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    Old 03-13-2004, 05:47 AM   #1
    will100
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    Viral Labyrinthitis nightmare

    Hi all, this is my first post here so please bear with me. My problems started at the beginning of December 2003 when after a night out on the booze I felt extremely dizzy and had to go home from work. At first I put it down to a very bad hangover but after a week had passed I felt better but was still left with this dizzyness/fatigue problem which I couldn't understand. After about 3 weeks I went to see my doctor who told me I had Post Viral Syndrome.

    I continued to struggle on with work however at this stage I had stopped going out at all hoping that it would pass, however it just didn't get any better. I also noticed that I had Tinnitus (only really irritating at night) and my ears were popping continuously, I had had to move my phone away from my ear on a number of occasions when talking to people as the sound was going 'right though me' if you know what I mean. I tried steam inhalations several times a day, decongestants and nasal sprays, but nothing seemed to have any kind of lasting effect. I decided to go back to my GP who told me it sounded like an inner ear infection as my ears looked clear and she referred me to an ENT specialist (it had been about 2 months by this stage).

    After waiting 6 weeks I eventually saw my ENT specialist who asked me to march on the spot with my hands faced up and arms streched out, with my eyes closed. Of course I found this quite difficult but thought I'd managed it OK... only to discover that I had in fact been marching off to the left!! I then had a hearing test which showed I had some problems with lower tones or something in my left ear. Anyway in the end he told me I had Viral Labyrinthitis and that the first 3 months are the worst... it should get better that kind of thing. He didn't explain the Tinnitus or ear popping but gave me some steriod nasal spray which should help.

    Anyway 3 and a half months down the line I feel no better off whatsoever, I still feel dizzy and very fatigued.. I'm pretty much housebound apart from when I go to work which I am really starting to struggle with now. I thought things would get easier by now they haven't. I'm at a complete loss, what should I do now? I have been trying Chinese Herbal medicine and Acupuncture which unfortunately don't seem to have made any difference and I'm going back to my doctors this week to see what else I can do. I would feel much better if they could just completely prove or disprove the diagnosis.

    I was interested to read a post by jonathanp as it seems you are going through the same as what I am right now.... I'm a 22 year old male also in the UK and I'm finding this very difficult to deal with. I'm usually full of energy always going out, doing things etc.. etc.. and this has just completely crippled me. My friends are all very understanding but none of them really appreciate what it's like, as other people have said it varies day to day so some days I'll go out and other days I just can't because I'm too tired. I think it is very hard for people to understand that I am ill when I am still working and very occasionally going out. It's incredibly frustrating!!!

    I just feel like I'm in my own little world, sometimes I feel like I'm almost on autopilot... sometimes I can find myself in a pub or a bar & I just totally forget where I am and have to remind myself. I try to describe it to people like this: 'You know the feeling when you first wake up in the morning, then you have a shower get dressed and then you feel properly awake?.... well I never feel like that 'properly awake' feeling'. I suppose it does all feel like a dream (or more of a nightmare) which I would very much like to wake up from!! I has been good reading the posts on hear as a lot of the feelings people have described I can relate to completely.

    I too, like many others it seems would love to read some more posts where people have recovered from Viral Labyrinthitis... as there don't seem to be that many. I guess people stop using the board once they get better.

    Well, to end on a positive note for those of you going through the same thing your definately NOT ALONE as I have now discovered. It feels very much like that at times, I'm just trying to continue the best I can and hope that in time my brain can adjust as I've been told.

     
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    Old 03-13-2004, 09:35 AM   #2
    Emsybobs
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    Re: Viral Labyrinthitis nightmare

    Will.

    Your story seems v much like mine...I'm a 24 yr old from the UK whose life has been grounded by the nightmare that is called viral labyrinthitis.

