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Can vestibular neuronitis last this long? could it be something else? any personal experiences?

Posted , 11 users are following.

andyom
andyom

On late october I started to feel the floor moving, it happened slowly over a few days until two weeks or so later I was spinning.

I do not have any nausea, any vomit (and I thank God for it!), I also do not have any nystagmus.

What I do have is a lot of anxiety, my eyes feels like they lose focus when these attacks occur, I also developed tinnitus, and like I am being pulled/pushed on the legs, shoudlers (a weird feeling of being pulled or pushed by something)

I went to a neurologist who did an MRI of my brain with and without liquid and found nothing, he told me my brain and cerebellum were in perfect functional state.

Went to an ENT who after a series of tests on my ear (putting water in it, looking at lines moving on the wall, spinning on a chair, measuring my neck movement etc) found that I had an ear imabalance.

She thinks its vestibular neuronitis... so she recommended Vestibular rehabilitation exercises, they include sitting on a chair, rottating and looking at an arrow on the wall... also moving my eyes, balance etc.  (I was getting better, no longer I had anxiety and everything was going back to normal), In fact I was starting to forget about vertigo, all until three days ago where something happened that sat the whole thing off and now I am back to the spinning, the sensation in my eyes, the weird pulling/pushing etc.

This has gotten me down and today is my last session of therapy, I will speak to them about it  though.

I try not to read too many sites because a lot of them are depressing and full of missinformation, but I keep finding a lot of people here who have been suffering from this for a long time.

Can vestibular neuronitis last this long?  could it be perhaps menieres disease? (I have no history of it in my family)....  

any help or comments could really be helpful

thank you!

0 likes, 9 replies

9 Replies

  • megb4387
    megb4387 andyom

    Posted

    Absolutely. I first started feeling symptoms in January of last year. I dismissed them as nothing until the end of February when they were at their worst. The anxiety that came with it was awful. I remember feeling like I couldn't even walk straight. They lasted this bad from late Feb. to the end of April and slowly began getting better but they're still there and probably will always be there. I've learned it depends on certain things. If I'm tired, run down, sick, stressed, or drink too much caffeine my eyes go bonkers and I still get dizzy. Oh, and if I'm in really dim or really bright lighting. I've had relapses that last minutes to relapses that last weeks. I've come to terms with it. I know I'll always feel like this forever but also know that the more I accept it the better about it I feel. Do you have the pressure in your head and ears as well?
    • andyom
      andyom megb4387

      Posted

      I do not have pressure in my head, but my ears in my sometimes I notice sort of a "pooom" as an unclogging sound and the tinnitus continues as normal.

      So you are feeling better?  I am really glad you are telling me that although this is long lasting you do get better slowly!

      do you do anything in particular to keep those attacks and relapses at bay?  were you diagnosed with Vestibular neuritis?  thank you for your post, it certainly makes me feel better!

       

    • jaz210
      jaz210 megb4387

      Posted

      This sounds extremely similar to mine, mines started nov 2013 after i got a stomach virus, ive suffered from vertigo since childhood but when all this imbalance and lightheadness started i was freaking out completely, all the doctors assumed it was stress related and a delayed reaction to one of my brothers who committed suicide almost 4 years ago. I went to soo many different ents neuros and kept changing physicians because i was so sure it was something worse and my anxiety had ne believing I was dying because I couldn't even walk a block without feeling like I was going to pass out. All your symptoms describes what I'm going through and if I don't sleep enough or if i stress myself out, i feel lightheaded and dizzy.. and its been a year and change of the same thing so my doctors found i have an imbalance in my left ear and they say its Vestibular Neuritis...its a horrible feeling.
  • anne05147
    anne05147 andyom

    Posted

    sorry Andy to hear you were getting back to feeling well and then wham it kicked off again.  This is what happened to me but i have tinnitus in my left ear following a head injury many years ago then 2 years ago started with BPPV.  That cleared after a few weeks but left with permanent balance problems.  Then another bout of BPPV.  ENT said they think it all a result of head injury and i never noticed it until it got this bad.  Then a diagnosis of MAV, then the week i went back to see ENT felt good that week so was discharged. 

