CHfather

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

very sorry to read this, bundy. CH is tough enough without adding heartache to it. can i ask how you're treating your CH now? maybe someone here will have some ideas that you haven't tried yet.

Thanks to your inspiration, Jeff, I made a small edit (adding a link to Dan's part of the Nat Geo special), and I'll also try to stay on top of this. Thanks, Tony, for pointing this out.

Four 'cudas! THANKS!!!

In another thread,  During her last cycle, it seemed like melatonin was also a trigger for my daughter (not an issue when she's out of cycle). I'm wondering -- since we often recommend melatonin as a possible preventive -- whether anyone else has the sense that melatonin is or might be a trigger for them?

The website (Medscape) serves a whole lot of doctors and other medical professionals. This link is to a special year-end report on psychedelics: http://www.medscape.com/viewcollection/32994   You have to register, but it's free. At the home page, there's also a report of FDA approval for a device to treat certain kinds of migraine pain. I would imagine that it might work with CH, too.

Love it. Kinda like these guys?? :) :) :)

Nice!

Bryce, Following up on what Jeebs said . . . lots of people have eating problems during their cluster periods (I think that's what you probably mean -- when he's in a CH cycle, as opposed to when he's experiencing a single attack or "episode"). It's a function of the stress and distress, along with other things.  So it would be good if he could be managing the pain better in some way. Busting, which Jeebs pointed you to, is one very good way to end a cycle -- the best way, many of us would say. But, does your dad have the basics -- oxygen plus maybe some other kind of abortive (Imitrex) or preventive (Verapamil, for example)? Is he trying any of the other abortive/preventive strategies that help many people, such as the vitamin D3 regimen, or licorice root, or melatonin, or kudzu??? In the meantime, if his diet is really crummy, he should probably be taking some kind of serious supplement, like Ensure, to get the stuff he needs into his system. If you -- or, even better, he -- will tell us more about how he's treating his CH, we might be able to deal with the pain and stress that are probably causing at least some of his in-cycle eating issues. (Coming on here and talking to folks who understand what he's going through can be pretty good for stress in itself.)

Thanks, Bill! These lists are very helpful.

Speaking of BOL, I feeling depressed because of what I thought I heard Dr. Halpern say at the conference about Entheogen. What I thought I heard him saying was that if Entheogen didn't enlist some big-money support by the end of this year, the patent for BOL would revert back to the universities from which Entheogen was licensing the patent (and he was pessimistic about how quickly the university patent-holders would act to develop BOL). I might have heard that wrong, and I welcome any information that anyone has about the current status of BOL.

I have no doubt at all that you will be.