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CHfather

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Everything posted by CHfather

  1. 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.)
  2. 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;
  3. 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
  4. Leslie, I know that it says somewhere in the Clusterbuster files (or somewhere at this board) that the water should not be fluoridated. We figured it was worth it to buy a bottle of spring water in order to adhere to that. Jerry
  5. Eamon, in your other post you say you've been reading quite a bit around this board. So I'm assuming you either have an oxygen setup or you are doing what you need to do to get one, and also that you have read about the relationship between zomig and busting. Keep reading and ask your questions; you'll get answers.
  6. It's discussed in the thread "a potential new option," on the general board.
  7. Thank you, Les. I'm also looking forward to a report from your meeting this week with the woman from the board of the Herbalist Guild.
  8. my daughter has CH, jeff. in many ways, i just didn't want to know how bad it was for her, so i accepted her word for it that she'd "be okay," that hers weren't as bad as some people's . . . because it was too much torture being far away from her and imagining what she was going through (by herself). then, visiting during a cycle and sitting up with her through a couple of terrible attacks (with no meds at all) taught me everything i needed to know about how much she was suffering. luckily, we got help from this place and she's doing much, much better, but it's still hard for me to keep from
  9. Hang in there. All this crap is par for the course for a lot of people. Remember, too, that getting a tank is key, whatever nonsense they're going to tell you about flow; you can DIY from there. If the nurse might be willing to watch a crappy but eventually informative news report, there's a short youtube video that mentions the JAMA high-flow study and might educate her a bit about what you're going through and what you need:
  10. VA, to reiterate:   >at least 15 lpm flow on the regulator (i guess Takinit is saying 10 might be okay if that's all they'll give you; worth trying??--I'm not an expert)   >non-rebreather mask (for some people, including my daughter, a breathing tube works just as well and is less claustropobhic, but the non-rebreather mask is probably your goal)   >at least one large tank; but preferably at least one large one and at least one smaller one i believe all those things should be relatively straightforward to get. Takinit might be right that you might be able to get
  11. VA, this is very good news. Congratulations! It is a critical first step, so you have leverage for the next ones. But I wouldn't count on 7 lpm and wrong mask being the only problems. First, make sure it's not a concentrator, which won't help you at all. Has to be a tank. And it has to be a big tank, and/or multiple smaller ones, or else you'll be running out of O2. (You actually want big tanks and small ones, because the small ones are a lot more portable.) When you get a tank, if it's an e-type (see the oxygen file at the menu tab on the left here, or just ask your provider) and you
  12. VA, please don't think I'm getting on your case in any negative way. I went through a similar thing with my daughter, who didn't want me to piss off her neuro or her oxygen supplier (both of whom, as someone wrote here, deserve to be shot for their inadequate and uncaring treatment of her). I guess your situation just touches me because it seems so close to hers and because I saw the difference that O2 could make. I will only say that I approached it very apologetically with her providers: "I'm really sorry to bother you again; I know you have a lot of patients in need of your help, but
  13. VA, Three and a half weeks before you can start getting O2!?! (I say "start" because then you have to wait for actual delivery.) It really is time for somebody--you, your gal, your mother, a friend . . . somebody--to get a lot more aggressive about this. Call every day to see if there's an opening; try another neuro; try a headache center; push those EMT relatives to come through; get the welding stuff; beg; borrow . . . I don't know . . . if you go to an emergency room, might they prescribe it? Also -- Maybe you have good reason for 40 seeds, but I think some folks would recommend goi
  14. This is from Wikipedia (hence, not definitive): >>>Magic Mushrooms in their fresh form still remain legal in some countries including Spain, Austria, and Canada. On November 29, 2008, The Netherlands announced it would ban the cultivation and use of psilocybin-containing fungi beginning December 1, 2008.<<< http://en.wikipedia.org/wiki/Psilocybin_mushroom#Legality
  15. cool. when you go "live," will seeing the content accessed from the tag cloud still require a registration/sign in, as it does now?
