Vestibular neuritis , a glimpse of HELL

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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 ??? 

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  • Posted

    HI

    I have had this since January and I too like you have felt my world turn upside down, I try to remain positive and used to be a really outgoing confident person, I get very upset when i talk about this irritating problem and sometimes start to cry, i think pull yourself together woman ( am i depressed ?  why do i cry ?  ) I used to love walking at weekends but all that has stopped so no exercise for me !!!!  i couldnt walk on the uneven ground. At first i giggled and made fun of it  saying look no alcohol cheap way of being p**ssed but then its got more serious, and i like many others i presume begin to question whether there is light at the end of the Tunnel.  I am awaiting my MRI results next week but anticipating that it will be normal.  I went to physio yesterday at Derby Royal and she was really helpful and explained it in more detail thats its nerve damage following the virus.  I wish i had broken my leg rather than having this.  I too find shopping in a supermarket or anywhere stressfiul and begin to panic and want to get back in my car, again like many others have mentioned.  I used to love browsing on my own.  I dont know if others try to explain it like i do , i say when i walk on even ground i feel like my head is separate to the rest of me , i feel like one of those nodding dogs you sometime see in the back of cars???  i also fnd i am forgetting things but is that my age ( 53 and female )  I also sense memory loss and cannot bring things i used to like names etc instantly to the forefront, which again upsets me.   I have began a new business so not off work due to being self employed and hope i can make the business grow.  I was just curious if anyone was getting disability or is it called PIP these days.  I am still managing to drive ( thank god ).  I also have found that i have had to slow everything down like walking.   It is most annoying and upsetting and i am glad there is a group like this on here, it has helped me by reading what everyone else is feeling or going through.  We are still normal and i do think there are people worse than us ( me trying to stay positive )

    • Posted

      Aw sue,you ve just described everything I would have said,I loved shopping!!i was never in the house,if friends were going away I d be the first to say I m coming 😄 my thoughts can be confused( I am 45 female ) but when the doctor explain about signals in my brain were struggling with my ears I now just think that my brain is working very hard trying to my ears out it effects my thoughts my eyes can t always focus either if I m having a really off day.i claimed PIP the lady had to come to my house because I find it hard travelling I told her all my problems and how hard it is to live a normal life and I recieved £21 a week.i wish I d never bothered,I can t work at the momment and I ve never claimed benefits.the whole thing is degrading
    • Posted

      £21 a week !!!!  what a waste of time !!!!!!!  Dont they realise how debillatating this thing is ?  Again its only us who suffer who realise how it ahas turned our lives upside down !!!!!   Cant work but cant claim anything !!!! typical
    • Posted

      I know,that's exactly how I feel,I m sure people think we re just a little big dizzy,I get people saying,just power through,get yourself a little job,or words similar.i d be over the moon if could just go and have a little shopping trip with my little girl 
    • Posted

      Hi sue I know exactly what your saying I had to resign From my job in a warehouse my income protection wouldn't  cover vertigo nor would government benefit they said to me vertigo will go away, he said it could been gone by tomorrow two months on I still have it,if I want help I would have to go on newstart and wait 12 weeks coz I chuck my job. I had to pull my super to help us out. Anyone with any sort of illness must pull there hair out 
    • Posted

      oh your obviously younger than me as you say you have a little girl, I am 53  so my girs are grown up but i have 2 grand daughters - dont know how i would cope having little ones!!!!  exactly people dont know how we feel , true keeping your mind occupied helps , i forget i have it , till i go to walk to the toilets or go to make myslef a drink and then bang oh yes Dizyy wobbly head comes on.  I have been given some eye exercises from the physio as i cannot look up without feeling discomfort and standing with eyes closed as i wait for the kettle and you have to stand with your feet one in front of the other so toe to heel but able to be able to grab the worktop if feeling dizzy -   there are a lot of exercises on the sheet to do step by step - Have you been ti the hospital yet Fudgybear >?  what stage are you at  with doctors etc >?    i am all for alternative medicine but not sure that would help with this ???

       

    • Posted

      Is it vertigo sarah as my physio class mine now as nerve damage so its neuralitis ?  does this spin a diff light on things, Can you get ESA ?  i have another friend getting ESA  - there is a helpful site somewhere cant remember whats its called for ESA  i was reading it and very very informative for people with illnesses like this.  May i ask your age Sarah  as this seems to affect all different age groups  i am 53  ( act 23 at times lol see still keeping my humour when i can )    Get doctor to sign you on sick and find a doctor who def is clued up on vertigo - my dr is brilliant and i wont see any others at the practice and she herself had a small bout of it
    • Posted

      Hi sue no I'm 57 but I baby sit two days a week for my daughter she is very concerned as she leave her daughter with me,I have a partner to help me but this THING I call it effect her as well she's worried that if it gets any worse she wound have to put my granddaughter into child care which she can't afford, I love having her so I don't let on how bad some days are.
    • Posted

      Hi sue I saw specialist that deals with dizzy disorder she said coz I damage my left ear drum from a fall it's brought on vertigo, I'm seeing neurologist   next month, have to pay 300 if I want to see one that soon, she couldn't  give me any tine frame as to when it might go but she did say it would come back at some stage 
    • Posted

      I know but the waiting  list was over a year throught the gov it might of gone by then so I have to pay and I need some answer now 
    • Posted

      I only a little younger,my daughter is nearly 12 and I'm 45.i hate all of this,I ve been like this half of her life !!! I have had tests and scans and was told its  uncompesated  labythrinits and told I have to live with and carry on as normal.But how can I be normal,when grabbing hold of things for support,how do I go out and feel confident.i was put on anti depressant and hated the side effects so I came off them,now I ve been suffering withdrawl symptoms that has made my balance worse,I feel like I can t win,I m starting to feel so down about it all.i do the crawthorne cooksey exersices they help a bit 
    • Posted

      Hi I know how you feel, I'm trying to keep off the the drugs if I can I love gardening so I do that to keep my mind off things I get very dizzy doing it  it I don't care I would lose my mind if I didn't, its all to do with head movements, so I try and not turn to much which is hard coz it's normal to move the head I've gained so much weight since I got this that doesn't help either for me try and focus on somethink you love and work on that . Thinking of you 👍
    • Posted

      Hi Sarah you re so right,have you heard of the crawthorne cooksey exercises ( I may have spelled it wrong ) it helps me a little,it's very simple head movements,it just seems to help relax my neck,we have to try and move our heads as normal 
    • Posted

      Sorry my I pad keeps freezing,i do the first few exercises sitting down,I d probably face plant the floor if I did them standing up lol.its good that you do your gardening,you re doing quite a lot of work doing that.i hate the thought that you and others are suffering,but it is nice to talk to someone who knows excactley how I feel take care x
    • Posted

      Hi sure

      I'm new to this site would you mind me explain my problems I am a female age 57 thankyou

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