Hi,
I apologize if this sounds like a ramble - I've been on topamax, but have decided to quit taking it. I can't stand it, it turns my brain to pudding.
I just discovered this site after decades of migraines and what I believe to be clusters. Only recently have I had a GP who'd even listen to me, but never the less, I'm starting to reach the end of my rope. I'm clearly not suffering as bad as many of you, but I'm just so worn down. He at least prescribed Fioricet and Imitrex, which for the most part, were god sends.
I'm 41 and have had migraines since I was 9. Back then, they were classic migraines w/o aura. They'd come and go in clusters - I'd go years w/o having them. But the symptoms were classic - vomiting, unilateral pain, photo and phonophobia. In my late 30s, they seemed to start evolving, presenting symptoms of both migraines AND clusters at times. I rarely have classic photo/phonophobia anymore, but the stomach symptoms still hit me on occasion when I have a daytime headache.
But sometimes I'll wake up around 2-3 in the morning with raging pain, and I know I'm screwed. No amount of Imitrex or Fioricet works and I physically can't stand to lie down. It turns into a 4-5 hour long festival of pacing, vomiting, watering eyes, runny nose, ice pick to my eye, back of the head, throbbing, just on the edge of screaming and generally wishing I could knock myself unconscious. Symptoms of both migraine AND clusters.
The last bout I had like that prompted me to *finally* schedule an appointment with a migraine specialist/neurologist. I went in with high hopes, expecting to explain my symptoms, work through a course of treatment, but no, that didn't happen. He flatly told me there's no such thing as a mixture of cluster and migraine symptoms and sent me on my way with a prescription for Topamax. The final straw was when I asked, "Does Topamax have any cognitive effects?", he flatly said, "No".
I've tried the Topamax for about a week, but I simply can't stand it. I'm only at 25mg, 2x a day and I feel like a bloody moron. I'm an engineer by trade and there's no way I can "wait a month to push through the symptoms" - I'm a zombie all day at work, fading in and out, having a hard time even reading at times. The only reason I'm able to write this is because I haven't taken my evening dose and I'm not going to. Needless to say, that neurologist is an ass in my book who is now fired.
Luckily, the full on cluster (like) headaches aren't super common, but it seems like I'm always right on the edge of a migraine at this point. But I'm in constant fear of another headache like that last night-time hell. I had moderate success experimenting with racetams in the past (reducing trigger sensitivity just a bit). Reading a recent article about clusters and 2-bromo-LSD tripped a long lost memory - when I was in my 20s, I experimented with extracting LSA from Morning Glories for recreational purposes. It occurred to me that I had few or no migraines back then. Further research lead me here.
I've reached the point where the pain is just such an unending grind, that cultivating or obtaining aforementioned substances is sounding like a good idea again. I can't believe it.
Thanks...