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Everything posted by CHfather

  1. Thanks for pointing that out, veggies -- very thoughtful of you. I must say that for those who are obsessively interested in whatever might be happening with CH understanding and treatments (as I am), the whole document from which cluster posted this contains a bunch of pretty interesting abstracts. Nothing nearly as dramatic as what cluster posted -- I guess I just like to see anything that might promise some future possibilities. It's at http://www.springerlink.com/content/t1r43t7175100007/fulltext.pdf, and it can be searched by typing the word cluster into the search bar.
  2. Thanks for posting this, cluster. I'm always hopeful about any promising new development, in part because I figure they all add up to new insights. I hope this one works out well. I see it's for males, so it won't help my daughter.
  3. Dan, I have nothing to add to what your friends here have said and will say. I'm so sorry that you're suffering, because I've learned quickly in my short time here what a great and generous guy you are. If it's BOL or whatever, I hope you'll get what you need soon. Wish I had more than words for you. Jerry
  4. No, Ting, I can't take credit for it. Just came across it while doing some research and thought of you all.
  5. A Hasidic parable tells the story of a man who died and found himself on the other side. He was standing there and there were two huge halls in front of him. One was labeled Heaven; the other was labeled Hell. And an angel took the man on a little journey. First, he took him into Hell. In Hell, there was a huge banquet table filled with every delicacy a human could ever eat, beautiful strawberries, kiwi fruit, and exotic delicacies that words cannot describe. Everyone was sitting at this huge banquet table, but all of their arms, from the wrist up to the shoulder, were wrapped inside of a very
  6. Tuesday, that oxygen information can be a little daunting, though you should read it. It doesn't sound like you're using oxygen (O2) at all, so the first thing I think you need to do is call your doctor and request it -- demand it; don't take no for an answer. At least make a prompt appointment so you can demand it. It can make a huge, huge difference, and not enough doctors are aware of it, or prescribe it properly. (O2 is provided by a medical supply company through a prescription from your doctor.) If you need help knowing what to ask for, people here will help you. You must get a big t
  7. CHfather


    Sam, there are a lot of nicely prepared files here that can help answer many questions. To access them, you go to the pulldown menu at the bottom right side of the page, where it says "Forum Jump," and then click on "ClusterBuster Files." In this case, the file titled "LSA" will help answer your questions, I think. This can be handy if you have questions when no one's here to answer you. But I'm sure others will also help you. Here's what it says there regarding dosing (but you should probably read the whole thing): >>The beginning dose might be one or two seeds, with increases
  8. CHfather


    Sam, check out the thread "The future of BOL and Entheogen Corp." on the "Research and Scientific News" board here. You're in the right place. Hope you're pursuing oxygen. Jerry
  9. CHfather

