Labyrinthitis back in 2008...lasted two years...td it was viral. Now it has come back

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Told it was a virus. Now its back again. Anyone ever gets labs a second time?

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  • Posted

    Hi Debbie, I had violent attack 3 years ago, told it was virus (probably), Vertigo has been continuous since then, Canals on Left side of head atrophied and are permanently gone. What did you mean by another attack? The super spin effect?
    • Posted

      No ive never had spinning. Im dizzy as in feeling drunk or unsteady, plugged ears, pressure on ears and back of head, anxiety, sleeplessness and feeling unwell.
  • Posted

    Yes, I had it last. September. Never really went away completely, still had the balance issues Thrn another attack in January, then another in August.  The specialist neuro otologist I see says that each time I get a virus it will return. It hasn't caused any more damage to my vestibular nerve, though what it does is undo the compensation your brain has undergone in the meantime. Very frustrating!  I met a woman the other day at one of my aqua classes and the same thing has happened to her.  I feel better knowing this now because if/when I get sick with a virus or 'flu then at least I am now on notice that in all probability this de compensating will occur.  I still have some balance issues but I am working at overcoming these through the exercises I have been given.

    just keep on keeping on.

    christine

    • Posted

      Thank you for your note Christine. Are you doing vestibular rehab then? I plan to try these again as well. Can you function without meds? How is your anxiety? Do you contine to work? When the virus attacks, are you aware of it? Do you recall having a cold or flu? Sorry for all the questions but you seem to be someone i can relate to.
  • Posted

    Hi. Debbie, will try and answer your questions as best I can, no problems with asking, ask away, I know when you get this horrible 'thing', you just want as much help as you can get.

    I try and do the vestibular exercises although I have slacked off a bit lately!  I do exercise a bit though, walking outside is good and turning my head side to side, also I do work out in the gym a lot and swim, aqua classss etc so I think keeping active has helped with the compensation. I do some walking balance at the gym on some sort of squishy mats and also standing on one leg on another squishy mat, eyes closed.

    re medication. I've never taken any. I don't ever recall being offered any, except Stemitil for the first attack when I had violent nausea.  Subsequent attacks have been without nausea so haven't needed it.

    anxiety, I'm not really an anxious person although of course in the beginning before a proper diagnosis I was of course extremely anxious. I thought it was something really serious and I went all out and had an. MRI and CT scan done. I have to say though that the specialist I went to was so positive about recovery over time that I guess I settld down a bit.  I get frustrated about not being able to do things as fast as I used to because I do have to take more care because of the balance issues.

    i am currently not working and was fortunate that when the first attack occurred I had just finished up in my employment. I am hoping to return to work next year but only on a part time basis.  We shall see.  I am a psychotherapist and need to ensure that I'm really mentally attuned to other people's problems before I return to work.  Have to pack my own stuff away!smile 

    yes, like most people I know when I'm getting sick so will now be attuned to it.

    hope this helps. Write again if you need to know anything else.

    christine

    • Posted

      Hi Christine....you're a psychotherapist?? That explains everything!!! I am seeing one on Thursday so she can help me with my anxiety!! Im very anxious and i know it doesnt help one bit! If i could learn to relax/meditate, it would be half the battle won. I am also trying not to take meds becuz i know they make the brain lazy....the opposite of what you want to have happen! Do you have plugged ears? I have lots of pressure on my bad ear which has 49% damage to my balance nerve. I try to keep active by walking but have not been at the gym since this began. Is this your first time with this illness and what is your doctor calling it?
  • Posted

    Hi Debbie, Well done on going to see someone about your anxiety.  I do hope he or she can help you get this under control as it will greatly assist you I'm sure.  I don't meditate, can't do it, I've always been a go, go, go, person.  But I do use an Alexander Technique exercise which involves me laying still for about 20 mins a day - I do it in 10 min sessions. Can't say I empty my mind but Ido put relaxation music on and try to be in the moment, so a bit of mindfulness technique coming in theresmile Yes, I do have a plugged ear, the right for me as that's the one affected by 80% I was told after the first attack, also some pulsating tinnitus on occasions, not always thankfully,  I am also very sensitive to sound in that ear, again sometimes.  I have spoken to my specialist about these symptoms and she says they are normal and will eventually subside.  Mmmm, I say.  But to be honest they are much much better than they were in the beginning.

    i had to make myself go back to the gym, slowly, as I was so unsure of my balance. 

