Vesties’ Village

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2 years in, not yet diagnosed but still hopeful

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Joined: 4 months ago
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Hi everyone,

My name is Stephanie. I just came across VEDA today, and I burst into tears when I saw this support community.

My vestibular problems began 2 years ago with sudden onset vertigo that lasted for 14 hours with no variation or letup; I couldn't move or eat or drink without vomiting. My doctor's office refused to prescribe or recommend anything but a nurse friend suggested meclizine, which ended the vertigo but left me very dizzy. (I found out later that meclizine was contraindicated with my anxiety medication, Buspar). Anyway, the dizziness took about 2 weeks to settle into constant, 24/7 lightheadedness and imbalance that I still have. The best description I've found is that I feel like I'm on a rope suspension bridge. Some things make it worse (exertion, quick turns when I'm walking, pressure test of my eardrums by my audiologist) but nothing makes it go away even temporarily.

My primary doctor was useless. She repeatedly said "it's normal, it will go away." Eventually she referred me to an ENT who said the same thing. After about 5 months, I had bugged my primary doctor enough that she gave me a referral to a cardiologist and neurologist. The neurologist said it was an ENT issue and told me to go away, and the ENT eventually gave me a referral for physical therapy. The cardiologist was the first person I saw who actually cared, he ordered an EKG, EEG, and multiple MRIs of my head and neck - all of which were apparently normal. After doing physical therapy for 10 months (twice a day at home plus weekly visits), my PT happened upon a mention of a doctor at Stanford Ear Institute who specializes in vestibular issues. I had one "last" appointment with my ENT and basically badgered him and wouldn't shut up until he agreed to a referral - he tried to get out of it by saying "I don't know anyone to refer you to, so I can't do that" - but I gave him the name of the vestibular specialist and I think he agreed to it just to get me to leave. In any case, I finally got a testing series (VEMP, VHIT, VNG) that took place a few weeks ago, 19 months after my symptoms began. The tests showed abnormalities in my vestibulo-ocular reflex, specifically related to my left ear. I have an appointment with the vestibular specialist in September and am hanging all of my hopes on her diagnosis and treatment recommendations. She has an excellent reputation so I feel very lucky to have gotten this referral! I have been doing PT twice a day for 16 months, it helped at first but I don't know if it's really helping any more. Sometimes I feel less-worse when I do it but sometimes it has no noticeable effect.

It has been very frustrating, dealing with the medical system. I'm still living my life but pretty much everything is uncomfortable. Not all is bad, I'm getting married in October and have a wonderful home and kids and future husband!  I really feel for those on these forums with situations much worse than mine, you have all of my sympathy.

Hugs to all who need it, I wish you all the best and hope that everyone can find some sort of relief from their vestibular challenges.

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Joined: 3 months ago
Posts: 2

Hi Stephanie, I am in Queensland, Australia. I was diagnosed with vestibular neuritis in 2014. Initial impact sounds similar to you. Sudden onset of very bad spinning vertigo which lasted many days. Spent about a week in hospital under the care of a specialist neurologist.  Once the spinning settled down I was dealing with general imbalance, couldn’t move my head at all. Was diagnosed vestibular neuritis pretty quickly after numerous tests and scans.  Was on rivotril and later Valium to calm the brain down. Was off work for 3 months and only able to do office work for half a day initially as my brain would get overloaded and I would struggle to get words out. Spent many months doing specialised vestibular/balance physio. I still struggle to this day with the permanent feeling of imbalance. The best description I can give is it feels like I am slightly drunk all the time. I no longer have the spinning sensation. I cannot be exposed to noisy environments, particularly noisy restaurants or bars. I can’t cope in those environments any more. It is strange that you are having trouble getting a diagnosis. Hope you get the answers and a plan to manage soon. Keith