    How do you know that you haven't got nystagmus, I'm assuming ENT told you, because my eyes go off focus and i feel space out on occasions with this eye focus problem.

    I suppose you have checked out the Menieres websites and it does include tinnitus and deafness.  I am losing hearing in both ears.  I think you can have more than one condition going on with this illness and it all gets clumped together under vertigo but the causes could be more than one condition.

    Sorry i can't answer you questions, just offer that i get it, cos we all seem to have similar problems with different diagnosis, but for me it definitely started in my left ear.

  • paula59
    paula59 andyom

    Posted

    Hi Andyom

    Ive been dizzy now for 2 1/2 years without let up.  But then they think Ive got silent migraine.  I have seen GP, ENT but not had the same tests you have, I had BPPV test which was normal.  Then went to neuro surgeon for neck problems then neurologist.  Now got two of them.  One for headaches.  I think all of us on here have been ill for a long time.  Its a very weird problem which seems to have many different causes.  Dont give up you need to get to bottom of it to get rid of it.  The anxiety part is horrendous but then anything to do with your head and eyes and lack of balance is very scary indeed.   You feel so unsafe.  Have a look at SCM as well as silent migraine.  They seem to be very similar. 

  • brenda77455
    brenda77455 andyom

    Posted

    Sorry Andy, I've nothing much to offer you other than sympathy - I'm novice at this! I started with what's been described as 'vertigo' around the same time as you.  One sudden onset of dizzy/sickly/sweating/deaf-in-one-ear spell where I needed to be helped to lie down and lasted about 20 mins/half an hour.  I went to the GP who said they refer for urgent ENT appointment if one-sided deafness persists, but my hearing loss resolved along with the dizzyness.   However; I had a few 'minor' episodes until Sunday 15th February when I experienced lots of minor episodes throughout the day and had resolved to make an appointment next day to see my GP.  Unfortunately, that I night I had my MAJOR episode, spinning, vomitting, sweating profusely and unable to walk.  I was very frightening and I said so (tearfully) at the time!

     I have been in bed since and only able to walk to the toilet for the first time (with physical support) on Wednesday 25th.  I was unable to eat at all for the first four days (only silver lining is that I've lost loads of weight!) and have since been having small amounts of bland food each day.  I can sit up in bed now as long as I am careful with head movements! I AM feeling much better that I was, but still a long way for anywhere near proper functioning.  It is a bit of a reality check to read what others are suffering, and more worryingly, continue to suffer. It is concerning to think that this might be only the beginning of a problem rather than a one-off resolving!! 

    What about you? You worried too? Have you had your last therapy session?  How did things go? I have no diagnosis yet and am still completely deaf in my left ear.  I've finished antibiotics, just taking anti-sickness/vertigo stuff. Will see GP again next week and see where we go from there .  Have you had meds?

    Sorry to hear you have had a setback, and hope you are having an OK day today.  Look forward to hearing from you.  I really think it does help knowing there are people out there struggling with similar problems!!  confused

     

  • brenda77455
    brenda77455 andyom

    Posted

    Actually, Andy I probably meant 'empathy' not 'sympathy'!  Sentiment's still the same - I feel for you.
  • janett
    janett andyom

    Posted

    hi andyom, 

    I just found this blog. I tool have this. it started after a dentist violently pulled my tooth and snapped my neck. it's been 2 months...started as bppv, then constant dizziness and my eyelids feel droopy..and like I've been kicked in the head by a horse.

  • steve73683
    steve73683 andyom

    Posted

    Hello,

    Finally some one I have who understands my problem, exactly the same as you I am suffering from it since 4 years almost. Met a number of doctors who could never understand what it is and had to keep changing doctors hoping some would understand. Recently I met a neurologst but nothing chnaged and then I met Gastro who directed me to and ENT specialist. About to start medication and still just hoping to recover from it. Has anyone recovered from it? I am 35 now and suffering from cohlestrol also as I cant walk much neither can I stand up for longer. Doctors advise me to walk for 6 Kms a day which is impossible having these issues

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