CHfather

Since you asked, I'll just babble a bit off the top of my head. I suspect there's a better--if more difficult--way to go than a lawsuit against the Schedule I status of psilo (and LSD) (though a lawsuit might not hurt as part of an overall strategy, if you could figure out who to sue). Since there's no actual chance at all that psilo would be de-scheduled and made freely legally available (or even moved off Schedule I, in my opinion), I think the real question is, What's the best way to make it legally available to people with CH? Note that marijuana is also a Schedule I substance, but something like 15 states and the District of Columbia now have laws allowing people to have marijuana for medical use (with a doctor's prescription). So the scheduling, it seems, doesn't actually prohibit use under controlled circumstances, even though that's what Schedule II (methadone, codeine, etc.) is presumably for. So, theoretically, you could try to create a movement not to change the scheduling (since the scheduling isn't the actual barrier), but to add psilocybin/LSD to cannabis as something that could be grown and distributed in a controlled way to people for whom it would be beneficial, or to create a cannabis-like initiative for psilo/LSD in a state that doesn't have one. (California's marijuana initiative was called, as I remember it, the "Compassionate Use Act," which I thought was great PR.) I guess the big issues right now would be, in technical terms, whether the use of psilo/LSD for CH can be said to be "medically accepted," and I think the answer to that is no; and whether the general public's attitude toward "magic mushrooms" and "acid" is in any way comparable to its attitude toward marijuana -- also no, I think. But I'm sure marijuana faced the same issues in becoming legalized, although it was helped by the fact that so many people had used it and found it basically innocuous and quittable, and they didn't see the value in law-enforcement costs of trying to stop people from using it recreationally. So I don't think such a legislative initiative would be successful, but I think it could draw constructive attention. Turns out that psilo may also be an effective drug for easing the anxiety of terminal cancer patients and helping them cope with their diagnoses, and ecstasy is very effective for treating PTSD (http://www.scientificamerican.com/article.cfm?id=mdma-drug-ptsd-trauma-psychedelic). These observations were discussed during a conference last year called "Psychedelic Science in the 21st Century" that drew 1100 people and was reported, as you can see from the link, in places that included Scientific American. With this kind of activity, and the NatGeo special, and what I presume will be Bob Wold's subsequent appearances on Oprah and The Daily Show and O'Reilly, awareness of the cruelty of depriving people of lawful access to substances that can help CH and other conditions will grow. I don't think any kind of "legalize psilocybin/LSD" movement -- or anything that can be characterized in that way by the vast Know-Nothing population of our country -- has even the slightest chance of being successful. But an argument for "compassionate use" of those substances . . . maybe, some day (hopefully, BOL will be available long before that day). At that conference I mentioned, the head of MAPS said, "This isn't the '60s. We've learned the lessons of that era, and now we're trying to integrate ourselves into science, into medicine, into society." That's another important thing, I think -- not to get associated with the so-called "crazies" who just want another way to get high. (That latter point was basically the US Supreme Court's basis for ruling against the right of individuals in California to grow their own marijuana for medical use, whatever the legal reasoning they used to get there.) I don't know . . . maybe this general topic, which I'd call "What can we do?" (with an emphasis on the we), might be suitable for the upcoming Clusterbusters Conference(??) Directly to Bryan's point, there was definitely a time when I thought being a "legal martyr" was a heck of a good idea. The more I thought about it, the more I considered what I'm saying here, which is that I think the word is already getting out, and what we can do best is to amplify it. Well, you asked!  Â

I've been trying to put together a summary of Les Genser's recommendations regarding licorice root. The other day I took a very preliminary draft and pasted it into a message, just so I could see how the formatting carried over to this board from Word, where I was creating it. I just noticed today that somehow I accidentally posted it, with the subject line "aggah," in the Clusterbuster files. I have now deleted it, and I apologize to anyone who read it or tried to read it in that form. Also, I had contacted Les and asked for his permission to try to create a summary, and I promised I'd show it to him before posting anything. So, I also apologize to him for my error.  :-/ :-/

:Â Same here, Jeff.Â

Barbara, these sites are listed at the Clusterbusters links page: http://www.ethnobotanicals.com http://www.iamshaman.com www.psychoactiveherbs.com www.shamansgarden.com I have ordered from the first and second, with good success.

Laura Ann, you just have to keep after the insurance people (is there someone who could help you with that -- it's just so hard fighting these battles yourself while you're suffering). I might have already said this to you, but I would immediately send them these two articles (fax; send the links; whatever). They're from top journals. The first one proves that high-flow O2 is an essential CH treatment; the second shows how often O2 is not provided or provided wrong. They both make it clear that a lot of suffering results from wrong O2 prescriptions. “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE If you want to be more of a nuisance about this, you could google a phrase like [high flow oxygen for cluster headache] and just send them a reputable article (WebMD; ScienceDaily; etc.) every hour or so. A concentrator is definitely next-to-useless, if not completely useless. It can't get to a high-enough flow (the regulator is internal); it's not pure O2; it's noisy and bulky. Could you (or someone on your behalf) also go back to your doctor and try to have him/her intervene?

