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  • My life-ruining experience with vestibular neuritis

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    Old 04-29-2014, 12:58 AM   #1
    Join Date: Apr 2014
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    My life-ruining experience with vestibular neuritis

    Hi to everyone. I have been reading discussions here for quite a while and I think it's time to write down my own experience with this incredibly invalidating illness. It's probably the hardest challenge I've ever faced and sometimes I really doubt I will make it to a pleasant end.

    It all started in June/2012. I was on holiday with my friends (I CURRENTLY am 19.. still can't believe it), perfectly sober (I never drink), perfectly relaxed, eating some fruit over the sink. Suddendly everything started spinning, and although the house we had rented was pretty small, walking to the bed was a real challenge. Once I reached the bed things didn't seem to improve, I still felt spinning and had to stay as still as possible because every movement would worsen things. Each time I closed my eyes the spinning sensation would become unbearable. The day after I woke up feeling a bit better, and in some way I managed to return home by train. I visited my doctor who was very relaxed, told me that it was nothing, probably just "an episode". I still cannot believe that an episode of severe spinning vertigo can be considered of minor importance, but yet. I scheduled a private visit to an ENT doctor, who said that I probably had some kind of inner ear problems but he couldn't tell which one until I had vestibular tests done. I managed to do them the same day, but he had no clear diagnosis for me. I visited another ENT, who is regarded to be very expert on inner ear matters where I live. He visited me, had a look at my tests and diagnosed me with vestibular neuritis. Prescribed me ARLEVERTAN (dimenhydrinate+cinnarizine) only in case my symptoms where unbearable and CHOLINE (in the form of alpha-gpc) to help compensation. He was very optimistic and said that in such a young man symptoms would have been gone in a few weeks. Those few weeks lasted two years. I also visited another ENT, known all over the country for his expertise on this kind of problem, who always confirmed that I had some vestibular damage resulting from VN.
    He had me done an MRI, which was evaluated by a neuroradiologist and a neurosurgeon, all negative.
    I also did VEMPs and ABR, all good.

    After the first episode, severe vertigo (almost) never came back again. But I am left with a couple of symptoms which have really took over my life.
    I constantly feel off-balance, like me or the environment is moving slightly and this makes me nauseous and nervous. My eyes feel stiff, like I needed glasses (but I dont), my neck is always tense. I also get tired really really fast, some days I do nothing and yet I feel exhausted in early afternoon. I always feel foggy, like "there is something" between me and where I am, like I had cotton in my head, like I didn't fully wake up in the morning. This makes me even more prone to feeling dizzy and moving. I cannot afford in any way to go to bed late. If I do, the following day I feel terrible and my symptoms are worse than ever. All this has had an huge impact on my life, and just thinking about it makes me wanna cry. It's been 2 years since I've last went out at night (again, that means from 16 to 18, the age where people normally have fun and are worry free), concentrating in order to study has become a real nightmare, the words on my books slightly shift from side to side and it makes me sick) and I am scared as hell of travelling.

    I went to London this christmas, alone with my girlfriend. Just imagine, 18 yr old guy on holiday with his GF, what could be better? For any normal person that would have been the best week in years. What was it to me?Hell. Always felt bad, fatigued, dizzy, worried and anxious. I believed I never smiled in a week except from pictures. I really wonder how am I gonna live the next years, because this is not life as gift, this is just a burden. People really seem uncomprehending and they have no sympathy for me. In the past I used to swim (and I still do when I feel better) and also I went to the gym, so I do look very fit and sturdy, I guess they wonder "what could be possibly wrong with you?" and they just laugh about it. you feel drunk, huh? funny thing labyrinthitis. there must be a cure, they say.

    I need someone to tell me that it is tough but it eventually goes away, I desperately need to hear this, my happiest thought are all about a future where I can live a normal life.

    I am also sorry for my english, we are not famous for our good english where I live.
    thank you for reading.

    Last edited by Administrator; 04-29-2014 at 11:43 AM.

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    Frances999 (04-29-2014)
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    Old 04-29-2014, 07:18 AM   #2
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    Re: My life-ruining experience with vestibular neuritis

    Hi I'm sorry you are going thru this. I know how bad it can be and I'm not belittling it but my dog got it he could not walk. He was old and the vet thinks he eventually thinks he had a stroe it was so hard on him it was so sad.
    I was thinking of a couple of things a.d o.e was to find a large teaching hospital where you may find a dr specializing in this or running a study.

    Also research and find where the gov keeps a running compilation of all studies going on. You may find one to participate.

    Have you found a national organization on it yet? Theres got to be one.

    I would also keep a notebook on everything you go thru.

    Best of luck cathy

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