CHfather

Echo, when you read that oxygen page under the MENU tab, you'll see a lot of things that will probably help you (such as blocking the empty holes on your mask so you're breathing in only straight oxygen with no room air mixed in, and using an effective breathing strategy). There's also a link there to a website in Europe that sells the O2ptimask. One thing that's not mentioned there that helps some people is to look down toward your feet as you breathe. A well-known CH doctor here recommends that to all his patients. Also, taking a deep inhale and then holding the air in your lungs for a few moments before forcefully exhaling it is highly recommended. The flow rate you want to use is one that allows the bag on your mask (if you have one, as Denny notes -- you should have one, or you don't have a proper non-rebreather mask) to always be full and ready for your next inhale. That might be 25, or it might be less, depending of what breathing strategy works best for you. It's great that you have a 25 lpm regulator -- most people here have to buy their own. You are in a perfect location (the Netherlands) to try busting with psilocybin. Many people there have used "truffles" with excellent success. And you could keep taking the verapamil if you want to, and maybe even the lithium, though that might make the psychedelic effects of the truffles considerably stronger. If you're going to stick with conventional medications, I wonder why your doctor hasn't prescribed injectable sumatriptan (Imitrex, in the US) to abort attacks, particularly when the O2 wasn't working (which we hope will change now). But I try not to spend too much time wondering why doctors do what they do.

I suspect it depends on what you're comparing it to. They probably know more at MC than your typical crappy neurologist knows, and might explore more thoroughly than that typical crappy neurologist.  I'd bet a lot that they don't know more than a Dr. Goadsby, or a Dr. Kudrow, or that Cleveland Clinic doc that some people like. Guaran-darn-teed they don't know more, or care more, than Dr. Brian McGeeney. You can check out the MC website and see what they're talking about -- http://www.mayoclinic.org/diseases-conditions/cluster-headache/basics/treatment/con-20031706. I don't see anything new there (except one thing, octreotide, that's not new (studies in 2004) but was new to me (it doesn't seem very special). Maybe they keep their miracle cures secret. Not saying you wouldn't get good treatment there. I just seriously doubt that there's a breakthrough waiting. If there is, please let us know.

RC seeds help stop or prevent cycles for a lot of people. You can buy them from www.tranceplants.net, which is a Canadian company. The preparation is to grind them and then soak them in water. When you get closer to doing that, check back for details. To be clear again, preparing and drinking them is against the law. A typical dose is around 60 seeds. People do preventive dosing at different intervals -- some every month, some less often, some just when they feel the first signs of a cycle coming on. When you're in cycle (and, yes, many people do go into cycle even though they've been doing preventive dosing), you might need several doses to treat your CH. Most people don't like to keep them too long because they're no longer fully fresh after a few months.

Rob, the initial layout for the D3 stuff is not small ($50???), but the cost on a daily basis is maybe a dollar or two. Consider licorice root, too: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 An energy drink (Red Bull, Monster, etc.) that you drink as soon as you feel an attack coming on can sometimes abort an attack, or at least make it less severe. How much melatonin are you taking? Some people here get up to 18 mg. or more at bedtime. If you are interested in busting, you can do it with seeds (rivea corymbosa seeds, or RC) that you can buy legally (it's illegal to convert them into the substance used for busting, but it's very very easy to do so) and don't cost very much. But . . . am I right in gathering that you're not currently in cycle? I'd encourage you to stop worrying about becoming chronic, get your whole arsenal ready to treat your next cycle, and work on prevention (the licorice root, energy drinks, and melatonin are more things that people do when they're in cycle). D3 has been a good preventive for many people, and so has verapamil, and so has preventive busting while out of cycle. Nothing seems to be a miracle treatment, and certainly nothing is a cure, but if you keep trying you're going to make it a lot less hard on yourself. I'd also encourage you to read the CB oxygen file that's under the "MENU" tab on the left side of the page and make sure your oxygen system is working as well as it should.

