as back at the start. I went to see a 2nd ENT and he put me back on Serc 3 times a day for 3 months and told me to go back to see him in 4 months. He did a hearing test (which my private ENT who I paid nearly €200 for 10 minutes work didn't do) and there is a bit of hearing loss there alright. Did Serc work for anyone? Did it help with tinnitus? Did anyone take it and ginkgo together? My left ear is buzzing constantly and I have bad brain fog. Am a bit skeptical as it didn't work before although the ENT says you need to be on them for weeks even a couple of months to see the benefits. He also said to go for an MRI scan on my inner ears, the last one was a brain scan and am waiting on an appointment on a neurologist to discuss that scan.

Ok thanks for reading folks and I hope you all start to feel better soon.

Gary.


Hi

Maria I am very interested to see what this appointment brings for you because as you say, mine and your symptoms are very similar!

I've had a rough couple of days but not to bad on the grand scale of things. I'm just getting this feeling that the world has moved but it is only lasting for a couple of seconds. This is one of my more scary symptoms and I will never get used to it.

Gary - I have a friend who has menieres and she has been on serc for a long time. She says that if she forgets to take it she knows about it! So I guess it does work for some. I have another friend who has tried it for a long time and sees no benefit. I cannot take it myself because I have asthma and it is not recommended for that. You have nothing to lose by trying it so give it a go!

Take care everyone

Sandie x


Well the neuro saw MRI and everything was clear execpt a mastoid which isn't the problem. And her doing basic balace test like march with my eyes closed in place well I ended up on the other side of the room without even knowi I opened my eyes and was like how did I get over here haha. But anyway she says my symptoms are more likely from a vestibular problem and I'm going to have a eng and go to vrt. She explained about the vestibular system and if it's damaged all the wrong signals are going to your brain and your brain doesn't know how tonreact that's why I never feel like I'm in my own body and stuff haha. Been 6 weeks today and I'm excited to start going to vrt bc all the success I've read. I keep telling myself I'm not going to die even though it feels like I'm about to and not going to Faint so just get up and play more basketball haha. Also have another ent appointment bc I think my ear infection is coming back which damaged my vestibular system in the first place wlell I'll talk to all of u soon have a great day


Hi everyone: sorry some of you are still having problems. I'm feeling better, and I should be grateful for that. I don't know if the diuretics are doing anything,worth a try. Will keep you all posted on the visit with the physio. I have benefitted tremendously from knowing about other peoples similar experiences. I might even bring a notebook and take notes so I can pass the info on to you all (if she says anything intelligent, that is)! Sandie, sorry to hear you have been a bit rough. I asked the doc why do we feel so rough when we have a relapse, he said everything is just much more sensitive, and the damaged nerve is very sensitive as well.

Jemma, if you are nauseous, have you tried sea bands. They are a kind of accupressure, and they help with motion sickness. You know, I had tons of ear problems during the first year of this disorder, fluttering, slight earache, I think it very much is a symtom of this illness. And sore eyes also a problem. But let's hope your scan sheds some light. A long time for you. Do you have any respite from the symptoms or are they non-stop. I always feel better when I lie down, probably because the body doesn't have to balance itself.

Gary, sorry you are also having a rough time. I did take Serc, but only half a pill twice a day, and I took it for a few months. I did notice that it helped right away. But because I took so little It didn't help that much. And last month, when I had a very bad relapse, I took it for two days, and again symptoms improved somewhat. I will be interested to hear how it works for you. The specialist told me (even before I had the tests) that he knew it was an inner ear disorder, because the Serc helped. how long have you had this Gary? I didn't know they could do an MRI on your inner ear. Interesting. Brett, it's good that you got a diagnosis and that you know it's not life threatening. But coping with the symptoms is really tough. I often felt in the beginning that I was going to die. How can such a small thing cause so huge problems?

hugs everyone, Maria


Sandie - Thanks for the info. This latest low point has happened at the same time as starting the Serc again, whether it's a coincidence or not we'll see. I'll stick with it for a while.

Maria - I've had what was diagnosed as Labs by a GP for 8 months now, but am getting differing opinions from two ENT's so it's kinda confusing, they both think it's inner ear alright, but the guy I saw earlier in the week doesn't think it's labs and said to be to get an MRI done on the "Internal Auditory Meatus" - I'd never heard of it before but it's there alright http://en.wikipedia.org/wiki/Internal_auditory_meatus whereas the scan before was a brain scan. I guess it's to check for tumours and stuff like that. I totally agree with you though, this thing does cause huge problems and changes your life totally.


Hi Everyone on this life saving site!

I have had this nightmare since June this year. Interestingly, my dizziness started after a 48 hour stomach bug back in May. Although, I felt fine, the dizziness continued and increased. Then in June, ear ache, ear fullness, then following day WHAM! Pressure in my head like a balloon being blown up, ear pressure, no spinning but giddiness and unsteadiness, sickness, and week later a chest infection. Was in bed for nearly a month and the panic and stress from not knowing what is wrong with you - horrendous. So many different symptoms, headache, stabbing pains on top of head, eye dysfunction. I wear varifocals - have changed to single vision. Pressure build up changes daily, marshmallow fills my head, not as if I am in the real world and so on and so on. I could carry on, but you all have written what I’ve been experiencing. Have had MRI - clear, NHS doctors said it was tension headache!!!!! NHS ENT appointment October 20th !!!!!!!!! Have paid a fortune to see private doctor. Eustachian tubes blocked - so don’t know if that is causing the problem or it’s part of it. Three months in, but from all accounts this seems to be a short time! Have cried until I’ve got no more tears - feel so desperate. Take Serc - helps a little - sometimes. Drink loads of ginger tea for sickness as don’t like taking Stemetil as I understand this hampers the compensation the brain makes with balance/vision. Bought some daytime Valerian for stress from Holland & Barret - this helps to relieve the tightness in my head. Anyway, bless you all for helping me to keep a little sanity in this hell. I’ll keep posting. Start Vestibular Rehabilitation Therapy next week - exercises that make you feel worse initially, but then are supposed to help quicken recovery time - anyone got experience?

Take lots of care Love Gloria x


Hey Maria, you better take that notebook with you, I am really interested in what the physio has to say!

Like you, I always feel better when I lie down and have never had many problems while sleeping, only in the early days.

I also agree with your GP in that we are now more sensitive to things and that is why we have relapses - I swear if I got rid of my allergies I would be much improved - if not cured.

As you know I have suffered from this for fouor and a hlf years but my relapses have never been as bad as the first time.

I too do not think you can MRI the inner ear as it is too deep and I heard that the only time they could actually prove 100% that you had inner ear problems was if you were dead and they did a biopsy (autopsy or whatever it is). I am sure though that they can get other information i.e. the state of your sinuses etc and are really just doing it to rule out other things.

Take care and hope you are all having a better day - one step at a time, keep fighting!

Sandie x


Hi everyone

Maria - yes my symptoms of dizziness are there all the time except when i lie down - its the only relief I get. I feel worse indoors than outside although I am constantly off balance and/or dizzy anywhere. Its driving me insane!

Gloria - sorry you are suffering. I too have spent hundreds on private ENTs to get nowhere. I going again tomorrow and hoping they refer me for a scan as I just dont know what else to do. I think I might have a problem with the eustacian tubes and I can hear a crackling noise when I move my jaw. How was yours diagnosed? Is there anything they can do for that if its making you dizzy?

Anyway, take care x


Jemma,

When I first got this.. Even laying down for me was a chore.. I felt sick every which way... I would force myself to pass out... What I am saying is that.. Do you remember if initially you felt sick while laying down.. and has that dissapated?

Any others out there have constant relapses.. I got this one on June 2nd and it still plagues me... I am not sure what is going on.. I keep getting sick.... I feel miserable.. Just waiting for this thing to end and I sure hope it goes soon.. I am losing my mind.


Hi there, just found this site. I've had this since May, so about 4 months now. Still waiting for a referral letter from the ENT at the hospital, can't believe it has taken them so long to get me an appointment. Meanwhile I've lost three months of my life to this thing! It really is helpful to read about everybody else going through the same, as you feel like you've really gone mad. For the first month or so I thought I had a problem with my brain as I just couldn't remember anything or perform tasks, and on top of that the whole world was spinning and dizzy. I also find that vision is more blurred in my right eye.

Anyway, I'm going to a homeopath and counsellor as I have some other hard emotional stuff to deal with. And I was wondering, has anybody had any success with homeopathy to get rid of uncompensated labyrinthitis? The guy says he has had patients who've got better with it. I also wanted to ask if you feel there has been stress in your life which could be related to having this for a long time, because the body is definitely something WHOLE, connected to our emotional, mental and conscious being, whereby physical problems are usually a manifestation of inbalance within our SELF.

Love to hear your response Keep going everyone, Emily


Hi Jemma

Lovely to get your reply. It’s great to have others that know and understand what you’re going through. My husband’s been great, but bless him, he doesn’t know how to handle this wreck of a woman- especially when I get so panicky! When I went to see the ENT consultant the first thing they did were 2 hearing tests. One for level of hearing (apparently with Labs you’re hearing goes-not so much in my case though). 2nd test was to test ear pressure - left ear way off & also my right ear which I thought I wasn’t having a problem with! As the MRI didn’t show anything sinister or any fluid in my left ear, they said it was eustachian tube dysfunction, but I’ve been getting all the Labs symptoms too. Gave me hydrocortisone nose drops to take for 6 weeks and referred me to Vestib Rehab, but am not convinced. Today, my left ear & head feels full with so much pressure which seems to make my dizziness worse & a tight tight band around my head. I go back next week to see consultant and will ask if there is anything they can do but the previous person said it will clear on it’s own- WHEN?!!!! Also, I want to ask for other tests I’ve heard of, the Caloric test , ENG &VEMP?? Any ideas to these? This week I feel like I did right at the very beginning. Just when you think it might be going in the right direction talk about Snakes & Ladders!! I read you took Gingko - I’ve just started but read it takes a couple of months to have effect? I’ll keep you posted Jemma, but let me know how you are doing. To everyone - I find huge comfort to read all the different symptoms and comments - one which is typical of this thing & I’m experiencing is the profuse sweating in the early morning followed by shivers -sooo weird! Plus I wake up feeling quite sick. Ginger tea at the ready!!

Take care everyone Luv & hugs & hope for better times for all of us Gloriaxx


Also, just wanted to ask if anybody has advice about flying with labyrinthitis? I'm due to go away in about a week and a half but just don't know if I can cope. And I've heard it can make things a lot worse. Thanks, Emily


Hi Emily, I seem to be living on this site at the moment as it is the only place I can get comfort. Even the ENT specialist I’ve seen has not been aware of all the symptoms I’ve mentioned - even though it seems we have all had them in varying forms! Perhaps doctors should read these sites!

You may be right to some extent about the stress factor. Although it has been 3/4 years but I looked after my mum for a few years until she died in 05. This seemed to have an exhausting effect on my immune system. The last year or so I’ve had flu, bugs, viruses etc which I’ve never had before. Like you I do prefer to try the natural route which is why I take Valerian to help calm me down & seems to help with the head pressure thing & find drinking ginger tea good for nausea. Had to cancel a weeks hols as not only felt not like going but didn’t want to do the flying thing. Read somewhere, though, that if you have had Labs, flying should be OK - don’t know though. Keep us posted about the homeopathic treatment - desperate for any relief. Take care Gloria x

Hi everyone, To those of you who are struggling with people in your life who don't understand what you are going through, there is a website www.labyrinthitis.org.uk which has a page called "I know someone who's dizzy" which I actually gave to some of my friends for them to understand better what was going on with me and it really helped. Take a look and see if you think it might help you.

Good luck to those of you who are starting VRT - I found it really helpful and as my therapist only worked with inner ear patients, she was the only person I came across who had a really good understanding of inner ear disorders - unlike the ENT or neurologist.

Emily - I flew several times when I was unwell with labs and had no problems.

Just wanted to send some understanding and support to all of you who are suffering with this. My labs started about last October and lasted several months. I am pretty much back to normal now apart from feeling a bit dizzy and off balance sometimes. I understand completely your feelings of fear and anxiety when you wonder if it's something worse and when it goes on so long you don't know when it will end.

Take care everyone! Cathy


Ok, I have been suffering from this for 9 months now and I am finally feeling like I am getting my life back on track, like Cathy I only feel slightly off balance and dizzy sometimes. All I can say is this Labs is a roller coaster ride, it has been a real test of mental strength for me and if anything positive is to come from this I will be stronger for overcoming this, also I am now much more conscious of my health and my diet and exercise regime is much more strict then what it used to be. Stay positive everyone there is light at the end of the tunnel.

DC


Sandie and Maria :

I posted something yesterday but it mustn't have made it through as I posted a wikipedia link with it. The area the ENT said to get MRI'd is called the "Internal Auditory Meatus", if you look on wiki you'll see it there. I hadn't heard of it myself, but tbh, I hadn't heard of labs either. My ENT wouldn't have told me about this if he didn't think it could be done.

Gary.


Hi Gloria

Sorry you are having such a rough time, like me. Glad your husband is being supportive though that really helps. You feel so alone with this thing like you cannot enjoy life like everyone else can. I went back to the ENT (private) today and he said my vestibular testing was all normal. The only thing they have found so far is a discrepancy in hearing between left and right ears. He has referred me for an MRI scan of brain and inner ear in case it is a swelling of the balance nerve but he does not think it is. He said if nothing shows up then I would need to see a neurologist.

I am just praying something shows up because I don't know what I'll do going on like this not knowing what's wrong with me. Will have to wait a while for scan anyway because it's being done on NHS as can't afford it privately.

Hope you're all doing ok today.

Jemma


Hi everyone,

Well, not had too bad a day (bit of a first)- mind you that means rubbish morning but a fairly better afternoon (3/4 hours) - still not great but grateful for even a slight hint of normality. Made it to the hairdressers at long long last - had started to look like a mad scarecrow! Only thing, at my hairdressers, they have those barber chairs that you press to go down & raise up - not good!! That said, today have developed some tingling and numbness and a stabby pain in my eye. Others on this site have reported similar - so at this stage I think, whatever, just hit me with anything, I’m so so fed up with it all.

Jemma - doesn’t it make you feel outside the crowd - I haven’t gone out or socialised at all since this, other than with my family. Have had to give up work for a few months but don’t know how long they’ll wait. Given me ’til December.Hopefully, you won’t have to wait too long for scan - I think on NHS it’s usually about 3/4 weeks. I had one for my back a little while ago. When you went to see ENT, did they do the test to see whether your ear pressure is normal? They just stick a thermometer thingy in your ear for a second or two & then it gets printed out on a sheet of paper.

Cathy - thank you so much for your support and comments. Was last October the first time you had Labs or have you had reoccurrences?

Take care Gloria x

Hi Gloria, October was the first time. If I pick up another virus or am exhausted etc I do get a bit dizzy/unbalanced but nothing too bad. I sympathise with the tingling/numbness as I found that really worrying but it did eventually go, although it persisted for a long time! Anyway - hope you are having a good day. Cathy


Hi everyone,

just an update on the homeopathy and counselling. Gloria, I think there may be something in what you said about your immune system being run down after a difficult few years. I have had a tumultuous couple of years emotionally and physically, having had a baby whilst living in a difficult place and an abusive husband who didn't help and also expected me to look after various members of his family for months at a time, and we have also moved house twice during which I did most of the work. I have been so exhuasted and just had to keep going throughout all of this, and as soon as all of this was over I have been ill for 4 months. It's not really a surprise. The homeopath says they view the body as a whole and that all of these factors definitely count, as the person is living out of harmony with his/herself. For me it is definitely a journey about change within myself as I am forced to slow down, because of being more at home and looking at my own behaviour, and monitor how I am living my life and how much or little to take on. When to say no, essentially, and not be so accommodating to things that are beyond my limits. This guy is a counsellor as well as a homeopath, and I think he's very good. I definitely notice the dizziness gets easier when I'm talking to him and all of this inner turmoil is coming out. Have seen a definite improvement this week even since I wrote, and I'm sure it's to do with the homeopathy giving me a renewed vitality I can actually feel, and the on-a-ship feeling is definitely reduced. Talking about my stresses has taken away so much burden that the dizziness doesn't seem so bad. Would defiitely recommend trying it if you can find a good homeopath or counsellor that someone recommends (they can vary I guess, just like doctors) as I can really see that these physical issues are related to inner balance. It does take a while for the homeopathy to kick in so you have to bear with it a few weeks first. Have now got an ENT appointment at end of October, but I'm feeling so much more positive since the last few days that I will keep going with homeopathy and try to crack this thing. Still haven't decided wether to fly or not. Sorry for writing an essay! Emily


So after recently getting the flu, the symptoms have come back in full force. Although without the anxiety, as i know what is to come or expected. The hardest thing i find is the invisibilty of this illness to others. People just will not understand how hard it is to live with this illness unless they have had it before. I think i have grown in character through this illness and have come to take nothing for granted. Getting blood test on Monday and hopefully get down to the bottom of this soon. Its been 4 months already, not long compared to some of you on here, but damn it feels much longer.

Emily, i have flown 3 times with this illness and its been fine so far. If its a long haul flight, maybe you want to get a indirect flight instead to break up the journey. You also save money that way too.


Hi Gloria,

Welcome! Had to say that you mentioning the hairdressers is typical of this disease! I have not been to the hairdressers for over four years! Oh, I do have my hair cut but I have it done at home. I did try to go a couple of times in the early days but had to come out with wet hair because I just could not bear to be in there! So don't worry about that one - I don't know what it is, maybe the heat or the atmosphere in there but lots of people with Labs can't bear it!

Emily, I too was quite stressed out before I fell prey to this illness. I was working full time and doing everything in the home for years before I got it and I really wasn't taking good care of myself. My diet was terrible! Since I fell ill my husband started doing his fair share and started to make sure he cooked a good meal when I was working and I cut my hours at work. So, yes I do believe that this all contributes to actually getting this virus in the first place.

Gary - yes your post did get through - just I haven't been on the board for a couple of days, just catching up now!

Have had a look at the link and this is the Temporal bone for which your consultant is looking for lumps, tumours or anything that is causing your symptoms. They cannot actually scan right into the inner ear as it is deep inside your head but are just wanting to put their minds and your mind at rest that nothing else is wrong.

I was offered an MRI a few months back and it said on my letter 'scan of the Temporal Bone' and my consultant told me he was just wanting to eliminate anything else. So, I am such a chicken, and did not want to go inside the scanner that I declined to have it done. I have suffered so long with this (four and a half years) that I know there is nothing sinister there!

I have been diagnosed with Vestibular Neuronitis which is very similar to Labs. I got this diagnosis because I have problems with my balance and the consultant decided that my balance nerves had been damaged which are apparently just outside the inner ear. Lots of people who are diagnosed with Labs have slight hearing loss, like you, but I didn't have any hearing loss.

Saying all that, I have no confidence whatsoever in the ENT, as they did nothing to help me and the GPs are useless as most of them do not understand the way this thing works.

Hope this helps.

Take care

Sandie x


Had another bad day, symptoms aren't much different but just so depressed, cannot stop crying. I find myself crying in public places because I feel so strange with this and I try so hard to fight back the tears but people must think I'm crazy when they look at me.

Gloria - do you work in an office? sounds like your employers are quite understanding if they have given you until December. Mine basically said after 3.5 weeks I would be on SSP so I went back to do half days. I am currently doing 9am to 3pm but its a real struggle to get through it and I feel so dizzy and tired and cry everyday when I get home.

Everyone tries to tell me I will get better and it's nothing serious. But my biggest fear isn't that this is serious in itself just that I will go on and on feeling bad with no improvement and nobody who can tell me what is wrong with me. I feel like my life won't be the same again and it just so hard to take.

Emily - glad you are having success with homeopath . Do you manage to work or go out with your symptoms at all?

Take care everyone x


Hi everyone. Last Feb i started with a a cold which seemed to clear very quickly but then i suffered vertigo at work . Suddenly out of the blue i could hardly stand. I had had a little popping in my ears due to the cold and they kept plugging so i kept popping my ears to clear them which i think brought this on. At the time i also noticed my right eye was a little out of focus. The Dr. said i had a virl infection and all would be well go home and rest. The vertigo attacks lasted 4 hrs and rendered me in bed until they went. My ears the left one anyway had lost about 60% and kept buzzing and making a sound like a fridge motor running. When my ear cleared itself both ears seemed to be very sensitive to any sound and if enough sound entered my head it would bring on 4 hours of vertigo. I saw many G.Ps who all seemed to fob me off. I went to the ENT (waited 2 monmths) by the time i saw the ent most of my symptoms were over and i was back at work. The ent said i may have had Labyrinthitis or maybe even viral meningitis which is not as bad as bacterial meningitis but still prity rough. I had a brain and ears scan but they came back clear. Presently i feel a little dizzy again after about three months of being well and am told the symptoms can come back from time to time. i think i am a panicy person easily stressed at 44 years old physically i am strong but mentally (i'm not a basket case) but quite sensitive i think and i feel this has made me more open to this illness. If i get depressed or stressed or angry i feel a little dizzy. Not sure if this is blood presure or the labs still hanging on...Anyway it does get better eventually if it is labs that is. Hope you all are well asap....cheers Dave


Hi Everyone,

Well after the briefest, briefest couple of hours of respite on Saturday all is back with a vengeance. Today my head wants to burst, the dizzy lightheadedness is constant & I feel horrible.

Jemma - totally understand how you feel. You just think you will be stuck feeling exactly the same everyday for ever. I do admire you so much for still working - I couldn’t - back a few weeks ago I thought that December is such a way off and things maybe ok by then & I could take up my employer’s offer. HMMMMM! not at all sure about that now! However, I need to do something as being at home with my fears and anxiety is not doing me any good at all. I don’t know where you live, but I live in Middlesex just outside London, the weather is rubbish & autumn looming. Goodness knows how I will cope being stuck here in the house. I just don’t have the confidence to take on anything yet as my symptoms alter between able to cope to horrendous in short spaces of time.