    My specialist calls this condition vestibular neuritis but I gather that the US and the UK call it labrynthitis.  Not sure where you're located.

    Did you have hearing loss with yours?  I had hearing loss prior to this happening and only on the affected side.  Interesting, it's almost as if it was working itself up to have an attack, if that's possible!smile

    I hope all goes well with the psychotherapist.  Please let me know and ask away!

    Christine

    • Posted

      Hi Christine...i live in Canada...my ENT called my first bout labyrinthitis too. Ive just come from a hearing test...first one since 2009....my right ear is fine...my plugged ear has been affected by hearing loss. It is not severe but the audiologist said that this finding points my condition to a disorder in the inner ear only. He didnt come out and say Menieres but he was implying it. I still dont understand as my symptoms are exactly like yours but he said labs and neuritis dont last that long! Feeling frustrated Christine!
  • Posted

    Hi Debbie, I know that frustrated feeling well, we are very old friendssmile My neuro otologist and audiologist discounted Menieres really early in the piece, and to be honest from what you're saying is correct, it doesn't sound like you have Menieres to me.  That too was my concern when this first happened to me but it is really quite different to VN/labrynthitis. From what I can glean these two terms are interchangeable depending on where you live or what your medical practitioners call it. I had my hearing loss well before this happened and it is quite severe, but because no more so after the initial vertigo attack.  

    To say it doesn't last long is not really helpful, is it?  You want an answer, not an unspecified time limit. I know that feeling.  The first couple of doctors I saw said the same thing and it was soooo sooooo frustrating.  How long is long?  Anyway, my neuro otologist put me right on that, though it took me some time and a few visits to accept her words,   "It will last as long as it lasts, everyone is different, it will resolve in its own time" is what she said, "BUT you have to do the exercises!" So that's what I did and still do as much as I can.  And, don't stop yourself doing things you want to do because of this. I cancelled an overseas trip when it first happened, but I plan to go early next year, good or bad!  Life's too short to let this take over. You will get through it.  There will be bad days, good days, and back and forth, until one day, hopefully you will have a day or two, as I do, when I completely forget I've got this thing - then something or someone will remind mesmile 

    Well I'm now off to start my day at the gym and then off to the city and the audiologist, back home, pick up some groceries and go over and have a meal with my lovely daughter and grandson.  BTW I've just spent a stint of 2 weeks looking after my 18 month old grandson whilst mum was on a business trip (she is a single mum) and I thought it would be the hardest thing because of this VN, but you know, we got through it, him and me.  I'm not as fast as I used to be when it comes to chasing him around at the park, but I think he understood that and we had a great two weeks. I'm exhausted thoughsmile 

    • Posted

      Christine...you've been very helpful to me. I enjoy our chats and know you understand. I'd be interested to know why your docs discounted Menieres at the start? Can you remember why?
  • Posted

    Hi Debbie, when I finally got to see the neuro otologist she ran a series of tests and that is when she discounted Menieres.  I think it was to do with the nystagmus, which I had but was considered to indicate Menieres. Christine
  • Posted

    Hi Debbi' sorry forgot to mention it was also about my hearing loss progression.  Christine
    • Posted

      You mentioned ear pressure way back. Is it continuous? I have the worst pressure in the morning...in only one ear...my bad ear. It scares me because i always think that the pressure will trigger a vertigo attack...even though ive never had one.
    • Posted

      I've worked out that the pressure could be both stress and possibly weather related. It is always in my bad ear and I never had it prior to the VN. It isn't regular although, as I've said I definitely think climate chanes and wind particularly, maybe thunderstorms in the offing or distance? Who know. I've stopped worrying about it as it goes away after a bit, particularly if I get out and do some exercisesmile

      Christine

    • Posted

      I just read that if labyrinthitis comes back a 2nd time, in 95% of cases, it is called Menieres. My ENT said the same thing. I am devastated.

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