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. On the first morning we were there, I jumped into the deep-end of the family pool. 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 continued on 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 began 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 transdermal scopes. I was unsteady, frail. It took the whole summer to stabilize and I attended fall classes at UT. My focus was severely affected and my ability to read and comprehend as well as before the injury.

The debilitating symptoms settled down eventually, not perfectly, but enough for me 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 often.

In desperation, I followed the advice of an Otolaryngologist and had surgery, a sub-occipital vestibular nerve section (1997) 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 into my neck and 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 was now paralyzed on the right. Today, I’m still vestibular with a facial paralysis. No balance on the right, with balance affected on the left as well.

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. I was 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 I 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 continue to see an Otolaryngologist for annual checkups, hearing exams, and adjusting Betahistine. I’m now taking 16 mg daily as a preventative (2021).

It has been 31 years since the original injury. At the time, I thought I could not live like this; constant roaring tinnitus, not being able to hear in full stereo, being hyper-sensitive to sounds. Noise can trigger an attack (as well as visual movement, temperature and allergies); and I become helpless, unable to move, followed by constant vomiting, with a long recovery. This is my normal. I have had to accept it.

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