Emily - you have had a lot to deal with and glad to hear you feel a little more positive. A friend of mine, similarly, has got a herbalist which she swears by - so maybe that’s another avenue.

Sandie- thank you for your welcome and support.

Also, hello to other people who have recently posted, Brett, Sam, Maria, Gary. Also, if Stacey and Jeff (the farmer) are still around (postings in July) - how are you doing?

I’m off to see an osteopath for some cranial work this afternoon - will let you know how that goes. Am spending a fortune on alternative therapies, supplements - desperate times, desperate measures! Hope my bank manager understands!!

Love to all Gloria x


Hi Sandie,

Forgot to ask - have you ever done VRT exercises? The VRT therapist that I saw recently tried to test me for BPPV and gave me Brand Daroff exercises to do. The BPPV didn’t prove positive and she gave me a set of Brand Daroff exercises to do at home. The following day I did them once - not since- as am sure that the BPPV testing and that has made my symptoms worse in the last couple of weeks. Am supposed to go for Cawthorne-Cooksey next week but am scared.

Love GLoria


Hi Gloria

I am UK too, up here in Geordie land!

Yeah I did do the exercises, both types and they do tend to make you dizzier. The idea is that they are training your brain to get used to the dodgy signals being sent from the damaged ear and hopefully it will finally ignore them. I didn't perservere with them though as it is very boring having to do them all the time! I swear by walking, walking and more walking! I try and get out every day and this definitely helps me. As you walk, don't look at the ground as this is what people like us tend to do, make sure you look around so that your brain is being stimulated. It is so hard at first but it does get easier. Try and get someone to go with you as it is very scary to be on your own.

Also, if you can try to do some ball games i.e. table tennis this is very good.

Try not to be too scared, remember that this disease is life controlling not life threatening! In the early days it terrified me but now it's just a bloody nuisance! Don't get me wrong, I still have days when I just can't do stuff and when I go into relapse it is like I'm back to square one but life goes on!

Take care

Sandie x


Just to add to Sandie's post about going out walking, I walk most evenings with my mum now that I'm back home living with her while all this is going on. We also have a Nintendo Wii, and the Wii fit game which I find useful, there are balance exercises, aerobics, resistance exercises and yoga, all of which are good if it's raining out or if you don't feel like leaving the house. You can go at your own pace as well.


I go on a walk most evenings like Gary, hoping it will help. I don't feel too bad being outdoors, it's indoors that makes me feel more dizzy and work is just a nightmare, turning round, talking on the phone, getting up from my seat etc, its really difficult and exhausting. So dizzy I feel I might collapse sometimes. But like you said Gloria I don't want to sit at home worrying all day. Plus I need the money badly - i cant afford to live on SSP, it so tough. Do you manage to work Gary?

Not looking foward to autumn/winter, no walks and cold weather. The warmth and sun seems to make me feel slightly better about this but dark nights and bad weather is going to be hard. Just praying for an improvement before Christmas!


Hi Jemma,

No I'm not working at the minute, I was one of 300 people let go when Intel Ireland announced redundancies in June. It was a case of go before I was pushed though as I had taken a lot of sick days earlier in the year because of all this, but after 10 years there I got a decent redundancy package so it wasn't too bad. My plan was to go back to college full time this month but that won't happen this year unfortunately. Am thinking of doing an open university course or something at the start of next year.

I know exactly how you feel, yesterday was a particularly bad day, feeling so faint and then a bad nights sleep which really doesn't help. But keep at the walking if you can, as Sandie says the more input you can give your brain the better, even though it's tough, it will help in the long run.

Just as a matter of interest, has anyone on here ever actually passed out because of this?


Hi All, What a day here in London- torrential rain all day - so housebound! Think your idea, Gary, maybe a good one about the Wii. Like you’ve all said walking is good and I’ve relied heavily on that when I just can’t cope in the house anymore, it’s taken me out of the vicious circle of constantly analysing my symptoms. Today, the pressure in my head, behind my eyes and at the back of my head is awful, as well as the dizziness - has anyone else experienced this. Dave - you mentioned your ears were blocked - how long was it before they cleared?

We carry on to battle another day. Take care everyone Gloria x


Hi Gary,

I forgot about the Wii - my daughter has one and yes they do have loads of balance exercises.

I stopped using it when my daughter started to get annoyed when I was in her room haha!

Jemma, when I am feeling really bad I also feel better when I am outside. One thing I really can't bear is too much heat! But hey I don't want to hear that you can't go out in the winter!!! Get your woollies on and go out and enjoy! It really is good for your well being and makes you feel like you are actually doing something to help yourself.

I also really feel for you being at work - it is so very hard. I also felt like I was going to collapse a lot of the time resulting in months and months off work until I was better and then starting the same old routine again - getting worse and worse until I would be carted out of there. As you know I have just given up my job after my last relapse as I worked for a family run business and I just could not do it to them any more. I worked on the tills all day and that was so hard for me, having to deal with customers all day and I didn't have a seat - not that that would have made much difference! It was also physically a demanding job as I would have to deal with deliveries and would always be carting heavy stuff around (garden centre). It came to the point where I had to make a sensible decision because my life was getting to be one long dizzy roundabout and I just couldn't cope.

Gloria - can I ask how old you are?(By the way, we have had a lovely day up here in Newcastle - no rain - I have been in the garden all day doing my autumn tidy up). I ask your age because I suffer a lot from head pressure and it is very scary. I also get strange pains in my head. I am 48 and though I am not properly in menopause yet I think it is coming on and I put my strange head feelings down to this. If you are not that old (!!!!), then it is normal to have all these things along with the Labs itself. Do you have sinus trouble because that could explain the pain behind your eyes. I didn't actually know I had sinus trouble until a few months ago when my GP looked up my nose and said I had severe allergic rhinitis! Mmmmm, to me it all fits in now because I have a lot of post nasal drip which I cannot clear (even with treatment) and I believe this is why my symptoms are lingering on and on.

Take care and hope everyone has had a good day.

Sandie xx


Hi everyone: sounds like people are up and down. A horrible illness. I hate it!!! Yesterday I went to see a Vesitubular therapist and she spent 90 minutes doing tests, and discussing this problem. She did a test with goggles, and said because of some eye movement, I had a classic case of Vestibular Neuronitis. She said it was very obvious to her. She said there was no reason why I shouldn't get to 100%. Most people can, she said but you have to do VRT for the rest of your life or you will relapse. She gave me two exercises to do, one walking looking left and then right, but always focusing on some object. Do that for one or two minutes a day twice a day, then walk heel to toe, with eyes closed, crossing your arms over your chest. Also two minutes a day, twice a day. That's a tough one. She said some of her patients were so bad when they came down with it that they went ot the hospital thinking they were having a heart attack. Of course I knew all this before I went to see her, but she really explained everything in detail, had a model of the inner ear etc. All the symptoms you are listing Jemma and Gloria are typical of an inner ear disorder. It made me feel somewhat better because at least I know there is nothing else wrong with me. I mentioned to her that the GP put me on diuretics for 2 weeks, she said sometimes that works but not often. Worth a try. I have been feeling better this past week, don't know if that is the diuretics or what,but hey, I'll take it. She said to stay off caffeine or booze, especially when you are not well. Deprssion is a real problem with this disorder, because of the vestibular system being wired to the nervous system, and also because it goes on and on. But she gave me hope that this can be conquered.Let's hope she is right! She only does vestibular patients so she really knew her stuff.

So Sandie, since you and I have been suffering the same symptoms, I will be looking forward to hearing how you do with the heel to toe exercises. One of her patients has been suffering with this for 20 years! Apparently her case is severe, with damage to both ears. She said to force yourself to do things even you don't feel well, because you get better faster. Gloria, she did mention that social avoidance behaviour was typical.

I thought I would share this with you, since doctors don't want to spend this much time explaining everything. Jemma and Gloria, if you haven't been tested, try and do it, because if you know at least you won't be so anxious.

I laughed when I read the bit about hairdresser. I didn't go for months when I first had this, and even now I have to think about it and wait for a good day.

So Jemma, Gloria Gary and all the others. You are not alone and you will get better. Try and stay positive, I read book after book after book when I first came down with it, I didn't want to dwell on it too much.

Cheers eveyone Maria


Hi Sandie/Maria, Thanks for your words of support. Sandie I’m 54 and been there and done the menopause thing which is why when I started to get really bad sweats again I did wonder if it had all come back again, but the Vest. therapist said it is because your brain isn’t receiving correct messages including temperature control - as if the dizzy thing alone wasn’t bad enough!! After the MRI I was told my sinuses are clear but my eustachian tubes are quite blocked which is either part and parcel of this nightmare or an additional thing. A friend of my cousin had this, but luckily for her she got over it within 10 weeks. She was my time line when this all started and kept saying to myself I’ve got a few more weeks yet - HAHA! but now realise how very lucky she was as clearly I’m way over this now. Anyway, she said she had head pains quite unlike anything she has had before - so it seems it is yet another symptom. When you are going through these strange feelings it is hard not to think you have something else wrong with you - especially as the doctors don’t recognise them!!

Maria - the diuretics thing sounds interesting - I read about that before. What are you on and is it a low dose? Also I tried your exercises. The toe to heel one OMG - a total staggering drunk!!!

Onwards & upwards - take lots of care all. Love Gloria xx


Hi Gloria

Im trying to get an MRI scan but really want to know what it shows. Did you have a scan of your brain and ears? I wondered if it shows inside the whole ear so can they spot blocked sinuses, fluid or blocked eustacian tubes etc? I can hear crackling inside my ears when I move my jaw, like dried fluid or something but nothing is visible by just looking inside them. Would a scan show anything do you think?

Thanks Jemma


I know what you guys mean about working.. I have been working through every relapse.. Sometimes I just breakdown.. the days are hard.. terribly hard sometimes... Then I go home and cook dinner, go to the gym, feed the kids, storytime, bedtime... I am drained.. Then I do it all over again the next day.. What a drag sometimes....

Working through this illness is very hard.. but on another note... If I were at home, maybe I would just sleep alot more and maybe be alot more depressed feeling useless.


Hi Maria,

I'm glad you feel better about all this now you have seen your therapist. It must have been so good for you to speak to someone who knows all about this and not some quack who knows nothing! God, even at the ENT I wasn't shown any diagrams,models etc of the inner ear, strange!

I did have the goggle test but I think mine was normal or I assume it was as I was never really told anything but I did get a diagnosis of VN because of my symptoms. I have done the first exercise you mention many times as the guy I saw at the ENT (my balance therapist) told me about this. It really does help also when you are feeling very dizzy outside to focus on one thing while you are walking and the feelings subside. This is also true in the car (as a passenger of course), as it can be very difficult when travelling, and he told me to focus on something in the distance and keep your gaze steady - doesn't always work but better than nothing. He also told me to touch something if I was feeling unsteady while standing still (i.e. waiting in a queue or standing taking to someone) and this gives the body a point of stability. The main one he told me which I find has been the most help is to walk faster when you are feeling extra dizzy and for me this really does work! Nobody can keep up with me now, I walk so fast!!

I haven't done the heel to toe yet but will try later, aagh, sounds fun!

Gloria - 54 and through that dreaded menopause - lucky you! But did you know that you can have symptoms before your periods end for up to 10 years (perimenopause) - and obviously they go on after they have stopped. Mad isn't it, what us women have to suffer. Anyway, you are perfectly correct all this head stuff is typical of Labs. Very interesting about the temperature control. I always feel dizzier in hot stuffy places. Also, if I laugh too hard or sneeze too hard or even get too emotional about something, it can bring on the dizzies (not every time though). I think my eustachian tubes are probably blocked too because every time I feel really dizzy and off balance my right ear feels blocked and I often get fluttering feelings in there.

Well, slight dizziness today for me but my balance is ok.

Take care

Sandie xx


Gloria - I am going to have a brain MRI Scan but I wondered if it shows the whole ear? you said yours showed the sinuses were ok so I wondered does the mri show this and also does it show the eustacian tube function? I can hear crackling in my ears but it cannot be seen by looking inside them. Do you think an mri scan would show this?

Gary - bad luck about the job. This has been a bad year - the worst of my life anyway. I often feel like I might faint but never have with this.

Jemma


Hi all,

Just got back from seeing the ENT consultant whom I should have seen before but he was on hols. This is a private ENT guy and my hubby was wondering whether to go to see him or not as the expense is HUGE considering we didn’t get very far with the other person. Our savings for a special holiday next year have all gone on this just because I’m still over 2 months off my NHS appt and was desperate to find out what is going on. Well that said, this guy was really helpful. For me it appears I have 2 things going on - labs and blocked up middle ear and eustachian tubes! He explained why I get this huge pressure build up in my head and tightness like a vice plus all the headachey pains. The pressure build up in the middle ear and the inner ear will always be different & if both are at high pressure at any onetime - double whammy! Bad enough if you just have labs! So, I’ve got a nasal spray and special nose balloon(!!!!!!) to inflate - this one is going to be interesting! This is to try & unblock the middle ears. The labs thing is as we all understand - time!! He did say that it is imperative to do VRT EVERY HOUR of the day! You have to bring on dizziness and then as you said Sandie about fixing your gaze to steady yourself. After about a week you get used to an exercise you then have to step up a level to bring about dizziness again. This all sounds like very hard work to me but he was convinced that it can reduce healing time by up to 3/4 .

Oh well - first thing is to try and master inflating this wretched balloon through my nostril!! Shame I can’t add photo of this!

Jemma - haven’t heard if your week has improved a little from the week-end.

Hugs to all Gloria xx


Hi everyone

I did try to post earlier today but it doesn't seem to be showing.

Gloria - your ENT trip sounds interesting! especially the nose balloon, keep us posted on that one!!! I am convinced there is something wrong with my middle ear and eustacian tube but my ENT hasnt mentioned this. How do they diagnose it? Does it show on an MRI scan? I am meant to be having a brain/inner ear mri scan but am worried in case it won't show the whole ear which I want them to look at as I don't think this is my brain, I think it's my ears. I read that sinus problems, or thickening of the mucous membranes can cause dizziness and disorientation but I don't know how this is diagnosed or treated...

I don't have any obvious ear infection, nor did they find any vestibular problems with the caloric test, only a sight hearing loss. They don't think it is labs because I did not present with the classic initial symptoms, ie spinning vertigo type dizziness and vomiting. My symptoms were always constant imbalance and brain fog (with severe anxiety for about a month which then eased away). Now the anxiety and brain fog have improved but I feel off balance all the time when moving and my ear feels crackly when I move my jaw and just not right deep inside. I also get so fatigued. The fatigue just comes over me throughout the day, particularly at work sitting at a computer and its like nothing iv known before, I just want to go to sleep but it can pass off again suddenly. Busy places, people, talking etc all make me more off balance and strange feeling but I know the problem is coming from my head and if it isn't my brain then it must be my ear/s or the passageways in there.

Keep posting everyone.

Jemma

Gloria,

That's very interesting. I stopped my VRT due to the ENT specialist (allegedly the best in the country) spending less than 10 minutes with me and decided I should do VRT where I lie down on a bed or flat surface with my head tilted back as far as it would go for 30 seconds, then as far left for 30 seconds, right for the same amount of time and then sit up as fast as I can. There were no tests done, not even a hearing test, so how could he know what was wrong and what was the right VRT to give a person? The ENT on the Irish equivalent of the NHS was more helpful but I'm still none the wiser as to what I have. It's a bit frustrating, but I might give the VRT a go again.

Has anyone else done this type of VRT I mentioned above?

Thanks,

Gary.


Morning all,

Gary - the exercise that you you’ve been given to do is the same as my VR therapist tried with me to test for Benign Postural Vertigo which is where the crystals in the inner ear become dislodged. As I didn’t prove positive for this she didn’t do the recovery thing. The name of the exercises for brain training are Cawthorne Cooksey which is if you have Labs usually it is these they give you to do. So how long have you had this gremlin Gary?

Jemma - blocked middle ear doesn’t show up on the scan - no mention of it on my MRI report. The report did mention a couple of slight changes in the brain conclusive with the reason for the scan being done , i.e. labs. It will show if there are sinus probs though - mine clear on that front - It was when they did 2 hearing tests - one with different pitch sounds to test hearing loss and the other where they just put a rod in each ear for a couple of seconds which comes out on a graph showing from a mid point (equal) how off side each blocked ear is. My left is tons worse than my right. Ask to get this done.

Interestingly, after I asked about diuretics, herbal supplements - gingko etc and cranial osteo - he said nothing will make this go away more quickly - these things might give some brief temporary relief but the only thing to speed recovery was VRT! Also, I asked about the other type of tests, caloric, ENG but he said with MRI scans these days it will show them if they need to do other tests i.e. if there is sign of nerve damage or other changes that may signify other tests. That told me!!

So next week I see the therapist who is starting Cawthorne Cooksey in the meanwhile I will try the exercises Maria said a couple of postings ago - anyone know others similar? Feel slightly better than the last couple of days, but that can change at any hour of the day with me. Does anyone else find their symptoms change throughout the day?

Weather a bit brighter down south here - will be off for my walk soon to feed the ducks. The torrential rain we had the other day has left us with massive leak in the roof - ceiling all wet - more expense!

Take care all Gloria x


Hi everyone

Jemma - the MRI won't be able to see what's going on right inside your inner ear as it is too deep inside your head. It will however, show such things as blocked sinuses and eustachian tubes(I think).

Jemma I know it's hard but try to stop worrying so much! Lots of your symptoms are very similar to mine. I did not start with a spinning vertigo either though I have had many true vertigo attacks since. I started with more of an intense dizziness. I didn't have any ear infections and though I have felt nauseous, I have never vomited. Also, my hearing has always been perfect. I also, only had anxiety for a month or two and that has never recurred and my symptoms can come and go over the space of a day. I can be dizzy one minute, off balance the next or both at the same time! I can go for months with no symptoms or I can go for months with the same symptom. Tiredness is also part of this and, like you, I can be tired one minute then fine the next. In the early days, just standing talking to someone would make me feel terribly off balance and busy places still make me feel bad.

Labs/VN has many different symptoms but you will get better over time. It is a waiting game and hopefully you will recover completely. My relapses have been due to viruses (cold,flu etc) and last year I had the mumps which knocked me for six but that relapse only lasted just over two weeks and I was back at work. Allergies seem to be my problem now. But, Jemma, even if you don't recover from this (I hope you do), life is not so bad. You should be so proud of yourself that you are still able to work as I know that is really very hard. I couldn't do that and have had long periods of sick leave.

Gary - just looking back at one of your posts - no , I have never passed out because of this illness though you do feel like you are on your last legs at times. I have had terrible balance problems where I have not been able to walk without someone to hold on to and still get awful whooshing feelings which make me feel like I am falling over and I have to grab whatever is close to me but, I have never fallen over. Also, Gloria is right as regards the exercises you were doing - they are usually given to people with BPPV. One of the main symptoms of this is dizziness when turning over in bed as it dislodges the crystals in your ears. The exercises are designed to get the crystals back to where they are supposed to be! The ENTs you have been to are pretty clueless. They mostly go by symptoms and if they suspect anything more sinister will put you in for MRI or CAT scan, but Labs and VN are more or less the same thing and the only thing they can do is give you VRT. There are drugs you can take in the early days to settle the vestibular system down but in the long run they are not recommended because of side effects and in the short term should not really be taken as they stop the recompensation process.

Time is going to be the only cure for most of us. I still live in the hope that it will leave me one day!

Take care

Sandie x

Hi folks

Gloria, I'm into my 8th month with now, it's been a lot of ups and downs, but the last 3 days have been really good and I'm thankful for that.

Sandie, you've been a great help with this. You're spot on, the ENT's have been next to useless, the one I went to on the national health service was better than the private one in that he could at least talk to you, a skill that's essential if you're a doctor. The other guy didn't have it. Any charged big money for what you (rightly I think) say was the wrong diagnosis. I have also never fainted or vomited, it's been close tho :) Just the weird feelings, tiredness, nausea and brainfog when things are really bad, but hey, it could be a lot worse.

The buzzing in the ear seems to be slightly better, dunno whether that's the SERC kicking in or just me feeling a bit better.

Gary.


Hi Guys,

Just wanted to mention that the Move which is done to correct dislodged crystals in the inner ea for BPPV is called the Epley or another is the Brandt-Dorff.

Gloria -- I too never had the spinning vertigo, however this does not rule out labs.

Chronic Otitis Media is when the Middle ear if chronically filled with fluid... Usually tubes are the last resort to drain this. Maybe you do have some fluid in your ear... But unless its usually infection, it would most probably only cause some annoying fullness, cracking popping in the ear..

Gary -- Glad your having some better days.. LOVE THOSE!!!

Hi Everyone,

Have just about managed to sign up and use Facebook with a lot of guidance from Rich! IT maybe not my strongest point!! Have posted a piccy so there is a face to my name - although taken in healthier times!

Well, had a couple of not very good days or nights and have just started doing the nastiest of VR exercises. For me to bring about my worst symptoms, which is what you have to do - is rolling from side to side really quickly with my eyes shut 30 times. Made me really sick. I’m supposed to do this every hour - not so sure!! Also, was going to ask if anyone else has taken Serc - see you’ve just started Gary? The ENT guy has given me this to take saying it will help with the head pressure thingy.

Anyway, off to see if I can have a better night tonight - feel absolutely exhausted.

Take care - hugs Gloria x

Hi Gloria

Back on the Serc, 8 mg 3 times a day for 3 months. When this all started me doctor put me on the 16 mg tablets twice a day but they didn't work, probably because I came off them too soon and went onto Stemetil, which did. Looking back now, even though it controlled the dizziness and nausea I wish I hadn't bothered with the stemetil as it hinders compensation, but as far as I know Serc is ok. It's supposed to increase blood flow to the inner ear, you just need to give it time to work. Hope this helps,

Gary.

Hi, all!

It's been a wretchedly long time since I've posted here and for that, I apologise.

I'm going to post now to tell you all what's been happening with me on the Health Front.

Firstly, it's been confirmed that I -did- have Labs in August of 2008 and that I -do- have a right-side vestibular weakness (of unknown origin).