Hey Rob, just to answer your questions, a recent big study showed that CH switches sides in about 30% of people with CH, and it seems people's cycles often get longer over the years . . . doesn't mean you're becoming chronic. How are you treating your CH? You have oxygen? Tried the D3 regimen? (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804) Licorice root? Busting?? Energy drinks? Melatonin? It would great if you could find a way to make it to the 2014 conference, where you'd meet lots of great people who have CH. Here's a photo from the 2013 conference: Â

At a previous thread, Bob (alleyoop) wrote: >>do not let them deaden you with Xylocaine with EPI (epinepherine) . . . request prilocaine or anything without EPI.<<<

Moxie (and didg), when my daughter had a tooth removed about ten years ago it triggered her first really bad cluster cycle. She had had CH attacks before, but they were tolerable; this is the one that sent her to doctors looking for answers (took five years to get a correct diagnosis, of course). I don't know what numbing agent was used, but it probably was epi. So at least in her case, it had enduring effects even after the epi wore off (if it was the epi; could of course be who knows what else . . . some pressure that the dentist applied while removing the tooth; the extraction itself . . .).

Practically the same story for me. But I haven't taken it to the ethical place you have, Jeebs, regarding vegetarianism. So for me, it's more like no more in-person killing of animals.

I was sure I had modified my post to give credit to Ricardo when I noticed later that he had actually posted this same article some time ago. And, as I said in that modification that disappeared, I figured the article was good enough to post again for anyone who had who missed it back then. So I'm glad you saw it, Art.

I'm sorry to say that I have failed at Wikipedia with regard to inclusion of hallucinogens as a treatment. By their standards, there just isn't enough medically-verified evidence to include it. I threw everything I could think of into the pot, but it wasn't enough. As one of the editors wrote to me, >>The fact that there is to date one study on psilosybin (and it's not even a controlled study, it was interviews) is not going to change no matter how many secondary sources we can dig up that talk about that one study.<< Given that Wikipedia has a strict policy about what it will use, I had nothing to come back with except, ultimately, a plea that mentioning these substances could help people. I think I was/we were given a fair hearing. I don't think the page has actually been changed yet, and there still seems to be some possibility that maybe there will be mention of psilo/LSD under a different heading, such as "Research" . . . I guess we'll see about that. I'm sorry that I couldn't do better. If anyone wants to read the exchanges there, they are at https://en.wikipedia.org/wiki/Talk:Cluster_headache, mostly in the "Back to Psilo" section, though some spills over into other sections.

2013 article by Dr. Brian McGeeney (hmmm, why is that name familiar? [smiley=huh.gif]). http://www.medscape.com/viewarticle/781651_1 Thank you, doc, thank you thank you.

Jeff, Heart disease also low, especially considering the percentage of smokers. Rozen theorized some possible "protective effect" of CH, but trying to figure out what that might be wasn't really part of what he was doing.

In Rozen's large 2011 study of CH, he apparently asked people about other conditions. I'm not sure how this question was asked -- open-ended, I assume, but maybe it was focused on some particular things. FWIW, here's what came from that: A personal history of depression occurred in 24% of the survey responders, while 14% had a history of sleep apnea, 11% restless leg syndrome, and 9% asthma. Interestingly, a very low percentage had known cardiovascular disease (myocardial infarction 1%, bypass surgery 0.3%, and coronary stent placement 1%). Strokes were rare occurring in only 0.2%.A diagnosis of emphysema or chronic obstructive pulmonary disease (COPD) was noted in only 2%, while lung cancer occurred in only 3 patients or 0.3%. Peptic or duodenal ulcer disease was noted in only 5%, while diabetes occurred in 3%. Epilepsy was noted in only 1%.A personal history of migraine and other headaches was not obtained. http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCwQFjAA&url=http%3A%2F%2Fwww.ouch-us.org%2Fchgeneral%2FCluster_Headache_in_USA.pdf&ei=6-vOUujBHsbP2wXVlIEo&usg=AFQjCNE-e4t9U7Gt6P4D8iuKFBJW39KbAA&sig2=LltYRxfRDA23lMNIdlf_uw&bvm=bv.59026428,d.b2I

David, here are a couple of places that say they make oxygen available, in tanks, worldwide. I don't know anyone who's ever used a service like this, so if you learn anything, I'd love to hear about it. http://www.travelo2.com/OXYGEN_LIQUID.htm http://www.oxygenworldwide.com/ Also, Linde has a service called Oxytravel, which says it can arrange O2 worldwide. I have a hard time navigating their website, but it gives this number to call (from the US): 866-216-5120 (http://www.linde-healthcare.us/en/home.html)      I'm thrilled that the GammaCore is working so well. Do you get to keep it?

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