So many years, so little understanding . . . here’s the abbreviated version:
My first medical appointment was about 15 years ago with complaints of hearing loss, tinnitus, ear fullness, etc. Referred by my primary care doc to an ENT who, after a brain MRI, told me there was nothing wrong with me. Attempts to change his mind were fruitless so I left and never returned. A subsequent breast cancer diagnosis forced my attention elsewhere for the next several years.
My symptoms continued to worsen, including poor balance, trouble walking a straight line and increasing tinnitus. I also experienced significant cognitive challenges, which I assumed was the result of cancer treatment. Consulted ENT #2 who diagnosed endolymphatic hydrops. Suggested a low sodium diet and prescribed diuretics, which didn’t help. Told me I’d probably get worse over time, had no solutions but at least tried to help. Then he left his practice and moved across the country.
I ignored my worsening symptoms as much as possible for a few more years. Finally decided I needed more help and went to ENT #3. I’d been feeling awful, experienced several scary falls, dizzy, unstable and generally miserable. Was once again prescribed diuretics, which did nothing. This doc was worse than worthless but since I didn’t know what was wrong with me I had nowhere to turn.
While traveling alone on an overseas flight, I stood up to exit the airplane and suffered a massive vertigo attack, collapsed in customs and was hauled off to a medical clinic where I was injected with drugs. Lots of drama ensued. From that day on I started experiencing vertigo attacks, some massive, up to five times a week. Incompetent ENT #3 offered no help whatsoever. In desperation I consulted the acupuncturist who had helped me through cancer and she referred me to a local neurotologist. He saved me.
After lots of tests and no definitive diagnosis, we agreed to start treatment for vestibular migraine. Before treatment got underway, I was found unconscious – apparently suffered a hemiplegic migraine, possible seizure. Treated in the ER for a concussion and busted shoulder. Pushed ahead with treatment plan starting with topamax, plus clonazepam for acute episodes. Added VRT once I was able to tolerate it. Slowly improved over many months, but had a second hemiplegic migraine during surgery for injured shoulder. After 18 months, titrated off topamax without problem. Doc referred me for vision therapy before he left his practice and moved across the country.
It’s been four years since he left and I’ve been relatively stable – not great but not collapsing in public places either. Earlier this year my symptoms began to increase, which is terrifying. I’m now on a mission to find a new medical provider. So far I’ve been turned away by an ENT, a neurotologist and a neurologist who specializes in headaches. I think my history scares them. I have an appointment with another headache specialist (neurologist) in a couple of months – not sure what I’ll do if he blows me off too. I’m not looking for a cure, just a partner to guide and advise me. Fingers crossed.
There’s lots more history but too much to include here. I don’t want to discourage anyone – I really am so much better than when my symptoms were out of control. Just wanted to share my health profile as many of you so bravely have. Thanks for listening.