As of now, it has also been confirmed that while the vestibular weakness is still present, my balance significantly improved WITHOUT the VRT that was prescribed.

Also, as of the latest appointments with my Endocrinologist and ENT, it seems that the majority of my "dizziness" and "episodes" were probably due to Hypothyroidism.

It seems as though mine just up and quit without warning and I will now be on a replacement pill for the rest of my days.

Not the best news, but I can assure you that instead of daily problems that could last for a week or two, I am now symptom free for two and a half weeks and my last "episode" only lasted a few hours!

The ENT has put me back on betahistine for four weeks and given me a anti-motion sickness drug to take when I have an "episode" with the thought that if they don't make me feel better, then the result is that it's NOT my balance causing the issues and it's something else.

All in all, I've had positive forward movement at last and wish the very same for all of you, and speedily, too!

Take care and you can find me on Facebook (don't forget to join the group "The Dizzies"!) if you need me :)

Much love to all, Tanya

Hi Everyone

Not been around for a couple of days - that VRT made me feel so unwell - back to day one week one! Not sure I can carry on with that.

Gary - interesting about Serc. My NHS GP gave me the cheaper equivalent of Serc - just Betahistine hydrochloride. Serc is betahistine DIhydrochloride. Whilst the ENT consultant said that most people don't find a difference - I definately did. So have started back on 16mg x 3 a day. So is yours actually branded SERC? You're right about the Stemetil hinders compensation but I checked with the ENT & he said Serc is OK - let's hope so. Gary are you working or how do you cope with your day? At the moment I'm not coping very well. Each morning I dread whether I feel the same, even worse - unfortunately no sign of recovery yet!

Tanya - nice to get your message & have read your earlier postings- hope your ‛episodes' are few and far between.

How's everyone else doing? My nose balloon thingy to help put pressure back in my middle ears is interesting! So far a few crackles in the ears but then they block again - so again, another waiting game.

Sandie - hope you had a good week-end? Did you join the Great North Run this week-end?? Did think of you. The weather seems to have been glorious in your neck of the woods.

Look forward to hearing from you all. Love Gloria x


Hi everyone

Gloria - sounds like VRT is really proving hard for you. I have been doing the exercises since July time and whilst they make me a bit more off balance whilst I do them, they do not really seem to affect me which is why I wonder if I have something a bit different to most people who seem to really lose their balance badly. Got my MRI scan tomorrow. Decided to go private and pay on credit card as I just dont want to wait any longer on the NHS. I'm praying they find something so that I can get some answers although I have a feeling this will just be another dead end. You said the nose balloon makes your ears crackle slightly. My ears crackle when I move my jaw - is this a good sign? Im sure they never used to do it.

Tanya - the thyroid thing is interesting, I think my doctor checked me for that as I feel very dry all the time. My mouth, eyes and nose are all dried out. I heard iodine can help with that and also with dried sinuses. Not sure whether to try some supplements.

Brett - not heard from you for a while - how's it going?

Sandie - thanks for your encouragement. I try to appreciate what I can still do but I just dont cope very well with illness, especially one so strange as this.

I guess like a lot of people on here I live in hope of waking up one day and this being gone!Wouldn't that be amazing!

Jemma x


Hi

Tanya, lovely to hear from you and I am glad you have finally got a diagnosis. It is so frustrating when it just goes on and on and on. At least you are having good days now. How's married life?

Gloria, so sorry that your VRT has made you so much worse but this is what it is meant to do. Like Jemma it didn't particularly bother me too much but you must try and continue with it. Mind you I was a bit naughty with that and didn't do much because I preferred to walk, walk, walk! Serc is absolutely fine to take long term and does work for some people. Do you go to work Gloria? I know only too well those awful feelings every morning when you get up and are wondering whether you are going to have a good or a bad day. It is so much worse when you have to go to work.

And, there is no way that I could ever do the great north run! Are you mad, I can't even run up the stairs, haha. Actually I didn't even know it was on until after the event! That's me all over, take no notice of what's going on around me - lol! Yes, we have had some good weather. I painted my front door yesterday but will have to wait until Thursday because the weather for the rest of the week is not good. And, when I got up this morning the paint had bubbled so I wish I had never started it! Oh well, these things were sent to try us!

Jemma - hope your MRI is ok and it at least puts your mind at rest.

Take care

Sandie x

Hi all,

Good to hear from you. Jemma/Sandie - can I ask what were the exercises you had to do. Did you have to do them so quickly that they made you dizzy? The two that I did this week-end were rolling from side to side and lying down, rolling over, sitting up lying down on the other side & sitting up again really quickly. Not only did that do for my neck & back but gave such horrible headaches. So wondering if there are any others?

Good luck with MRI Jemma.

Love Gloria x


hi gloria

The exercises I did were a combination of the Cawthorne cooksey exercises and some others for vertigo which I found and the audiologist suggested.

They include circling the head with eyes open and closed, moving the head whilst focusing your eyes on a stationary object, standing still closing eyes and leaning side to side and forwards and backwards, closed eyes and turning on the spot 180 degrees. There a lots of ideas online and I think you just do whatever you can to make yourself dizzy and this helps the brain compensate.

Have you had a caloric test gloria, to test for vestibular weakness/loss?

Jemma x


Hi everyone: everyone has lots of stories. Gloria, your balloon thing sounds interesting. Does it hurt? Is the Serc helping? I found it helped a bit when I took it (for a couple of months ) 16 mg once a day. You will know that you have an inner ear problem if it works, because it is only used for inner ear disorders. Jemma, sinus problems or sinusitis can cause dizziness and nausea. Do you feel that your sinuses are blocked? The Doc can do an X-ray of your sinuses.

Went back to my GP to talk to him about the diuretics, which seem to be helping. He said continue taking them for another month and then go off and see what happens. He said I could have a case of secondary endolymphatic hydrops which could have been caused by the neuronitis.A form of Meniere's. Not sure at this point. But I have been almost completely symptom-free for over 2 weeks. It has been very dry, so we will see when it gets humid again. I am taking 1/2 of the minimum dose, which is all I can tolerate. Those of you who have symptoms, you can take diuretics in vitamin form, try it for a couple of days, see if it makes any difference. Willing to try smoking dope at this point. Just kidding Sandie!

As for the menopause, I am finished with it. The good part is that I can't get pregnant (just kidding,ha ,ha, ha). The bad news is I still get hot flashes that can last for hours. A friend of mine gave me some progesterone cream that you rub on your wrists. We will see if that helps.The other bad news Sandie, is that you start to lose bone density, so you get closer to osteoporosis. So more walking, 1500mg of calcium. Let's hope it wards it off, because I have heard of women breaking their hip eventhough they didn't fall. Everyone, try to get as many answers as you can from as many people as you can. Try and get to the bottom of it and do as much homework on your condition as possible. It does get better, but it's a long and convoluted process. Life sure isn't easy. But we are all in this together.

lots of love everyone Maria


Hi Gloria - do you know I can't even remember which exercises I was told to do by the hospital it seems so long ago but I will hunt them out later and post them for you. If I remember correctly I wasn't given very many!

Maria, smoking dope!!!!! Behave yourelf woman!! Mmmm, mind you, I might join you on that one - escape for a little while, haha!

Mmmm and that progesterone cream to rub on the wrist - are you sure you are rubbing it in the right place!!!! Sorry, had to get that one in!

You are right about the osteoporosis. Only trouble is, I am on a heavy course of iron pills at the moment and I can't take calcium supplements as it interferes with the absorption of the iron. I am on three lots a day at the moment and you can actually take calcium as long as you leave a few hours before/after but by the time a few hours have passed it is time to take more iron and I forget to take the calcium anyway.

I was really dizzy this morning (hormonal) and had to take my daughter to the doctor so I took one of my stugeron pills and I was fine. I was in there for over an hour! Usually when I feel particularly bad I just cannot stay in places like this.

Hope you are all feeling good today.

Sandie x


Hi Gloria

These are the exercises given to me by the Freeman Hospital ENT Department. One of the best heart hospitals in the country but the ENT - not in my opinion!!

These exercises are devised to incorporate head movement (vestibular stimulation) or to foster the use of different sensory cues for balance.

1. Stand with feet as close together as possible with both or one hand helping maintain balance by touching a wall if needed. Turn the head to the right and to the left horizontally while looking straight ahead at the wall for one minute without stopping. Take your hand or hands off the wall for longer and longer periods of time while maintaining balance. Then try to move feet closer together.

2. The patient walks, with someone to assist as needed, as often as possible (acute disorders).

3. The patient begins to practice turning the head while walking. This will make the patient less stable so you should stay near a wall as you walk.

4. The patient stands with feet shoulder width apart with eyes open, looking straight ahead at a target on the wall. Progressively narrow the base of support from feet apart to feet together to a semi heel-to-toe position. The exercise is performed first with arms outstretched then with arms close to the body and then with arms folded across the chest. Hold each position for 20 secs. Practice for a total of 3 to 5 mins.

5. Repeat exercise in No 4 but with eyes closed.

6. Practice standing on a cushioned surface. Also, standing on hard floor, thin carpet, shag carpet, thin pillow, sofa cushion. Backward walking can be attempted cautiously in patients with unilateral vestibular loss.

7. Make walking more difficult by counting backwards as you walk. This can be made even more difficult by walking on different surfaces, again probably patients with unilateral vestibular loss only.

8. Practice walking with a narrower base of support. Use the wall for support at first.

9. Practice turning around while walking - at first making a large circle but gradually making smaller turns. Turn in both directions.

10. Practice standing and then walking on ramps - with a firm surface and a cushioned surface.

11. Practice walking in a mall when it is quiet, with the flow of traffic and then against it.

12. Ball toss activities, walking on sand and uneven grass.

This is the first sheet of exercises. I will post the rest shortly as I don't want to type it all out and then lose it.

Sandie x


Hi Gloria

Here goes with the second part!

These are from the audiology Department at the Freeman Hospital, Newcastle upon Tyne.

These exercises are part of the treatment for dizziness or imbalance. They are designed to teach your balance system how to co-ordinate the information from your balance organs with your other senses. Sometimes they are difficult to do but it is important to keep trying, they will become easier.

Exercises are to be done sitting upright in a chair. They are to be done twice a day, every day. It can take several weeks for them to start having a noticeable effect.

Do them slowly at first for two minutes each. Then do them faster. You might feel dizzy while doing the exercises, that is normal and part of the recovery process. If you feel worse while doing them - do them VERY SLOWLY.

Use a kitchen timer or alarm clock so that you don't keep looking at the clock.

Part 1

Hold a pen or pencil at arm's length directly in front of you and focus your eyes on the top end. Keep the pen or pencil still while doing the exercise.

A) Move your head from side to side keeping the end of the pen in focus. Do this continuously for two minutes without stopping.

B) Then move your head up and down keeping the end of the pen in focus. Do this for two minutes without stopping.

PART 2

A) Repeat the exercise in Part 1A, but as you move your head from side to side move the pen about (4 inches) side to side in the OPPOSITE direction to your head movement. Do this for two minutes.

B) Repeat the exercise in Part 1B, but as you move your head from up and down move the pen about 8 inches down and up in the OPPPOSITE direction to your head movement. Do this for two minutes.

So, there you have it! Hope it helps you!

Take care

Sandie x

Hi folks,

Hope everyone is having a better time of it. Just a quick update, I went to the neurologist today to talk about the tumour they found in my brain. Very nice man, he explained stuff well, totally unlike the other fella. He thinks it's benign but wants me to have another MRI (next Thurs) but this time I'm to have an injection of a contrast dye to help show up that part of the brain a bit better. He also pointed out on the screen the part of the inner ear I mentioned before (internal auditory meatus), and said it all seemed normal there. When I asked if he thought the lesion was causing my dizziness he said he didn't think so, but it's possible it could be causing the memory loss.

So some positive news, I'll know more next week.

Gloria, it is Serc that I'm on, 8mg 3 times a day and it does seem to be helping a bit.

Take it easy everyone,

Gary.

Morning everyone,

Firstly, Gary - I was upset to hear your news - however, I hope you are being positive. Whilst I am not a doctor, but I do know that benign tumours are slow growing, can be removed and don't return and because they are benign, do not spread. So are they saying this has been the cause of all your symptoms? Do let us know Gary how you are doing, especially after your next MRI results. If nothing else, and I'm sure I speak for others who have recently posted on this site, you have our total support if only by communicating here & off-loading if it helps.

Sandie - you are an absolute star. Thank you so much for going to all that trouble and copying the exercises out for me. Don't think I'll complain about not having much to do in the day! This thing is certainly making me crazy & desperate to feel better. My hubby has now bought me a Swingball for the garden. I read that doing stuff like tennis is good, so we went off to our nearest court. Let me tell you I haven't played (if that is the correct word - try to hit the ball over the net more like!!) That did my stiff back & neck no good at all - so we'll try this Swingball for eye hand co-ordination. What next!!

Weather still good - how's the front door coming along Sandie?

Jemma - how are you & did your MRI go OK?

Take care

Gloria x


Hi Gloria - I did post a reply to you about the VRT but it doesn't seem to be showing on here. The MRI went ahead but I wont get the results until next week - due to see my GP on Monday so hopefully she will have them then but I'm not holding me breath for any answers. Feel very dizzy today, convinced my eustacian tubes are blocked. The MRI scan was so noisy and I had a terrible headache after and it was as though the noise of the machine in my ears made my dizziness much worse. I couldnt hear anything in the headphones because the machine was so loud. Horrible!

Sorry to hear your news Gary, I hope they are able to offer some treatment and I suppose it is good to finally get some answers.

Take care everyone x


Hi Gary,

Oh, so shocked to read your post. You must be so worried. I sincerely hope that you are ok and as Glria says, we are all here for you. Try not to worry too much and keep us informed as to how you are getting on. Will be thinking of you.

Gloria. Mmmm, can just imagine you with that swingball! We used to have one years ago! Yes, any ball games are good - even sitting passing a ball from one hand to the other hand is good. I have an outdoor table tennis table and used to play a lot when I first got this thing and that really does send you dizzy.

The front door - don't even mention it. It was a glorious day on Sunday and I think the heat made it 'run'. So, I have had to scrape chunks of it off and will be repainting at the weekend. You know, years ago I never had any problem with paints. But now that all the chemicals have been removed because of 'elf and safety', nothing works. I did all my passage way doors with that fast drying gloss a few months ago and it is flaking off!!!! Also, when my wonderful family have read the newspaper and then put their fingerprints all over the doors I can't get them off. So I won't be using that again!

Anyway, that's my moan for today.

I have been quite dizzy today but I still went out for a walk for an hour (on my own). Got to keep walking!

Take care

Sandie x

Hi Gloria and Sandie

Thanks for the concern and support, it means a lot. I'm not that worried at the minute tbh, the doctor didn't seem overly concerned either, he said to keep an eye on it by having regular MRI scans, and the lack of headaches seems to make him think I may have had this a while or even all my life and it was a coincindental find when scanning for the dizziness problem. That's what I'm hoping anyway. Like you say Gloria it can be removed but the doctor said that that's an "if all else fails" move as surgery carries the risks of triggering something else. We'll see.

Gloria, that swingball thing sounds fun, it should help the co-ordination no end, if the weather hold out so you can play it!

Sandie, thanks for posting those exercises, I also found more on this website http://www.dizziness-and-balance.com/treatment/cawthorne.html, will be trying these out next week if I get the go ahead from the doctor. Seems like the more we can do to trigger the dizziness the better, even if it is difficult ass it helps recovery time in the long run.

Cheers folks,

Gary.


Hi guys my name is Michael and like all of you I have had the pleasure of being struck with this wonderful problem. It was like being very drunk for nine days and then suffering through a hang over for the next 8 months. The real reason I am writing for the first time, I have been lurking here taking solace in the fact that I am not alone with this, is I have learned something that has helped me very much and I am sorry if it is already on the page since there are so many pages to read. I have had a problem with dry skin, jock itch and athletes foot and was taking round after round of antibiotics for weeks right before my attack started in January. I also am in the liquor/wine/beer business and as you can imagine have my share. I noticed these flair ups after drinking. I did research on YEAST and the problems on the body. There are basically 2 kinds one external and one more internal called SYSTEMATIC CANDIDA`it affects yor body in different ways but the symptoms are nausea, migraines, dizziness, fatigue, weakness, earaches, digestive problems, cravings for sugar carbs and alcohol as well as many. Too make a long story short I asked a pharmicist for help I started to take PROBIOTICS to get my digestive system settled and went to a health food store and am taking an all natural enzyme that attacks and kills yeast only, it is called CANDEX both products are all natural. Well surprisingly I feel much better and have not had a headache, dizziness, earache or any other symptoms since starting on this. I would be happy to help anyone, but I think it is worth looking into on the internet. Also from what I have read medical science does not put too much stock into this condition but it can go unnoticed and can do alot of damage over time. And I also lost 8 pounds because I have the energy to do sruff, I am not craving sugary stuff and am digestiig normal. Hope this helps. Michael

Hi all

I posted something yesterday but it mustn't have made it through.

Thanks everyone for your concern, it means a lot. Tbh, I'm not that overly worried about it as the doctor didn't seem too bothered, he just said to keep a check on it over the next year or two, with regular MRI scans. He also said it could have been a coincidental find, when they were scanning for the cause of the dizziness and it showed up, and could have been there for a long time or since birth, no-one knows. He did say however that surgery is the last route he wants to go down as although it will remove the lesion, there is a slight chance that it could trigger other things, like seizures and stuff. I was reading about neurosurgery last night, and it's amazing what they can do these days. We'll see how it goes.

Gloria, that swingball things sounds great! It's bound to help with your co-ordination, as long as the weather holds up so you can get out to do it.

Jemma, I know what you mean about the MRI being loud, they gave me earplugs which helped a bit, but if your hearing is already sensitive from the damage to the inner ear, it makes the thing worse. I think my scan only lasted 15 mins so it wasn't too bad.

Sandie, thanks for posting those exercises, I will give them a try next week if I get the go ahead from the neurologist as I'm still convinced I have an inner ear problem, and the other thing is separate. I also found these http://www.dizziness-and-balance.com/treatment/cawthorne.html which may help too.

Michael, thanks for posting and glad to hear you seem to have gotten to the bottom of your dizziness. It's another option for us to try.

Cheers all

Gary.


Hi Michael

Thanks for your advice - I am going to try the Candex as I have athletes foot and have had previous long courses of antibiotics. When all this started I had a white dry tongue which the doctor said may be thrush although I do feel the constant dizziness is something to do with my ears and I am not sure if candidiasis would cause that. My mouth and eyes are really dry though. Did you have a diagnosis of labs?

Jemma


Hi everyone,

Gary - wondered where you had got to but as you say your post went missing! It is there now though just before Michael's - I'm sure it wasn't there before!

Anyway, I am happy that you are being so upbeat about this lesion on the brain that has been found. I guess lots of people are actually born with these things and they don't cause any problems. As you say, the main symptom of brain tumours is headaches and as you don't have any the chances are that this is not going to be something for you to worry about unduly.

Isn't this weather great - it's better than we had during the summer months!

Keep fighting!

Sandie x


Hello Gary & Jemma I hope you are doing better. Jemma I was diagnosed with Labs although I think it was Vestibular Neuritis because I never had any hearing loss. I went through all the tests, MRI's,hearing tests, Electrical impulse tests and the test with the hot air and cold air in each ear to make you dizzy (barely made it home & straight to the bathroom) I too was told a couple weeks to a couple months for it to go away and that's about it, really no help at all like we all have seen. The most frustrating part is there is no real answer or guidelines or help, just wait it out. Look on the internet at the Systematic Candida and how far the symptoms go and how it can effect you. It is really amazing how it parallels what we go through. It has been 2 weeks now and the headaches, dizziness have all but gone away and mostly noticable is all the mental aspects like the fog, memory, concentration getting less and less and a sharpness that I haven't felt in months. Definitely look into Systematic Candida and how it effects you also the major role that Probiotics takes in helping and how important they are to everbody sick or not. This will take months depending on how bad your situation but it will work look into it. Good luck guys I hope this helps. Michael

Hi Everyone

This bleep bleep bleep illness is driving me completely nuts. Had such a bad few days - back to square one AGAIN!!! Not only is there the woozy head, nausea etc to deal with but my neck back and shoulders are so stiff and in spasm - has anyone else noticed it has affected their muscles in these areas? (Mind you - could be the Swingball!!!) Don't think so as have felt yuk.

Gary - glad to hear that your doctor feels it is not something so urgent that has to be looked into immediately & could be a dormant thing. Have they diagnosed you with Labs or Vestibular Neuronitis or don't they know? Are they going to do anything else other than regular MRIs? Have you started back at college yet - if so - how are things going?

I have been doing Sandie's Vestib exercises and have to say they have made a little difference already or it could be my imagination. The thing with this is that you think you feel a bit OK & then like last week - WHAM!! I have been doing them 3/4 times a day for the last 3 days, so we'll see.

Michael - thanks for your tips - interesting. Whilst I'm not sure that candida is the problem for all this but think to de- fungus (!!?? is that a word!) myself could help, although I have taken Olive Leaf extract which is supposed to have similar properties. The only thing - typical me - is that I go mad with the stuff, hoping for a quick cure & then feel bad because `i've taken too much of the stuff too soon. I've looked at this Candex stuff - it is expensive! Did you get any side effects when you started taking it & where did you get yours from?

I think I need to take some Vit B or something as this has sapped my energy levels no-end. Any advice on this anyone?

Anyway - time for more Vestib exercises. Weather here today very cloudy - quite depressing after wall to wall sunshine here in lovely Middlesex this week-end!

Look forward to hearing from you all soon - hope there's some progression going on!

Hugs Gloria x


Gloria,

Sorry to hear that you are feeling rough again. This is what's it's like, a rollercoaster, feeling ok one minute and then really bad the next. It's like taking one step forward and two back at times.

