So, What’s the Main Problem?


My physician asked me that today as we tried to sort through the current batch of health related issues.

I said, Well, I think it’s the insomnia, but…that’s influenced by the anxiety, and the heart rate stuff probably adds to those…and since I’ve given up on anything to help the chronic pain, I do really need to sleep in order to deal with that….trailing off, I finally said, “I don’t know.”

I had gone to see him a month ago because I was waking up at night, at around 2:00 or 3:00 am, with my heart pounding, sweating, and unable to go back to sleep. As usual, I had researched this on the Ehlers Danlos Foundation message boards. The complicating factor of P.O.T.S.  made it all that much more interesting. Was it due to POTS? Or maybe perimenopause (I’m 44, after all)? What was causing which? Which was causing what? Furthermore, when I went to see him, my blood pressure was really high, and normally I have really low blood pressure. Really low, like 90/60. I was cooking along at 130/100 or something unnerving like that. My heart rate was also high, which happens to me often. I had experienced two migraines in the course of 3 months (most unwelcome, I would add), after an 8 year hiatus.

After some debate, he decided to try Amytriptilyne  to help me sleep, prevent migraines and possibly even help with the general anxiety. He advised I start with 50 mg and then go up to 100, then 150. On the plus side, it helped me fall asleep and I have been able to discontinue a 17 year affair with Benadryl, and cut back on my nighttime alcohol consumption. Downside, my heart rate remained too high. I have an app on my phone (“The shit you say!” “No, I say, it’s amazing!”) to track my pulse, which is consistently between 100 and 120. When I went up to 100 mg of it, my pulse went up to 147, so I dropped back to 50 immediately. At that time we talked beta blockers but he was concerned I’d drop to where I’d end up in the ER due to fainting and dizziness.

Today, when I went back, my BP was more like my normal; 102/65, and I’ve had a few dizzy spells. My heart was continuing to race along like the Kentucky Derby, and therein was the problem. Go off the Amitriptilyne, he said. Slowly. Take a Xanex at night, instead, and go see the Cardiologist. “FML!”, I said, “The cardiologist declared me uninteresting but slender and attractive last time.” Well, my PCP countered, he might find you more interesting this time. “But am I still attractive?” I asked, sarcastically. He declined to answer (I should note that my PCP is a friend and the husband of a dear friend, so I can get away with having a personality).

The cardiologist’s office is near my PCP’s office, so I walked my referral on over. This office smells like my Grama’s bathroom used to smell, and I am not saying that in a complimentary fashion. My previous experience involved waiting for over and hour just to be told of my slender figure and uninteresting heart. I approach with strong resistance and low expectations. They can see me on February 28th, and I already know that I’ll land with high blood pressure and heart rate simply due to my general attitude. He’ll probably label me an angry feminist and withdraw his affections. Maybe he’ll also have something of meaning to offer, I don’t know. I rather expect to be punished with a Holter Monitor, and possibly a tilt test. Or, given this guy’s general attitude, maybe he’ll scorn my fancy diagnosis from my fancy geneticist and tell me I am simply a hysterical woman.

I’ve never, ever heard that from a male physician before. 

Maybe *that’s* the main problem. Being dismissed due to gender and rarity of diagnosis.

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