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Labyrinthitis - we dizzy people!

Discussion in 'Health and wellbeing' started by Kitschwitch, Aug 6, 2006.

  1. Does anyone else suffer from this nasty chronic illness and would you be prepared to contribute to a thread?
    It is so not understood by the majority and I for one, having struggled through more than two years of teaching with constant vertigo, spinning sensations, nausea, tinnatus and a whole range of other ghastly symptoms, would love to know how others have coped in the classroom.
    The goal here is to share experiences and give mutual support. Even dizzies can smile!!
     
  2. Nudging to the top as I initially posted when most people were on holiday!
     
  3. Hi Kitschwitch

    Glad I'm not alone. I was diagnosed with Meniere's Disease about 15 years ago. It's been fairly quiet for ages but kicked off a few months ago - most of my hearing has gone in my right ear and I'm waiting to see a specialist about a masker for the tinnitus. When it's playing up I get really exhausted - luckily I work 3 days so that helps.

    What's your story?

    Rosie :)
     
  4. Hi Rosie!
    Have had this for 2 and a half years now, much improved but still struggle with balance daily which saps the energy dreadfully! Started with a virus which damaged inner ear. Have tinnatus and trouble coping with noisy classes - thankfully mine are generally well behaved and small!
     
  5. Hi there K. How are things with you?

    Sorry I haven't posted for a while but, s*ds law, I have just been diagnosed with fibromyalgia and have been quite poorly. BUT have also made an interesting discovery re the tinnitus and dizziness. It gets worse when I wear my varifocals and better when I wear my normal old reading glasses. Don't know whether you wear glasses but thought it might be worth a mention.

    Take care

    Rosie
     
  6. Hey guys,

    I can so relate to the dizziness as I have had it for over 2 years now. I was referred to a neurologist in Feb (after 2 years of going back and forth to an ENT specialist) who said, chronic fatigue syndrome - and he also said quite a lot more which made me feel like he had mixed me up with another patient. This confusion led me back to my GP who referred me for a second opinion and I was diagnosed with vestibulopathy in July (damage to inner ear and brain has not caught up yet), and the neurologist made so much more sense this time around. I recently went to a neuro-otologist who put me through more tests. They have recommended that I go on VR, vestibular rehabilitation. This is basically a set of balance exercises in order to re-educate my brain.....my tiredness comes from my brain working over time to try and compensate for the damage.
    I thought I was going mad at one point, especially when the first neurolgist suggested that the dizziness was all in my head.
    Have any of you been tested with the Hallpikes maneouve?
     
  7. just wondering if you can help, my mum has been getting very bad dizzy spells for about 2 years now. she ends up really very unwell and can't move from bed - the dizziness causes her to be sick and because she's always sick she's got no food in her system so then feels more dizzy! this is accompanied by agonising head aches. she has been to the doctor a number of times about this and first time was told stress but every time since then she's been told it'd an inner ear infection(viral i think) so has been given vertigo tablets and told to take pain killers and sent away. the thing is it keeps coming back and she's absolutely floored. for the past 6 months she said the dizziness has constantly been there but she only goes to doctors when it gets really bad. i hate seeing her like this as she is normally always so well and upbeat but this is really getting her down.
     
  8. K - you have mail

    B - thanks for sharing the info. Will def speak to the ENT consultant and find out whether vestibular rehab works with meniere's. my meniere's seems to have gone bilateral recently (both sides) so it might help.

    l -sorry to hear about your mum.

    By the sounds of it she needs to be referred by her GP to an ENT consultant. She may not feel up to asking for this herself - could you go along with her and ask the GP for the referral.

    She should not be sufering like this. There are many conditions which cause this type of dizziness and the sooner she has it diagnosed by an expert the sooner she can get on with her life.

    Well done for supporting her and seeking information. I have lots of info re meniere's disease if you need it later on.

    Don't give up - your mum really needs you now - and let us know how you get on.

