Living with Paroxsymal Hemicrania

When I was diagnosed with Paroxsymal Hemicrania, I thought, great, at least the medication works, and I can see properly and hey, the headaches have subsided. But living with it...that's something else. What's it like? Well, say, you're walking along having a great day, feeling good, when suddenly, BAM, you feel like someone just hit the side of your face with a bat. Sometimes it feels like someone is crushing my head between their hands. It hits fast, sudden, and hard. Sometimes I can feel it come on, but not often...I just suddenly have trouble talking. Not because it affects my throat, just that the pain is so piercing, I need to concentrate on calming it down.

From what I understand, there is no known cause and no known cure for Paroxsymal Hemicrania, just that it could suddenly go away altogether, or go into remission for up to 18 months. Oh Joy!!

I've discovered something about the medication I'm on. If I've had to take it early in the day, I can't even have a glass of beer 12 hours later. Not only does it make me dizzy, but it eats my stomach. I've also discovered that work makes the headaches worse, could be the stress. But walking the dog makes it a bit better. Sunlight and red neon hurt the most, even red exit signs can hurt. I hope I don't have to deal with this for the rest of my life.

What puts me off most, is that because it's rare, no doctors really think of it, so they give you all this medication for other stuff, as they 'practice' medicine.