CHfather

there doesn't seem to be much question that caffeine helps for most people. some just do a strong cup of coffee. so high in caffeine is important. the taurine seems to be a benefit, but i don't think that's been shown conclusively (and i don't know of anyone who uses just taurine and gets results). so i'd say high caffeine is most important, and if you can get high caffeine + high taurine, that might be best.

well, as someone said, you're probably still going to be getting attacks after one dose. you might have a miracle, some people do, but usually it takes several doses. if you do take zomig or imitrex, you'll be advised to wait five more days. you really can't do both. our hope is that with effective O2, maybe with energy drinks helping, and the verap (probably at no more than 480, and preferably less), you'll be able to stay the course. since tony is in a very different time zone, i'll just mention that the licorice root extract is something you can get in most health food/organic market-type stores (and, of course, over the internet). it's not something to be messed with (like psychedelics), so you need to read the file and the warnings, particularly related to blood pressure. but it has helped some folks very quickly. i don't think anyone has mentioned the vitamin d3 regimen, which has helped lots and lots of people and is generally very safe and inexpensive. when you get home, you should also read this file: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

great advice you've received from this great community. i'm just affirming it, really. [and i see that 3 more excellent posts got in while i was composing mine, so i'm even more redundant now] as jeebs said, many people have found that verapamil doesn't completely block busting (or maybe doesn't block it at all). how much are you taking? O2 is your best bet. after you've read that document that jeebs linked you to, let us know where you stand with O2 (do you have the right mask; are you using it properly; what flow rate do you have...?) while redbull is the right "generic" name for energy drinks, many people like the ones that are stronger--higher in caffeine and taurine. some Monster and RockStar brand drinks have a lot more caffeine than a redbull, and even some "energy shots" (the 3-ounce bottles) have more. i think jeebs likes 6-Hour Power for his attacks. red bull has about 80mg of caffeine (roughly a cup of coffee's worth)--you can see some comparisons at this page: http://www.caffeineinformer.com/caffeine-content/red-bull

It does feel brick-wallish regarding psychedelics--but we're not finished yet. We've made some progress--there is now agreement (it seems) to include "suicide headache." This is important to me because it conveys to other people how bad CH can be. A lot will depend on where and how that phrase is incorporated. Regarding psychedelics, what we seem to need is some textbook or other "secondary" publication (such as an article in a substantial journal summarizing treatments for CH) that recognizes psychedelics as a possible form of treatment. This is why Jeff and I are frustrated -- we can come up with the "primary" studies reported by Sewell, Halpern, Passie, and others, but as you might imagine there doesn't seem to be much in medical textbooks or big journal articles highlighting the use of psychedelics. I've thrown some things at them, as has Jeff, but they've been resisted. Purple has provided me with some good things . . . but not good enough. As Jeff says, Wikipedia's standards for medical entries are understandably tough, and we haven't been able to persuade the guardians of those standards that there's a case here for relaxing them just a bit, or that what we have meets those standards. If anyone has that kind of "secondary source," or what you think might be one, please PM me with it (and a link, if possible). If that fails, Jeff is right -- other ways than Wikipedia will have to be relied on to inform people that this option exists. (There might still be some mention of it in the Wikipedia piece, but that's not certain.)

David, have you looked into this? There must be a way to arrange for O2 overseas, no? I remember that when Tingeling came to the Chicago conference from Norway (Finland?), her supplier had O2 waiting for her. (Where is Ting, anyway? I sure miss her.) I've been wanting to say that my thanks go out so much to people who have been testing the GammaCore. To just tolerate attack after attack when you know you probably have the placebo device, as you did -- man, to me that's way above and beyond, Hall of Fame level commitment.

It must be very hard work being a Wiki administrator. I suppose they're often dealing with subject matter with which they're not completely familiar (surely not as familiar as the "interested parties" who show up with a point to make or an axe to grind), and they have high standards to uphold in terms of sourcing, and there are several of them working on this page, which must make them hesitant about stepping on each other's toes with edits. They have been quite generous about letting me put in my two cents here and there, and being responsive to that. I have offered to help with an edit of the whole page, but my offer hasn't been accepted (yet?). I'm interested in presenting CH accurately, not just for people with CH who might come to it, but also because I think many of the family and friends (and bosses, and co-workers) of people with CH might go there to find out more about what people with CH are going through. And I'm interested in being sure that psilo/LSD/LSA/BOL are at least minimally represented there so that people with CH learn about them (since they're probably not going to hear about them from their doctors). As long as I'm accepted there, I'll do my best to help make the page better and to try to achieve those two goals.