The stiffness in your back and neck could be because you are holding your head still because of your dizzines. It is a natural response to try and keep as still as possible to lessen the dizziness but it doesn't do your muscles any good! Try to keep moving your head as you normally would if you didn't have the dizziness and it will actually help you to recover quicker. I also suffered from pain in my legs and feet because I was kind of 'gripping' floor with my toes to try and stop myself from falling over!

Glad you are doing the exercises, I am sure they will help you.

One of the main things I found that hindered recovery in the early days was the fear of actually doing things. I know at first (and as I find with each relapse I have), it is very hard to do things, but as you start to feel better you must challenge this illness and not be afraid of it.

Gloria, it's windy here in Newcastle today - lovely drying day!

Take care

Sandie x


Hi Gloria, it is a little expensive but I am sure there are many brands i'm in the U.S. so I don't know what you would be able to get. There were absolutly no side effects at all. With in a few days I noticed a major difference. A full change could take a while depending on your body and the severity. I picked up the Candex at a health food/organic place called Dean's in N.J.


Hi all

Had the results of my MRI scan. All was fine except it said there was "fluid signal in the right mastoid air cells likely to be inflammatory in nature." My GP could not give me any info about this and I have been trying to look it up online. Anyone have any ideas? I am not sure whether to see the private ENT again as I don't want to waste another £100 if there is nothing they can do.

I am trying a steroid nasal spray as I think my eustacian tubes are blocked. Has anyone had any success with this?

Jemma

Hi all,

Gloria, I haven't been diagnosed with VN or Labs or whatever other forms of vestibular damage yet and it's kind of frustrating tbh. Not knowing what the problem is leaves you feeling helpless, I'd love to be able to start VRT, but what type? The two ENT's I've been to have differing opinions and there doesn't seem to be an neuro-otologists in this country (Ireland) to go to. I had planned on returning to college this month after being laid off in June, thinking this would be all over by then, but no such luck. Hopefully next year.

Been fairly dizzy this last couple of days with some new symptoms showing up, extreme tiredness - I'm sleeping for 8-9 hours a night and waking up feeling like I haven't slept at all. Also thought I was running a temperature the other evening and today I have a stiff neck as well, reading on other sites they all seem to be symptoms of this cursed illness :(

I did find this though about "brain fog" which I found interesting and it kind of follows on from Michael's post, have a read and see is there anything there that might help. I always thought brain fog was something that just described how you saw the world when you are dizzy but it's much more than that.

http://www.drlwilson.com/Articles/brain_fog.htm

Take care everyone,

Gary.


Just wanted to chime in on hearing loss and Labs. I have very minor hearing loss in a certain spectrum in my left ear.... I just wanted to point out that the hearing loss does not have to be severe for Labs....

Tired today.. and have this heady feeling I cannot seem to shake.....


Hi

Jemma - the results of your MRI seem to show that you have a problem with sinuses - take a look at this http://www.medhelp.org/posts/Neurology/fluid-filled-opacified-mastoid-air-cells/show/590353 it may help you!

I have mentioned a few times that I think my ongoing dizziness is due to trouble with my sinuses caused by allergies. My nasal passages are all inflamed and I have post nasal drip and this is obviously contributing to my problems with my inner ear. I also think that my eustachian tubes are blocked because 9 times out of ten I cannot make them pop - you know when you hold your nose and keep your mouth closed and blow through to make them pop? Also, since I fell ill with this stuff I have not had the normal ear popping that happens when you go to a higher altitude. Everyone else's pop but mine don't.

I have used beconase for a good few months now which is a steroid nasal spray and I do think that it helps. I do have a serious problem with my sinuses and it has not completely cleared them but about six weeks back my GP changed the prescription to a different spray and boy was I dizzy. I went straight back to the beconase because I decided it was helping more than I had given it credit for! I also take a daily antihistamine pill because my eyes get really irritated and this is a year round thing.

Gary - apart from the exercises you were doing for the BPPV - which is possibly what you DO NOT have - any type of exercise you can find will help. The ones I posted earlier in the week are actually from the hospital and I suppose will be ones you will get from your ENT. But anything that is challenging your brain is good. As regards the neuro-otologists I think the only ones close to you will be in London - money, money, money!

The fatigue is also a huge part of this because your brain is working so hard to try and make sense of it all!

Sam - you are correct - it is usually only minor hearing loss that is associated with Labs and Labs and VN are very similar so most doctors don't even differentiate because the outcome is the same for both - VRT!

Take care everyone and hope you are feeling better - even if it's only a little bit it's a step in the right direction!

Katie where are you - have you had a good summer? I hope you are still well. We had a lovely few days in Scotland a few weeks back but the eco chalet was c***. The most uncomfortable place I have ever stayed - haha. And, it had a dish washer - what's eco friendly about that?

Sandie xx


Sandie - yes I think you're right about the sinuses. I had started to think it was something like that myself before this scan. I can feel there is something wrong inside my ears and it's like they are blocked. I think it might be the middle ear because if i move my jaw there is cracking in my ears, probaby the eustacian tubes. Feels like the pressure is not right in there. My off balance/dizziness is constant, it never goes away and I dont have really have better days, it's as though there is something going on in there like a blockage. My ears dont pop at all.

The spray doesn't seem to be doing much except making my mouth dry. I heard that grommets can help with blocked tubes. I just keep thinking there must be something they can do for this if there is fluid in there.

Gloria - how are you? is the nose balloon working?

Gary - I read that brain fog thing. My brain fog seemed to improve after a few months. I think what happened with me may be that fluid filled my mastoid air cells which made my brain feel really weird and then it started to drain out and block my middle ear which is why my dizziness is still really bad. Its only a guess but the doctors haven't come up with anything yet so all I can do is try to work it out myself. Have you improved at all over the 8 months or so that you have been ill?

Take care all

Jemma


Jemma,

When you have a middle ear infection.. or Chronic Otitis media, which is fluid in the middle, ear it is a completely different feeling... The infection in itself may cause dizziness or vertigo.. usually more severe vertigo... But you would feel it.

Some things that would help with that would be.

Prednisolone -- medrol pack Nasal Inhaler

Just a point to make on the nasal inhaler... If you do not use it right, it does not work effectively... Your doctor should have showed you , but you should tilt your head forwatd and make sure it gets all the way back into your throat... It has to decrease the inflammation on the eustacion tube... So if its just hitting your nostrils, it wont do much.

Sam

Hi Everyone,

Just got back from another visit to the ENT consultant - now into our 3rd mortgage!!!! Anyway, the nose balloon thing has improved the negative pressure a little but have only been doing this for week and half. He said that the blocked middle ear was not helping the labyrinthitis- although both were caused by the same virus. Like you, Jemma, I seem to be dizzy, woozy all the time and have not had a symptom free day in all this time. You should really ask your ENT guy to do an ear pressure test. The nose balloon is called Otovent and can be bought over the counter. My consultant said to correct the pressure immediately in the ear would be to have grommets inserted but he then still couldn't tell me how much it would improve the Labs in length of time to get better! So he thinks my ear pressure will improve over the next 6 weeks & to keep taking Serc & using the nose balloon & review the situation then - & to carry on doing the VT exercises. As far as all the headachey, pressure feelings in my head & the tiredness he said will go away on their own - again - in time! Gary - just about to read your link on brain fog. Like you also I get exhausted with this - the anxiety doesn't help.

With regards to Michael's suggestion of the Candex, I've bought a bottle over the internet from a company called Discount vitamins &herbs.com. I received it within 2 days. I only bought the 40 capsule size as it is quite expensive & wanted to try out first. This will give about 10 days supply - so her goes. With all the supplements I've been taking, by the end of all this I'll be physically fit & healthy but mentally completely ga-ga & stoney broke!!!!!!

Sandie - we should have been on holiday in Scotland this week but cancelled for obvious reasons. We were to rent a log cabin (!!!) - your eco chalet sounds interesting - do tell us more!! Maybe our log cabin might have been the same. Glad we cancelled though as the weather up there this week hasn't been that good.

Take care all Hugs Gloria x


Hi Gloria,

I think your ENT is right on... The negative pressure in the ear is def an issue however it probably wont make your dizziness go away. I too had the negative pressure and fluid in my ears.. What I used to get rid of it was Nasal Inhalers, and a medrol pack.. also, I did the valsalva often during the day.. (Gently mind you)... It was annoying, but did not affect my dizzies... The dizziness from Labs takes time... Seems like forever... A few comments back someone wrote about their PT saying that if you dont keep up the CRT you will have a relapse.. I am concerned about this.. as I have often relapses... This latest one doesnt wanna go away.


Gloria - just wanted to ask as you have been told you have blocked eustacian tubes, do you hear crackling as if there is fluid in your ears when you move your jaw?

Also - have you had the ENG/caloric test for vestibular function?

Jemma

Hi Sam/Jemma

Well my ENT guy certainly made an issue again of doing the VRT exercises vigorously every day - the dizzier you make yourself feel the better! However, the exercises are to bring on your symptoms but not until you feel really bad. You then stop and wait then do again. The exercises should only take about 5-10 mins 3/4 times a day and then with as much other balancing co-ordination activity, walking etc throughout the day. I'll ask my VRT therapist on Friday whether it is something you have to continue ongoing.

Jemma - yes, I get a lot of cracking & popping in my ear - also most annoying is the fact that I can hear my heart beating and every time a bone cracks in my neck it all seems so loud in my head. I haven't had the ENG/Caloric tests done as the ENT said that with the use of MRI scans, there is no need to do other tests if the scan proves no further investigations are necessary which was so in my case.

Take care - love Gloria x


It's interesting that Gloria, different ENTs have different approaches I guess. Mine had me do a hearing test and the caloric test before the MRI scan. He said he only ordered the MRI scan because I had some right sided sensiorneural hearing loss otherwise he would have said this was defintiely not ear related because the caloric test did not show anything. He said there was less than 1% chance the MRI scan would show anything either so I am very glad that it did show fluid in the mastoid air cells otherwise I would have been sent away from ENT totally and left without anything.

A few things make me think my problem is not inner ear but middle ear: the fact that the caloric test was normal, the fact that betahistine and buccastem etc dont do anything for me and the fact that the MRI scan showed nothing wrong with the balance organ. Did your MRI scan show a problem with the labyrinth area Gloria?

Hi Jemma,

Just been out for a walk as it's lovely & sunny here today. I always feel better outside than in. Don't know why but inside the house I seem more woozy.

My MRI report said that the brain was within normal range but had a few non-specific signal changes which are incidental to the reason for the scan i.e. labyrinthitis. They then went on to say that there is a mild prominence of some ventricles (don't understand all this technical stuff) again typical of labs. There was a very small amount of secretion in my right ear (not the ear that has been the trouble at all!!!) but nowhere else either in the mastoids or middle ear spaces, but my ENT guy said that the sticky residue doesn't show. My auditory & labyrinth canals were normal-no nerve damage.

My ENT consultant gave me my MRI report because you pay privately, you own the images. With it was this report - you should not only get your images but also a report that was sent with it - so do ask. Again, Jemma, I do think you need to get them to do an ear pressure test - not only will it show your pressures but whether it is just one or both ears that are affected.

Just think - when we get through this - I think I will be able to cope with absolutely anything!!

Hope your day is being kind. Hugs Gloria xx


Hi Jemma,

Just to let you know that when I first went down with this it took me nearly seven months and then I started to feel better. The dizziness and balance problems for me then were constant 24/7. I had started to get the odd day where I would feel better for a few hours at that point and decided to go back to work. I didn't really want to because I still felt awful and extremely dizzy but looking back I suppose I did the right thing. What I am saying is don't worry too much about the stage you are at now - you will get better! Keep going with the spray as I think it takes a while to start working. Sam is right - you do have to use them correctly. Apparently if you can taste the stuff in your mouth you haven't used it properly. Are you still working Jemma?

Jemma - my ears do crackle but I always think it is just the wax in there and I do sense crackling when I move my jaw! I had the ENG (the one with the goggles) but I wouldn't do the caloric one as I was scared! At that time I was really suffering and couldn't bear to do it. I also had a hearing test and the ear pressure test. All of these were normal. Jemma, I don't know why your ENT said that if all these tests were normal then it would not be inner ear related because many, many people have totally normal tests results and actually do have Labs/VN. You will realise yourelf that it is your ears over time. With me, when I am feeling really dizzy I have a pressure in my ears especially the right ear. I cannot pop my ears. I often get slight pain in there (not too bad). And, all sorts of things set me off - viruses, allergies and the time of the month. My hearing can however, be very sensitive -sometimes I just cannot stand loud noise and it sets me off feeling dizzy and off balance. So here I am - all tests normal - suffering from ear problems! In the early days I couldn't bear to have people talking to me - the sound of their voice would set me off, I couldn't read a magazine and I couldn't talk on the phone. Someone doing the dishes would send me crazy! Even now after four years I can still have problems when looking down to read a paper, this doesn't happen every time though! Also, looking up sends me dizzy. It can be a very lonely illness!

Sam - someone said to me a while back that you should always do your VRT - like forever! Her specialist had told her it is like keeping fit - if you don't do it you get unfit - so, if you don't do VRT you relapse. I am not a one for doing these exercises now and haven't done them for a couple of years but I do plenty of walking and keep myself very busy.

Hey Gloria, the weather in Scotland is never good - lol! We always stay in a luxury caravan just outside Aviemore but they only have one caravan for rent on the site where we stay and that had been taken. All they had left was this eco chalet! It was quite large (two bedrooms) but compared to the rest of the beautiful log cabins on the site it stuck out like a sore thumb. We called it the 'garden shed'. It was built with untreated wood - I know it's supposed to be eco friendly but it was so embarrasing and didn't cost us any less either. The furniture was all wooden and soooo uncomfortable. The bed was one of those low wooden ones and all I did was bang my toes and knees off the sides all night! Then I had to crawl into it and crawl out again - not good! We all came back in bits - good job we only stayed for 4 days!

Sorry to hear that you cancelled your holiday though. Over the last three years I have had to cancel three holidays down to Scarborough (all expenses paid) because I just couldn't manage it. This thing is so life limiting but we all have to remember that it is not life threatening. It does get better!

Take care everyone

Sandie xx


Hi Gloria - I know what you mean. I keep thinking this is never going to end and it makes me so upset. Tried sudafed decongestants to see if they help the eustacian tube. They make me feel a bit jittery and woozy. Has anyone else tried these?

Am waiting to hear from my ENT - he said only go back to see hiom again if the MRI scan shows anything. (I think he was convinced it wouldn't.) As it showed the mastoid fluid I have sent him a copy and asked him if there is anything he can do for me. I just feel unless I get some treatment this won't go. I am so dizzy every day.

How is everyone else?

Jemma


Wishing this thing would just go away already.. Having a real rough go of it lately.. Been workin gthrough the last 4 months and it really is tiring for me.... I am not sure how much longer I can do.

Home is sooo boring, and I would just sleep more and more, so I wannakeep active.. however, I am utterly exhausted on a daily basis with this thing..... A few good nights would give me some hope.

Sam

Good morning everyone

Had a reasonable nights sleep - Sam I take valerian capsules at night & during the day if i feel over anxious. I find they give me a good few hours sleep at night & do help keeping me calmer as well as relaxing tight muscles. You can buy them in any health food store - (although i buy Solgar as I think their products are good quality). Equally they are non habit forming & do not have the side effects and nasties if you take Valium, Xanax and the like.

I so know how you feel about trying to keep going with this thing. It is relentless isn't it. I too am at home as find it difficult to either want to do anything or even organise things because I never know how I am going to feel one hour from the next. It's my wedding anniversary today and I feel really upset because even though my hubby will take me out for a drive somewhere this afternoon for a break & change of scenery, I can't face the normal celebratory meal or week-end away which we normally have done. He is so patient but I feel I am letting him down. My anger is getting so pent up, God forbid anyone should confront me because they will get a real smack in the face!!! I shouldn't say that should I?! My mental thoughts only - I am a pacifist really!

Thank goodness we have this site. I do find comfort in being able to express how I feel with others who, very unfortunately, are suffering the same.

One thing, though, I am finding doing the VRT exercises everyday x 4 are helping. In fact, if I do them they do make the wooziness better. Sam - don't know where you are based, but have you done these? I did forget to ask my physio yesterday about the need to do them long term but promise i will ask next week. Whilst I am doing Sandie's exercises she posted earlier, my physio is also giving me some different ones to suit my needs which I think is important as we all are different.

Jemma - Sudafed is ok if you take it for a max of about 3-5 days because decongestants taken long term cause rebound congestion! So occasionally is OK but you are right - they make me really jittery. Honestly, whatever you take for this thing - you're damned if you do & damned if you don'T!

Love & hugs to you all xx Gloria


Hi Gloria - just wanted to ask as you have been diagnosed with eustacian tube problems, do you have muffled hearing? I have read that one of the main symptoms of etd is dulled or muffled hearing and even though I have all the crackling and strange pressure in there, my hearing is fine. Wondered if your hearing is affected?

Jemma x


Hi Gloria,

Yea relentless is an understatement. I am pretty active, but I do occassionally do VRT.... I find it sometimes to be too overwhelming for me and I take the milder approach which is usally jogging or stores or some other form.. But I am pretty active I think.

I should probably just push through it, and continue the VRT...

I am on as SSRI, -- I dont know where I would have been without it.. I was a very anxious person before this illness.... Imagine that... heh... Its something I need.

I am just hoping for a small break soon.. Had one decent day last weekend... So I am hoping that more come soon.. I am in dire need of some hope to get me through this blip... In all honesty... your anger is a good sign.. Its when you just stop getting angry that you've given up.....

Sam


Hey Jemma,

I have had my eustacion tubes blocked... For me, its not mostly about the muffled hearing.. Its usually fine.. Its the odd sensation of having it blocked.. or the opposite that its too open.... Maybe your hearing is affected slightly, but for me it was never really a hearing issue.


Hi all,

It is so nice to read your stories. Although Labs is a rotten thing to go through, I can find some comfort in knowing that I am not alone.

I pulled a muscle in my neck in May of 2009 and two weeks later the symptoms of Labs came on strong. Lightheaded, dizzy, nausea, weight loss, panic attacks and major anxiety. My GP wrote it off as PMS syndrome and told me to take Xanex and Lexapro. LOL Little did I know that eventually I would have to take Zoloft just to get through each day. I had two ER visits. Cat Scan normal. Went to an ENT and she diagnosed Labyrinthitis. Most of my symptoms have disappeared. I now have a lightheaded, walking on a funhouse floor feeling just before and during my period. Does anyone else feel this way too? I take Allavert and Patanase for allergies to keep my nasal passages clear. I was told by my ENT that most of the worst symptoms would disappear within 6-8 weeks. But I will have "moments" for up to a year. Well these "moments" sometimes are days! If anyone has an good info, let me know. Thanks


Sam - yes same here, i am sure mine are blocked which is causing this constant imbalance feeling. I can feel something is wrong in there and they crackle when i move my jaw which they never used to do. Only one ear will pop but like you say my hearing is fine to me.

My private ENT saw the results of my mri scan and said the mastoid thing is nothing to worry about and i dont need to see him again. He said if my symptoms dont improve i should get my gp to refer me to a neurologist. I dont see what good that will do, my brain scan and blood tests are totally normal!!!

The evidence I have that this is an ear thing are: slight right sided hearing loss fluid in right mastoid air cells crackling in eustacian tubes pressure in ears

I cannot believe the ENTs are so uselss they are telling me this is not an ear problem - what else can it be? I really have no faith in doctors whatsoever!!! I would have thought if I have fluid in my ears thould be trying antibiotics or steroids or grommets.

Melissa - welcome to the site. Glad you have improved since May. My experience is that you cannot rely on anything the doctors say regarding these conditions, the best thing is to hope that with exercises and time you will gradually get better although I am not really the best person to advise you as I have no answers myself yet.

Take care everyone x

Hi Melissa, My labs started about a year ago and I still feel dizzy and unbalanced at certain times of the month when my hormone levels are changing. I do actually still have plenty of 'moments' although I think it gets easier to deal with the longer it is around. It doesn't stop me doing anything during the day, it is just disconcerting. I feel a bit panicky about it sometimes, but mostly manage to keep it under control! Just wanted to let you know I can relate to what you are saying. I just try to eat well, exercise, don't drink caffeine - hardly any alcohol... You would have read here lots of ideas about supplements to take like gingko etc. Good luck.

Hi to everyone else. Hope you are going okay. Cathy


Its been a while since I last posted an update, basically Im functioning as normal as I have ever been but like Cathy I still have moments where I feel unbalanced, it seems to really set me off in bright crowded places like food courts and shopping centres, I have started doing martial arts training again and work out 5-6 days per week, I still have problems with pressure behind my nose as well as sinus issues but Im using a Neti Pot daily to flush my sinuses as well as using a steriod nasal spray which does seem to offer some relief. I have eliminated red meat and pork from my diet and only eat small amounts of chicken and fish, Im basically slowly progressing to a Vegetarian diet, I also no longer drink milk or have any dairy products, Im still doing acupuncture twice a week and feel it is helping me in a big way. At the 10 month mark Im am positive if I continue to eat healthy, take vitamins/herbs and stay active I can feel almost 100% by the new year.

DC

Hi Everyone,

Not been around for a couple of days - feeling lousy, weather lousy and my blocked ears are driving me mad - I think I may have an infection in the left one again. SCReeeeam!!!!

To answer your earlier question Jemma - no my hearing isn't affected a bit muffled but I can still hear ok.

Cathy - lovely to hear from you - are you based back home in Australia or are you in the UK? Is most of your month trouble free or is it slight off balance every day & are you still seeing a GP or ENT person?

Welcome Melissa. I'm coming into month 4 - not long by most people's standards. My wooziness is with me all day & it's the nausea that makes me feel so wretched although this comes & goes.

Sandie- hope your days are being good- you mentioned you take Stugeron when you have to - do you find this makes you sleepy?

Gary - hope you are getting on & having some good moments.

Sam - I've had only what can be described as a few good hours so far & even then that wasn't perfect - so living in hope.

Sandie's addage about this not being life threatening - someone else I knew with this said when she woke up & realised she was still alive - she said well I'd better carry on living & do a good job of it! Some thought in that i suppose.

