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Labyrnthitis and being unwell.

Posted , 5 users are following.

helen60137
helen60137

Hi

I've posted before here but not for a while. Had Labs for 6 months. Had ENT appt which was useless and was told if I can cope with the anxiety I would recover quicker. Had CT Scan which was clear and countless trips to the doctors. Not one doctor has recommended VRT exercises but I have got some from the Internet so started doing them. I've had a few days here and there of feeling an improve mentioned but still exhausted with constant tinnitus.

This morning I woke up feeling really unwell. Both ears ache, feeling shivery and really out of sorts. Does anyone else feel like they have flu or very unwell some weeks? Just as things start to get a bit easier then BANGalaxy back to square one.

I don't understand why any doctors I've seen do not refer me to anyone else. I do believe they think it is anxiety making it worse which I appreciate but I feel I haven't been helped enough.

I lost my job through this illness and have been house bound on and off although on good days I try and do short walk etc.

I feel I have no where else to turn to now. !!

0 likes, 9 replies

9 Replies

  • Waffalobill
    Waffalobill helen60137

    Posted

    Need to seen a neurotologist.
    • helen60137
      helen60137 Waffalobill

      Posted

      I wish we had one . I live on the Isle of Wight and I was referred for an ENT Appt which is in November. Referred in April!!! Paid private in the end. We have such limited services here so no hope of seeing a neurotologist. Thank you for replying.
    • Waffalobill
      Waffalobill helen60137

      Posted

      There not easy to come by. I live in the US in upstate New York. I have to drive 3 hours round trip to see one. A neurologist can't do anything about it unless it's a brain issue. A neurotologist deals with inner ear and signals to the brain. A regular ENT doesn't have the training. Good luck.

  • chelsea31880
    chelsea31880 helen60137

    Posted

    Yes a neurologist might help. Also keep active with this illness. Even if it feels horrible! Do vrt daily from the internet.
    • helen60137
      helen60137 chelsea31880

      Posted

      Thanks Chelsea

      I do try and keep active as much as possible. Just wish my immune system would work properly.

  • angie_69215
    angie_69215 helen60137

    Posted

    Hello Helen, 

    I had been well for a few months then I got another attack of labyrnththitis.  I notice this time it came with a lit if anxiety and tremors because the ringing in my right ear was louder than normal.  I was taking half a Valium which helped a great deal with the anxiety and balance issues.  But a friend of mind loaned me her hearing aids because she had ringing in her ears as well  and oh my goodness it took all the sick feeling away especially the anxiety. 

    I will be contacting my ENT to advice him of this.  In the past I have had physical therapy  and it had really helped.  I have also been given steroids in the past which help but I feel that staying away from all the medication helps a lot more and I seem to recover faster.  

    I hope you feel better 

    It does get better..  If your ent does not specialize in vertigo issues find someone else. 

    Angie. 🌸

    • helen60137
      helen60137 angie_69215

      Posted

      Thanks Angie

      I am back to the doctors next week and think I will push for some thing to be done.

      It may mean travelling off the Isle of Wight for treatment but the NHS are so under pressure they won't spend unnecessary money on tests etc. Just wish my doctor felt like I do then he would understand a bit more.

  • Smitty89
    Smitty89 helen60137

    Posted

    Hello Helen,

    So sorry to hear your still not feeling well. Ive been off and on with the whole thing. There are days where I'm ok, then It comes back. The last 2 weeks were rough. I'm off balance again amd had flu like symptoms for a few days with a 2 week headache which I never get. I took an antibiotic I had kicking around but only for 2 days and I felt better.flu symptoms anyway. My balance hast improved and I also get muscle twitches now (2 months) I just changed doctors but can't get I to see my new one for 2 weeks.

    Ask your doctor when you go, if you can, to have blood work done to detect an autoimmune disorder. My neuro ordered it and ihad something faint show up in mine, so I have to be monitored every 6 months. There are about 80 diff kinds of autoimmune disorders, but it's worth a shot.

    But my neuro said because it's faint, I shouldn't be symptomatic. But one guy says one thing, amd someone else says another. I know I don't feel right, amd that's all that matters.

    An auto immune disorder can be triggered by stress. So I've been trying to chill out a bit. When I do feel better, I go woth it, but then a few days later something else starts.

    I'm lucky where I have many specialist around me, but doesn't necessarily mean that they don't make mistakes.

    It's called an immunofixation serum that the blood test checks.

    I hope you find some sorta relief. I'm beginning to think I'll have this for a while

    • helen60137
      helen60137 Smitty89

      Posted

      Hi Smitty

      I think I will ask my doctor about auto immune tests. I also have under active thyroid which I've had for 20 yrs so am susceptible to illnesses but dealing with Labs and then something else is just about the last straw. I've also been diagnosed with early glaucoma but funnily enough that didn't upset me as much as Labs. Think it's because they just don't know what to do with us when we have balance issues.

      Thanks for the advice and hope you improve again soon.

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