Friday, November 20, 2015

Wearing the scarlet "A" (for anxiety)

My usually shapely calves look pillowy in this pic taken during my hospital stay. Note the blood pressure cuff left on my arm due to the constant heart rate monitoring.
I've had ADHD all my life. The H stands for hyperactivity, which is often accompanied by an anxious disposition. But having anxiety is not the same as suffering from an anxiety disorder. This propensity was probably what led my primary care physician to write anxiety disorder on my medical chart, after I began exhibiting high blood pressure whenever I saw him. When I tested my blood pressure at home, it was much lower, so I was diagnosed with white coat syndrome. That's when the label of anxiety disorder was added to my chart. I have to admit that I was the one who first suggested this diagnosis, since the only time I had ever had suffered from high blood pressure was when I experienced what was called a paradoxical reaction to a blood pressure medicine given to me because it can help control chronic migraines. Instead, I suddenly developed blood pressure so high that I could see the blood pulsing through the veins in my wrists. After I was taken of the meds, my BP returned to its usual level, slightly below normal.

But the problem with my self-diagnosis is that I didn't really feel all that nervous when I saw the doctor. My natural nervous energy does indeed increase my blood pressure readings somewhat, but I believe something else was going on.

This was in 2012, a time when I was beginning to show the symptoms of what would be eventually diagnosed as dermatomyositis. Indeed, the extensive rashes and muscle weakness I was suffering from were the very reason I had set up the first appointment. Unbeknownst to us, DM was in the process of attacking my muscles. The heart is a muscle.

But the damage was done. The label of anxiety disorder remained on my chart even after my DM was finally diagnosed. It rankled me every time I saw it in my after visit summary, but I never did anything about it. It was annoying, but seemed relatively harmless. That is, until I entered the hospital in February 2014, after coming down with a second bout of the (usually) rare Legionnaires' disease. Thanks, prednisone!

Beyond the Legionnaire's disease, which was fortunately caught before I slipped into another coma--been there, vegetated that--the ICU doctors were concerned about my soaring heart rate. Indeed, it was far higher than it had been when I had been mistakenly diagnosed with white coat syndrome. Tachycardia can be fatal, so the doctors were right to be worried. They tested me to see if it was positional tachycardia syndrome. In other words, if sitting up caused the problem. Nope. Their other tests could find no other cause.

And that's when one of the docs saw the words anxiety disorder in my chart. Aha!

He marched into my room, as Keith and I chatted, and abruptly told me that he was going to put me on an anti-anxiety medication.

I calmly told him that I didn't have an anxiety disorder.

"It's nothing to be embarrassed about," he said. "They're quite safe. Many people take these medications and find them very helpful for controlling their anxiety."

"But I don't have an anxiety disorder!" I insisted, my vehemence perhaps reinforcing his conclusion. "I have ADHD, which means I'm often hyper. Sometimes I do experience mild bouts of anxiety that pass quickly, like when I'm late for an appointment. That's a common symptom of ADHD. But having occasional bouts of anxiety, that don't affect my life in any real way, is not the same as having an anxiety disorder. No psychiatrist has every diagnosed me with an anxiety disorder." As I said this, I kicked myself for not doing anything about that galling diagnosis in my records.

"But we have to do something about your heart rate. It's too high; you're at risk for heart attack or stroke," he sputtered. Then he reiterated his previous comment.

Keith jumped in, "Could you please explain what qualifies you to make this diagnosis?"

"Her heart rate is dangerously high. We haven't been able to find a physical cause for her symptoms."

"And besides that?"

As Keith Socratically probed, it became evident that the doctor was simply assuming that I had to be suffering from anxiety. Suddenly, we realized why the doctors and other medical personnel kept telling me to relax. I was about as relaxed as possible for someone with a tube down her throat.

Round and round the conversation goes; where she stops, nobody knows. It didn't quite degenerate into shouting, but the atmosphere was charged enough to explain the hackles raised all around. Eventually, the doctor left, apparently miffed at how these two unreasonable people had reacted to his perfectly rational diagnosis. He struck us both as extremely arrogant.

But I will give him credit. Instead of pushing the point, he apparently went back and studied my charts more closely. And when he did, he noticed that I was on two very powerful blood pressure medications, at levels usually prescribed for heart failure patients. I had been taking those meds ever since I awoke from the coma, so I hadn't questioned them. He couldn't have known about my previous paradoxical effect experience because it happened when I was with a different medical group, so he came to this conclusion on his own. History had just repeated itself.

He began stepping down the meds while I was still in the hospital--discontinuing them immediately could've been dangerous. Instead, I was put on a regime that would eventually eliminate the meds entirely after I returned home. By the time the dose had been halved, the swelling in my legs apparent in the above photo had receded significantly. Suddenly, I found that my walking had improved by leaps and bound, without any actually leaping and bounding, of course. The pain and pressure my feet felt in shoes lessened, then finally disappeared completely. And finally, my blood pressure dropped. It's now back to slightly below normal. When I next saw my PCP, I asked him to remove the scarlet A from my records.

I'm now anxiety-free, or at least my records are.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.