1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

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

Prev
  • nicola38203
    nicola38203 kaykay1972

    Posted

    I have vestibular neuritis ..have had it since sept this year....I have no respite from the virtigo and feel exhausted. .im on the sick from work...cant drive and cant go out alone... I am to have an m.r.i. scan on the 18th of dec..... one thing that bothers me the most about this is my spacial awareness seems to be all messed up..... so going shopping with my husband in a crowded supermarket is like a total sensory nightmare for me........ I have noticed that I get very tearful. ..... but am aware that this is normal..... my world has shrunk!!!  Some friends have disappeared too...... simply because they have busy lives and are lacking in understanding what this is...... its not like a broken arm...... they cant see it...... I get good days.... i get bad days..... and thankfully a very supportive husband and family....... but like all of you...it feels isolating and sometines really lonely..... I try to not talk about it too much for fear of boring people to death. .. its a very strange feeling this thing...... but I try to do my housework chores and read and cook ect..... anything to feel like im not completely useless haha!!!! Ive learned ti read my body more......if I need to sleep i sleep.... the tinnutis is loud and drives me nuts!!!  Lol!!! Im giggling at myself here as im finding that im not quite believing that there's no fast cure.....I guess at 52 I come from an age where the doc just passed you a prescription for anti biotics and all woukd be well again....... but I have to say ive been really lucky health wise...... which is why this is such a shock!!!  Just glad that im not alone in this although I wouldnt wish this on anyone..... its good to know im not goung completly crazy smile
    • linda_96682
      linda_96682 nicola38203

      Posted

      Nicola you could be writing my story. This site has helped so much. I searched a lot of sites and finally found this one.It is a comfort to know that other people understand and don't think because you look fine you are. I had a chance to do a 5K walk with my family but did not because I never know how I will fell that day. I try not to let it control me but it does totally. I am coming up on one year and have had many crying jags. I kept thinking I wiould wake up one morning and be normal again but after one year I know that won't happen. I take each day as it comes. I have a chance to go to Hawaii all expenses paid in the Summer I am very nervous about flying so may not be able to go. I am glad I did not have a stroke which is what they first thought. 
    • kaykay1972
      kaykay1972 nicola38203

      Posted

      Hi nicola,

      hope you have had your MRI . Did you get the reports ? Hope everything is normal x

  • optimisticjim
    optimisticjim kaykay1972

    Posted

    Hi all,

    Thought I might be able to post some information that could be useful to you all. I had an acute onset of what my ENT diagnosed as VN after a comprehensive round of testing, including an MRI, balance test, hearing test, CAT scan, etc (everything checked out normally). I was put on steroids and improved after about three to four weeks. However, I started having bouts where it would return, and it eventually became pretty continuous (dizziness, trouble concentrating, blurred vision, tinnitus, etc.). Under the care of a neurologist, I received the diagnosis of vestibular migraines. I had not really been suffering from headaches during my attacks, but my neurologist said migraines can often present without headache. After being put on a proper migraine preventative, my symptoms were relieved, and I started to realize the specific triggers that would bring them on (food, types of exertion, etc.). My neurologist, ENT, and neurotologist all agreed that if my symptoms have been VN, they would have resolved completely after a single bout of a few weeks to a couple of months. Something to consider!

  • charlotte_01367
    charlotte_01367 kaykay1972

    Posted

    Hi

    I know this post was over a year ago but just wondering how you're getting on now? For the past 6-8 weeks now i've been experiencing similar symptoms. Severe dizziness which is now effecting my working life as i cannot stand up for long periods of time without feeling like i'm going to pass out and i can't concentrate in the slightest. I am currently in a training year which I am required to pass in order to practice in my profession (as a pharmacist) but i feel that isn't going to happen with the amount of absent days/ lack of being able to work and it is really getting me down now.

    Like you i used to be very active, i would go to the gym 4/5 times a week abd play fotball for 90 minutes every sunday. In the past week i only lasted 10 minutes in the gym due to severe fatigue/dizziness and I also could only do 10 minutes on the football pitch.

    I'm 22 and i have only had the symptoms for round 8 weeks now but reading up on these forums about people having these problems for months/years is really making me not want to go on! I really cannot live with these symptoms. I cannot work, do the thigns i enjoy doing and simple tasks such a going to Tesco are now such a chore. 

    When i get the dizzy spells i have massive anxiety attacks and end up passing out through getting all flustered and panicking. My symptoms definitely worsen in crowded/nisy places where there's lots going on.

    So i know exactly how you feel. I really hope things worked out for you and you're not suffering now! Any advice would be gretly appreciated.

     

    • antonio88008
      antonio88008 charlotte_01367

      Posted

      Hi there, my name is Antonio,

      I have been struggling with this condition for three months now. The dizziness and off balance feeling are horrible. I've been attending pt for the last 3 wks. I'm wondering if or when I could see improvement. I've been off work since this started and need to go back. I suffer from neck pain and have been wondering if this is part of it or just part of another issue with my back?

    • kerry51603
      kerry51603 antonio88008

      Posted

      Brow did you get on I started of with labs now I’ve got severe neck pain and pain in base of skull it’s awful xx
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.