  16. Beautiful job, Chris!!!! The recently-updated ClusterBusters links page (http://www.clusterbusters.com/links1.htm) seems to contain some material that's not presently in your InfoBase. Guess I could add those links myself, but I feel like right now this is your space, and you might not want it cluttered up by others. I just have one suggestion. I'm constantly taken aback by how many CH sufferers don't have proper oxygen setups. And so I'm just wondering whether there's a way to highlight oxygen (maybe, for example, by having it as a separate item in your infobase list)?
  17. VA, another compelling article to take/fax/email to your doc would be http://jama.ama-assn.org/content/302/22/2451.full. It seemed to help with my daughter's doctor when we shoved both articles in the doctor's face (politely, but insistently). I don't know why they won't give it to you. One thing it says in this article is >>>The great advantage of oxygen is that it has no established adverse effects<<< Are your hopes for getting O2 from other sources fading (I was thinking today was gonna be the day)?
  18. VA, have you checked your PMs (top of page, left)? Might be too late now, but your O2 situation still sounds iffy, so maybe not.
  19. Completely agree, T. "Contributors" was probably a bad word choice by me. I guess I just wanted clarity from Dr. J -- which I am still hoping to receive -- about what he meant by >>Even better: help us find investors so we can move this along even faster.<< I mean, I could find potential investors and I think most of us could ("potential" investors because they'd make their decisions on a number of bases, including hard-headed rationality and possibly sentimentality--like investors in the Green Bay Packers do). But I'm not gonna waste my time sending my cousin Harry to invest if
  20. Dr. J, My best golf buddy is a neuroscientist who developed a pill that works great for a bunch of things, as demonstrated in Phase I clinical trials. He's raised many, many millions, and now needs 6 million more. It's taken him close to 10 years. It seems he's always on the cusp of having it happen, but then things slide back and then he's on the cusp of either giving it up or breaking through. I mention all this to say I guess I understand some of what Entheogen is probably going through. But since many of us are so anxious about BOL, can you say anything more about how much more $
  21. Les, since Stephen Jay Gould is a hero of mine, it gets my back up to see him referred to as "full of shit." So let me say that he is talking about something else (or, was talking about something else, since he died in 2002 and this quote comes from 1997) than what you accuse him of saying. His quote refers to the "non-overlapping magesteria, science and religion." The "magesterium" is a particularized term, referring to the authority of the church (particularly the Catholic church, where the term is quite important) to teach true doctrine as derived from divine guidance, and Gould is extendi
  22. I had meant to include Dr. Sewell's blog and the website www.clusterattacks.com, but I forgot. I hope others will chime in, too, so this resource is as useful as possible. I was glad to see in his post today that ThatHurts/Jeff got some benefit from it. Jerry
  23. This is from clusterattacks.com, from what I think is Dr. Sewell's blog. http://www.clusterattack.com/blog/zapping-the-sphenopalatine-ganglion/ (There's an illustration there showing this ganglion.) Zapping the Sphenopalatine Ganglion Narouze (2010) Role of Sphenopalatine Ganglion Neuroablation in the Management of Cluster Headache Sick of taking pills or sucking down oxygen? From the Cleveland Clinic comes this review of one of the less invasive forms of surgery for cluster headache—sphenopalatine ablation. Cluster attacks originate in a small part of the brain in the center of t
  24. Marina, you wrote >>>Oxygen didn't work for him.<<<  I know you came here for help, not argument, but six months ago I was telling people that oxygen didn't work for my daughter. Then it turned out that her doctor-prescribed oxygen set-up was all wrong. The prescription her doctor wrote would not have helped anyone with CH. Once she got a proper set-up, it worked like the miracle that it is for so many people. So I'm just asking you to be sure that your son gave oxygen a proper trial: high flow and a non-rebreather mask or tube (not cannula). I have read here that
  25. Of course, your doc might have some good reason to keep the O2 away from you, so I'm not offering medical advice. But as you might already have read, you can set up an O2 system on your own by getting O2 canisters from a welding supply place and getting a mask and regulator from any of a number of sources. I should say that I'm not a CH sufferer myself, but the father of one, so my advice should be taken more lightly than what you get from others, but it's hard for me to imagine detoxing without O2 (although my daughter went six years taking virtually nothing, not even O2, for her CH and some
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