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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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  • linda_96682
    linda_96682 kaykay1972

    Posted

    It is the nature of the best the ups and downs. Talk to your PT. I cried a lot during my visits and she was a great help at helping me put it in perspective. I wish I had some magic for you but there is none just hang in there.
    • kaykay1972
      kaykay1972 linda_96682

      Posted

      I havent been referred to a PT yet . My neurologist says i dont need one . But i feel like crying whenever i see people walking or jogging or riding a bike . It makes me think of this wretched situation .
  • Jennmarie42083
    Jennmarie42083 kaykay1972

    Posted

    Hi kaykay1972, 

            I was just diagnosed with vestibular neuritis after 9 years of dealing with dizziness, faint feeling, tinnitus, earful less, feeling as if someone is pushing me over,  anxiety,  depression, and the list goes on. I was put on an antiviral called acyclovir which is supposed to help. I also was prescribed a low dose of valium. So far I am not getting better but was told it could take months. Hopefully you feel better soon. 

    • marlene21102
      marlene21102 Jennmarie42083

      Posted

      Me to Jennmarie 9 yrs  tinnitus since 1996 ,but 9 yrs ago got virus ,left me with worse tinnitus,plus rhinitis neck ache ,then 3 yrs ago got the balance issue ,began out of nowhere,to this day I'm dealing with it .Yes anxiety to.

       I've done exercises  took Serc tabs and others ,even anti sickness tabs ,although sickness would suggest  Menieres ,I know it's not that .im out on how to get it back to being normal ,due to length of time had it ,I know lots had it for even longer .yes ear fullness since virus ( head) like I'm deaf but I can hear a pin drop .Mind boggling ,and to how many people suffer these same symptoms .you got any clues as you have tinnitus and balance .curious to how others take on it .

    • Jennmarie42083
      Jennmarie42083 marlene21102

      Posted

      I am on acyclovir which is supposed to get the virus that is attacking the nerves under control. I'm only one month in and ent said it can take 2-3 months to feel anything and up to a year to feel better. I'm crossing my fingers. Nothing I have taken has helped with the balance or tinnitus. I also have a weird feeling like nerves are contracting in my ear. My hearing is not affected at all. I have had every test you can think of and all came back normal. Has anyone on here been prescribed the antivirals? Curious to know if it provided any relief? 
    • marlene21102
      marlene21102 Jennmarie42083

      Posted

      What are you on. Name wise ,see if I can remember if then I'd been on it .

         Antibiotics play havoc with me ,and tinnitus ,get some bad spikes .headaches etc ,I drink water soon as I wake ,the virus I had was bad ,it got into the menengies ( fluid surrounding brain ) .lost over 4 stone in the 4 months I had that virus ,that's how long stayed in my system .Sorry you've gone through this to ,all from a virus unbelievable .

    • marlene21102
      marlene21102 Jennmarie42083

      Posted

      Yes no I see it ,been on that .what doesent work for one maybe okay for another ,I do check any meds out as to the tinnitus interacting ,bad enough now ,so I'm wary . I've not seen a dr since last Feb ,maybe time I paid a visit ,go another round with all this .Get fed up with having to dealing with all of it .never an end to it ,
    • Jennmarie42083
      Jennmarie42083 marlene21102

      Posted

      That is the same way I feel. No relief. I feel dizzy and faint 90% of my day. Tinnitus all day. Definitely causing severe anxiety and depression. Just want my normal self back. Not sure I remember what she feels like lol. 
    • marlene21102
      marlene21102 Jennmarie42083

      Posted

      Ditto ,what's normal with how long we've had it ,Question    What started yours off ? If you can remember ,I've never had depression to which I'm thankful for.. Anxiety hangs constantly around me ,think meds set my tinnitus  off worse in the beginning ,I was coping okay with low hiss ,now it's a big problem . Again all meds react on people different .the meds gave me anxiety ,my biggest of regrets going on them for the Rhinitis of all things ,never had anxiety in the 4 months I was ill ,go figure .Im on Vit B12 and magnesium .B6 I can't take ,but the 12 I'm fine with .Anxiety worse when I wake up ,tapers down as day goes on .How about you ? The balance been far worse to over past 12 months ,keeps me rooted .
    • Jennmarie42083
      Jennmarie42083 marlene21102