Keep it together everyone!

Love & hugs Gloria xx

Sandi


Hi everyone. This started on August 15 when i got out of bed in the morning. I was very dizzy and off balance. This lasted for several days and then went away, i was still feeling a little bit wierd for the next week and a half but it went away. Then on August 28 it started again. I woke up very dizzy in the morning and since then ive been suffering from it 24/7. I dont know if i should start counting from august 15, sice it pretty much went away. Or should i start counting from the 28 witch was when it never left and got a bit worse. So i dont know if ive had this for five or seven weeks.... what do you think? Im only 21, am i gonna be normal again? im very scared!

Hi Liana

I'm sure mine started gradually. Even though I went down with this - big time - since last week in June - in May after a stomach bug - 2 days later I was very giddy. It went away but over the next month started to get more noticeable until June & then constant with sickness & everything but I was also unwell with a bad chest infection as well - so virus after virus!

Have you been to your doctor & have they diagnosed you with labyrinthitis? As you probably have read from the other postings on this site - if you have been diagnosed with Labs - then you do get better, but it is a gradual process - although a lot seem to recover within 8-12 weeks. Have you had any viral infection or is it just dizziness - are there any other symptoms?

I' have never had anything like this before & it has been the scariest time of my life, but thank goodness for this web site - it has kept me sane knowing there are other people with the same symptoms & who you can off load to as most people have never heard of it or don't understand the symptoms unless they have had it.

DC - good to hear you are having a more positive time - encouraging for us all! I'm doing vitamins - what are you taking?

Jemma - I think our ear thing is all related to the viral infection that caused labs in the first place - because I never had anything like this before! Whilst my ENT guy said he thinks when I see him in 6 weeks my ears (ears not labs!) will be much improved. Given how they have felt over the last couple of days - I am not convinced. Basically, if nothing serious shows on the MRi - then it is a time thing. They will only suggest grommets if your ear drum looks like it is being sucked in - which is a sign of Glue ear. Have they told you anything like this?

Keep us updated Liana.

Take care all Hugs Gloria x


Gloria, In regards to herbs I take Reishi which is a tonic for your entire body but its a really powerful immune booster, I also take Gingko for the inner ear, its really good for getting more blood flow and oxygen into the inner ear so it can heal quicker..

DC


Hi Gloria - no the ENTs so far have basically said it isn't an ear thing as nothing is showing on their tests and they say my ears look fine when they look inside but I can feel they are blocked and crackling and I am sure the left is totally blocked because only the right one will pop. The finding of fluid in the mastoid cells supports that theory because the mastoid drains into the middle ear. I am sure if the left one would unblock my dizziness would end or improve greatly. I am really thinking now that I don't have labs at all but just totally blocked middle ears and eustacian tubes. My symptoms don't really suggest labs or that's what the doctors say as I was fine on the caloric test, I don't feel nauseous and the tablets like betahistine for inner ear problems don't touch me at all. Mine started as more of an allergy thing or a reaction to medication rather than a virus. However it would be nice to know for sure rather than guessing all the time.

I am going to see another private ENT for a second opinion next week - more !!!

Hope everyone is ok x


Hi Gloria

My last post went missing!

My Labs started like yours - I got a stomach bug -gastroenteritis and lost about 2 stone in weight! Put it all back on now though (and more).

Mine had really started in the October time 5 years ago when I got quite a severe throat infection. It was the first time I had ever lost my voice (much to the kids delight!). A couple of weeks after that I started to feel dizzy, though it was only mild dizziness. I used stemetil to stop it and it would happen every morning and get better as the day went on. Then the following March I got up one Saturday morning and that was it. I was sooooo dizzy and I couldn't lift my head off the pillow for three days. The doctor told me to take three stemetil at once and I was able to get out of bed after that. The stomach bug seemed to coincide with that and I went on to lose the weight over the next few weeks. So, Liana, I always count my time as starting with Labs from the March when it really hit me big time!

Gloria - I am going to try again with the front door this weekend - haha! The weather is supposed to be lovely all weekend, so nice!

I went into town all by myself on Tuesday. I was in for three hours. I did take a stugeron before I went and though I did suffer minor dizzies I was basically ok. Since I have had this thing (five years next March), I have never really ventured into town on my own much as I cannot bear escalators, lifts and all the people etc. I need someone to hang onto! Even though I would go to work on my own I have always had someone with me! Strange isn't it. I think it's the fear of being in public places and then suffering an attack with people who don't know you round you. At work everyone knew how I was so it makes it easier for you when stuff starts to happen which it did on many occassions.

Gary - where are you? Still thinking of you and hope you are ok.

Sandie x


Hi everyone: Haven't posted for a while, because I kept on getting kicked off, so let's hope this time it works. Liana, my bout with VN started exactly like yours. Woke up one morning felt sick, and quite dizzy. It continued for a few weeks, then eased up 90% then came back full force. I think that is part of the illness. Don't know why, but it's very much an up and down thing. Probaly has to do with the brain's ability to compensate. Let us know how you are doing. Jemma, I had blocked eustachian tubes in the beginning too, went on for a long time, about 2 months. Then I was left with residual crap, dizziness, nausea. etc. Two years next week.

I have been pretty well symptom=free since the doc put me on diuretics (I'm only taking half of one pill a day.) I'm to stay on them for a month then go off and then see what happens. Doc thinks I may have of form of Menieres (secondary hydrops or something).

The VRT physio said I am doing much better and don't have to come back unless I have a relapse. So that was good news. It would be nice to see the end of this because 2 years is enough.

Sandie, are you well?

we shall overcome, everybody.

Maria


Hi Gloria. My GP dx with vertigo, and thats all he said. im guessing its labs cause all the symptoms point to it. ive had blood tests which were all normal. but still havent had any tests in reguards to the ear. i had my appoinment with the neuro till the 30th of this month but i was feeling a lil worse and called them up and im going to see them tomoro. im a little scared of the cat scan results but hopefuly everything will come out normal. so my symptoms stared when i got out of bed, i really dont remember if i had true vertigo but the dizziness was real bad. i stayed in bed all day for the first day. no vomiting. the next day i had no balance and everthing kept moving when i walked. so i was very dizzy for the next two weeks with no other symptoms. then everthing kind of settled but i was still very off balenced. so two weeks into it was when i started feeling ear fullness but there was no ear infection. then tinnitus on and off. days later i got cold like symptoms only for two or three days. Then a little fluid in the ears which they gave me antibiotics. my ears got better. so by the fourth week into all this my imbalace issued were still there but i was still moving around fine without any medication. the fifth week my ears started acting up a little again just fullness now and then, so i went to the doc and he said they looked fine but still gave me more antibiotics just in case. so im starting on my sixth week and after my dizziness was getting alot better it got worse again. i started the second round of antibiotics three days ago, i dont know if its a coincidese but my dizziness got worse the day i started taking them. and as for the ears, before i saw the doc it was fullness now and then, now its fullness and the noise. oh and yesterday i was so frustrated i tried cleaning my ears and wet sticky ear wax came out, thats not normal is it? so do you think its the antibiotics or just a set back? six weeks and dont see an end to this! Hope i didt confuse you. so my next stop is the neuro, although i know i should be seeing an ENT. well thatll be my next stop if i dont get any answers.


Hi Maria

My post popped in just before yours and I also hadn't posted for a while because they weren't getting through!

I have been quite good recently. Still dizzy now and then but my balance is good. I had an awful spinning attack at the checkout in Asda the other day and I really felt bad. One of those spins where you feel 'I have just gotta get out of here'. But I stayed and it passed after a few minutes and I was ok and able to continue loading the groceries! But, glad to hear that you are feeling much better. Long may it last! Two years for you - such a long time.

Jemma - bethahistine does not help loads and loads of people. Also, lots of people have normal results when they have the caloric test done and also other tests. I didn't have the caloric test but all my other tests were normal and my hearing is perfect. I have also never been sick though I have had slight nausea. The doctors CANNOT see right inside your ear so therefore they cannot see any damage that has been done to your inner ear. Using scans etc they can see some stuff but not everything. They mostly go by symptoms. When they do scans they are mostly looking for other stuff i.e. tumours as a process of elimination.

Gloria - how are you today? I have painted the front door today so keep your fingers crossed that it's not going to blister all over!

Here's hoping you are all having a better day

Sandie xx


Hi all, Liana I just want to address your pattern with this illness. The doc put me on antibiotics (a replacement doc who was young),first I got better then I got much worse. When my doc came back from his trip to Europe, he was horrified to find out I was on antibiotics. They don't give antibiotics for viruses, only for infections. So I am not sure, you should be on them at all.You might be upsetting your stomach too. But yours sounds like a typical case of Labs, a lot of us have had this same pattern you are experienceing. Have you tried Serc? I did find, when I was so dire I thought I was dying, that it made me feel less dire. Worth a try, although Sandie is right. They don't work for a lot of people. Another thing Liana, the fullness in the ear is probably some fluid build-up, not necessarily an infection. I did feel worse when I was on antibiotics, and only had one round.Is it always the same ear that feels full? Do you get a kind of fluttering? I can't tell you how alike my symptoms were to yours. Went on about 2-3 months, then settled into a pattern of ups and downs, but never as bad as the original episode. So hang in there, you will get through it. I'm sure your CT Scan will be fine. You might want to see if you can have balance tests, so at least they can confirm what you have.

Gloria, I always have an upset stomach when this thing acts up. I asked the doc why, he said everything is just a lot more sensisive. I always feel like I'm coming down with the flu when I have a relapse. I know it is the scariest thing.

Sandie, I thought about you this morning when I went to the hairdresser. It stil makes me anxious, I always worry I'm going to have spell, even though I haven't had one in over a month, the anxiety regarding stores, subways, supermarkets, never leaves me.

take care everyone Maria

Hi folks,

Haven't been on here lately as have been feeling rough/had stuff on this last while.

Firstly, I got good news from the neurologist about the thing on the brain, the 2nd MRI scan showed a little contrast uptake, but the doctor repeated what he'd said before, that he thinks it was a coincidental find when they were scanning for a cause of the dizziness. I'm to go back in another 6 months for another scan and check the thing again and they'll decide then if anything needs to be done. So, as you can imagine, I'm pretty relieved, I'm a nervous sort of a person at the best of times so was delighted to hear that news, it's a wake up call I guess, my body telling me to take it easy. So then next step is to try to find a cause/diagnosis for the dizziness.

Liana, your story makes me wonder about doctors sometimes. They just seem to fire out anti-biotics for no reason. As Maria has rightly said, they're useless for viral infections, and only kill bacteria. The downside of anti-biotics is that they also kill the good bacteria in your body, weakening your immune system further. I partially blame this for what happened to me, I had a wisdom tooth removed last November and was on two courses of them for that, and had a severe chest infection at the end of last year, another course for that, and it was shortly after this that my dizziness began. Yes, they do a job, but if you can do without anti-biotics so much the better. Yet doctors fire them out for colds and flu, when they haven't got the slightest effect on viruses, it make you wonder sometimes. Going back to Michael's posts about pro-biotics, I wish I'd taken them back then, things might've been different now. Gloria, the way you came down with this sounds similar to me, a weakened immune system didn't help.

As for the Serc debate, I'm still on them, and find them useful for reducing the tinnitus in my left ear. It flared up again yesterday, but seems ok today. But as Sandie said, they help some but not others. I was told to stay on them for at least 2 months, rather than just a few weeks as they take time to kick in, Ginkgo didn't work for me but again it probably takes time.

Apologies for the long post and hope everyone feels a bit better soon

Gary.

Hi folks,

Haven't been on here lately as have been feeling rough/had stuff on this last while.

Firstly, I got good news from the neurologist about the thing on the brain, the 2nd MRI scan showed a little contrast uptake, but the doctor repeated what he'd said before, that he thinks it was a coincidental find when they were scanning for a cause of the dizziness. I'm to go back in another 6 months for another scan and check the thing again and they'll decide then if anything needs to be done. So, as you can imagine, I'm pretty relieved, I'm a nervous sort of a person at the best of times so was delighted to hear that news, it's a wake up call I guess, my body telling me to take it easy. So then next step is to try to find a cause/diagnosis for the dizziness.

Liana, your story makes me wonder about doctors sometimes. They just seem to fire out anti-biotics for no reason. As Maria has rightly said, they're useless for viral infections, and only kill bacteria. The downside of anti-biotics is that they also kill the good bacteria in your body, weakening your immune system further. I partially blame this for what happened to me, I had a wisdom tooth removed last November and was on two courses of them for that, and had a severe chest infection at the end of last year, another course for that, and it was shortly after this that my dizziness began. Yes, they do a job, but if you can do without anti-biotics so much the better. Yet doctors fire them out for colds and flu, when they haven't got the slightest effect on viruses, it make you wonder sometimes. Going back to Michael's posts about pro-biotics, I wish I'd taken them back then, things might've been different now. Gloria, the way you came down with this sounds similar to me, a weakened immune system didn't help.

As for the Serc debate, I'm still on them, and find them useful for reducing the tinnitus in my left ear. It flared up again yesterday, but seems ok today. But as Sandie said, they help some but not others. I was told to stay on them for at least 2 months, rather than just a few weeks as they take time to kick in, Ginkgo didn't work for me but again it probably takes time.

Apologies for the long post and hope everyone feels a bit better soon

Gary.

Hi Everyone,

Had a really nasty week - Maria just as you said when it gets really bad it is just like flu - bad upset stomach, headache. For me the nausea is the worst & oh so tired - looking on the bright side - have lost a few pounds of weight this week. Good news for you though Maria - long may it last!

Sandie - like you I have lost a couple of stone since this thing started - which let me assure you I could have done with losing!! However, I think I would have preferred the Weight Watchers way rather than this! Glad to hear the front door has now been completed. I assume, like me, you do the painting etc in your house!! My hubby, true, is busy at work - but hates DIY! Months ago we bought 2 bathroom cabinets to be put up after the bathrooms had been painted. Well, that had to be put on hold - anyway, having taken my anger out on these 'dumped' cabinets in the hall, he painted the rooms this week!! Made a jolly good job of it too - so unfortunately for him he's found himself some more painting to do!!!

Gary - great to hear from you. Completely understand about how difficult it is with communicating & dealing with other people & things when you feel rough, the only thing you can do is retreat into dealling with yourself & getting through each day. Good news about the tumour though. That said, wouldn't it be nice to have an answer for the dizziness. You are so right, too, about the anti-biotics thing. The previous year I seemed to have one infection of sorts after another - and of course was given antibiotics. This, I feel made me so susceptible to picking up this evil little virus. I'm still on Serc. It doesn't help with the dizziness but the ENT guy said it is good for getting good blood flow to the inner ear - which is what Gingko does. It also doesn't interfere with recompensation - so I'll carry on taking it.

Liana - unless you have definately got an inner ear infection, then I wouldn't take anti-biotics. I've just bought another thing called Ear-Heal & Ear-Ok. Look it up on the internet. It is herbal/homepathic - people have said positive things- it is an alternative to antibiotics for ear infections. I'm a sucker for all this stuff - so I'll let you know if it does anything!!

Jemma - if it is just dizziness you get - have you seen an osteopath or chiropractor. Apparently, on the side of the neck are 2 muscles called the sternocleidomastoids which if get imbalanced cause dizziness -worth a check maybe.

Anyway - sorry for the long post but good to talk as they say. Have good week-ends all & hope to hear from you.

Love Gloria x


Hi everyone

Gloria - sorry you had a bad week, mine started badly and improved slightly but still far from normal. I'm only 27 and sometimes I feel so depressed and scared that my life is never going to be the same again. I dread waking up each day. Before all this I was really happy, had a good job, great boyfriend (still have him) and was looking forward to a lovely holiday in venice which had to be cancelled. Now I can hardly stand going in a shop and I know what everyone means about losing weight. I'm down from 9 stone to 7 stone 7 because of the sheer stress and misery of this illness and because I cant eat out in the nice places I used to as its so hard to do normal things anymore.

Do you go out at all Gloria - I know you go on walks but do you go for meals out or cinema, shops etc?

Sandie - thanks for your words of support. You know what you're talking about you have suffered long enough! I agree with you that I'm sure it is an ear problem it's just that the doctors wont agree, which is so frustrating and makes me wonder what is going on. Most people get some kind of diagnosis even if there is no real treatment other than time but the fact that I haven't makes it even harder to take!

The antibiotics thing is interesting, i've been on a few long courses before this happened so maybe it weakened my system.

Take care all x


Hi everyone:

Spoke to soon about this recovery, I have some flu symptoms, sore throat,etc. maybe nothing. I'm stuffing myself with Echinicea. The weather has turned cold, probably related to that.

Gary, it's interesting about the Serc. I only took a small amount and it seemed to help just a little. The ENT told me Serc is only for Menieres and other inner ear disorders, it doesn't work for anything else. So wouldn't that mean, since you find they are kind of working for you that your dizziness is due to that?

Gloria, sorry to hear you are having a rough week. Doesn't this thing seem endless? Losing weight as you say may be a perk, but I'd rather be a little heavier and not have this. Feeling normal is what I am aiming for.

It's Thanksgiving weekend here in Canada, so I guess we have to be thankful. I'm thankful I am so much better (a lot of the time) than 2 years ago. So it's Turkey dinner on Monday.

That's all everyone, hope you are all having a better day.

Maria xxx

Maria,

Sorry to hear you're going through a rough patch, a friend of mine has recently moved to Calgary from Ireland and said it is getting cold, we don't get bad winters like ye do over there so this'll be an eye opener for him :)

You are right about the Serc, it is for inner ear disorders, it increases the blood flow to that part of the ear. There is a lot of speculation about whether it is any good or not, some people think it's just a placebo, whereas others swear by it. My problem is that the two ENT's I've been have given different diagnosis, one thinks I have BPPV, based on the VRT he gave me to do, and the other thinks I have an "inner ear problem but not labyrnthitis" but was no more specific than that. I'll continue with it for a while, and start the VRT exercises that Sandie posted a while back. I asked the neurologist if he knew of any neuro-otologists in Ireland, but he didn't so I may have to go to Belfast or head to the UK, and my health insurance won't be of any use there. But you get to a stage that you're so fed up feeling ill you'll try anything.

I see that some people are having problems posting on the site, if anyone has a Facebook account, try signing in through that and then posting, it works well for me.

Ok all, time for bed, take it easy

Gary.


Hey Gary,

So nice to hear from you! Good news about that tumour they found. If you don't have to go back for 6 months, they can't be seriously worried about it!

You have mentioned having a severe chest infection and then your dizziness starting soon after that - this is the classic sign of Labs - occuring a couple of weeks after an upper respiratory infection.

Gloria don't worry about your weight loss - you will soon put it back on, haha! Mine didn't stay off unfortunately! And, the front door was a disaster - blistered again and it wasn't even hot. Problem is I live in one of these new build houses and the front door is a half glass door. A couple of months back we had new yale locks fitted back and front (because my kids have problems locking doors and I thought it would be easier for them to push it shut and then it would at least lock itself and I wouldn't have to lie awake at night worrying that they would lock the doors on their arrival home in their drunken stupors -lol). Anyway, the doors have a thin metal covering and this is where the problem lies. My husband thinks it is the contraction of this metal to temperature that is causing the problem. I could seriously SCREAM!

And, yeah I do EVERYTHING in our house. My husband doesn't have a clue!

Jemma - a tip for the cinema - it is very hard to go there when you are like this but if you have a better day give it a go. I used to feel awful in there especially when the adverts were on at the beginning but I started using ear plugs (the foam ones) and they were amazing. You can still hear everything but it just cuts out the loudness of it all. Noise was one of the things that used to send me crazy but it does get better as time goes on.

Maria - so sorry that you feel bad again but as you only too well know this is entirely normal! I felt real bad yesterday morning but I took my stugeron and walked just over a mile to my dad's house on my own and I was fine! I am taking them now when I need to do anything and they are actually used for the treatment of people with menieres. At the moment I swear they are helping me. I don't take them regularly, just when I need to do something impotant (like have a life!).

My cousin lived in Calgary for many years - she went over there from the UK when she was eighteen and lived there until about 5 years ago (she is now 46) when she brought all her family back with her. The boys who were born in Canada say they are going back once they have finished their University education! But I know that your winters are FREEZING - I like the cold but I don't know if I could bear it!

Well, hope you have all had a nice weekend.

Take care

Sandie


Hi everyone. so my labs started six or eight weeks ago. like ive said i dont know what to say when they ask me when it started because i got it for a couple of days and it went away, then a week and a half later i got it again and since then never left. so is it six or eight weeks now? anyway, i still feel horrible. My ear feels like its going to explode. a few days ago i thought i was feeling better and now i feel horrible again. so i have a question for all of you, at what point do you think its best to stop medication? I tried stopping but i feel horrible, so is it too soon for me to stop the meds for the dizziness? oh and one more thing, has anyone experienced fluid in their ear? when i put my finger inside my ear, it comes out wet, is that normal? its not dripping out but i dont think i had this a couple of weeks before. any thoughts please write back


oh and one more question, ive always been able to drive. it seems as if when i drive im not dizzy at all. does that mean my case is milder? is that good or bad? has anyone experienced this?


well of course i wouldnt drive the very first two or three days, buy after that ive alwas been able to drive. anyway, how are guys feeling? any inprovements?


Hi Liana

I too have fluid in my ear especially in the morning and it is worst on the left which is my worse ear. I dont know if it is normal. Also driving or being driven is one of the best things for me, I feel almost normal doing that. It's very strange. I can't really help much though because I still don't know what is wrong with me. The doctors are saying it probably isnt an ear thing because my tests were all fine, except a bit of hearing loss. I diasagree as I'm sure it is an ear problem but not labs. I have been dizzy for 6 months now without a break, its very tiresome and scary but hopefully you won't be the same as that. If you get any answers let me know as it sounds like we have some similar symptoms.

Take care Jemma


has anyone tried stugeron or cinnarizine? i have a friend who has her labs under control with this med. she says she took it for three months and then slowly stoped it. but then again it could be plazebo or whaterver, any thought on this....