    It's been 17mths for me but fear not, not everyone has it for this long...What I can say is I didnt notice ANY improvements for about the first 6 mths. I am slightly better but still not great at all...like you I used to love socialising, clubbing, now I just dont do it. I can manage a quite pub on a good day but that's about my limit. I worked (well, studied) for the first 9mths but then I stopped and now do part time. Like you my stamina is low and I get very tired.

    I am now doing VRT which is the key to overcoming Labyrinthitis. It takes a long time but the success rate is good. I pray it works for me.

    I am thinking of you and you are not alone. Thsi thing is VERY difficult to cope with and you desrve medal for getting this far. Keep going, keep smiling and keep hoping. You will get better. You just have to be prepared that it may take a while.

    Could you describe your dizziness more?

    xxx

     
    Old 03-13-2004, 03:41 PM   #3
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    Re: Viral Labyrinthitis nightmare

    Hi Will,

    You're definitely not alone. There's more of this out there than you would think. It amazes me that prior to getting viral lab that I had *never* heard of this and I'm 39! But you will soon find people falling out of the woodwork telling you that they either had something like this or know a family member who had it. I know what you mean about going out and sitting there feeling like you're not quite there. Not a nice feeling at all. But I can tell you that things do start to *slowly* turn around. For me I can only measure progression by the month.

    You've probably seen this already but in case you haven't have a read of this page:

    [url]http://www.opt.pacificu.***/ce/catalog/COPE7282/Dizzy.html[/url]

    Hang in there.....cheers,

    Scott

     
    Old 03-13-2004, 05:17 PM   #4
    willsmommy
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    Re: Viral Labyrinthitis nightmare

    Hi Will,

    Welcome to the boards! I have had the labs also - pretty much same as you and its my left side too. I even have mid tone hearing loss on that side, classic labs damage.

    These symptoms do make you very much feel like you are stuck in your own real life nightmare that you cannot just shake yourself out of, I know that one! Try to relax as much as possible and know that in time it will lift.

    You are spot on about saying that most people who recover have left here and you are right! Although quite a few check in here from time to time. Have you started the VRT exercises? and are you trying to get back into a near as normal routine? that seems to be the recommendation to speed recovery.

    I would not be at all concerned that you are still feeling bad at the 3 month mark, same as I was too.You will get better, its just takes a while.

    Hope you improve soon!

    Last edited by willsmommy; 03-13-2004 at 05:20 PM.

     
    Old 03-14-2004, 02:46 AM   #5
    will100
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    Re: Viral Labyrinthitis nightmare

    Hi Emsy!

    Glad to hear that you are making progress. I didn't want to put too much about my symptoms in my first post as I think I went on a bit anyway!!! After reading up on dizziness & vertigo etc.. I now appreciate that there are various different ways which people can feel but still use the term 'dizzy'.

    For me, my dizzyness does not feel like the room is spinning or anything like that... I feel more like I'm swaying from side to side, like on a boat. When I'm sitting down I must admit it is not too bad but if I walk about in a crowd for example, I can get very easily confused & disorientated.

    I'm not sure if I have mild symptoms because the very first time I went to the doctors I actually didn't really mention the dizzyness. I honestly can't remember if this is because the symptoms were not as bad or if I just didn't think it had anything to do with it.

    One of the times I noticed my dizzyness was when I had to keep my head still for a sinus X-ray... I think I did keep still but my head felt like it was wobbling about! Something else is when I walk I almost feel a little bit like I am floating along.... its very strange.

    So for me really, it's more the constant horrible fog inside my head which is the problem... as well as the actual dizzyness. I have read about people who have 'drop attacks' which I am fortunate enough not to have experineced (although admittedly I have felt like I'm about to pass out a couple of times... but not recently though)

    Some of my other symptoms are:

    Tired & Weak
    Difficulty reading
    Tinnitus
    Ears popping
    Detached
    Very hard to concentrate

    One thing which seriosly exadurates all the symptoms is if I have quite a lot to drink, I seem to get the worst hangovers in the world.... ever! Sometimes it takes me a whole week to recover. I haven't tried it lately as it's just not worth it! Has anyone else had the same experience? This is yet another thing which gets me down as I can't even go out and drown my sorrows!