      Posted

      I don't recall what caused mine. I don't remember being sick just remember having a dizzy like the room was spinning sensation one day and then I felt dizzy like I am spinning. I have a head rocking feeling pretty much all the time. Balance isn't horrible for me. The dizziness is by far my worst symptom. I never had an issue with depression until recently. My symptoms seem to become less harsh at times,  not sure if it is because I get used to them or another reason. But recently the last few months they have been so bad I can barely make it through work. That caused the depression to hit me. And the anxiety is horrible. I have valium for it but I don't want to take it at work. Argh will this ever end? 
    • marlene21102
      marlene21102 Jennmarie42083

      Posted

      How hard you have it working ,but bills need paying you've got no choice ,so no illness relating to it either ,what in hells name that's causing it ,I know in menopause this is a symptom ,along with tinnitus ,both can begin .Didnt know that till couple months ago ,I was shocked ,but there it was in print .

         I'm in the Rocking /Swaying ,how I feel trying to walk ,so it's ears and eyes not matching up ,,but 3 eye test ,says it's not my eyes ,so got to be the ears ,spinning is like the roundabout you get on as a kid ,me it feels like I'm on a permanent boat ride . How many Drs and ENT see this daily ,got to be logical cause for us having it ,plus the tinnitus at same time .

         If you need to take meds for anxiety and the depression so be it ,if they help .What helps you get through the day .go for it ,we have an illness we didn't want or ask for ,it's just happened to us .Wishing you better days and hope a cure for this ,tinnitus no cure ,but the rest got to be some thing we can take to getting it gone .

    • LynnV
      LynnV Jennmarie42083

      Posted

      I was just put on Acyclovir two weeks ago. I was wondering if the Acyclovir helped you and if you had any side effects from it. I have been sick with this awful stuff for 7 weeks. It is the second time I have had it but it went away after 4 weeks the first time.
    • LynnV
      LynnV Jennmarie42083

      Posted

      Hi Jennmarie. Has the acyclovir worked and what side effects did you get from it. I just started acyclovir 3 weeks ago and was hoping to find someone with good results.
  • kaykay1972
    kaykay1972

    Posted

    Hi , 

    i have a devlopment to report .my symptoms are almost gone !!! I say almost because i walked a bit for 2 days . The old GP says its because of Ecosprin , Neurologist thinks it s the steroids . Whatever may they say . I think ecosprin did it . Becaus ethe GP had said that i should be fine next week ! I hope this is the end of this nightmare. You guys please talk to your dr s about using aspri n. Why should any body suffer . Praying hard that things stay like this forever . Amen 

    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Wow that's amazing I'm so pleased for you,I.m going to talk to my doctor next week so I will mention it thank you.the only thing is I can t asprin as I have asthma but you are the second person to mention steroids!!! Thank you and fingers crossed it's the answer to your prayers x
    • Fudgeybear1
      Fudgeybear1 kaykay1972

      Posted

      Hi I m speaking to my doctor today and I m going to mention about me taking a course of steroids.i don t know much about them,is there a particular strength or how long to take them for?are you still feeling good? I don t think I can take anti inflammorties as I have asthma.xx
    • kaykay1972
      kaykay1972 Fudgeybear1

      Posted

      Hi , 

      i am still feeling good . Not like 100 percent .but my gait is almost normal . The only thing nagging me is that i feel exhausted by evening . And if i put in a whole day at work i have slight dizziness . But much better since i started this discussion .

    • kaykay1972
      kaykay1972

      Posted

      Hi,

          After overcoming my balance problems almost completely i have new set of symptoms . i am feeling extremely tired . All parameters like BP ECG normal . Dr says i might have cold and flu . I think that i have become susceptible to all kinds of infections in short my immunity is on decline . Feeling down once again . Any body else has gone thru this phase?

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