Refractory Chronic Daily Migraines. Is there no hope??

So I’m one of the lucky few to have A) Chronic Daily migraines (for 18 years now) b) Refractory migraines C) Familial Hemiplegic migraines. I used to get migraines a couple times a year as a kid. Even in elementary school, looking back, I had Alice in Wonderland syndrome, though no actual migraine attack that followed. I thought everyone had unusual hallucinatory episodes like this from time to time. What did I know. I was 6.

Then at age 19 I got knocked out by a lady sledding down a hill on an inner tube. She hit me in the ankles coming around a blind bend, and according to those around me, I flew in the air, landed on my head and was knocked out. For a few seconds. Being a dumb college student I got up once the blurry vision, sunspots and dizziness passed and went on my way. Then I woke up in the middle of the night unable to move my neck with my head pounding. They put me in a neckbrace. That’s it.

Half a year later I woke up one morning with this awful pain in my head, feeling weak and sick. A few days later my boyfriend found me unable to speak having what looked like a one-sided seizure. I went to a headache specialist. He said I’d probably suffered a minor stroke (we now know this was a hemiplegic aura) and put me on Depakote for migraines. Nothing changed. I was pretty much in bed for 3 straight months. Since then I’ve gotten better at coping, have two kids and manage to have a relatively active work, though with my children being quite small I have found it impossible to work, care for them and deal with my headaches. However, the headaches have become worse over the years, with symptoms, sensitivity and triggers all increasing. Being a passenger in a car at night is usually a sure way to get a headache, which is why I wear dark sunglasses. If sunlight hits something at just the right angle and then reflects back into my eyes, that’s a certain aura to come. At Perfume, incense, various household cleaners, heavy aerobic activity, any alcohol at all (I haven’t had a drink in 7 years), the smell of gasoline, working on computers too long, the wrong kind of lighting, music with a heavy base, any change in weather, too much heat, too much cold etc. are all likely triggers. This hasn’t always been the case.

I have tried a million non traditional approached and been on more preventative medications than i can count. Methersergide worked for 8 months in 1997 then suddenly stopped one day, and Flexeril today gives me an occasional migraine-free day. Pain killer rarely work, and when they do, it’s only for an hour or two. Unless a migraine is at it’s highest level or hasn’t let up for days on end even for an hour, I can function without most people suspecting anything is wrong. My mom, my husband and my kids bring me a tremendous amount of joy. I love to read, to travel and to horsebackride. I love movies and modern dance. But everything I love has this ugly grey film on it, and that kills me. I wrote a poem a couple years ago “My constant companion” that sounded like a love poem. Towards the end the reader discovers the lover is not good for me. Not till the last word does one find out the constant companion is PAIN.

Any words of support, advice would be appreciated. I don’t feel sorry for myself often. I just want to be understood.

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