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Vestibular neuritis , a glimpse of HELL

Posted , 15 users are following.

kaykay1972
kaykay1972

Past few year i have been experiencieng dizzy spells on and off . Been to all possible specialists . Was suspected of having hypoglycemia initially , then came insulinoma , then paraganglinoma , then phecromocytoma . None of the noma s stood the diagnostic tests . In the mean while went thru all kind of cardiac check ups and alternative medicines for that. Come october 10th this year i had a terrible spell of dizziness which then evolved in to imbalance and abnormal gait ( I tend to deviate towards right ) Then some ENT guy made me go through MRI which again was normal . Blood work for thyorid panel and thyroid anti bodies were reported normal . He referred me UP to a neuro physician who did further testing like ENG, Balance assessment and it tuned out to be vestibular neuritis .

I am 43 , fairly active Male . This balance issue has pulled me down in a big way . I am unable to walk for a hundred memters without needing a course correction . People stare at me as if i have downed a few drinks . I am a vegitarian and have had no alcohol for last 10 years. I have a feeling that this thing is not going to end . The neuro guy says that this disease is self limiting and has put me on steroids along with threatment for vertigo and dizziness . He also added that 95% of the patients having this neuritis dont have a repeat episode . I feel so helpless and depressed . Been thinking of making a will . Despite the dr s assurances and confirmation from second opinions I still feel doomed . This is a cruel disease to have . Where every Dr says you ll have to give it a couple of months to resolve on its own . They also say that medicines for Vertigo ( cinnarizine etc) will delay the ultimate result as the brain is not allowed to compensate for the loss of balance . One has to try and keep following his routine so the brain gets a chance to compensate and retrain it self for new rules of balance . There are some parts of days that i feel very upbeat and then the dizzyness strikes and the cycle begins all over again . I feel exhausted all the time . Any body else is going through this hell ?  Has any body tried any different approach like alternative medicines or some therapies ??? 

1 like, 74 replies

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  • Fudgeybear1
    Fudgeybear1 kaykay1972

    Posted

    Hi,I m so sorry you are having to cope with this awful condition,my heart goes out to you as I suffer the same hell.i had it for 6 yrs.i have seen many doctors and had many tests that all came back clear.i was only diagnosed 3 yrs ago with uncompensated labythrinitis.Do you anxiety aswell?the only thing I can say to you is that you re not alone,I do the crawthorne cooksey method,it helps to keep my neck from feeling so stiff and stops the spinning feeling .i wish I could be more help to you
  • sarah15069
    sarah15069 kaykay1972

    Posted

    Hi I to feel sorry for you, I have bppv I've had to chuck my job in I can't drive or go shopping alone I must look like I've been drinking I hate going to bed coz that's when I get dizzy the most, I went to the hardware shop the other day I looked up at some lights and nearly fell over from being off balance. I'm told it will go but I honestly done know how other people cope, how the hell are you ment to work if you can't even drive my heart goes out to you and others with this it's not nice it has totaly put my whole life in turmoil 
    • Fudgeybear1
      Fudgeybear1 sarah15069

      Posted

      Hi Sarah,I m sorry that you are suffering aswell,can I please ask if you suffer from anxiety? I have terrible anxiety and I ve been told it's connected to my balance problem 
    • kaykay1972
      kaykay1972 Fudgeybear1

      Posted

      Yes fudgeybear 1 i suffer from anxiety . Any correlation between the anxiety and the symptoms .

       

    • kaykay1972
      kaykay1972 sarah15069

      Posted

      Yes sarah it feels awful to be unable to do simple tasks . Plus you become too concious about your posture , gait etc etc. I think we re all in the same boat which is rolling and rocking :p

       

    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      My doctor told me that when the signals in your ear become unbalanced it sends out the signal for the body to panic,hence the anxiety,there must be something in it as everyone that I ve spoken to who has similar problems with their ears also have anxiety
    • marlene21102
      marlene21102 Fudgeybear1

      Posted

      Just read your post ,I agree anxiety and balance does seem to go together ,it's the brain can't work out the eyes and ears not working together ,I've got Tinnitus as well ,another problem ,had it bad 9 yrs now ,then 3 yrs ago ,out of nowhere I got the balance going ,to this day I still have it. rocking / swaying .Will add I've had permanent neck ache since all this began 9 yrs ,from having a severe head virus ,so has anyone had neck ache that then led to eye trouble ,and this balance . I've had 3 eye test in 9 yrs ,all healthy I'm told each time ,even had 3 different opticians look at them ,so I think it's ears and my neck main prob where it first began .All we do is run around in circles ,trying to get it fixed .
  • sarah15069
    sarah15069 kaykay1972

    Posted

    Hi yes I have anxiety I also have vision problems I can't judge the ground very well somedays everything looks surreal it's taking a toll on my family money wise, I baby sit two days a week and my daughter is so worried somedays as she's leaving I can see in her eyes ( our you going to be ok ) I do have a partner to help but he has to look out for me as well now . I have had some nasty falls due to losing my balance so god knows when I can look for part time work again and I'm so scared it might come back and then what do I do about that job?
    • Fudgeybear1
      Fudgeybear1 sarah15069

      Posted

      My eyes can t always focus Sarah,I can t even think of working at the momment,I feel guilty because I m not looking after my family the way I would,I just want yo be normal
    • sarah15069
      sarah15069 Fudgeybear1

      Posted

      Just hang in there i to have vision problems it must be part of it all. It's hard for others to understand unless they have had it, we don't look sick sometimes my partner says to me you better now coz your hanging up the washing, he doesn't know I'm spinning out while I'm doing it or if we go for a walk I'm focusing so hard on the path I end up with a headache. I woke up feeling great some mornings have a shower go  to wash my hair and it comes back for weeks. Try and think you can to suppress it 
  • kaykay1972
    kaykay1972

    Posted

    So nobody has undergone vestibular rehab exercises ? I was thinking of taking one . But the neuro didnt recommend . However most of the literature on net suggests that rehab exercises is the only way . Any ideas ??

     

    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Are vestibular exercises the ones where they lie you down on your side then sit up quickly and lie on the other side?
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Are vestibular exercises the ones where they lie you down on your side then sit up quickly and lie on the other side?
    • sarah15069
      sarah15069 Fudgeybear1

      Posted

      Hi not sure but I saw a dizzy spell specialist and she did do that to me I felt better for two days then I woke up with it again, I think you just have to try anything I even tried earplugs in my left ear. Sleep half up 
    • janet_1963
      janet_1963 kaykay1972

      Posted

      I am currently doing the exercises and have for a few months now! It is getting better but my PT said I have a long road of recovery! I to have stumped the doctors on how to treat the dizziness! I know my family at times think I am making up the issues! You have to keep doing the exercises and progress to more difficult exercises to retrain the brain! It is very difficult to live with!!
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