Tuesday, February 19, 2013


In December I was diagnosed with Dysautonomia, which was what I suspected per my symptoms. It took two years of research online (and 48 years of strange, shifting symptoms) before I understood that I needed to find a Cardiologist with a tilt table familiar with this disease. The winter was harrowing. Symptoms are bad in winter. My vertigo and dizziness returned in fits and starts. The vertigo even has a new trick: it spins on 2 axes now instead of 1. The viral outbreaks that started last summer are now apparently on the inside of my body as well as the outside. My Cardiologist prescribed Valacyclovir for my allergic-type orthostatic intolerance symptoms, and for the outbreaks. So far it is helping with the viral symptoms, which became resistant to the anti-viral originally prescribed for it.

I have been having regular episodes late mornings with orthostatic intolerance symptoms, Pseudobulbar responses to the stress, and allergic-type reactions all at once. It is very distressful, sometimes with chest pain and numbness in my right arm and right side. Yesterday this chaos was preceded by an epiglottal episode that lasted for about 50 seconds, during which time I was getting some oxygen but not enough. I pounded my chest with my fist and tried not to pass out. I was trying not to cry because it made the reaction worse, but it was terrifying. This morning I also felt like passing out – this time from low blood pressure and pre-syncope. I keep thinking I am about to die. I was up much of the night, restless, with elevated heart rate, thinking bad thoughts.

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After a lot of distress during the day, I am finally feeling a lot calmer. It could have been the Valacyclovir causing the distress I had earlier today. I am thankful for any respite from symptoms, however brief. I have been trying to focus on just the present moment, one second at a time.