Hi All, Firstly - Happy Thanksgiving Maria! Enjoy your turkey! Hope you're feeling a bit better.

Well - had a couple of not so bad days - thing is, even if you feel not brilliant, you seem to think it's good because it is not as horrendous as your worst days. OMG - does that make any sense?!!!!!!

Liana/Jemma isn't it weird about feeling good in a car? Me to - when I went out first time in a car, i really thought I was getting better - then the car stopped & I felt all dizzy & horrible again.

Liana, labs has a horrible way of making you think it is getting better & then coming back with a vengeance! What you describe as feeling better & then horrible again is typical. This has happened to me so many times. Jemma - no I haven't been to cinema, restaurants or anything. This is so frustrating for me, like you, I love going out & socialising, shopping etc. but all that has been put on hold & I hate it & it makes me so depressed. So you're not alone.

As with regards the Stugeron cinnarizine thing - I find they make me so sleepy & because the ENT guy said not to take them unless I have to as they hamper compensation. That said, as Sandie says, if you need to feel a bit better & more able then take them, but not every day. Sandie - do you find they make you sleepy?

Sandie - interesting comments about your front door - just to change the subject!! We live in a new build with exactly the same type of front door - metal covering. My task was to paint it this year but for obvious reasons didn't get round to doing it. Maybe i won't try after your experience or do you think we need to get a special metal paint & not the normal stuff? We could turn this into a DIY site as well - you & I lol!!!!!!!!!

Speak soon/take care Hugs Gloria x


no one answered one of my questions, when is it best to stop taking meds?


are you guys off your meds?

Hi Liana

Your question about meds - at the beginning i.e. the first month I took stemetil when I was very nauseous. I have also been taking beta histine (Serc). Serc helps with the blood flow to the inner ear and whilst for me it doesn't stop dizziness but it takes the heavy pressure feeling out of my head a little. My ENT consultant has got me to continue with the Serc because he says it actually helps with recovery and does not hamper any balance compensation which of course all anti-emetics like stemetil, cinnarizine do hamper recovery. Therefore, if you can avoid any meds like that, then it is best to do so. Although my consultant did say now and again, if necessary won't do any harm. It is when you take it every day it is not good.

So for me, I only take Serc and nothing else - very occasionally I take a stemetil if i have a really bad relapse, but as they make me feel so groggy anyway, I try to do without. I try to work through the dizziness and am doing Vestibular Rehab exercises - which although you have to do 4/5 times a day - I find they help. As my ENT guy said - if you have a broken leg you rest it but with labs you resist and challenge it making yourself as active as possible.

Liana - you said your doctor diagnosed you with vertigo - you need to get confirmation that you don't have Menieres, BPPV or any other balance problem other than labs because treatment can be different. For instance with BPPV, they can do a manouevre which tests for this & then correct it. Menieres tends to be intermittent & people then take Serc/stemetil when they have an attack. So try to see an ENT person if you can & get some clarification.

Hope this helps

Take care Gloria x


Hi everyone

Liana - if you have been on meds for dizziness for the whole of the 6/8 weeks you have been dizzy then this is really far too long. They are only supposed to be taken in the first couple of weeks when the dizziness is at it's worst.

Labs/VN is caused by a virus and this virus attacks your middle ear where it damages the nerves etc in there. This is why you feel dizzy/nauseous/off balance - because your damaged inner ear is now sending dodgy signals to your brain. We use lots of different senses i.e. muscles, ears, eyes etc to let our brain know which way we are turning. If one of these senses is not working properly then the brain cannot sense which way the body is moving hence the dizziness etc. The ear actually sends thousands or messages per second to the brain! So, when this damage has occured the brain has to retrain itself to ignore these faulty signals from the inner ear. In most cases this happens within 6/8 weeks but for some (i.e. me), the brain cannot recompensate. Stemetil or any other meds you might be taking actually numbs your brain so what you are doing is actually delaying any recompensation. I am not a doctor but I don't think you should still be taking them.

Lianna - I also suffer from 'wet' ears. Sometimes I feel like there is fluid in there and if I stick my finger in it comes out wet but it doesn't happen all the time. Also, as regards driving I am not a driver but a passenger and sometimes I feel terrible in the car. It is obviously to do with my vision but it doesn't happen all the time.

I have been taking Stugeron for a couple of months (I have however only taken about 12 pills in that time). I used them every day while on holiday (1 per day) and I was brilliant. I have used them a few times since when I have had to go shopping in town and they have also worked on those occassions. The actual dosage for people with menieres is 2 tablets, three times per day so I can't see any harm in taking one now and again. They are actually only a antihistimine and don't have any of the side effects of Stemetil etc. I don't feel sleepy with them but there again I only take one but hey I would rather feel sleepy than dizzy any day! http://www.patient.co.uk/medicine/Cinnarizine.htm

Serc, however, can be taken forever without any side effects and does not hamper compensation.

Have a look at this article re cinnirizine (stugeron) and another type of antihistamine combined - http://www.medscape.com/viewarticle/508006 - looks like it has been used for over 20 years in Germany with good results.

I was in town again yesterday and had been feeling yukky yesterday morning. I had to take my daughter to the dentist so I couldn't avoid it so I took a stugeron and I was fine. Only one 'blip' when I was there but hey I can cope with that - I'm tough - haha!

Anyway, Gloria, I can't bear to look at my front door! I used the specialist paint for exterior wood and metal. But maybe not the right one! I think you should paint yours and see if you do a better job! Then you can tell me what you used!

Take care everyone.

Sandie x


HI everyone:

all this discussion about front doors. Mine desperately needs to be painted, but I keep putting it off. Sandie I got a chuckle about the younger generation not locking doors. The same goes for leaving lights on etc. And taking long showers, you'd think they'd be working in the mud if you judge them by the length of their showers!

Liana, I don't know what meds you are on, but I was on a small amount of Serc, and when I tried to go off them after a few months, my symptoms came back full blast. So I went back on them for a couple more months. Today I am quite dizzy after a really great month. I came down with this thing in October,two years ago it came back big time last October, so why shouldn't it come back this October? I'm fighting a cold so I guess it is because of that.

Liana, when I first came down with this, I didn't go to movies, restaurants even the subway. It took me 7 months to ge up the nerve. I was okay locally, even with the car, but get me too far, and I would get really panicky. Honestly does this thing ever clear up?

Mariaxxx


Hi Maria,

I am sorry Maria but my son (aged 20) must hold the record for taking showers. You just cannot get him out of there! There are five of us in our family and he takes more time than the rest of us put together! And, I have a water meter so I pay for every drop I use (or he uses). Kids, they drive you mad and cost you a fortune. Wait until he has his own water meter!

You are right in thinking that your cold is causing your relapse. Mind you I do remember having a cold a couple of years back and I didn't have any dizziness. My daughter, who is at Uni, wants to come home next week and I have told her she can't because she is not too well and I do not want her germs. Only joking, she can come home any time - I will just have to suffer the consequences. But, it is awful being scared of catching bugs etc because you know it is going to knock you for six, isn't it?

Liana, just want to agree with Maria about the cinema. I did give you a tip about using the earplugs but like Maria, I did not do anything at all for the first 5/6 months of suffering this thing.

Feeling a little bit off today. The weekend is looming and I am going to see Green Day in Glasgow on Monday night. I am praying that I am going to be ok!

Take care everyone

Sandie x


Hi there,

I'm new to this site and am also struggling with an inner ear virus. I've had it for 6 months and am so tired of it. It feels like it will never go away. I had 2 months in summer where it was quite a bit better, but never had all my energy back. Some days are better than others and it just teases you into thinking you're getting better. Does anyone else have muscle aches in their legs and butt? I also feel weak and have no energy or stamina. My ears ache a little sometimes and get itchy and often I can hear my pulse in my ears. Occasionally my ears will hurt on the outside and give me mild headaches. I am not very dizzy, mostly lightheaded when bending over or with sudden head movements. Even moving my eyes in certain ways can cause this feeling. I deal with nausea off and on and will take Gravol if I need to. It usually goes away if I lay down. I'm tired of taking it easy and just want to get on with my life.

Thanks for listening, Susanne


Really having a rough time of this right now.. My head feels all messed up, I cannot quite place it...; Everythings just all jumbled up.. used to be that atleast one symptom used to override the others. etc... Right now, I have a mix of everything and I feel gross.. Exhausted... BLEH!!!

Hi Everyone

Welcome Susanne - sorry to hear you are suffering. When did you first have labs? I'm coming into 5 months & not had a clear day yet! Like you - energyless, exhausted, all muscles spasm - especially neck & shoulders. Also like you i get varying degrees of wooziness - lightheadedness again with head movement/eye movement, headaches & oh so nauseous - so very similar symptoms at about the same stage.

Sam - big hugs - you really are having a rough time. Right now, i have this wooziness all the time - new development. Feel sick more often than not, eyes hurt, head hurts - wish I was a squirrel or hedgehog & go into hibernation for at least 6 months & emerge like this never happened - wouldn't that be great?!!!

Sandie - you are a brave person going to a concert! Isn't one of Green Day's songs called Good Riddance? Hope they sing this for all of us labs sufferers in the hope it sees the back of it all for all of us. Hope you have a brill time - let us know how you get on.

Jemma/Liana how you both doing?

Going to hibernate under my duvet now! Hope tomorrow is a better day.

Love to you all Gloria xx


hi guys. im so sad today. i feel horrible, even worse then when it started. why did this have to happen to me. im only 21 yrs old. i havent been taking any meds what so ever since the third week. last night i was so dizzy that i couldnt sleep, i really wanted to take meds to calm it down but i didnt, im trying to be strong so this can go away quicker, but then again no one can guarante that either. this is so unfair! i cant stop thinking, why me, why me! this is my 6 or 8th week, any coments


Jemma- are you taking any meds now? how long did you take them for


do you think ill be better in 12 weeks?


I can sympathize with everything Im reading here, Im at month 10 and Im still not 100%, but I can say I am 100 times better then I was when I first came down with this. Honestly looking back I have no idea how I got through those dizzy days, I guess I just soldiered on and kept a positive outlook, now I just feel unsteady and a bit off balance, the rocking sensation has finally subsided and I feel like Im getting my legs back.

Susanne, I had the tired legs as well, my legs would feel as though I had run a marathon, very tight and stiff muscles in the lower body. The reason is your muscles are constantly contracting harder to keep you balanced. I also get tingling/burning in the feet and ankles.

Liana, I felt the same way you did when I was at my worst, just try stay positive, this thing will eventually go away, try some Gingko and try to keep moving.. I do acupuncture and massage twice a week which really helps..

DC


Hi Liana

I'm not taking any meds - tried betahistine but it didnt work for me. I have tried supplements like ginkgo and bromelain but not sure if they help.

I had a terrible night, woke at 5am sweating and everything was spinning. It was so scary. I haven't had that before, usually its just general off balance when I am moving. This time I was lying down and felt really terrible. Feel nauseous now and terrified it will happen again. This illness is so scary!

Jemma

Good morning all,

Although not so sure what is good about it! Like you Jemma - had a horrendous night - sweats - I soak the bed. Even lying down now is not comfortable. This thing is pure evil - my dizziness is more or less constant at the moment which it never used to be. My ENT consultant said it was a sign of it getting better! Either he has a warped sense of humour or God willing he is right!

Liana - try to hold in there. Whilst it is the most scariest thing & so unfair - take some comfort in knowing that the symptoms you describe are all what everyone else has gone through or going through and like me, take comfort in DCs post that you do get better - albeit slowly. You never know Liana, you could be lucky & see the back of this thing sooner rather than later which many people do. Are you working or at college Liana - how do you cope with your days?

I thank goodness for people like Sandie/DC/Maria and others who have had this thing and can help us realise that the symptoms we have are part & parcel of this & the normal process. When the going gets tough, I try not to take the meds we have previously spoken about, but I do take a herbal supplement that calms everything down & makes it all a lot more bearable. You can buy it from Holland & Barrett or a large chemist ( if presumably you are UK based) - it is Valerian. This is a traditional herbal remedy for stress & a good muscle relaxant. It is called Valerina Day-time by a company called Pharbio & is about £5.99 for a pack of 80 tablets which lasts ages. Although they say take 2 3 x daily, I only need a couple. Try it. It is not addictive & completely safe. look it up on the internet.

Anyway, will try to fill my day with positive thoughts & hope again for a better day tomorrow!

Hugs to all Gloria x


Jemma,

I so feel for you and you too Liana, you are so young to be dealing with all this and it is a very scary and frightening illness.

I have had it nearly five years now and it scares the life out of me at times.

When I say I have had it for five years I don't mean that I have had it 24/7 for all that time. I do have good periods where it hardly affects me. But it is always there lurking in the background and I have never been totally free of it, but at times it doesn't affect my life too much. I do relapse every so often mainly due to viruses and allergies that I have. So, please don't think that you will never get rid of it because for most people it goes and never comes back!

Jemma, at first I was never dizzy through the night but it did affect me at one time. I would wake up and I would be spinning - not because I had moved or anything, it would just be there. It seemed to happen for a couple of months and then it went away and it only happens now and again since then. Believe me, there are many different symptoms of Labs/VN and they don't all come at once! I have even suffered different types of dizziness if that makes sense!

Gloria I do think your consultant has a warped sense of humour - hilarious aren't they?

I would love to give these consultants a week or so of living with this and then they would sharp find a cure for it - haha!

Well, my youngest is off school today as she is poorly. My husband had it yesterday (stomach bug) so I'm just sitting here waiting for it to attack me - OH FUN!

Take care

Samdie x


Good morning all:

Sorry so many of you are feeling so poorly. It is one heck of a disorder. Seems never ending to me.

Liana, I really feel for you. I was just like you in the beginning. Felt just horrible, so ill, and it probably took about 12 weeks for the worst symptoms to pass. I have to say, I have never had anything so bad. Very depressed too. When I say 12 weeks, not all days were bad, but the ones that were were just plain awful. But eventhough I have been stuck with this for two years, I have had months with very little or no symptoms. And nothing has ever been quite so bad as those first 12 weeks.I find the symptoms seem to get a little milder, the bad periods are shorter and the good periods longer. It will get better Liana, it just has to run its course. I can't believe your Doc saying it's a sign it's almost over. They really are out to lunch!

Jemma, like Sandie, I neve had dizziness at night, that was the only relief I had. Meanwhile everyone kept telling me to try and lead a normal life! Easier said than done, right Sandie? Are you running a temperature Jemma, that would probably account for the sweats.

Am still fighting a cold or whatever (apparently going around ) so this is making me a little dizzy. It always scares me when it comes back. Now my eyes are sore, my stomach is a little unsettled and I just want to go to bed. Will try a walk, I find it usually helps. Funny this is an illness (medical condition, my Doc says,you are not really ill) where staying on your feet and keeping more or less active brings an improvement. Strange isn't it?

DC you have a great attitude. Staying positive for ten months! They say it speeds up recovery. I know I was depressed and very anxious in the beginning. Gloria, good advice about the valerian, I should try taking a while bottle of it! You have been suffering for quite a while too. Last month I had a whole month of absolutely no symptoms. I think the diuretic may be helping, but I will go off them next week and see if the thing comes back.

We're all in this together everybody. There has to be light at the end of the tunnel.

Maria xxx


Went to see another ENT for a second opinion. He came to the same conclusion really - cant see anything wrong with my ears and has suggested I see a neurologist. He did that pressure test Gloria - he said there was a slight bit of negative pressure in the right ear but nothing that would cause what im feeling.

I have been so dizzy today. Dont know how I got through work. I feel my left ear is blocked but when the doctors are telling you otherwise its so hard to believe.

I really am at a loss and don't know what to do next. I feel like going to bed and never getting up again. It's just so hard to stand this and with no answers. I really am so down now. I admire everyone for staying positive and strong - I dont know how much more I can take xx


Hi everyone,

Just reading through the comments reinforces that I'm not alone in this. I really do feel bad for all of you that suffer so bad. How do you even maintain a job? I don't work outside the home and feel like I've accomplished something if I get the laundry done and dinner made. Thank goodness my children are young adults and I don't need to run after little ones.

Does anyone else find that the mornings are the hardest? I seem to perk up throughout the day but often have to rest and lay down.

Gloria, you asked how long I've had this, well it's been 6 months now. I have an appointment with the ENT at the end of Nov. I can't get in any sooner.

Another symptom I have is weight loss. I've lost 10 lb. and I'm slim to begin with. I have my appetite back, but still can't seem to put the weight back on. Any ideas?

Hang in there everyone!

Susanne


Hi Susanne

Sounds like you have been suffering the same length of time as me. Have you been diagnosed with anything? For me, the hardest part is not knowing what is wrong so I dont know what to expect or what i can do to help. I'm the same with the weight loss as well. I have lost 21 lbs and dont seem to be putting any on even though i'm eating. I dont really mind losing weight but it just goes to show the toll it takes on you physically and mentally.

Anyway just praying i sleep through tonight and dont wake up spinning again. So scary!!

Take care all


I try to explain to people what I am going through and everybody looks at me like you look OK to me, this is very frustrating. But with me everytime one symptom disappears another pops up it really tests my patience. My latest thing is I get a burning sensation in my feet and ankles which is very annoying, I just keep reminding myself that it too will pass just like everything else did.

Hi everyone,

How true DC - some friends came over to see me the other week & said they had never seen me look so good!!!!!!!!!!!!! If only they knew! My symptoms keep changing - my dizziness seems to have got worse, but the burning sensation you describe in your feet I think others have reported on this site & seems yet another little horror.

Susanne - like you I just about manage to get through a day & have just put some washing on, tidied around the house & that is it. Thank goodness my hubby is great because by the evening I can't even think about food let alone cook it. The NHS are not daft. My original appointment was to be this month October - made the appointment back in July!! My GP said hopefully by then you will have got over it! That is what they hope for to save money. I decided to see a private consultant as couldn't wait. When I checked back to see what time my NHS appointment was - they said my GP had cancelled it as I had gone to see a private consultant. I thought that was a bit of a cheek - they hadn't bothered to ask me if I was continuing to see a private person which we have had to curtail because of the cost - so am not surprised that you have to wait until November!

Not feeling at all good today - hope you are all having better times.

Gloria x


Gloria

Your posts always bring a smile to my face because the way you describe it is exactly the same as I have experienced. You're right about the NHS - what a joke!! They just fob you off so that you're forced to pay privately for the same doctors. I went to one ENT NHS apt which they kept delaying back in July. I didnt get to see the real consultant, just his underling who was so useless it was an insult. He just said its probably BPPV and sent me away with a leaflet. When I asked why I felt so tired he said it was because I was worrying too much. When I asked why my eye felt strange he said that was nothing to do with it! The proper consultant was consulting at the private hospital down the road charging 160 per time! it's a disgrace of a system and should be changed.

My brain feels confused today and still trying to pop my left ear. Doesn't it just drive you crazy! I havent had all the aches and pains that some of you have suffered but you never know whats round the corner with this thing!

Jemma x

Jemma,

I had the same thing from the first ENT I went to, he showed me how to do the Epley manouevre and sent me home after 10 mins consultation without so much as even a hearing test, and charged 200 for it, followed by another 100 for a follow up visit where he told me to go see a neurologist. I don't mind paying the money, if the diagnosis was correct but it wasn't so I was a bit annoyed, and this guy is the leading private ENT in the country :(

Sounds like everyone is having a rough patch at the minute, Susanne what you were saying about having to lay down during the day - I've had times where I've been out of bed for 2 hours in the morning and have had to go back, the dizziness was so intense. It happened a couple of times when I was at work, I had to go to my boss and tell him I needed to go home, thankfully he was cool about it. It's quite scary sometimes, I get a wave of faintness come across, it only lasts a second or so and then you snap back out of it, does anyone else get that? Thankfully that seems to becoming less and less frequent, I've had a very good week with fewer symptoms so am happy for that, but you can never be sure with this thing. 9 months now and hopefully things are improving.

Jemma, confusion, memory loss, cognitive difficulties are all part and parcel of this thing. I have to write everything down now, my short term memory is shot to bits. It's really frustrating at times.

Anyway, hope eveyone has a good weekend,

Gary.


Hi all,

Jemma, my doctor said I had labyrinthitis. At first he said it would take 6-8 weeks. I still had the virus at that point so he said it could take 3-4 months and then he said 6 months to a year. I guess every case is different. One way he diagnosed me was to hold his pen up and down about 8 inches away from my face and my eyes were supposed to follow it out to the side. When they couldn't go any further to the side my eyes would beat and move back and forth trying to focus. Wow you sure have lost a lot of weight! I feel better just knowing that this is happening to others as well.

Gloria, you are so right about people saying "you don't look sick". Well I make my self look good so that I feel better about myself. Though there have been many days where I just lay around the house with my sweats on and hair in a ponytail with no makeup. I also am so thankful that my husband just keeps on encouraging me and picks up the slack by getting the groceries. I feel like I've really accomplished something if I can get out and shop by myself.

Hope you all have a relaxing weekend.

Lorna


Gary, I used to get that wave of faintness your are talking about, its very hard to explain but its a weird sensation, I even used to get it while I was sleeping or nodding off, its like a split second spin.. That is now long gone Im just a little imbalanced and unsteady now, Gary this will all eventually pass..

DC


Hi everyone

Gary - I still get the waves of faintness coming over me even after all this time. Sometimes I feel like I could just drop down dead - it gets so bad. So glad that you are feeling better, long may it continue! At the moment my balance is going a little but it is only lasting a little while. I often get feelings where I think the world has moved and they are the scariest for me. I have had quite a few of those lately. Fell a bit grotty overall today. My sister has the swine flu but she lives about 250 miles away from me!

Hope I'm ok for Monday! The Green Day concert is looming!

Gloria - did you know the theme of the new album is all about Gloria and Christian - hey - you are famous!!!

Take care

Sandie x


Hi

Has anyone tried bromelain supplements, they are about £3.50 from Holland and Barratt - basically a pineapple enzyme which can be used for sinus and ear inflammation. I have been using them for a week or so and it seems to be unblocking my ears. I still feel dizzy but I can am starting to get my ears to pop and I feel things moving in there. I sometimes think I can feel fluid going down the back of my throat.

