Dec 17, 2008
Once upon a time, when I was 31, I had a stroke in my research lab. No, it wasn't a stroke, it was a hemiplegic migraine. No, wait, it was a Transient Ischemic Attack. It was related to taking birth control pills. No, that had nothing to do with it.
Are you confused yet? I was, because so were my doctors back in 1991. The only certainty was in the symptoms: it temporarily wiped out my left side, including my left field of vision and most sensation and coordination on my left side; it lasted about four hours, and the headache that followed was the worst of my life. The Primary Care Physician (PCP) sent me to an opthalmologist who found nothing wrong and sent me to a neurologist, Dr. B.
At the first visit, Dr. B. and I bonded over our alma maters and my education level (close to Ph.D. at the time). He praised me for immediately stopping the birth control pills and loaded me up with books about migraines, saying he believed in empowering patients. On the other hand, he persisted in saying that my left side was "weak" during the episode, while I kept insisting that it wasn't weak as much as numb and tingly and uncooperative. He wrote down that I had experienced weakness.
That was my first lesson in doctors not listening. So much for empowering patients. More on that later!
At the second visit, Dr. B. said The Pill had nothing to do with it, but he approved of the plan I'd drawn up to test for and avoid potential migraine triggers, and said to call immediately if it happened again because he wanted to test me during the event. This gave me the impression that he thought it was serious. But years later, Dr. B. dismissed the whole event as insignificant.
Well, I kept getting migraines after that (after a hiatus of 15 years), but never had another hemiplegic one, so a PCP wondered if that episode had actually been a Transient Ischemic Attack (TIA), or ministroke.
A few years later, I was pouring out a sample in the lab and my hand started shaking. The more careful I tried to be, the worse it shook. I recorded in my lab notes for that day in March 1993 that "I'd make a fine vortex mixer if I could control this." That day's samples were lost. Since a steady hand was needed for the dangerous acids and decanting procedures, I trained and closely supervised an undergraduate assistant to do those steps. I was too busy to bother going to a doctor about it. I figured I was so busy, it was just nerves (LOL). It went away after a while (a month?).
Between the fear of another sudden episode of hemiplegia in the lab, and the tremor, I quietly made plans to finish my degree and never do that kind of research again. My advisor still doesn't know that. I moved into community college teaching instead.
Flash forward to the year 2000. I'm turning 40 and am sick of having to pee every other minute. Not to mention wearing a diaper -- no, just a pad, but it felt like one -- and I figure it's all due to the Beauty of Natural Childbirth, twice. Urologist does a test that isn't supposed to hurt, but leaves me cramped up for hours, and recommends surgery, but I balk at what sounds hazardous to my favorite naughty bits.
Flash forward to 2003. Driving to work one morning, I start spinning behind the wheel. At least that's how it feels. I pull over, try to throw up, cry, foolishly drive home very slowly and call in sick. "Benign positional vertigo" it's called, though lying down helps (not usually the case with BPV), and after a few days I go back to work, report for my flu shot, and get sent home by the nurse for blood pressure so low she thinks the cuff must be malfunctioning at first. Also, the tremor is back.
Also, while teaching, I sometimes double over in pain from what feels like a lightning strike running up my right leg and one wall of my vagina. I try to cover it up by pretending to trip and catch myself on a desk.
Thus begins my search on the web: what could cause both vertigo and low blood pressure? Is the leg pain related? A symptom cruncher comes up with other symptoms to choose, and I add tremor, urinary frequency, and incontinence from the checklist.
Sudden shocked silence in my brain. Numb horror. I start clicking on patient stories and info from MS organizations, recognizing my peculiarities like the way I kinda drag one foot when I walk; the way that foot trips me. With every recognition another wave of horror washes over me. I am completely alone, knowing that my husband won't believe me. I tell nobody.