Gosh, I'm telling you guys, you should read the new Clusterbusters links page (http://clusterbusters.com/links1.htm)! This site is right there, under "Websites of Clusterbuster Members." (Kidding, mostly, of course -- there are a lot of things at the links page, so you might not even have noticed this one. But it is there!)

Sorry to waste the time of anyone who clicks on this. I was just re-reading les genser's licorice root thread and noticed there that proloslam says s/he also becomes PF when s/he has flu/ fever. I'm adding this note here, sort of to myself, because some day these data might matter.

Nice, indeed. I realize that the ClusterBuster links page contains a lot of information, but it's organized quite straightforwardly so it's easy to use, and it includes info about oxygen, which I think every newbie also needs. It's kind of hidden away, to say the least: http://www.clusterbusters.com/links1.htm (If I may, I would suggest adding a link to the CH.com oxygen page to your post, Denny.)

Alleyoop, you've been here for me since day one, too. Just seeing your name on a post brings back good memories of how it felt to finally arrive here. Hope you day is great. Jerry

Stevil, here are two things you might print out to bring with you to the doc regarding your O2 prescription. Both are from prestigious journals (Journal of the American Medical Association and Headache), and both show that high-flow O2 with a non-rebreather mask is proper treatment for CH. “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE The JAMA study talks about 12 liters per minute flow, but as you have probably read here, most want at least 15 lpm, and many are using considerably higher flows. As you may also have read here, the most important thing is to get a prescription for the tanks, because once you have the tanks, you can get the rest on a do-it-yourself basis if you have to.

Just in the interest of continuing to build the knowledge base here, I'll mention that my daughter also was on nothing she needed to detox from, and in fact had never used any of the meds requiring detox, and seeds worked great for her, also. I think I read somewhere a speculation that busting might be hampered (though not prevented) by ever having used those meds, so, as I say, I'm adding this to the knowledge base.

Stevil, there are only two good things about this horrible story--but they are very good. The first, and most important, is that you are going to be a whole lot better very soon, if only because of the O2. Then we will share tears of joy with you instead of shedding tears over what you are going through. The second is just a feeling that I have, that somehow your story is going to help thousands or even tens of thousands of other people with cluster headaches get proper treatment. I believe from your passion and your skill as a writer that when you are ready you can tell a story that will get the attention of at least the military medical system. As the folks before me have said, get your O2 set up. Ask questions about that if you have any, and ask about anything else. You'll get answers. We are with you.

Carol, I'll be very interested in further reports from you. My daughter's headache pain greatly intensified immediately after a very difficult tooth removal in 2004, and the removal of her wisdom teeth in 1999, also difficult, was very near to the initial onset of her CH symptoms. We looked into NICO a bit and found it was quite controversial, which discouraged us from following up . . . but I have always wondered about the close correlation between her CH and that dental work. Jerry

I do find Dr. Andrew Sewell's blog a good place to keep up with some recent CH developments. Most recently, there's a report about a trial that failed because the CH "subjects" couldn't keep to the protocols ("Frovia flames out"), and also another one about how chronic CH seems to have an episodic quality to it ("Do chronic patients cycle?"). There's also an interesting discussion (under Categories/Animal studies/"Akerman Wins a Prize for This One") about trying to figure out why oxygen works, and about why it's so hard to find CH treatments (in part because rats don't get CH). http://www.clusterattack.com/blog/home/

Okay . . . I thought I had reposted this reply here, from where Frustrated had originally posted, in the ClusterBuster files . . . but now I don't see it. I'm just posting it to possibly avoid redundancy. So sorry for what you're going through, Frustrated. I would strongly suggest that you move this post (re-post it) to the General Board, where more people are likely see it. Here in the ClusterBuster files section there are excellent introductions to the use of LSA seeds: for example, in the file titled "LSA" (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974) and in the one titled "Dosing Methods." I'd say that of the seeds, most people find RC (rivea corymbosa) the easiest to work with. Once you've posted at the General Board, you will get lots of question/suggestions to make sure you are using your oxygen as effectively as possible, and once you've read the LSA information, you can start asking more specific questions. People are here for you. It's going to get better.