    In reply to willsmommy, yes I am trying to keep things as normal as possible.... still going to work, occasionally going out (when I feel up to it) but for me it's virually impossible to carry on as 'normal'. I've not been doing any sport or excercise lately as I just don't feel up to it whatsoever. Also, going out is a real challange as my friends understandably want to go out to some busy, noisy bar & all I feel up to is a quiet pub (like Emsybobs). Like I said in the original post it's just a NIGHTMARE!!

    Anyway thanks for all the replys, hopefully in time this thing will sort itself out

     
    Old 03-14-2004, 12:17 PM   #6
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    Re: Viral Labyrinthitis nightmare

    How odd. Just noticed one of my words has been starred **** out. Didnt swear! cant even remember what it said - I think "warped". How bizarre.

    Now I really dont understand as tried to post the above and it deleted my original message! Original said something along the lines of yes I get everything you describe will - from the brain fog, dizziness, exhaustion and lack of concentration and imbalance.

    I thought of a new way to desacribe the weirdness I get when in a pub etc - ts as if the air is filled with some clear gas - like the air is not clear somehow. V odd - this is on top of the vertigo/dizziness.

    You will have read on here many of us have been/are going to a renound hospital in London for dizziness - maybe you should look into it? xxx

    Last edited by Emsybobs; 03-15-2004 at 06:32 AM.

     
    Old 03-22-2004, 08:21 AM   #7
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    Re: Viral Labyrinthitis nightmare

    hi,

    i think you mentioned that you were interested by my post!

    i must say your case sounds very similar to mine. how long has it been for you now?

    Im coming upto the end of month 5 almost, i have the odd few days of feeling alright, never normal though. This is a bonus though as i NEVER had any Ok days in the first 3 months. I must say the first 3 months were a nightmare for me. I have not been diagnosed properly yet, but i am in the process. My specialists think i have some kind of post-viral illness. But i am sure its vestibular.

    Like you i find it very difficult to keep active as i am suffering from really bad fatigue. I cant go to busy places as i get really anxious too, which makes the dizziness a lot worst. I go for walks daily (bad days short walks, good days long walks) and try to go out with mates at night to a quiet pub but thats about it. I used to be really active - football 3 times a week - proper 90 mins games, clubbing, staying up late, working, going out with friends.

    hope this helps, ive left a few posts on these boards - have a read through them see if they help.

    Jonathan

     
    Old 03-25-2004, 09:59 PM   #8
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    Re: Viral Labyrinthitis nightmare

    I had a severe vertigo problem a couple years ago. I went through many tests and in the end was told to see a shrink. I ended up going to a naturalist type doctor that does muscle testing and treats allergies and such. She said that I had too much yeast in my body and gave me castor oil pills (look like vitamin A) and acidopillis. The castor oil kills the bad enzymes and the acidophillis grows the good ones. Also, I was to stop eating sugar (grows yeast), bread, no alcohol etc. It cured me. If I don't eat correctly and start feeling bad again, I take another 2 weeks of the same treatment to get my body back on track. I started using the Atkins diet as a guideline because it cuts out alot of the things I shouldn't have. I don't know alot about this viral lab., but it sure sounds like what I had. I felt like I was in a fog. I would have severe vertigo attacks and couldn't function. I just never felt right. I didn't have hearing loss though.
    I don't know where I would be if I hadn't found this doctor. After reading some posts, I wonder if it wouldn't be worth it for you to try cutting out on the food that encourages yeast growth and take acidopillis and see if it helps. I don't think you can buy the castor oil pills over the counter but maybe the other changes would help if it's the same thing I had.
    My husband just had a vertigo attack this morning, went to the Dr. and was told he has viral lab. I felt like they just said that was it because they couldn't find any other reason for the problem. Dizziness is the only symptom. That is the reason I found this message board for information.

