Support groups in Wisconsin, help in the midwest?

[madprof455]

  First time I've posted here, any other CH board for that matter. Wrote four or five paragraphs before the following ones but after hitting preview lost them. The long and short of it: I'm a mid-fifties professor in Madison, CH sufferer since age 19, like so many others my life choices and direction have been shaped by it more than anything else. Non-smoker, non-drinker, no genetic predisposition even to migraine, just lucky. The pattern for many years was twice yearly, two to three months apiece, six to eight attacks daily, each lasting a little over an hour and a half if left untouched. Then an unwelcome break in the pattern, a twelve month bout in '93-'94, following which something as welcome as it was unexpected: ten CH free years.  I began to hope that the gods had decided I wasn't any fun anymore; but wherever they went they must have gotten bored by 2005, when a nasty six month bout kicked in. This was my first bout in the online era and I was amazed at how much had been learned in those ten years. Imitrex and the new oxygen masks were great, as was the news that real science was beginning to replace the field's long alternation between medieval dogmatism and dangerous and spurious fads. But the bout brought home that I'm getting too old (though otherwise in excellent health) for the meds they give you. The only thing that works, that has ever worked well, is Imitrex, but of course it can cover a small fraction  of the six or more attacks I typically get daily. Oxygen works, but I have to be tethered to it as it seems to postpone rather than knock out individual attacks. The overall life effects last time were pretty discouraging: I had to be relieved of my classes, the thing I really life for, and landed in the hospital for eight days, two in intensive care (infection disguised by prednisone, took me right to the edge). I was on the verge of complete despair when one bright day the proverbial angel appeared out of nowhere, waved her clusterbusters wand, and stopped the cycle cold. To this skeptical academic one experience is likely coincidence or magic; but with a second, today, I'm starting to see a trend.

    CH-free since early 2006, last Sunday, a week ago, the unmistakable shadows appeared. I contacted my primary care doctor's office first thing Monday, but this being Christmas week can't expect oxygen or the usual meds until next Monday. He's a great doc, have had him for years, trust him entirely, just bad timing. And even if it hadn't been this week, I'd be in for a long and isolated siege, really can't do this again.

     Unfortunately, I've never had a regular neurologist or pain clinic for reasons that will be familiar to many of you ( if you were wondering it happens even to late middle age professors with perfectly fine insurance). Do all the gatekeepers - receptionists and nurses -  take "cluster headache patient" as meaning "pestilential attention-demanding probable drug addict"? Believe me, I've tried everything, the only thing to show for it a few - a very few -apologies months too late to mean anything.

       Anyway, enough of that.  Got whacked and hard on Christmas eve day, Christmas itself I wouldn't be able to describe. After my last bout I dumped all meds as usual, but after a sleepless night a memory from God-knows-where told me to look into some camping equipment from the summer after. Found something really tiny, and now four years old; expected nothing, barely felt any effects, and for the last ten hours now have been completely pain free. Could this last?

    So just a stab in the dark, I don't even know what questions to ask.  Do CH sufferers even have support groups? How do people balance their own and others' privacy with the need to discuss things in the open? It was such a relief last time to see these online communities springing up, seems about time that I started to ask for help.

   I'd be most grateful for any advice.

[Brew]

Advice: stay off any conventional meds you might have (lithium, melatonin, imitrex, etc.), and follow up your post-camping experience again in 5-7 days, if you can locate more camping supplies. Seems to cement the first dose, according to the good folk around here. Any sooner will just be a waste of raw materials.

If you can't find any, go to any of a number of websites that sell rivea corymbosa seeds or Hawaiian baby woodrose seeds and follow the instructions on clusterbusters.org.

Good luck.

[madprof455]

Many thanks, Brew, will do. To add my anecdotal evidence to the pile, I had one more headache after that very small four year-old dose (ground up it would have been about a teaspoon). This is the second time I've tried the CB treatment, the first after a long bout and too full of the usual meds to distinguish signal from noise. This time, at the beginning of a bad bout, it stopped it, not even any shadows. After a lifetime with CH, and a generally skeptical mindset, there is little chance I misinterpreted the experience. It was definitely CH hitting hard, and nothing but dangerous quantities of prednisone, the effectiveness of which has always been temporary, has ever put an end to symptoms so quickly. Nor have I ever experienced a progression from shadows to full-blown attack that failed to be at least a month in duration. In a word, I'm amazed.

     A final question: are their any politicians or regulators open to making this treatment legal? I'd be happy to go on the record if there are any lobbying campaigns that show promise, just say the word. As a matter of principle I was most reluctant to try; there must be others who continue to suffer for this reason. Anything I can do, just let me know.

[Brew]

There is currently some frontier research being done on BOL, or 2-Bromo LSD. In layman's terms (the only ones I know), they have attached a bromine atom to the LSD molecule which renders it non-hallucinogenic. The good part (for us) is that it seems to have the same therapeutic effect on CH. A test with 4 subjects was conducted last year in Germany with VERY promising results, and another study is in the works at Harvard's McLean Hospital, hopefully as early as 2010. What's really exciting, in my opinion, is that a non-hallucinogenic treatment has a much better chance of flying though the FDA approval process.

You can find more about it on this site, but I'm not sure which threads. Try the search function. I was fortunate enough to hear Dr. Halpern talk about it at the CB conference in Chicago this past September.