Gloria - I have used that nose balloon too, it seems to be helpful but you never know with this really.

Hi lorna - nice to hear from you. How long have you been suffering now? Have you kept on working through this?

Hope everyone enjoys their weekend as much as is possible with this thing. xx

Hi All,

Well, ENOUGH is ENOUGH!! This thing is going to get such a kick up the backside. I've had a really nasty few days of constant dizziness. In the early hours of the morning the other night, I was asleep but turned over & fell out!! Must have had a dizzy moment that i was not aware of. My hubby, bless, has suggested we may have to get cot-sides (like my Gran had when she was ill in hospital) to stop it happening again. The degradation!!!!!!!!!!

Jemma - interesting comments about the bromelain. You should see my kitchen shelf - I think I've taken on a franchise for Holland & Barrett at home!! Where did you find out about it? Still blowing the nose balloon. It unblocks & then blocks up again - so I don't know. I've got 4 more weeks before I see my consultant again when he declared last time that I should feel so much better!!!! He too will get a kick up the jacksy if that isn't ( & I suspect not) the case!

Sandie - do hope you feel brighter for your concert tomorrow. I'm chuffed to think that my name will be in lights!!!!! Unusual choice of name - it is considered quite old-fashioned now.I read a bit on Google about their new album - Gloria sounds a feisty sort of girl. That's what I like. Anyway, tell us all - have a great time.

Lorna- I admire you for making yourself look your best. Have to say - with me that has gone right out the window. I did manage to go and have my hair done a few weeks back, but the mad scarecrow look has returned and don't think I can manage the hairdressers again at present. Good job the colder days are here - if I go out I'll just have to bung a woolly hat on!!!

Gary - so glad to hear you have had a good week - I long for one of those. Have been experiencing major dizziness & that fainting feeling you described - horrible, horrible.

Hope we all have brighter days soon.

Take care, Hugs Gloria x

Gary - I've had that really fainting feelingyou describe this week-end. It seems my head is lightheaded & dizzy all the time


Jemma - keep us posted as to effects of this stuff you are using. Haven't heard of it but seems very interesting. I too suffer from that blocked feeling though my GP always says he can see nothing in my ears and they look fine!

Gloria - yes, your name is old fashioned but there won't be many around so that's a bonus! I don't think I have ever known a Gloria! It's nice to have a song with your name in it - mine was 'Sandie' by John Travolta in Grease. Everybody sings that to me still.

Take care

Sandie xx


HI

Have just been looking up this Bromelain supplement that Jemma is using and have found this article http://altmedicine.about.com/cs/herbsvitaminsa1/a/Bromelain.htm.

Please read it before any of you decide to use it as though it does look like it is good for sinuses and many other things there are quite a few side effects with it. I won't be able to take it because I have asthma and it can cause breathing problems and it's not recommended to take it with Ginko Bilbao which I know many of you take.

Sandie xx


Sanidie - so far haven't really noticed any side effects from the bromelain. I am pretty sensitive to things so usually I notice any little change. I had to stop ginkgo because it gave me awful headaches. I will keep trying and see - im so desperate i'll try anything right now!

Gloria - your posts always make me laugh. You seem to manage to keep a sense of humour about this which is so good. I haven't laughed much since I got this to tell the truth. I did have an almost hysterical outburst of laughter this lunchtime. I guess it's just all the pent up tension. I'm more likely to be found crying - never cried so much in my life.

It's my birthday on tuesday - i have to say im not exactly excited about it. I would normally be planning something nice but now i really dont have the motivation to think about it. I just want to curl up and hide. At least i have two days off work but I guess i'll just be sat at home trying to pop my ears!

Speak soon everyone x


Hi,

I was just wondering if you could give me some advice regarding exercise. Yesterday I went for a slow half hour walk. My legs felt weak, but I kept pressing on and rested every once in a while. I even pushed through a bit of nausea. It felt good to accomplish this little bit. By evening my muscles felt like I'd had a major workout and had a lousy sleep waking up a lot. This morning I feel weak and shakey and know that it will last all day. I now regret taking that walk. My body takes so long to recover. Question is, should I continue to take very short walks or wait until I'm better (whenever that will be). I try and do a few stretches each day. It seems like it's two steps forward one step back.

Jemma, I definitely have crying spells. About once a week I'll have a good cry just out of frustration and to let it all out. My family has never seen so many crying outbursts from me. My son actually brought me flowers one time since he felt so bad for me :).

Susanne

Hi Susanne, Don't give up the exercise - even if you feel it saps every ounce out of you. In one of my earlier posts, I mentioned that the consultant guy I'm seeing said if you break a leg or strain your ankle you rest but not with this - you must try to keep active even when you feel grotty. Obviously don't over do it & have rests , but the best thing for getting rid of this thing is activity & walking is good challenge for your balance to recompensate. The more uneven or different walking surfaces, the better for the balance mechanism. Sandie,also is quite an advocate of a good walk and i find I actually feel better when I'm outside walking. I always found that if i did a little too much, then i would have a bad night and suffer the next day as you have mentioned, but that gets better - a sign that you are getting stronger. The thing I've learnt about this thing is unlike any other illness, you think you're feeling a bit better then next thing you seem back to square one! That has happened so many times, but what i notice now is my recovery time after a 'bad turn' gets shorter.

As for crying, well, with us all I think we must have cried an ocean. I had such a weepy week last week too - just feel so useless & sooooo frustrated at not being able to rush around during the day & do all the things I used to. One day!

So keep up the exercise Susanne.

Let us all have a better week.

Hugs Gloria x


i had lab in april 2006 and since then have bouts of foggy head moody and ears block just as this happens.ihad an mri then and all was clear but i am still petrified i have a tumour...has anyone had similar feelings this long, although it does clear for a long sapell then come back..i am very very very stressed at the moment would this contribute...? my thinking and concentratiob goes and i feel moody and not myself...i am worried steaming hels me alot..n my dr says its blocked congested ears but i hate the muzzy head.. Sarah

Hi Jemma,

Hope you are feeling a little better today (this is for Tuesday) because it is your BIRTHDAY!

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Jemma, happy birthday to you!

Really, really pray that you feel a bit more with it and are able to enjoy your day. Thinking of you. Love Gloria xx


Hi guys I posted a few weeks ago about the yeast infection idea and how it affected me. Well I am happy to say that for the last 2 weeks I have not been the slightest bit dizzy, sick, ear pressure or tinnitus, tired, sore, foggy brained or any other problems that we have all complained about for so long. Like all of you I was at the end of my rope with all the Dr. visits and no answers but wait it out. I have made some slight changes to my diet, went through about a week/ 2 week period that was very tough (the DIE OFF) period and have been feeling great ever since. Please if you have time take a look at this yeast problem on line,it worked for me. If there are any questions please ask me I would be happy to help in any way. Not that I am an expert but I have spent hours researching this online as well as going to holistic/organic stores for answers. I hope this helps. Michael


Hi all:

HAPPY BIRTHDAY JEMMA! All of us on this site would like to wish you a very nice birthday (all things considered). Probably by your next birthday, all this will be history. Hope at least you are having a better day!

Gloria you sound fed up too, boy this thing sure is frustrating. I feel fine today (today is the first day that I am off diuretics, so we will see what happens). If the labs comes back, I'm going right back on them. Maybe it won't make any difference.

Michael it's great that you are feeling better. Good that you did your homework and found an answer to your problems. At this point we are all grasping at straws. Me with my diuretics, you with your holistic stuff for yeast infections. A friend of mine had chronic fatigue syndrome for years, until she realized she had an allergy to gluten. So things aren't always what they seem.

hope everone else is coping. What a life!

Maria xxx


Thank you so much for your post Gloria wishing me happy birthday, it means such a lot! I dont know what i'd do without this forum.

Unfortunately it hasn't been a good day dizzy wise. Very off balance and weird feeling - i could swear sometimes i think im getting worse. Managed to go out for lunch with my boyfriend but it wasn't too enjoyable as i felt so tired. I am really hoping that this new age will see some positive changes, can't bear to think that i will be feeling the same next birthday! I really am hopeless with this and keep crying, i just cant help it, im so scared of feeling this way all the time.

Its back to work tomorrow and im dreading it, although perhaps trying to do things is best for me i dont know.

Sandie - how did your concert go?

Gloria - you mentioned trying some Ear Heal Ok drops a bit ago - do they help at all?

Take care everyone x


Thank you so much Maria! I do hope you're right about my next birthday, and I am really glad you are feeling better and seeing improvements finally! xx

Happy birthday, Jemma!


Hi everyone,

It's been awhile...I am happy to report I am feeling alot better going to restaurants, malls , movie theatres there was a time when I could not even fathem the idea being confined to my bed was the beginning process with horrible thoughts of what is wrong with me ? Looking for answers I found this site and it was what got me through the worst so just wanted to thank everyone for there support and shared stories. It's been 6 months and I really noticed a turning point now. Walking constantly has really helped,regular excercise and vitamins. To any new women if you have this during your cycle I use to get really really weak could not get out of bed for days at a time I started taking Vitiman B50 complex,vitamin C, and a regular multi vitamin it really helped !! I know how tough and discouraging this virus can be feels like your life just slips away and trying to explain it to people can be frustrating because so many people have never heard of this but stay strong and continue your path to good health. Wishing everyone the best if anyone had any questions feel free to ask I know I had so many at the start.

Natasha t


Thank you Richard and thanks so much for running this website! it's been a godsend!

Natasha - so glad to hear you're feeling better. Were you diagnosed with labs? I am at the 6 month point but not had a diagnosis and whilst my symptoms have been constantly changing and altering I am still really off balance and dizzy which scares me to death. Your improvement gives us all hope xx


Happy Birthday Jemma,

I'm so glad you were able to get out for lunch with your boyfriend. Don't you think our husbands/boyfriends are amazing encouraging us through this whole ordeal? I also hope the next year will see me doing more outside activities like kayaking and long walks. Speaking of walks, I did my stretches yesterday and walked around the block even though my body didn't feel like it. Well, that evening I didn't feel well (sore achey muscles) and had a terrible sleep, with a little more lightheadedness so I'm taking it easier today. I'll try again soon.

Susanne


Hello everyone. Happy birthday Jemma. Just wanted to post an update. Its been 7/9 weeks. Well, the first part of last week was horrible, i couldnt even get out of bed. these past three or four days have been alot better, im still off balance but am still able to do whatever i need to do inside and outside the house. I dont want to get to excited because i know how this illness is with its ups and downs, but im still praying to god that i keep inproving so i can get this overwith within the 12-14 weeks. i know two people recovered in three or four month and i know two other people that took almost a year so it could go either way.

Hi Everyone,

Jemma - glad you were able to get out for lunch even though you didn't feel too good.

I don't know but this week for me has been really bad again. I feel I've gone right back to the start. My head is spinny all the time & the sickness and nausea are the worst. Really pushing myself to get up & do some things. It is so weird how many twists & turns this thing does. No week is the same for me.

Friends & family are starting to talk about Christmas & this upsets me so much because I can't plan or agree to anything when every hour of the day is so different in how you feel. Having another weepy week.

Disappearing under the duvet again!

Hugs Gloria x


Hi everyone!

Well, I went to see Green Day and it was brilliant! What a show! They performed for nearly three hours!

Have been feeling really dizzy (vertigo) for a week or so and was feeling quite yukky on Sunday. Felt like I was going down with something on Sunday night when I went to bed and I was so dizzy, even lying in bed which is not normal for me as being in bed is always where I feel best. Anyway, got up Sunday morning and took a Stugeron and then travelled up to Glasgow (passenger, not driving) and by the time we got there was feeling quite ill. Had to go to HMV in Glasgow to see one of my daughter's favourite groups of the moment (Elliot Minor - who? I hear you all say!)They were signing their new CD. Then did a bit of shopping and my balance started to go. By 5pm I was really spinning and sitting in the hotel I couldn't eat my meal as I was so ill. I had taken a Stugeron at lunch time and took another while sitting having my meal. Went up to out room and lay on the bed for an hour wondering how the hell I was going to make it. My older daughter is at Uni in Edinburgh (about an hour away) and she was on stand by in case I couldn't make it because there was no way my husband who was with us (to do the driving) would have taken her! Anyway I wouldn't give in and I took another pill at about 6.30pm. Walking along to the arena which was adjoined to the hotel, I was so unsteady but then all of a sudden I started to feel so much better. I had my ear plugs in and what a night it was!

Next day I got up and was spinning again and wasn't too good on the journey home and last night my balance was terrible. But today I have been and got the weekly shop in at Asda and no dizziness whatsoever! I have had a good day today. I just don't understand how this thing works. It is mental!

Anyway, Jemma, Happy Belated Birthday to you! Sorry your day wasn't brilliant and I can totally sympathise with you there. Quite a few times I have had to walk out of restaurants etc because I feel so bad and cannot bear to stay. My birthday is 4 days before christmas and last year we booked in for a chinese. I felt fine before we went but as soon as I walked in I felt so dizzy. The place was quite empty so it wasn't as if it was noise or anything that had set me off. Well my hubby had just ordered drinks and I just had to get out of there fast! Cheapest night out ever! The chinese guy offered me a paracetamol - bless! If only it was that easy to get rid of. It helps that my family are very understanding but I have also missed three all expenses paid holidays due to this condition and that is very annoying. My Dad takes me and the kids to Scarborough nearly every year and pays for the hotel etc. I leave my hubby at home beacuse he doesn't like seaside holidays - used to be brill!

Jemma, you know, I know it is bad this condition we have, but you really are doing brilliantly. You are still working and that is amazing - I, for one, was not able to work at my worst times.

Natasha - great to hear that you are so much better. I hope it never returns for you!

Gloria - how's the duvet - lol!

If you read my first paragraph you will realise how totally mental this thing is. That is the frustrating thing - you just cannot plan anything. You feel good then it smacks you right back in the face. I think my hormones have a big part to play in my recent dizzies. I missed last month and would have been due on again on Sunday gone which is when I started to feel real bad. So if I totally miss this one then that means it will be the longest I have gone - aagh - Menopause????

Oh and Gloria I am now moving onto 'THE FRONT DOOR - PHASE 2' Have just ordered some eco friendly paint stripper from the internet (because of my asthma) and will try different paint and see what happens - watch this space. Good job I am patient!

Take care

Sandie xx


Hi all

Glad you got through the concert Sandie - i dont think i could face something like that. You're right this thing is mental, i just dont get it! Had such a hectic day at work after 2 days off, it was awful. i'm so tird now i just need to sleep.

Susanne you are right about the support from partners etc. i think i would have ended it all by now if it wasnt for them telling me i will get better and to keep going. Although sometimes i get the feeling people think i am just depressed and that is why im not getting better which is nonsense because i know if the physical problem got better i would be so happy!

Gloria - i feel just the same, thinking about christmas makes me wanna cry. Can't commit to anything because chances are all i'll feel like doing is lying on the sofa. Soooo frustrating - you're not alone!

Liana - glad you are improving, hopefully it will carry on and you wont get all the setbacks.

Bye for now x


today wasnt such a bad day. Im still off balance but sill try to do as much as possible. Today I went for a 45 min walk and it wasnt to bad. i hope i keep improving. Only time will tell.


Hi Jemma,

Where is it that you work? I don't work now because of my condition as I was just having way too much time off sick and it wasn't fair on the small family run business that I worked for. They obviously couldn't do anything about it because of employee's rights and all that stuff but I felt it was time to leave. Are your employers ok with you. Mine were great - very understanding and didn't give me any pressure even after long periods of time off.

You are also right about the feelings of depression and anxiety. They are caused by the condition and cannot be controlled. Nearly everyone goes through periods of anxiety (I did for a couple of months) and it is because the nerves that control your anxiety levels are very close to the inner ear. I was sent to a counsellor by my GP when I first got this and I told her that there was no way that this could be helped by therapy as I knew that when my condition got better then the anxiety would leave. However she insisted that I give it a go. So I had an hour session booked in with the counsellor and she dismissed me after 15 minutes as she could see that I was not actually suffering from an anxiety disorder and that it was caused by the ear condition. God, lets face it who wouldn't be depressed/ anxious because of this condition - it control's your life. You do still actually want to get out there and join in with life - you just can't.

Lianna - good on you! Walking is the best for this condition - don't forget to keep your head moving normally and don't look at the ground! I bet you are so proud of youself - small steps forward!

Gloria where are you today - get out from under that duvet! Seriously I hope you are ok.

Sandie xx


Hi Sandie

I am a solicitor so work in an office - it can be really busy, luckily i dont have to go to court, imagine that! I have to type and sit at computer all day, answer phones, talk to people etc. It's tough!! I do 9am to 3pm now rather than 5.30pm. Work have been pretty good but I just dont think anyone can understand what this feels like unless they have experienced it.

You are so right about counselling and anxiety etc. It would be useless for me because as you say it is brought about by the physical condition and not my psychological state! I really can tell the difference between normal worry and the kind of anxiety i have felt with this.

Gloria, Susanne and Liana - have you had any anxiety with this - more than just general worry? When this started I had horrendous anxiety - shaking, heart pounding, feeling like i was going to die - nothing can compare to the horror of that!! luckily that seems to have got a lot better after about the first 6 weeks.

Gloria - i know you said you hadn't had any vestibular testing, ie the caloric test but maybe you should ask the NHS ENT if you can do it as it would give you an idea as to whether you have any vestibular loss or not?

Take care xx


Sandie- about the anxiety..... i have never had anxiety problems in my life. But two weeks before the dizziness even started, i was getting real bad anxiety attacks. I wasndt sure what was going on since the dizziness or any other symptoms werent present yet. Then two weeks later was when the dizziness and off balance started, and the anxiety was worse. Then after two or three more weeks with symptoms the anxiety started calming down. Did any of you experience anxiety even before the labs symptoms started? I think its so wierd how my body started reacting


Im sorry my last post was ment for jemma not sandie. Jemma, like i said at first I had real bad anxiety even before all the other symptoms started which was what scared the hell out of me. But now, I do worry about how long this is going to take but I dont panic like before. We'll see later on, maybe if I see that its taking way too long without improvement then maybe thats when the anxiety kicks in. I guess i try not to worry too much because I know at least four people that have had this and they are fine now, so I try to keep that in mind and stay positive. Jemma- do you see improvement in thouse six months? What were your symptoms before and how are they now?


Jemma, yes I had/have anxiety with this crazy thing. Just to clarify one thing, I have dealt with depression before this happened so having mild anxiety is not uncommon for me. When I got this "virus" I had a bad attack. Then for about 6 weeks I dealt with mild anxiety every day. Now when I get it I notice it usually is right before I get a wave of sickness/nausea/ligthneadedness. Amazing how this disease controls our life. Just when you think you've got a handle on it it overtakes you again. I've had a better week and have been able to get out more. Oh I should also mention that I can get anxious knowing that when I have to meet my friends or attend an activity I don't know how I'll feel. I hate having to pretend that everything is okay when you just want to lay down and be at home. I know we don't look sick, but we really are.


Susanne, I was exactly the same as you, I had very bad anxiety before the dizziness and off balance kicked in, just goes to show that the vestibular system is directly linked to anxiety levels.

Hi Everyone, Not posted for a couple of days as have had a rough time. I would just like to get one symptom free day! This week my head and behind my eyes have felt like they have been in a vice and somebody is twisting the muscles tighter & tighter. Haven't been able to do much on the computer, watch TV or read - YUK!

Yes, I too have had panicky attacks when my heart beats so fast & i get this bad insecurity feelling all over - difficult to describe which is why I take the herb Valerian which does help as I do not want to go down the anti-depressant route. Like you Susanne, I get really bad nausea & sickness. Jemma - you are very strong to be able to cope with work. My employer rang me yesterday to see if I am ready to come back yet. I've said I think I will have to fully resign as I cannot see myself any where near thinking of coping with work at the moment - such a shame as they are really lovely people.

DC - have been looking into the Reishi thing a bit more & have ordered Red Reishi mushroom supplement which is supposed to be the best ( more stuff to add to my home pharmacy!!!). What do you take?

Sandie - am so pleased you finally enjoyed the concert - spaced out on Stugeron!!!! Think I might have to do the same next week-end. It is a family birthday celebration & not sure how I'm going to cope, but as you said before you have to take these things sometimes just to give you a quality of life!

Anyway, have re-surfaced from the duvet as it is lovely & sunny so will go off for my walk in the park. The locals do think I am mad as they see this women doing her eyes closed, head-turning vestibular exercises!! Is it door painting weather in your neck of the woods this week-end Sandie?!!!

Take care all - good to read your posts. Love & hugs Gloria x

Hi everyone, Just wrote a long post and lost it somehow! Will try to remember what I wrote.. It's funny how the anxiety issue has surfaced today. I think that after a year since my dizziness started this is still the thing that causes me problems. Just this morning I was getting ready for work and a feeling that something was wrong with my body especially my head just came out of nowhere. I was able to get my girls to school and get to work but I didn't feel good for a few hours and it went away eventually. I guess that as I do seem to be able to keep it under control and it always passes that it must be anxiety but I find it very upsetting and am always scared that its something apart from my inner ear... I guess it might have been worse than usual this morning as my husband is away so I was starting to worry who I could call if I needed someone.

Gloria - sorry to take so long to reply to your questions. I live in Melbourne. I am fine most of the time and just seem to have bad days (or parts of days) here and there. I haven't seen an ENT or neurologist for about 4 months. I didn't find either of them very helpful. I laugh when I read your posts about all the supplements that you have been buying - I was doing the same! Have now narrowed it down to vitamins and fish oil - can't even remember why now! It sounds like you are having a terrible time with this monster - really hope you are feeling better soon.

Sending sympathy and good wishes to everyone who is having a tough time!