    A poem

    Just wanted to share this with you all: made me think of you when I read it. (A "currach," I'm told, is a kind of canvas canoe.) Beannacht ("Blessing") by John O'Donohue On the day when the weight deadens on your shoulders and you stumble, may the clay dance to balance you. And when your eyes freeze behind the grey window and the ghost of loss gets in to you, may a flock of colours, indigo, red, green, and azure blue come to awaken in you a meadow of delight. When the canvas frays in the currach of thought and a stain of ocean blackens beneath you, m
  10. Jilly, what happened with your doctor appointment on Thursday, getting O2, and all that?
  11. >>I'm in Sheffield<< gosh, your name looks welsh ;D people here have amazing stories to tell. my daughter went through six years of just enduring her multi-hour headaches, day after day, six months of the year, owing to a combination of misdiagnosis, bad doctors (even after she was diagnosed), bad reactions to some common CH meds, and, eventually, helpless despair. she somehow managed to keep a demanding job during that time, too. thanks to this board and a few pretty simple actions (like dan says), the horrible, nearly unbearable part is in her past now. you'll make it
  12. So sorry you're dealing with this. I'm not a CH sufferer myself; my daughter is, and I've been all over this board and others looking for solutions, so let me mention some things people have talked about here for emergency relief. Chugging RedBull or another energy drink with caffeine and taurine helps some people. Other fast ingestions of caffeine. Inhaling very cold air through your nose. Intense physical activity. Go to the hospital, tell them you have CH, ask to use their oxygen (15 lpm flow, non-rebreather mask, inhale deeply). Some have gone to fire stations or EMT stations w
  13. Les, thank you for taking the time to share this so thoroughly with us. Any cause for hope is worth exploring, and you are quite persuasive about this one. I hope you don't find posts like Tingeling's to be negative -- for someone like me, always looking for ideas for my daughter, the potential blood pressure issue could be a deal-breaker, since my daughter's "normal" resting bp is 90/60. (That made her, for example, ineligible for verapamil -- probably a good thing, from what I've read here.) I'd also like to suggest that somehow the efficacy of this be tracked -- a separate "licorice" thre
  14. Jilly, all I can say about the family thing is that the instinct to find excuses not to have to be present, to be in denial about how hard the kid's life is, is very strong. (Lost my A+ there, for awk structure, but it had to go some time.) My daughter would always tell me. "It's not so bad, dad. Don't worry." But this time I was there during her attacks, and a lot of that time -- before O2 and busting -- I just wanted to run away. I'm not patting myself on the back; just saying I can understand how much easier it is to be in denial. Now that I'm back home and not with my daughter, I sti
  15. Thanks, Rock and MJ. She's doing so much better since these early posts of mine -- thanks to all the heroes at Clusterbusters. And once she got the CH under control, the vomiting stopped. I think you really might be right, MJ, because the experience very definitely was that her body wanted everything OUT, NOW, and her last vomit tended to coincide with the abating of her HA. Much appreciated -- and may she never have to deal with that again! Jerry
  16. Jilly wrote: >>Seeing the doc on Thursday & pushing (harder) for a script<< Jilly, I wrote you a long message a while earlier, and then my ISP messed up and I lost it. So I'll give you the shorter version here. This is based on the arduous experience my daughter and I had trying to get a proper O2 setup. Just some things to consider. 1. Maybe have someone come with you to the doc? We all have had those times when we really didn't get satisfactory service from a physician and later regretted it. Especially if you're already feeling crummy, someone with you as an advoca
  17. Jilly, I believe the O2 is very likely to change things very substantially for you -- giving you relief and showing you that it can be done. Some "breathing room," so to speak. I don't know all the technicalities of this, but it seems you will want a tank/regulator/mask for work in addition to whatever you're getting for home. Even if you have a typical nighttime pattern, you might find that shifting, and including some daytime incidents, as you bust or detox or whatever you decide to do. Others will please correct me if I'm wrong--I'm just speaking from my daughter's experience. The othe
  18. Thanks, BobB and FG. I had been discouraged reading some of the ONS results posted here at the site, but maybe there's long-term hope with this procedure. I listened to Dr. Goadsby talking about this procedure a while back (at http://www.reachmd.com/xmsegment.aspx?sid=4280). I seem to remember that it was there, or somewhere else, that he was saying that it's not even necessary to place the stimulation very close to the nerve: the mechanism of relief is somewhat mysterious. I'd rather have BOL or its ilk available, but it seems to me that any promising treatment gives hope. Jerry
  19. Would it make any sense to announce this at the general board? (Not telling you how to run this great site, of course -- just saying that if I hadn't already intended to make a donation I wouldn't have seen this, but there might be some folks who would donate, even if they hadn't been intending to, if they realized their money would be doubled.) Jerry
  20. I'm pretty sure the ones I got from www.psychoactiveherbs.com worked. Jerry
  21. What they said. Or, WHAT WHAT!!! You are amazing! Jerry
  22. BTW, my daughter is just about the same age you are. My heart goes out to you. Jerry
  23. Jilly, I was looking up headache specialists in Philly when I accidentally posted the above. Here's a place that lists three names: http://www.healthcentral.com/migraine/headache-specialists/pennsylvania.html Might be a place to start. It says "Migraine and Headache Specialists," so I'd call to find out which have CH experience, and maybe even which will prescribe oxygen. Jerry
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