“I never knew that having a migraine for more than 72 hours was dangerous. I just thought it was painful and miserable. No doctor had ever mentioned danger at all… they just prescribed things and sent me on my way.”
In the past ten months I haven’t really had a cold or gastrointestinal issues (for which I was treated two years ago) or even seasonal allergies. I have had pneumonia every year of my life until this year. Other than PCOS, and a history of IBS (which is only active when I have migraine issues, apparently) I’m perfectly healthy. Cholesterol is good. Iron levels are good. Spinal fluid came back with no issues. But something is wrong in my brain, and it took about six doctors to get to an answer… and a lot of tests and treatments and what felt like torture. It’s been proposed that lack of proper treatment and ignorance on the behalf of all those doctors led to what’s going on… that if my old neurologist had hospitalized me the first day he saw me and learned that I had had a migraine for four week… or that my old primary care doctor had done so weeks earlier… or that the emergency room I went to in July when I got the first migraine that was different than any other migraine I’d ever had had listened to me and used a DHE treatment on me… that I wouldn’t be going through what I am now because my brain wouldn’t have had a chance to get “stuck.”
But how could they know? Migraines are still this mysterious thing, and it took my headache specialist a few visits to realize that what I’m experiencing isn’t chronic migraines, but one single migraine that’s never ended… called Status Migrainosus. She had to Google the ICD-9 code because she has rarely treated the condition and everything she’s done has been an experiment. We literally sit together in the exam room at my appointments and she reads over studies that have been conducted on different migraine treatments. She will say things like, “this medication had a 23% success rate in a study conducted on 500 hundred migraine sufferers, that’s decent. Let’s do this.“
I’ve had migraines for the majority of my life, and in my early twenties they got bad and started lasting 4-5 days at a time. My neurologist then put me on Topamax and that “fixed” whatever was happening in my brain for a long time. I was weaned off of it years ago and I didn’t have severe migraines for a few years.
I never knew that having a migraine for more than 72 hours was dangerous. I just thought it was painful and miserable. No doctor had ever mentioned danger at all… they just prescribed things and sent me on my way.
Now I tell everyone I talk to who has migraines to go to the doctor if they last longer than a day or so, or to get to the ER for abortive treatments. I don’t want a single other person to go through what I’m going through. I don’t want another patient to be ignored by their doctors or overmedicated by their doctors. I think that my condition was preventable to a point, and then that opportunity passed.
Now it’s a matter of finding the right chemical combination to get my brain to stop signaling that there is something wrong. It feels like a shot in the dark every single time we try something new. And every single time I say, “This is the one that will work. I can feel it.”
My only hope at this point is that I don’t run out of hope.