My Vestibular Story

It was a hot late-May morning in Tucson, Arizona, 1990. I was visiting in the home of my future in-laws for the first time, with Mark. I jumped into the family pool’s deep end. When I re-surfaced a few seconds later, nothing was the same, and it never would be. There was a loud roar in my right ear, like a train. I couldn’t hear and my head “felt off.”

I wanted to make a good impression so I continued as well as I could, I got changed and went with Mark to a wildlife park. On the return drive, the roar in my head had gotten louder and I had to lay down in the back seat. During the night everything was spinning and i was vomiting. By morning I was in a hospital emergency room with no health insurance. After a week of anti-nausea and anti-vertigo treatment, I boarded a plane back to Austin, Texas. I could barely walk, it was like gliding, my feet unable to find the floor, drugged with transform scopes. I was unsteady, frail.

Symptoms settled down eventually, not perfectly, but enough to keep going. I continued to have the vestibular attacks; I was still deaf with the roaring tinnitus on the right side and a hyper-sensitivity to noise on both sides. Seven years later, after taking a full-time job at a museum art school, the vestibular attacks increased and I was sick more often.

In desperation, I followed the advice of an Otolaryngologist and had surgery, a sub-occipital vestibular nerve section. The vestibular nerve (cranial nerve VIII) was cut on the right to prevent damaged signals from getting to the brain. The surgery was not a success. I was worse; 5 days post-op my face, eye, tongue was paralyzed going down my neck into my right arm. Shingles in the form of Ramsay-Hunt Syndrome. Now the otolaryngologist and surgeon say that they are 98% sure the 1990 attack was viral. Six weeks after surgery, I began vestibular rehabilitation. This is where I met Bridgett Wallace, a PT working for Kendall Stewart, MD, Otolaryngologist, Austin. It was a long “recovery” and my face is now paralyzed on the right. I’m still vestibular with a monster face.

I applied for disability in 1999, but I was denied. Two years later I was diagnosed with endolymphatic hydrops in both ears, a condition causing too much fluid in the inner ear. A new otolaryngologist diagnosed me with bilateral Meniere’s disease in 2002. In 2003 I began a series of gentamicin injections in the right ear. This didn’t help, in fact I got worse from the medication.

I switched my focus to diet, acupuncture, Pilates-based physical therapy and general exercise. It helped. Today I am still prone to severe attacks, unable to move. I used valium under the tongue followed with Phenergan to help ward off the vomiting for many years. Now it just use Phenergan to stop the severe vomiting during an attack. I began taking Betahistine, daily, in August 2016, It helps prevent vestibular migraines. Still, an attack with its residue of vestibular symptoms can last from days to weeks. I no longer see an Otolaryngologist. I can get what I need from my primary care. Specialists have nothing to offer me that is not invasive.

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