That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing.
— from Joan Didion’s essay, In Bed
Early this year I had a very bad migraine that lasted a very long time. It was triggered by withdrawal headaches from a medicine that was supposed to help my migraines. After about a week, it backed off enough that I could make it to the doctor. None of my medicines were working at all, and I was weak and exhausted. I just needed something that would let me eat and sleep. I called, but couldn’t get an appointment. The receptionist told me to come in anyway. (“It’s a big office with a lot of doctors. They can usually make some room in the schedule.”)
When I got to the doctors’ office, the receptionist told me that there were no available appointments and I couldn’t be seen. I was almost certain she’d been the one I spoke with before I made the incredible effort to get to the office, but she basically called me a liar when I told her what I thought she’d told me. I nearly cried.
Maybe she was right. I hadn’t slept properly or kept down a real meal in a week. I wasn’t at my sharpest. In front of several doctors and nurses shuffling charts, I begged to see a doctor. Instead of working me into the schedule or sending me to the ER next door, she wrote down an address for another clinic nearby.
I sat in the waiting room for 45 minutes, pulling myself together emotionally and physically, before tottering the few blocks to the other clinic. I thought the clinic looked a little funny, but was in no state of mind to be critical. They took me as a walkin and after an hour, a doctor was ready to see me. The doctor seemed more interested in my job than my illness, then started talking about an injection. I was woozy and in terrible pain again. I agreed to the injection without really understanding what was going on. He then gave me a shot in each hand in the webbing between my thumb and forefingers. It turned out to be a local anaesthetic.
While he lectured me on his theories about Western and Oriental medicine and the wonders of acupuncture, I vomited in his garbage can. He said he was surprised I didn’t feel better and showed me the door.
I staggered out, squinting into the painful sunlight, then dove into the next door McDonald’s where I vomited some more, struggling to hold myself up over the toilet bowl with my now numb hands. After a power nap on the stall floor, I ate a hamburger and went home.
My doctor wouldn’t see me and had lobbed me off to a crank. My head still hurt.
I got in bed and stayed there for three more days.
In retrospect, I should have called a friend or partner and had them handle the doctor logistics, or even gone to the ER. Having a migraine for a week doesn’t really make it easy to make good decisions. Quite frankly, it makes it difficult to make any decisions.
Eventually I felt better. At my next appointment, I told my doctor that quitting my preventative meds (on her instructions) gave me a migraine that lasted more than a week. I needed her to acknowledge that I’d had a horrible experience and tell me that she wanted me to get better, to offer me strategies and treatments in case of a repeat.
Instead she shrugged and said that wasn’t unexpected, then guided the discussion towards other preventative treatment options (which have since failed). She was trying to keep me a good patient, and I’m sure she’d seen people with worse problems that day. Migraines get a shrug after having to tell the student in the room next door that their HIV test came back positive. Doctors prioritize the emotional and medical care of patients with life threatening illnesses:
There seems to be a dichotomy: patients who are unable to control their emotions and who thus belong on the psychiatry floor, and every other patient.
Leeway is given when we drop a serious diagnosis on someone. We spend as much time as possible with a patient and his family–giving information, answering questions, and offering support. Then the patient lives with his illness while we move on to treat other ones. If we couldn’t move on, we would drown in the physical and emotional distress of our patients, becoming useless.
But it’s easy to get desensitized to the tearful patient next door with irritable bowel syndrome when I just got back from a family meeting for a patient with pancreatic cancer. There seems to be a quota to the compassion I dole out daily, and the 53-year-old with a prognosis of 12 months just won the majority of today’s dose. [link]
To some extent this prioritization is necessary, but not to the extent that it happens. People with chronic illnesses like migraine are often cheerfully reminded by our doctors that our illness isn’t life threatening. But they’re very wrong. Migraine may not kill you outright, but it can very quickly turn a life into something that doesn’t look very much like living. Our doctors should be very careful not to ignore that.
June is migraine and headache awareness month. Don’t be dismissive of people who suffer from migraine and remember that a bit of acknowledgement and care can go a long way.