81 and counting….
I just spent about an hour trying to tell my migraine story here in this space. But I deleted it all in frustration. How do you condense eight decades of life into a few ‘grafs? Yes, my story is classic. Migraine ruled and ruined me in so many ways. And yet, I fought back, and think I still have had a pretty good life.
But a few things were different in my case. The classic disabling headaches with nausea and vomiting were my nemesis from childhood until I reached about age 40. Then the auras began. But the headache pain and the auras never occurred together. The doctors called the auras “aborted migraines”, assuring me they were “harmless.” Yeah, sure.
I’ve learned recently that my pattern of headache and aura separately are a recognized migraine type, but for a small percentage of sufferers.
Those flashing circles of bright geometric displays with the blind spots scared the heck out of me and while I felt no pain, I still had nausea, speaking was difficult, and I could not function normally for 30 minutes or longer. I usually felt very drowsy afterward. There was no advance warning of those visual attacks.
For another two or three decades, that pattern continued, with the headaches getting worse and the auras more frequent. I discovered that Prozac helped prevent and reduce severity of the headaches eventually, but the auras got worse. By the way, menopause was the worst time of all. Then, at about 75, the headaches finally faded away completely. The visual attacks were more frequent, however.
To cut to the present: At age 79, I had a stroke in the occipital lobe, the part of the brain that controls vision.
I had had a swarm of visual attacks over several weeks, and the blind spots that were part of the auras didn’t go away: they seemed permanent. I went to see a neurologist and told him my history of migraine and auras. He ordered brain tests and MRI, which revealed a recent stroke.
I was kept for days in the hospital, while cardiologists and other specialists ordered every test in the book and tried their best to blame my stroke on cardiovascular events—they failed utterly. I was sent home with no diagnosis as to cause and no treatment. The one doctor I trusted suggested a link to the migraine and auras, that the electrical swarm might have been accompanied by or caused a tiny blood vessel to break or a clot somehow to form, but he couldn’t be sure.
Two years later I am still undiagnosed as to cause for the stroke in the occipital lobe, but I KNOW in my own mind it all was a culmination of the many years of the glitch in my brain and endocrine system working that mischief we call migraine. I have told the doctors that I believe the stroke actually “fixed” something — like cutting a wire in an electrical system that puts out the lights. Yes, damage was done, and I lost a large part of my peripheral vision permanently. I’ve had no more strokes, though.
But by golly, I’ll take my limited vision any day over the migraine and the auras. I can’t drive, but I can read and paint (I’m an artist). I still have a milder form of aura occasionally, but I’m fine otherwise. No heart problems, either. I’m taking NO pharmaceutical drugs now for anything, and will not allow any doctor to “get me hooked” on preventive drugs unless it’s temporary treatment for real symptoms. My primary doctor is dubious (he’s a new one for me),but seems willing to listen to the theories of a stubborn old lady.
I pass on this experience because many of you out there might benefit from it. You know your own bodies. You know what makes you tick better than anyone. The medical world is just beginning to explore the human brain and how all the systems of our bodies work together with the brain. And we KNOW that genetics play a part in how and why our bodies do what they do. Please, I beg you — especially you younger ones — beware the pills and drugs, manage your OWN health, learn and listen to what your body tells you.
You’re lucky in a way: Doctors ARE getting the message, too. The treatments that help most are those that ease the stress, I think, like the triptans, and the non-addicting NSAIDs (they treat more than depression) that increase serotonin and bring better balance to the endocrine system. There are nutritional supplements that help, too, and caffeine, even. And that dark, quiet room with the ice pack with a bottle of Exedrin in your fist? The ER and a shot of valium? Those were my life-savers. Maybe those old aids that we relied on won’t be all there is now that the silence is broken.
Keep sharing….it does help. This website is a breath of fresh air, isn’t it?