Take care Cathy

Hi everyone, Just wrote a long post and lost it somehow! Will try to remember what I wrote.. It's funny how the anxiety issue has surfaced today. I think that after a year since my dizziness started this is still the thing that causes me problems. Just this morning I was getting ready for work and a feeling that something was wrong with my body especially my head just came out of nowhere. I was able to get my girls to school and get to work but I didn't feel good for a few hours and it went away eventually. I guess that as I do seem to be able to keep it under control and it always passes that it must be anxiety but I find it very upsetting and am always scared that its something apart from my inner ear... I guess it might have been worse than usual this morning as my husband is away so I was starting to worry who I could call if I needed someone.

Gloria - sorry to take so long to reply to your questions. I live in Melbourne. I am fine most of the time and just seem to have bad days (or parts of days) here and there. I haven't seen an ENT or neurologist for about 4 months. I didn't find either of them very helpful. I laugh when I read your posts about all the supplements that you have been buying - I was doing the same! Have now narrowed it down to vitamins and fish oil - can't even remember why now! It sounds like you are having a terrible time with this monster - really hope you are feeling better soon.

Sending sympathy and good wishes to everyone who is having a tough time!

Take care Cathy

Hi everyone, Just wrote a long post and lost it somehow! Will try to remember what I wrote.. It's funny how the anxiety issue has surfaced today. I think that after a year since my dizziness started this is still the thing that causes me problems. Just this morning I was getting ready for work and a feeling that something was wrong with my body especially my head just came out of nowhere. I was able to get my girls to school and get to work but I didn't feel good for a few hours and it went away eventually. I guess that as I do seem to be able to keep it under control and it always passes that it must be anxiety but I find it very upsetting and am always scared that its something apart from my inner ear... I guess it might have been worse than usual this morning as my husband is away so I was starting to worry who I could call if I needed someone.

Gloria - sorry to take so long to reply to your questions. I live in Melbourne. I am fine most of the time and just seem to have bad days (or parts of days) here and there. I haven't seen an ENT or neurologist for about 4 months. I didn't find either of them very helpful. I laugh when I read your posts about all the supplements that you have been buying - I was doing the same! Have now narrowed it down to vitamins and fish oil - can't even remember why now! It sounds like you are having a terrible time with this monster - really hope you are feeling better soon.

Sending sympathy and good wishes to everyone who is having a tough time!

Take care Cathy

Sorry for the repetition - thought I was having trouble posting but obviously not!


Hi

Jemma, you do have quite a tough job and all that concentration isn't doing you any good so you are doing really well to be able to cope with that. Even speaking to someone you know is difficult when you feel so bad. I totally admire you for being brave enough to work through and strangely enough it is probably doing you good!

Gloria - sorry that you are feeling so bad again. It stinks doesn't it? I know exactly how you feel because my first few months with it were terrible. I couldn't watch TV, speak on the phone or even read a magazine. I didn't want visitors and it is such a lonely time when you think you are actually going to die because there is something seriously wrong. But take heart you absolutely will start to get better. I know I am stil sitting here nearly five years later and it does still control my life but it has never been as bad as that first time. And, woman you must be rattling now with all those pills you take!!!! But please be careful as many of these herbal remedies are not really beneficial and maybe should not be mixed. I might add that I still have problems now and again with reading and sometimes have to hold the newspaper in front of me so I am not bending my head forward.

Gloria what type of environment do you work in? I worked in a garden centre and was lucky in that when I was feeling ill I could take a wander and do something outside in the fresh air. But at busy times it was hell when I would be on a till standing there serving customers all day. I was so off balance I was lucky I didn't end up in one of their trolleys!

Spaced out on Stugeron - love that thought - lol!

Please everyone - do not go down the anti depressant route. I was offered them by my GP early on and refused to take them. All these problems associated with Labs i.e. anxiety/depression WILL go away on their own. Getting off anti depressants further down the line is another matter.

Cathy - nice to hear from you and glad you are much better. It is so awful when you are feeling good and then it slaps you in the face again isn't it. I often have those feelings like you have about this being something other than the inner ear and when I feel really bad those feelings kick in big time but then I start to feel better and forget about it. I mean the symptoms would be constant if it was something more sinister and I probably wouldn't be here now after all this time but it is still worrying.

Gloria - have just got some paint stripper from the internet - I can't use the ones you get in the shops because of the fumes and my asthma but this one seems great so the door is going back to whatever is under there!! Then will start again! Sandtex suggested this flexigloss paint and undercoat but it about 30 quid a tin - no chance! So I will try their exterior paint and see how that goes. The first one I used was Wickes own make - rubbish! The saying is true 'you pay cheap - you pay dear'.

Take care everyone

Sandie xx


Hi everyone:

sounds like many of you are having a tough time.

About the anxiety, I had terrible anxiety in the beginning, panic attacks, heart pounding etc. Then when the thing resurfaced last year for a month, I had anxiety again. When my symptoms die down (which they have for months) I don't have anxiety attacks, but like many of you I still get anxious when I have to meet a friend for lunch or go to a public place. The supermarket isn't really a problem because I can choose the day I want to to. But honestly this illness completely rules my life. I haven't been to a movie in two years. Doing a lot better, all things considered, but there is still that lingering anxiety about having recurrences. Let's face it,two years is a long time. And if we do start to get over the anxiety, then we get sick agin, and the whole starts all over again.

I am fighting a cold and cough so not feeling great, but no dizzy symptoms just the normal cold symptoms. A cold would drive my symptoms wild in the past, but so far with this nothing. Something to be grateful for.

Jemma, I admire you for being able to go to work, and in a busy office. Do you find it is helping you to work? I wasn't working at the time I came down with this, but was offered a contract when I was at my worst, which I had to turn down. I am over 60 and I think us old farts should make place for the younger generation. Jemma, if things don't improve, can you at least ask for a sick leave? Gloria sorry you might have to give up your job. Especially if you enjoy it. I guess the perfect job would be a home-based one. But not many peole have that option. This is dragging for you too.

Sandie, what is that Sturgeron you ar taking? is it over the counter or a prescription? It's not Serc is it? I bought sea bands the other day, they are supposed to help against Nausea, and there are no side effects. I haven't had Nausea for quite a while, but will try theem next time. I'd love to be able to take a pill when I go out. Maybe I will try Serc if I feel unwell and maybe that will help. anyone else tried Sturgeron? Sandie, out of curiosity, did the doc prescribe this? Have you been taking it for the 5 years that you have had this? I know you take it only occasionally, but what a help that would be, would take some of the anxiety away about being dizzy.

Take care everyone, you are not alone, Hugs, Maria


Hi everyone

Liana - yes i have seen changes in 6 months but more in my overall health, the anxiety and tiredness have improved a lot and overall i feel a bit better but the dizziness is still really bad for me. I think the fact that my left ear wont pop and fluid is trapped in my ears because they crackle and im sure this is at least part of the reason for my dizziness, it drives me mad! i keep popping my ears and crackling them all the time trying to open the passageways but it doesn't seem to work.

Sounds like everyone has had their experience with anxiety, it is definitely part and parcel of ear disorders.

Gloria - sorry to hear you may have to resign. Believe me i have thought about that but i really do need the money and would feel so guilty asking by boyfriend to pay all my bills and debts etc and my experience of doctors is that they are reluctant to sign you off even for a week let alone for months at a time. What do you do about that Gloria - has your doctor given you sick notes?

For me, it's made even harder by the fact i haven't even been diagnosed with anything yet so the doctors couldn't really sign me off with anything!

i keep thinking surely this can't go on forever - i can hardly remember having a normal head. it would be heaven to feel normal again!

Keep going everyone and thanks to those of you who have almost recovered for giving us hope xx


Gloria, I take a product called Sunchih, its made by concord health.

Hi all,

Thanks DC will look into that. Have you found it has kept colds & other bugs at bay? As we are going into November, and even for the UK are having a mild time weatherwise at the moment - everyone seems to be going down with something at present. Two neighbours of mine have just had shingles - albeit mild. So I'm keeping well away. I am being absolutely paranoid I know, but even if I am in a shop & somebody sneezes or coughs, I scuttle away - even if I have to leave what I wanted to buy!

The other thing, my brain has completely gone to mush. Yesterday, the knife & fork went into the dustbin not the dishwasher & the butter went into the oven not the fridge!!!!!

Jemma - for me my job was only part time, as I had taken redundancy from my full time career a couple of years ago as a civil servant. It is only a small business, so there was no sick pay involved. I was a receptionist in a osteopathic clinic & I loved it but hey fate rules I suppose. You are so right about not remembering what it is like to feel normal - the shock will be huge not to be dizzy headed all the time, feel nauseous etc etc etc.!!

Sandie - sounds like the north are in for a pretty windy week-end - gusts up to 60.70 mph! Good front door drying weather I say. I'm taking a leaf out of your book & feel i have to start doing normal stuff. So I'm looking to paint our bedroom. I've spent so much time in there lately, I've noticed all the bits that need painting - so kill or cure I suppose.

Maria - did you have a good Thanksgiving? Did think of you.

Cathy - great to hear from you. Jemma is right, everyone that has had this & are having better times, do give people like us encouragement & hope. Thank you! You must be starting to go into your spring/summer? Make us jealous here & say what fantastic weather you are having!

Susanne/Lianne/ Gary (how are you doing?) & everyone have good week-ends.

Hope we can start swopping good news stories - wouldn't that be great. Just going to retrieve the milk from the washing machine & the breakfast cereal from the broom cupboard!!!!!!!!!!!!!

Hugs Gloria xx


Hi Maria

Stugeron is just something I discovered a few months ago when someone I know who suffered from this evil thing about 20 years ago was told to take it by her doctor. It is just a travel sickness pill and made up of cinnarizine but it is not available in the U.S. It is however available in Canada, is that where you are from?

While I wouldn't recommend that people take drugs regularly I think it is ok for occassional use when you just have to do something. If you do some research on it you will find that it is actually used on prescription for people with Menieres disease and the dosage (I think) is two 15mg tablets, three times a day. I usually only need one, apart from last Monday when I took four in one day. It is so hard dealing with this on a daily basis and sometimes you just need to do something good! In the UK it is available over the counter. I might add that my doctor didn't want to prescribe it to me (probably because of the cost), but they were willing to prescribe Stemetil which has more horrific side effects than stugeron!

Jemma - I know you have trouble with your sinuses and I have too. I have been using beconase as you know for a good while now and I also use a saline nasal spray which really gives you a good clear out. It is totally natural and you can use it a often as needed. I find it a great help. I get it from www.salveo.co.uk and it's 6.99 per spray.

Jemma, the doctors I'm sure will give you sick notes. This is a thing that is getting more and more common and I am sure they would be sympathetic. When I talk about my condition to people they always know someone who has it and I myself have two personal friends with the same problems. One has had it for about 7 years now and the other (who was my next door neighbour) has had it for about two years. If it makes you feel better, go to the doctor armed with some stuff printed from the internet because as I have said many times GPs are a bit ignorant about this condition but I am sure you will get a sick note.

Gloria - I did an awful lot of painting when I had my relapse last year and it certainly keeps you busy and it challenges you when you have to do the upper part of the walls so it's actually doing you some good! And,thanks for the weather warning - really needed to hear that!

Hey, hope the oven wasn't on when you put the butter in there - lol!

Take care

SANDIE XX


Hi Sandie:

Thanks for the info about Sturgeron. I will ask the pharmacy if they have it. I thought they gave Serc for people who have Menieres. I live in Toronto, so let's hope they carry it. Went off the diuretic this week.

My symptoms came back, not severely so far, due to a cold and bad cough. Tomorrow I have to sing a duet in Church, so I hope I don't keel over. If I don't keel over, I'll probably cough my way through which should really impress all those good Presbyterians.

Gloria I had such a laugh when I read your e-mail about throwing the cutlery into the garbage. Maybe we should take up an online collection to replace all your knives and forks!

Have sort of been homebound since coming down with this again. We are having a lot of rain, so that is not helping. Has anyone read "The Other Boleyn Girl", all about the very colourful love life of Henry VIII. Boy those were bad times, he had everyone's head chopped off who disagreed with him. Makes you wonder about the Brits!!!

Hope everyone is seeing better days. These ups and downs are driving me insane!

Take care everyone

Maria xxx


Hello all fairly new to the site i did post something on 19th october as i was feeling scared and off balance.Still feeling the same and the more i think about it the worse i am.Still having major stress at home with but our 2 children keep me going.I work full time at a hospital so when i see people with illness similar symptoms to me i panic that i have a tumour or ms or something that is not labrinthitus.I had an mri april 2006 and nothing found thats when i was diagnosed after many trips to the gp of panic due to lightheaded.I have had this for now on and off.My ears are feeling very blocked and crack when i swallow and my haed is fuzzy.Does anyone ever feel as though they are going mad with this ie lack of consentration and off balance and forgetfull.I think as i am soooooooo stressed out this does not help.It is so helpfull to read about you all on this site and see i am not alone and i would love to get to chat with you all regular..i am 39 by the way the big 40 next year april fools day aaaagh!!!.ha anyone had this for as long as i have and had clear weeks/months and then come back again? i feel like i am shaking too when my head starts but i am not.i hope one day it will go for good.Thnak you all again for reading my story.

Hi everyone,

Welcome Sarah - like us all it is good to know you are not alone with this thing & thank goodness for a website like this where we can swoop our tales of woe & at least comfort each other. I know I've found this site my saviour, because you do think you are cracking up at times. You say you had an MRI in 2006? Were you having the same problems as you describe back then? All what you are saying is very much the kind of symptoms that we all have had or are having - unfortunately. The fact that your MRI was all clear is a blessing that there is nothing sinister going on - I too had an all clear MRI. The thing with labyrinthitis is that it waxes & wanes, peaks & troughs all the way through until it decides to go which can take from a few weeks to some months & then you have periods of good & bad for some people can last over a few years - although as I hopefully understand is that subsequent attacks are never as bad as when you first get it! I have had this since June this year - so I'm just in the 'baby' stages!! Have you been back to your GP or have you seen a specialist ENT consultant? Panic /anxiety as you may have read from the other posts is all part & parcel of this thing - unfortunately, like my GP they have not had enough experience of people with this to understand all the odd weird symptoms that go with labyrinthitis.

Where are you based Sarah? In the UK? You are also very brave - like Jemma on this site who carries on working. Do not know how you do it.

Anyway, good to hear from you & try to stay positive.

Hugs Gloria x


Thanks Gloria, I live in wales but born in England.I went to GP 3 weeks ago and saw the nusre she said i had no ear infection but ears were congested this will also cause lightheadedness, so i do think it is still the virus.I am going back on Tuesday to see my own GPso see what she has to say.Thanks again and hope you get rid of this soon xx

Sarah xx


Sarah - sorry to hear you are suffering with this for so long although i suppose it is blessing to have had some months symptom free. Whilst i have had a handful of slightly better days I have not had a normal day since this began ie for over 6 months and i would just love to have a normal head again! Like Gloria said this thing makes you question your own sanity at times.

Sandie - the sick note thing is interesting. I do want to keep working unless i reallly really cannot do it anymore. It is really testing and many times i just dread getting up and facing another day again. I am pretty sure that without a formal diagnosis my doctors wouldn't sign me off or at least i would have to see my GP every single week for a sick note because they only seem to give them for a week at a time. I did take 4 weeks off work when this started and that is what they did, I had one sick note that said 'anxiety' another said 'viral illness' and another said 'dizziness'.

The crackling sounds in my ears keep changing. Gloria - are your ears still blocked? My right one seems to pop regularly but the left only occasionally and when I lie down neither will pop. I also get this twitching feeling in my left ear sometimes which feels like the eardrum vibrating in response to some noises, especially loud sounds and sometimes when I talk on the phone.

It's interesting that you know a few people with ear things Sandie. I don't know anyone with anything like this. Everyone I speak to at work or friends etc even doctors treat it like some huge mystery. Nobody has ever known anything like it and cannot understand it which makes it even harder, that is why this site is such a god send for me xx


Hi Maria - look at this link http://www.epgonline.org/viewdrug.cfm/letter/S/language/LG0001/drugId/DR001213/drugName/STUGERON you will find some info about stugeron and what it is used for. If you research it further you will find that many people who work at sea use it to stop the seasickness etc so next time you go fishing!!!!!

Hey you - we don't chop people's heads off - only if they annoy us - lol!

Hello Sarah - all the feelings you are having are normal - we all think the same thing is happening to us but try not to worry so much!. The fact that you have had an MRI should help because they would have picked it up if there was something more sinister going on. So you had your MRI back in 2006, how long before that did you have these symptoms? I have had this since Oct 2004 which is when my first minor symptoms started but then it hit really badly in Mar 2005. So, I am going on 5 years! But, it is not all bad and I do have good days along with the bad. It is not always severe though every six months or so I do have a severe relapse which takes me months to come out of. At the moment it will hit me for a few hours a day, sometimes bad, sometimes milder. Feel free to ask anything you want Sarah - they are a nice bunch on here!

Sarah every time I see my GP she/he says that my ears are clear - nothing showing yet I suffer from blocked ears usually on one side which is always there when I am feeling extra dizzy. I also have post nasal drip and allergies which I think is the reason why I have had this so long.

Jemma I also get a fluttering now and again in my ears like there is something flying about in there! That is weird! And, I couldn't pop my ears for years though they do actually do that now and again nowadays, on their own. However, if I cannot pop them myself in the morning I know that I am going to be in for a bad day. Sometimes only one pops. Jemma, you are right to try and keep working. I only worked part time and did leave my job a few months back but I had suffered for nearly 5 years before I decided I just could not do it anymore. And you are right about the doctors - I have only met one doctor in all this time (GP) who actually knew what it was and knew something about it and that was the guy who diagnosed me in the first two weeks that I had it. Jemma, apart from my two friends who have this I also have a cousin, an aunty and a cousin's wife who have had this. Beat that - lol!

Take care everyone

Sandie xx


I'm just catching up on reading the posts and am just totally amazed and in awe of you that are able to work through all this. I find that the my mornings are so difficult. I'll get up and feel very weak and shakey and barely want to face the day. I move around slowy so I won't get too nauseous. Just thinking about doing any activity or what to make for dinner is an effort. After breakfast I try and do a few yoga stretches, slowly to avoid nausea. By then I feel a little better. This weekend has been the best I've felt in ages! I can't believe this is what it feels like to start to feel normal. When people saw me at church this morning they were asking how I was doing and I said I was doing a little better. How am I going to explain them when my body takes a downturn again? People just don't understand how the healing process works with labs. My ears also do weird things. Lately they have alternated between aching and feeling incredibly itchy. Other things I've experienced are hearing my pulse in my ears, fluttering and cracking and a full feeling. Even the outside of my ears can hurt and feel warm. It's another month before I can get in to see the ENT so I"m curious to see what he has to say.


Just a point about going back to work, everyone here has been so nice about the fact I am working through this which is such a refreshing change from the feeling i get off some people that i should be working full time. It's almost as if you are a failure if you can't work in our society which is so unfair when you are genuinely ill!

I have to say that going back to work a month into this was one of the hardest things i have ever done. I knew I wasn't up to it and i made myself do it and i felt totally shell shocked. i literally had to think in my mind that i was gonna do it even if i passed out and just took each minute as it came. I was biting back tears most of the day and even now I often feel like im going to cry and many times i have cried in the toilets or on my lunch hour but i try to hide it from my colleagues as best i can.

However i think some of you have worse overall symptoms than me and feel more nauseous and generally ill than i do, for me it is the dizziness, strange head and intermittant fatigue.

I suppose they say what doesn't kill you will make you stronger - i keep trying to think there must be something positive to come out of all this...ilive in hope anyway xx


Hi Sandie, i had the mri in june 2006 i started with labrinthitus april 2006, again thank goodness it was clear but i still keep thinking when i have these repalsed what if something has grown since then!!! daft we are and i think the more worried i get on the muzzy head the worse my ears feel and the more i panic. Thnak you all again for making me feel welcome

love sarah xx

Hi all,

Just want to echo Susanne's comment about those of you who are able to work on through this. I was made (voluntarily) redundant in June, good timing because I went before I was pushed sorta thing, had been taking lots of sick days. I'd go into work in the morning at 7, and sometimes be home again and in bed by 10, the dizziness was so draining I had to do it. My boss was grand about it but you can only push these things so far. So fair play to those who can work on.

Gloria, it sounds like our illness is following a similar path, you mentioned about your brain turning to mush - you're at roughly 5 months now? That's when the same thing happened to me, my short term memory went really bad and I struggle to concentrate, always double checking to make sure I'd turned off taps and lights, locked doors etc. I've had an ok couple of weeks now, just the odd day of dizziness, memory still isn't great but people on here have said that the memory and concentration is one of the last things to return so hopefully it's starting. Oh, and I've bought some of that Valerian you talked about before - will give that a try :)

Sarah, try not to be so stressed out about brain tumours and stuff. I have one. I was diagnosed with it about 2 months back, but my neurologist says he thinks it's a coincindental find and they're just going to keep an eye on it by MRI scanning every 6 months or so. One of the tell-tale signs of brain tumour is severe headache - he says you'll know if you get one of the headaches. So far no major ones yet. And it hadn't grown between the 2 scans I had. It's over 3 years since your last MRI, could you get your doctor to refer you in for another one? Just to put your mind at ease? I'm sure it'll be fine. The mind is a powerful thing - I had convinced myself I was going to need surgery before the neurologist told me otherwise - it was a great relief as you can imagine.

Anyway, that's my lot for now,

Gary.


Hi

Rich - I don't know if you read all these posts but thanks for monitoring this website! Can I just ask how long your Labs went on for? Do you still have problems with it?

Jemma - for me it was ok coping with the dizziness, but when my balance started to go that is the thing which scared me to death and still does. It's something you just cannot get used to. These attacks, for me, come from nowhere and just hit you all of a sudden. You feel like you are going to fall over, though I never have, and you really cannot walk properly. It really is awful. Having said that, you are still very brave to keep going through this. I still have problems on ramps, escalators, in lifts and they can still send me spinning. When I went to see Green Day last week they put us on the 17th floor of the hotel and I had specifically asked for a lower floor so we could use the stairs. Sharp got that changed! Does anyone ever listen?

The main lesson learnt for me is that you have more patience with everyone you meet because you never know what they are going through in life. I mean look at us, we are goi