    Rosie
     
  9. just upping the thread
     
  10. I am so glad that I found this thread!

    I have been off school for the last week with exactly these sorts of symptoms. I went to the doctors and he prescribed antibiotics for something I am not really sure about!

    Anyway, I am still feeling really poorly and have had a sleepless night worrying about school and the fact that I will need more time off during a busy time, when ive only been at the school since the start of september.

    I do feel as though im going mad - the headaches are unbearable and im fed up with the room spinning around me. The guilt of having to take time off is also really getting to me.

    Any advice would be appreciated.
     
  11. hi K

    Just wondering if you got my mail.

    Rosie
     
  12. firfenwen

    sorry to hear about your dizzies. I know it's hard but try not to worry about feeling guilty about being off - I just couldn't function in school just now and am trying my best to accept that. it is an invisible condition so don't feel bad when everyone starts telling you how well you look :) you feel what you feel.

    it may well be that this is a bout of labrynthitis which will resolve itself - time will tell. I believe it can be caused by a virus too which may not respond to antibiotics.

    At least you are informed and know that if it hasn't resolved itself or responded to the antibiotics then you can ask for a referral to an ENT specialist - it took me years to have my meniere's diagnosed and you are NOT in that situation.

    are you on your own? can someone help out with shopping/cooking

    I found that dim lighting in the bedroom helped and that if I woke up dizzy it helped to focus on an object. I never suffered headaches though and, if they persist, I think you should go back to see your GP sooner rather than later. When I am in a flare I also find it helpful to cut out alcohol, ciggarettes, caffiene (including chocolate) and salt as these can are things which can aggravate the inner ear. Tick Tock tea is a good substitute if you're a tea drinker.

    Sometimes the fluid balance of the inner ear can also be affected by hormonal changes so it is worth letting your GP know if you have any other symptoms too.

    Let us know how you get on and wishing you a speedy recovery.

    Rosie
     
  13. Hi,
    Thank you to everyone on this thread because at last I have been given a proper diagnosis!

    I went to the doctors this morning and saw a locum doctor who was wonderful! She didnt have much time to examine and talk to me properly during normal surgery so i went back after surgery to her and spent about 45 mins there!

    She diagnosed Labyrinthitis and said that it was probably caused by a serious ear infection i had a couple of months ago. I have been prescribed Stemetil tablets to help with the dizziness and sickness. I have to see how this goes but she is prepared to sign me off school for as long as i need.

    I am to go back at the end of the week to see how things are going. She will then have some more information for me, and will consider referral to a specialist if need be. Apparently, her sister went through similar things so its a matter close to her heart.

    I guess i was really lucky to have found a doctor who understands!

    If it wasnt for this thread then i would still be thinking i was losing my marbles - so thank you!
     
  14. Great news - it's such a relief to get a diagnosis. Am really pleased for you 'cos from now on the only way is up! Hope you begin to see some progress soon. Take it easy, look after yourself and PLEASE keep in touch! xxx
     
  15. hooray - so glad you've got the diagnosis and the support to help you through it. And well done kitchswich for starting the thread too :)
    Rosie
     
  16. Just upping the thread.

    How is everyone?
    Im feeling a little more human today - not back at school yet, but hoping to go back next week. Have been able to get up and down the stairs on my own today so feeling better for having done something!
     
  17. So glad you are beginning to feel a bit better :) Wondered how you were getting on.


    I am still waiting to see ENT consultant - rang them up yesterday and they said request was marked as routine so it would be at least another 6 weeks. Since I made the request back in August and am now in 4th week off work I asked GP to change it from routine to urgent and she promised she would. When I rang the hospital today they said they have not heard from GP - s'pose I could wait another couple of days and ring again.

    My lovely aunt and uncle have offered to pay for a private consultation and now I am wondering whether to go for that and get the ball rolling.

    I can't tolerate noise of any kind - the sound of a chair scraping the stone floor in the kitchen is appalling and the tinnitus is screaming in both ears. I'm a bit fed up to be honest.

    Rosie
     

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