     
    Old 03-26-2004, 07:54 AM   #9
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    Re: Viral Labyrinthitis nightmare

    Wow how interesting. Between your attacks did you have dizziness or was it chronic 24/7????? xxx

     
    Old 03-26-2004, 08:09 PM   #10
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    Re: Viral Labyrinthitis nightmare

    Quote:
    Originally Posted by Emsybobs
    Wow how interesting. Between your attacks did you have dizziness or was it chronic 24/7????? xxx
    I would have a major attack that left me unable to function. I had to lie down and do nothing else. Even had help to get to the bathroom. I got very nauseated but never actually vomited. It would take 2-3 days to get to where I could function again. Then I would still feel like I was in a fog and didn't feel right. It was pretty scary. I had it happen once when I was driving and had to have the person with me take the wheel while I slowed down and he steered me to the side of the road. After a week or so I would seem pretty ok but I never did feel well. I felt that way for several years with major attacks increasing with time. I was always tired. After a bad attack I would sleep forever.
    I went to doctors and had lots of tests. They thought it was menieres disease, but I had no hearing loss. They did a test where they put cold and warm water in my ears (terrible-creates a bad attack of dizziness), did hearing tests etc. Finally, they told me it was stress causing it and that was the end of it. Meclazine didn't seem to do much for me. I remember that I could kind of tell when a bad attack was coming. I would feel strange and start sweating a little. Wouldn't be long and things would start moving around.

     
    Old 03-27-2004, 02:53 AM   #11
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    Re: Viral Labyrinthitis nightmare

    Hi everyone,

    Well I'm now coming up to month 4 and still feel the same, however I feel I have had some sort of mini 'breakthrough' which is great. I was beginning to struggle to get through the day & was seriously fatigued in a big way (things almost seemed like they were getting worse) but now for some reason I feel much better even though all of my symptoms are still there, maybe it's my body getting used to feeling like this or maybe I am actually getting better.... who knows!?

    I've been having acupunture which I honestly believe has helped, it's the first time I have tried this & I'm a sceptic but I just thought what do I have to loose. I also went back to the doctors during the time that I felt really bad and I was given some Betahistine Hydrochloride tables which have absolutely NO effect at all!

    On a positive note, I do feel a lot more comfortable in crowds lately but I find that walking is one of the harder things which makes me feel funny (does anyone else get this??) I'm still not up to going to the gym but hopefully it won't be long!? Thanks for all the useful info everyone.

     
    Old 03-27-2004, 03:00 PM   #12
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    Unhappy Re: Viral Labyrinthitis nightmare

    Well, I'm clearly not as well as I seemed to think... I've just been out with some friends and we went to a bar which was extremely busy & I felt like I was going to pass out so I just had to leave. Nightmare, so it seems I'm not so good with crouds still. This thing is really starting to ruin my life

     
    Old 04-06-2004, 11:11 AM   #13
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    Re: Viral Labyrinthitis nightmare

    Wow!! I feel for you guys. Your stories sound remarkedly familar.

    Almost identical story here too. I had just turned 23 (I'm 27 now) and had moved down to devon after I finished at Uni and started my own company, I was pretty active too and used to surf 4-5 times a week. I started to feel a little weird and floaty/wobbly when I walked but over the next few weeks developed into not being able to leave the house when I did the world infront of me turned into a big wobbly swimmy mess, my local GP even decided that I was agrophobic (which I obviously wasn't - I wasn't scared of going out I went out every day I just hated keep falling into ditch..). Over the next few months I tried everything, went to see ENT specialist who told me there was nothing wrong, saw neurologists who told me everything was fine yada yada yada.