Thanks, David!!! This information is encouraging.

Denny, beat those pros like you've beaten so much else in your life! Nice playing -- sorry about that river beat. Aside from all the aches and the boredom and the bad beat, it sounds like a great experience. If you have any pics, how about sending one (you with your big stack?)?

As I've dealt with this Wikipedia thing, I've been reading -- skimming, really -- some of the early reports. One that Purple pointed me to -- the 2006 report by Sewell (RIP), Halpern, and Pope -- contains this: "22 (42%) of the 53 subjects reported partial or complete efficacy from subhallucinogenic doses of psilocybin or LSD."  We could (or could not) discuss what this means in terms of typical dosing recommendations today; my assumption is that as with seeds, the belief with psilo has become that it's wiser to take more so you're sure you've passed the threshold level for likely effectiveness. Makes sense to me. But clearly, from the study and KarenD's experience, sometimes less is enough (even for someone with chronic CH).

I am continuing the conversation at the "talk" page. Thanks! I think the fourth might be very helpful, if it is what I am understanding them to mean by a "secondary source." I didn't see anything about psychedelics in a quick scan of the first two articles you listed -- did I miss that?

Jeff, Should I take a shot (tomorrow) at some edits to the page that might be acceptable? If you want to do that, it's fine with me, or if you want to create a coordinated edit by the two of us (by PM), that's also fine. I'm not optimistic about getting far with this because we're in the same old situation -- no medical-standard proof that psychedelics work -- plus Wikipedia's further requirement that the proof should come from secondary sources, but like I say, I'm happy to try any way you want. Jerry

Thanks, Purp. I'm trying, on the talk page, but here's the significant part of the response I got: >>Second main issue to make sure that the Wikipedia article reflects how a medical condition is treated in the real world. For example, if 95% of doctors use drug A to treat cluster headache in reality, we should not talk excessively about drugs B-Z.<< I'm going to try one more edit, but it seems clear to me that we're not really going to get anywhere with these administrators.

To be clear, there is a brief reference to LSD/psilo (at least right now), as the last item under "Other." With these fanatical "editors" salivating at the chance to knock down whatever we add, maybe that's the best we'll be able to do. Do they really think we're just a bunch of druggies trying to get folks hooked?

Yes -- plus they took out the references to psilo and LSD. I'm going to make it a cause, as much as I can, to stay on top of this. (I also agree that the "suicide headache" terminology is not crucial, but it irritates me greatly that some folks have the power to take it out. I'm sure I can find that reference in the "medical literature" as well, but the point is that it's popularly referred to in that way.) I guess I'm going to see whether I can communicate with these editors directly.

I just put it back in. I grabbed a couple of citations off the internet (from Science Today and Fox News, to show that I am fair and balanced). Maybe I'll soon be joining you in "dirty sock" purgatory! Can't think of any better company.

Has Dr. Larry Schorr ever talked about this at a conference? Seems like a very good topic.

 Sure. It's the first item on this page (which is the results from searching [cluster headache] at docguide.com). There are some other things there that might also be interesting, such as the second item, about hypnic headache. I check here regularly to see what's new. (You might have to register, but it's free.) http://www.docguide.com/search/apachesolr_search/cluster+headache?hash=79f19e18&eid=36288&alrhash=31fc8c-8911591a98c20cef4b6879f9491a0f46 And here's a more direct link to the abstract (still might require registration): http://www.docguide.com/hypothalamic-dopaminergic-stimulation-cluster-headache?tsid=5

I don't know whether this is useful for those of you who ponder causation . . . >>cluster headache is associated with a functional abnormality of the hypothalamus and that this association is a primary (i.e. idiopathic) and not a secondary phenomenon during the bout<< Hypothalamic dopaminergic stimulation in cluster headache; Lepper A, Frese A, Summ O, Nofer J, Evers S; Cephalalgia 33 (14), 1155-1159 (Oct 2013) BACKGROUND Cluster headache is associated with structural abnormalities of the hypothalamus. We were interested in the association of cluster headache with endocrinological functional abnormalities. Therefore, we applied the apomorphine challenge test, which is a specific test of hypothalamic dopaminergic activation. METHODS We enrolled 13 patients with cluster headache outside the bout and without medication. They were stimulated with 0.005[ch8201]mg/kg of body weight subcutaneous apomorphine hydrochloride. After 45 and 60 minutes, growth hormone (GH), prolactin and cortisol were measured. The test was also applied to 14 sex- and age-matched healthy control subjects. RESULTS There were significantly higher GH levels in healthy subjects as compared to cluster headache patients 45 minutes after injection (10.8[ch8201]±[ch8201]10.8 versus 4.4[ch8201]±[ch8201]7.4[ch8201]ng/ml; P [ch8201]=[ch8201]0.038). Only in cluster headache, the GH level after 60 minutes was not significantly different from the baseline. The levels of prolactin and cortisol did not show any significant differences between cluster headache patients and in healthy subjects. DISCUSSION Our data suggest that cluster headache is associated with an impaired dopaminergic stimulation. This finding supports the body of evidence that cluster headache is associated with a functional abnormality of the hypothalamus and that this association is a primary (i.e. idiopathic) and not a secondary phenomenon during the bout.

