Welcome to the board Brett. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There is so much available now to deal with the attacks, sitting in ahot shower for 40 minutes is 1970's old school. (I can say that cuz I'm your age and in the 70's it was lidocaine up the nose, oral cafergot, and 90 minute dances with the beast!!!
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Like you, I’ve had CH for most of my life, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:
1: A good prevent med. That's your topomax, considered the second line approach as verapamil is the typical first line prevent med. Many who use topomax refer to it as "Dopey-max" as it has a common side affect of making you a little loopy!
I use lithium, it blocks 60-70% of my attack. Some have to combine lithium and verapamil together to get relief.
2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.
3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work
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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.
Go to the medications section of this board and read the post "
123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.
For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.
Your weekend visitor experience is a common one, called the "let down" attack. Many find if they stay "jacked up" the beast doesn't visit, but as soon as they relax, WAM! I'm just the opposite, sustained periods of intense stress will actually bring on an attack when I'm in cycle. The screwy nature of the beast.
Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.
clusterbusters.com
Read everything you can on this board, for a CH’er, knowledge is your best ally. We’ll help you all we can.
Joe
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