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Labyrinthitis going backwards

Posted , 6 users are following.

guest1
guest1

Hi,

I was diagnosed with labyrinthitis 3 weeks ago after suffering severe dizziness and being unable to walk. After 2 weeks I thought I was improving after doing balance exercises and was able to go for walks and on one occasion drive down the road. Over the last few days everything seems to be going backwards, I'm struggling to get out of bed and feel nauseous all the time from the dizziness. I don't want to start taking the anti sickness tablets again as people say you need to get used to not using them but don't know what to don't know why I seem to be going backwards. Is anyone able to help? I saw an ENT doctor and they said it was normal.

0 likes, 7 replies

7 Replies

  • brian40174
    brian40174 guest1

    Posted

    Hi there, many peoples' experience of vestibular conditions is that they take much longer than three weeks to clear, and in some cases they never properly resolve. Have you investigated PPPD? It's a chronic condition which often results from vestibular issues like labyrinthitis, vestibular neuritis etc. It's not a particularly encouraging prognosis but it may be worth arming yourself with the relevant info before strapping yourself in for what may be a bit of a rocky ride!

    • guest1
      guest1 brian40174

      Posted

      Hi brian40174, thanks for your reply. I've looked at PPPD and it is certainly is a possibility. I'll give a bit more of my background. I had a bad cholesteatoma over 15 years ago that left me with severely damaged balance and permanent hearing loss in my left ear. I regained all my balance about 2 months after this first episode. I had 4 operations since then to cure me, the last being a mastoid obliteration 5 years ago to seal up my affected ear to prevent the condition ever coming back. I've had 15 dizzy free years so was surprised that this has all come back, especially as my ear specialist referred to my ear as being dead. I don't feel like I'm suffering from stress although I have to say a lot is going on in my life that could cause stress but I'm often referred to as being very laid back. I'm due to see another ear specialist in a couple of weeks that did my past op's but I'm afraid he'll tell me that he doesn't know what's causing the return of my dizziness/balance problems. I'm going to persevere with my Cawthorne Cooksey exercises in the hope that one day I'll get better but I'm worried taking long term sickness will cause me to lose my job which I need to keep for my families sake.

    • maria61198
      maria61198 guest1

      Posted

      Hi guest 1. Ups and downs with this disorder are normal. I had my first episode in 2007, went on for three years, returning here and there then came back this year. I have VN . I find you have to keep moving. also weather changes can bring it on. Keep up the exercises every day, even when you feel better.

    • guest1
      guest1 maria61198

      Posted

      Thanks maria61198, that's reassuring to hear. I know exactly what you mean about keep moving. When I sit and watch tv or use a computer my vision occasionally makes funny movements making me feel unwell. If I do things around the house I don't notice it as much, it's just very tiring - I was so exhausted yesterday I slept for 14 hours! When you had episodes for three years were you able to do normal things in-between, did your balance get back to normal for a while before getting worse again?

    • maria61198
      maria61198 guest1

      Posted

      Yes, more or less. Key is to return to normal activities as quickly as possible. I didn't realize this at first, even when you feel dizzy. Having said that, I practice avoidance behaviour like crazy. I haven't been in a plane since 2006. Airports make me crazy dizzy. even shopping malls do it. So I do other things, go shopping locally. I'm retired so no big deal. But it's tiring.

  • Golden_lover
    Golden_lover guest1

    Posted

    so its nothing like vestibular problems? because after my gastric bypass disaster no one diagnosis me with the ear problem ! so years went by doing more damage , they thought i just had polyneuropathy

  • guest1
    guest1

    Posted

    Update:

    Thank you all who replied to my post - your support really helped me get through this.

    I saw my past ear specialist who really knows his stuff. He examined me and immediately told me that some crystals in my left ear has become dislodged from the virus. I was told to carry out Brandt Daroff exercises twice a day (when I get up and when I go to bed). This is to get the crystals back where they belong so they won't keep causing the benign paroxysmal positional vertigo (BPPV) symptoms.

    I'm not fully recovered, but I am back to work and leading an almost normal life now. One thing I was advised is that I will feel worse in the morning and get better through the day (which is true). This is because lying down when asleep allows the crystals to move around in the wrong place.

    Hope this helps those with a similar condition and my thoughts are with all who suffer from this horrible debilitating condition - SteveM

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