Since we had reports of a couple of instances of flu/fever seeming to knock out CH for a while, and since my daughter was one of those instances (during a time when she was taking nothing abortive or preventive for her HAs), I took the liberty of writing to a med school prof who's a CH activist to find out if he knew anything about that connection. One of those "You never know, but let's not just drop it" kinds of things. Below is his generously quick reply to me. Nothing to get excited about by any means -- just thought I'd share it. >>>>No, that's odd. There are plenty of reports of cluster headache being triggered by viral infections, but I haven't heard of cluster attacks being suppressed by them! Flu symptoms are caused by cytokines and prostaglandins secreted by the immune system in response to infection. I will keep my eye out for any research suggesting a connection. Often patients notice these things before doctors do.<<<<

Thank you, Bob -- great work! Next step, to get it shown in every med school in the world. Jerry

For your call tomorrow: We found that bringing these two articles to my daughter's neuro helped her get the right prescription, since they're from respected journals and they're clear about the need for high-flow, non-rebreather delivery: "High-Flow Oxygen for Treatment of Cluster Headache" Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full "Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey" http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

E'mon, you've probably read enough here to know that you want to get started on an oxygen setup right away. Have you reviewed the "oxygen page" from the black-and-white "menu" tab on the left side of the page? Not knowing what you might already know, I'll just give the usual advice -- read and ASK QUESTIONS. It's not just the stories here that are inspiring, it's the amazing people telling them, too. There's good information at the links page, too: http://www.clusterbusters.com/ (click on "other links"); and in the "clusterbuster files" you can access from the "forum jump" menu at the bottom right of the page. You might want to order an Optimask right away. I always give the caveat that I am not a CH sufferer myself -- my daughter is. But I will say that we found HBWR seeds tough to work with, and RC (rivea corymbosa) much easier and, in my daughter's case (and many others), quite effective. I suspect you won't have to worry about any work-interrupting psychedelic effects from seeds, but I suppose you're wise to be cautious. I don't know what it's like to come off that much verapamil cold turkey, if that's what you're planning to do in order to detox for a bust in five days. It's possible (others here will know better) that you want to have the oxygen for aborting before you do that. In any event, you are in many good hands here.

My daughter had some head trauma, long long before her CH started . . . but the thing is that I think most or at least very many people have had head trauma at one time or another (football, anyone?), so it would be hard, I think, to show any kind of definitive relationship.

After talking to my daughter, I have one small, final thought to add. I ask her from time to time whether she'd be kind enough to come on the board and express her thanks (which are deep and sincere) personally, instead of just through me. I realized yesterday that because her situation is relatively minor compared to so many (she's episodic; until her last cluster she was somehow coping by just enduring her attacks with no abortives or preventives at all; and the combination of seeds and O2 worked extremely well for her), she doesn't want to relive anything related to CH, and she doesn't want to consider that things could become worse for her in the future. She doesn't want to read, for example, about people for whom seeds or O2 don't seem to be working. This might be a failure of compassion, but she's young, too, and trying to deal with the rest of her life, which isn't an easy one, so I give her a grudging pass. I think maybe a lot of episodics might fantasize that the last cluster somehow might have been their last one ever. I know that in psychology certain things and experiences are recognized as "anchors" that automatically bring up good or bad feelings, and I suppose it could be true that for some people who have been at the board when they were hurting and desperate and scared, just returning to it stirs up all those bad feelings, even if they're okay at that moment. May we all hope that rum specials or BOL or licorice root or dereksgirl's investigations into the effects of the flu or some other breakthrough will mean that one day no one has to come here at all. I heard on the radio the other day that 50,000 Parkinson's patients in the US now have electrodes in their brains that reduce or even prevent tremors. It's going to happen -- and then we'll have to find another, happier reason to keep this amazing group together.

In Philly, silly. (PF, from what I last heard.)

I'd try hard to be there . . . and maybe my daughter would come, too. Maybe, if it happens, those who do go could bring back somea them there bottles for others to order?? (I actually worked in the BVI, on and off, many (,many) years ago.)

Just getting this off my chest . . . I've only been here a little while, just a few months, but I've been shocked by how many folks show up, receive an outpouring of not just generous assistance but something pretty darn close to real love, and then disappear without so much as a thank-you or a good-bye or a "Hallelujah, I'm PF; don't need you folks anymore!" I can easily count five such cases without even trying, and that doesn't include the one who at least answered my PM asking what was up. It makes me admire you all all the more, because it feels kind of like a slap in the face to me; and it makes me more appreciative of the keiths and beckyvs and so many, many others who stick around, report on how they're doing, say thanks, and even help others.

Thanks, Les! I think I've probably said this before, maybe even more than once, but I think there's a point (which you haven't reached yet) where getting information to Dr. Andrew Sewell at Yale might be a good idea. In my experience, he's been quite good at popularizing alt treatments. Jerry