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Vestibular disorders are permanent yes?

Posted , 10 users are following.

jlr
jlr

As the title states, just wanting to be clarrified but this one question which keeps boggling me. 

I'm a vestibular disorder sufferer, currently coming into 5 months of it. I'm still clinically undiagnosed but I've been told that it's possibly Migraine Associated Vertigo. Now I'm in a group on Facebook which has thousands of members on it which is for people suffering vestibular disorders whether it's Labyrinthitis, Vestibular Neuritis or MAV. But what keeps confusing me is so many people state they're "recovered" from their Vestibular Neuritis or Labyrinithitis yet they still post stuff saying they've had to learn to live with it. 

So from my understanding from which I've read online about these disorders is.

1. It's a disorder, which means it's most likely never going to fully go away.

2. Once you're over 3.5 months of constant dizziness and other symptoms you're classified as a chronic patient, and most likely you've got damage done to your nerve in which your brain hasn't compensated like normal people would, and because there is damage done your balance nerve is permanently damage and won't ever fully go back to 100%. 

So again, can anybody who has some experience in this area please clarify to me that once you've got damage done to your nerve, and once you're 4-5+ months into it you won't ever fully recover 100% will you? You'll always have some sort of dysfunction to your balance and disequilibrium correct? 

Obviously I know MAV is a permenant neurological illness since it's migraine related and migraines can't be cured, but I'm more interested in knowing about VN or Labs since I'm still not convinced I have MAV. 

1 like, 11 replies

11 Replies

  • judyan20
    judyan20 jlr

    Posted

    I am like you,not convinced it is MAV. It is over two years so it is chronic but I have learned to manage it. I think the damage is permanent but you still make large improvements by keeping active and learning to relax. I am not happy about it but I have come to terms with it. I am part of the Facebook's group and find it helpful to find I am not alone. Also that I am better than many which is some comfort.

    I did get a lot better but have had a relapse which is normal. You can still find that you are one of the lucky ones. I think people who post there are one whole the unlucky ones.

    All my good wishes for your recovery.

  • Lapka
    Lapka jlr

    Posted

    Would you give me a name of the group on Facebook, please.

    Thank you and good luck with your recovery.

    Have you evaluated your neck?

  • Terry6872737
    Terry6872737 jlr

    Posted

    I think that you are spot on.  I suffered an attack back 12 or 15 years ago and fully recovered within 2 to 3 months.  I think that the initial damage to my vestibular nerve was something that the brain could compensate for and I noticed little difference after that recovery.  The second bout that I had was in March of 2014 and I still have residual issues today.  I believe that the second bout damaged the nerve further, or was in the opposite ear, and the damage was more than the brain could compensate for this time.  I have also noticed that minor issues that normally affect your vestibular system now create more issues for me.  I assume that it is due to the fact that the brain has a new normal and cannot quickly adjust when the vestibular system has an additional deficit that is caused by certain medications or barometric pressure changes, etc.

    I have recovered to about 95% and doubt that I will ever get back to the level that I had pre-VN.  You would think that being at 95% would be easily managed but, the bit of offness that I feel can at times drive me crazy.  I still can have issues in large crowds and in environments that are large and spacious.  Barometric changes that happen suddenly cause me issues as well.  I think that those of us that are predisposed to anxiety have the most issue dealing with the little offness that remains.  That is why most doctors will introduce an antidepressant after 4 or 5 months to help resolve the anxiety associated with the ongoing symptoms.

    Things have gotten better for me over the 3 years but, progress after the first 5 or 6 months was slow and as I said, never have reached pre-VN levels.

    • Terry6872737
      Terry6872737 Step123

      Posted

      Was never diagnosed as that so, I am not sure.  I have recovered to around 90 to 95 percent most days but have occasions where I can have a really bad day.
  • laurence76206
    laurence76206 jlr

    Posted

    Hi,

    I have been suffering with what was eventually diagnosed as VN and associated migraine since December 2014.  The physio i was seeing told me that I was only ever likely to recover to around 85% and he was spot on.  Not sure if this is typical of everyone but all those I have ever been in communication with in regard to these conditions feel about 85-95% recovered.  That included Terry (Hi Terry if you are reading this).

    I have (or my brain has) learnt to accept how I am and I carry on with life as I did before, I work, drink, excercise, go on holiday (Plane and ships/boats don't make me feel worse).  I think it is a case of accepting the condition and getting on with thjings.  

    Best wishes

    Laurence

     

    • Terry6872737
      Terry6872737 laurence76206

      Posted

      Hi Laurence.  I sent you a private message a few months back checking up on you.  This website doesn't always notify us when we have something, though.  Good to see that you are moving forward.  This stuff seems to be the best that we make of it.  Good to hear that you have somewhat of your enjoyment in life back.  Are you still seeing Mr. Rae for treatment?

    • laurence76206
      laurence76206 Terry6872737

      Posted

      Hi Terry,

      Good to hear from you.  Yes, like you I have just been getting on with things.  I have  moments when I feel around 95% but then worse moments when I am at about 75% but all in all doing fine now.  I still keep in touch with cally (claire) she is around 85-90% as well and also has days when she is not so good.

      I flew for the first time in June to Croatia, I had no problem with flying.  The wife and I also went to the Norwegain Fjords last August and I had not problem with sailing either so all good.

      I no longer see Mr Rea (now Professor Rea), but have asked the odd question of him via e-mail and he is always kind enough to respond.

      How have yoyu been getting on, still around 95% recovered?

      Best wishes

      Laurence

  • c4013
    c4013 jlr

    Posted

    You must keep seeing doctors until everything has been checked. I have had several types of vestibular diagnosis and for 3 years I have suffered on and off. But in the end it turned out to be a damaged cause spine that was giving me an off balance feeling. So my message is keep a record of your symptoms. I was told I had vestibular migraine. The problem with a lot of these diagnosis are that they are based on symptoms and not clinical findings. So you must look at other possible causes before you accept that it is vestibular. I had an MRI scan of my neck and for me that offered the answer. Keep looking in to it.
    • Dancing_barb
      Dancing_barb c4013

      Posted

      Hi. I am in this situation now. Have been told that balance problems and dizziness could be from my neck and that I should have surgery, but I am going to ENT next week to get checked first. So, I was wondering, in your case, did they do any tests prior to telling you that you had a vestibular problem? Did you have neck surgery and issues resolved?
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