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Everything posted by CHfather

  1. Bejeeber -- Yes, I mentioned that in my post. I think making BOL the primary focus is the most expeditious way of getting relief to sufferers (assuming that BOL works as well as we all are hoping), unless CH sufferers are willing to go out and start robbing people to feed their voracious psilo habits, since I'm sure it was fear of crime, primarily, and not compassion that made methadone clinics acceptable to society. And I also think that the more that people in general appreciate what hell CH is ("Hey, I saw that on Oprah! It's really terrible.") and that psychedelics help it, the easier
  2. Well, this might be what you mean, and I might just be being picky, Bryan, but I don't care much one way or another about full legalization--all I care about is, selfishly, availability for people it will help. In that sense, I don't feel very subversive at all. Full legalization is, for me, a whole 'nother very interesting but secondary discussion.
  3. I just posted a summary of licorice root information down in the Clusterbuster files: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 I really appreciated Les Genser's having brought this to our attention, and I just thought the threads became a little complicated so maybe it would be valuable to summarize their key points. Les, as I say there, was kind enough to review the materials and give me permission to post them.
  4. 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 som
  5. 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'
  6. CHfather

    R C Seeds

    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.
  7. 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
  8. 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!)
  9. 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.
  10. 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.)
  11. 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
  12. 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 S
  13. 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.
  14. 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
  15. 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
  16. 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.c
  17. 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
  18. 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 r
  19. Thank you, Bob -- great work! Next step, to get it shown in every med school in the world. Jerry
  20. 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-Heada
  21. 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 bott
  22. 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.
  23. 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
  24. In Philly, silly. (PF, from what I last heard.)
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