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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

74 Replies

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  • linda_96682
    linda_96682 kaykay1972

    Posted

    First I am so sorry you have this. I have had it for a year and was not on any meds thank goodness. I went to a PT for 6 weeks she helped me the most. I have learned to walk within the waves of dizziness and have even drove two weeks ago. I know aI will always have this feeling and have good days and bad days. At the beginning only bad days. Depression is a big thing with this so talk to somebody. One person told me to take each day as it comes bad days are just that bad days no rhyme or reason. That helped me a lot. I am not able to work as lifting sets off the dizziness and nausea. After a year I am able to walk 3 miles a day and am going to go to the gym I can not go alone but it is a great thing none the less. I wish you all the best hang in there.
  • kaykay1972
    kaykay1972

    Posted

    Yeterday i went to a homeopath . This the alternative medicine therapy i have chosen . Since my coticosteroid dose ends today . I ll be completely off medication . I havent gone fore symptomatic relief meds as prescribed by the neurologist . I have taken that call based on the neumorous inputs from other Dr s in real and virtual world . The Homepathic dr says that vestibular neuritis is a 100 percent reversible disease and i will have to take his med for atleast a year. The good thing was he talked to me and not to my reports . I aired all my views on health to him . He was very patient . It was more like psychiatrist s sitting . I felt immense relief after talking to the Dr . Almost cried ( Had nt cried for a long long time ) He talked about anxiety , stress etc . I felt  assured . However i am right now having symptoms the panic has not set in . Hope it works 
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Sounds very interesting,you ll have to keep us posted,I m not against trying alternative medicine therapy x
    • kaykay1972
      kaykay1972 Fudgeybear1

      Posted

      Yes of course i will keep you all posted . My steroids course is over and i must say that it was indeed effective . I am much better right now . Lets see what the future has for us . 
  • kaykay1972
    kaykay1972

    Posted

    One more observation . I have an added symptom since last  two days . I experience jerks just when i am about to fall asleep . It scares the hell out of me . Any body else has these issues? Do i need to go to psychiatrist ? Is this due to anxiety ?
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      I also have them now and again,sometimes I feel numb when it happens,I think it's to do with anxiety,yes they are very scary I wouldn't t book the psychiatrist just yet 😄
  • linda_96682
    linda_96682 kaykay1972

    Posted

    I get the jerking as well scares my husband more than me. 
    • Fudgeybear1
      Fudgeybear1 linda_96682

      Posted

      I like that one it made me laugh, my husband sleeps so soundly he wouldn't t know if I fell out of bed.x
  • kaykay1972
    kaykay1972

    Posted

    Update:- i took all my reports and went to a old GP . This GP has almost 50years experience . More than my neurologists age right now. He is kind of retired i asked for his opinion . He smiled and wrote me a med . Aspirin 75 mg delayed release ( ecosoprin D ) . He has assured me that i should be better in a week . I hope this grand old man is right .
  • kaykay1972
    kaykay1972

    Posted

    Symptoms are back . Its like a giant wheel some times up some times down . Feeling very depressed . WHAT HAVE I DONE TO DESERVE THIS ???? 
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      I m sorry you re feeling bad,I m not feeling so great these last few days,I m so frustrated my doctor can t think of anything else to do to help me,the only thing I ve been offered is anti depressants,I m getting that desperate I'm starting to consider them.i ve been like this for 6 years and I m not sure how much more I can take !!! Constantly feeling like this makes living a normal life impossible x
    • marlene21102
      marlene21102 Fudgeybear1

      Posted

      I'm 3 yrs in with this daily ( waking hours ) .plus having this Tinnitus going every day all day ,and bad neck ache going .So many of us ,yes it's impossible having a normal life ,I've forgotten how that feels . I feel sad for the ones who have to work .The extra added stress that must be horrendous .we go to bed and hope above hope the next day it will have gone for good .
    • kaykay1972
      kaykay1972 Fudgeybear1

      Posted

      Yes fudgeybear it makes living normally , impossible . Anti depressants are on cards for me too . Lets see . I feel better after lying down . So i am horizontal most of the time . Though i havent stopped working, my gait issue has affected my social life . People arent aware of this disease so its that much hard to explain the symptoms . 
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Hanks to you both for replying,it's a comfort to be able to speak to people who have the same problems,but I wish non of us were suffering.i m lucky I don t work but I do have an eleven year old daughter and feel like I m not being a proper mother to her,her dad or sister has to go places with her and it breaks my heart that I can t.

       How do you feel about going on anti depressants? I ve been one type and they didn't t agree with me,but ithey did help calm things down a little,but im scared of ADs so much I m getting anxious just thinking about taking them lol.My social life is non exsisant aswell x

    • kaykay1972
      kaykay1972 Fudgeybear1

      Posted

      I too have reservations about going on AD s . The side effects are discouraging . I have braved the dizziness episodes without taking the antihistamines as they will slow down the final outcome . So i might as well fight this anxiety out . My heart goes out to your 11yr old . Too young to understand . But it s in her best intrest that you take good care of your self and be back on your feet.  I am sure we all will over come this hurdle one day . (Yes i am in a fighting mode today ) . smile
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Aw thanks Kay.i agree with you,I just feel that in 6 yrs I can't get back to the old me ( or anywhere near the old me ) she has no memory of me taking her shopping or taking her anywhere really.i can t remember the last time me and my husband went out and I didn't t come home early. I m tired of fighting but I m also petrified at the thought of taking another ad.i must admit I did feel more able to cope with my condition without having to struggle with the anxiety side of it.thank you for listening to me x
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