    Well that was back in 1999, over the next 5months everything improved a fair amount, I even got so I was surfing again (admitedly there were a few near death experiences). I managed to find loads of information about all this stuff and managed to get a referal to a specialist clinic in London where they diagnosed me with some kind of vestibular dysfunction - probably caused by a virus. Over the past few years I've been up and down with it, at it's best (ironically six months after it started) it was nothing more some problems with my visual perception and minor problems with crowds and at it's worst staggering around uncontrollable (a little like today). The whole thing has been causing me grief since the christmas which I was hoping was a blip - but thats one big blip. I can't think of any real explanation why it got worse all of a sudden.


    Don't be disheartened by this story because I guess I'm not the average patient.

    In my case one of two scenarios must be going on,

    either I compensated a fair amount (if you don't know what decompensation is then see this article <a href=http://www.vestibular.org/compensation.html> http://www.vestibular.org/compensation.html</a>) then I decompensated. Which is possible because I had problems with anxiety before all this started and after 8-9months I ended up with what you can only describe as a pretty serious anxiety disorder and since then I have had a whole number of other health complaints all of which combined together could well have cause me to decompensate/fail to compensate.

    Alternativly there is the posibility that it wasn't caused by a virus in the first place, and I have some other underlying condition causing the problem (menieres, migraine etc)..

    So thats where I'm at. Incidently I know of many, many people who have made a complete recovery after months of problems with this - so there is always hope.

    I would advise avoiding alchahol until you are better as it will interfere/slowdown the compensation process though.

    Johnny mentions he has a bladder infection, any infection no matter how small can slow down or stop compensation (the recovery process) so you may find that once thats sorted you'll improve quicker..

     
    Old 04-06-2004, 12:06 PM   #14
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    Re: Viral Labyrinthitis nightmare

    Billy, v interesting to read your story...did you see Prof luxon in london at the national hospital?

    Your decompensation does sound actualyl v similar to labyrinthitis or a vestibular prob...the fact you got better fully then got hit again indicates this and london would prob not get it wrong...

    I too like jonathan have had a bladder prob alongside this and yes I think it has prevented me from compensating...

    What about going back to London and asking their opinion? Either that or i would suggest starting VRT. xxx

     
    Old 04-06-2004, 03:20 PM   #15
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    Re: Viral Labyrinthitis nightmare

    Yeah, sorry, that first message was a bit garbbled - its been a long day.

    I did infact see Prof Luxon herself. We ummmm and aaaahhhhed (quite literally) about different causes (all my test results came normal which is neither a positive or negative finding - apparently 50% of people with well recorded vestibular problems have normal test results!!) because I had so many ups and downs but we were not able to draw a pattern from it. She sent me for VRT classes which next to useless because 3 months before I had bought a copy of Susan Herdmans book (apparently the bible of VRT) and I was capable of doing all the exercises without producing symptoms. After a number of follow up visits we decided it wasn't worth me visiting them anymore... that was nearly two years ago and everythings been up and down. However, I had one sudden worsening of symptoms last easter, where I quite literally was at my baseline level in the morning and an hour later I was all over the place and it took me about a month to get back to baseline -absolutly no reason for it and the same again just before christmas, except I'm not improving as fast, which leads me to believe that I am having repeat episodes (of something) rather than decompensating.

    It's a tough call because whatever tests they do all they are looking for is dysfunction and they don't know what caused the dysfunction (menieres and migraine eventually both lead to a vestibular loss which has to be compensated for, albeit a less severe loss than VN or Lab) so any diagnosis about the cause of the loss has to be based purely on educated guesses (a one off set of damage is usually attributed to a virus or physical insult), but it's hard to know whether the waxing and wanning of symptoms is due to the compensation/decompensation scenario or a repetitive damage scenario. Any gradual improvement over time (albeit with lots of ups and downs) would suggest a one off etology (ie VN, Lab). And in my case I think it's just over stepped that line.

    I have to try and get another appointment back to london - oh joy!!

    But the real reason for me posting was to point out that you all stand a good chance of making a full recovery if I can nearly do it with all my problems (I have some other things going on besides) then you should all do it without a problem. As someone else keeps saying the key is to remain active - however it's important not to totally overdo things.

     
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