My very best wishes, and perpetual gratitude, to everyone here.

Art, if you look under the MENU tab on the left side of the page, you'll see the CB oxygen page. Lots of info there. When you say >>which is connected to the bag by a plastic tube<< it confuses me, since you said you don't have a bag. Did you mean "connected to the mask by a plastic tube"?? That would also be confusing to me. Unless you have a demand valve system, where you press a button to breathe in, and there's no bag involved (unusual to get this, but considered a very good thing)--but that would also be confusing to me, because the masks on demand valve systems typically don't have those vent holes (though it could). The mask you want is called a non-rebreather mask. On that kind of mask, a bag fills with O2 that you then breathe in, and then it refills for your next inhalation. Higher flow rates allow the bag to fill faster, which make it easier to use deeper inhalation strategies. The mask spiny mentioned is the O2ptimask, a non-rebreather made especially for people with CH: www.clusterheadaches.com/khxc. Like I said above, if you somehow got a demand valve system, that would be good. Things you want to do with current mask: block up those air vents, so you're not getting room air with what you breathe in (unless they have effective disc-shaped thingies/gaskets in them that allow the air to flow out but not in), and maybe cut off the strap (or don't use it) and just hold the mask firmly to your face, in case you fall asleep while doing your O2.

Art, it's very nice to have someone who has done his homework! I hope we turn out to be helpful to you. Just three thoughts, really: (1) Many people find that if they stay on the O2 after their attack has dissipated (stay on maybe another 5-7 minutes or so, as a general rule), it seems to hold off subsequent hits; (2) Do you know about this method for extending Imitrex: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077? It seems that it's also possible to get Imitrex in vials and use your own syringes to get the (smaller) dosage you want; and (3) you probably know this already, but regarding traveling you can get O2 in cylinders you can easily transport in your car, and it's my understanding that some providers can help you arrange for O2 in new locations if you're traveling by plane. I'm sorry that I don't know specifically about the interaction of sumatriptan and licorice root. I guess maybe you need to consider Tony's perspective on the triptans in general (since you'd have to "detox" from them anyway if you decided to try busting).Â

Art, let's start here. It's legal to buy and possess spores in most states. It's legal to buy and possess rivea corymbosa seeds (from which one might make LSA) in all states (except maybe one or two). No crime there (and in general, suppliers won't ship to places where it's not legal). So, let's say you decided to try seeds. You can order them, and keep them as long as you want, completely legally. It takes about two hours, in the privacy of your own kitchen, to very simply prepare the LSA (grind seeds; add water) and then drink it. The point when you do that is the only time you are doing something unlawful. So one might ask oneself what the likelihood of being apprehended is. Seems like you'd practically have to invite a police officer to watch you do it. Part of the challenge there would be convincing the officer that it would be worth his or her time, since in general, cops and prosecutors have real crimes, with unsympathetic perpetrators, to deal with, which makes them pretty uninterested in people who are doing something for their own use, to deal with terrible pain. Am I encouraging you to do this? Of course not! For all I know, that might be some kind of crime. Just saying . . . Does this include oxygen? Used properly, it's a great abortive for a very, very large percentage of people with CH. And what about some of the non-pharm approaches that have helped a lot of folks: D3 regimen; licorice root; melatonin; energy drinks . . . kudzu, even? Is your CH episodic or chronic?

I'd like to find a way to explicitly mention ClusterBusters somewhere on this Wikipedia page, but I'm not sure how to do that. I thought of maybe adding CB and CH.com to the "See also" part at the end, or adding a new heading, like Information and Support, that would list CH, CH, OUCH . . . but then I got stuck about how to reference Facebook pages. Any ideas??????

I've added the 1745 reference.

 There's also this document (attached), which was printed brochure-style and handed out at the conference as an "official" ClusterBusters publication. It has a lot of footnotes (okay--endnotes) to support its statements. 20_Facts_brochure_8-24-13.pdf