Posted by Patrick McGrath (18.104.22.168) on January 14, 2000 at 22:53:32:
I have just come upon this Web site and I hope to look it over more closely in the future. I am in the middle of one of my "seasons" -- I am an episodic sufferer -- and it's good that I'm not alone in this struggle.
I hate to rock the boat my first time here, but I wanted to share my particular experience with everyone. For some years, I have been prescribed the prescription pain-killer Butalbitol to relieve my cluster headaches. It works for me -- but only if I can ingest some of the medication in time. If not, or if an attack occurs in the middle of the night, then I'm somewhere in between Levels 8 to 10 of Kip's scale for two or three hours.
Fourtunately, after 20 or so years of these attacks, I know the signals about when the attack is coming. It just feels "funny" -- "the tingles" is what I call them. I've been noticing this season that the locus of the pain -- for me it is on the left side, well above the eye, right at the hair-parting -- seems to get quite warm just before an attack starts.
Whatever the situation, it is critical to get the Butalbitol in me ASAP. At home or at work it is not a problem, and I have a pill case and a water bottle with me when I commute. I have managed once, during my current season, to take the Butalbitol while driving at full speed down the Palisades Interstate Parkway. It took a little concentration but I managed it.
The key part is -- if I take the Butalbitol in time, the attack gets knocked out completely. The pain machine completely fails to engage. I have even felt the sensation, if I may so describe it, of "the devil" being locked in a cage, raging to get out, but suppressed by the Butalbitol.
I looked with interest at the varying treatments on your list, but I was surprised to see nothing like Butalbitol on it. But, of course, what works for me may not work for others.
I have had one or two night attacks during this season, and of course, if you're asleep, you can't detect "the tingles." One way that seems to work is to take a double ration of Butalbitol just before sleep. There may be another, but I have not tried this yet pending consultation with my current doctor.
You see, there are two varieties of Bultalbitol; one is combined with caffeine and the other is combined with codeine. I have only been taking the caffeine variety. I suspect that the codeine variation may be useful against the midnight attacks -- however, I have not started this yet because I have not discussed this with my doctor first.
At any rate, Butalbitol works for me, and I just wanted to suggest it to my fellow CH sufferers in hope that it may also work for them. It's also extremely cheap -- about $10.00 for 30 tablets (I forget the milligramage!), and with my pharmacy plan it gets knocked down to less than $4.00.
Your fellow sufferer,
Stony Point, NY
P.S. For those interested, I have placed a URL to my other interest, an idea I have called The Campaign for Responsible Government. It has nothing to do with CH, but it may give you something to talk about other than headaches.
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