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Everything posted by CHfather

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. I'm pretty sure the ones I got from www.psychoactiveherbs.com worked. Jerry
  10. What they said. Or, WHAT WHAT!!! You are amazing! Jerry
  11. BTW, my daughter is just about the same age you are. My heart goes out to you. Jerry
  12. 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
  13. Jilly, you will get amazing help, support, and understanding here. I'm new, and it's my daughter who has the CH, but this place has changed both of our lives in a pretty short time. Bejeeber said it so well: >>Your willfully ignorant bonehead dork of a neurologist is unfortunately very typical of non headache specialist neurologists<< Here are two articles about high-flow O2 from serious medical journals that you can print out and show to him/her, if that would create a response of helpfulness: Journal of the American Medical Association: http://jama.ama-assn.org/content/302/2
  14. Ron, it's Dr. Sewell's blog. I don't think he's posted much there in a while. www.clusterattack.com Jerry
  15. I am with you in any way. I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings. At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood? Gosh, I'm thinking of some people I know who might be able to help. Can this campaign be organized in some way? (Am I jumping the gun? Isn't Enthe
  16. Thanks, as always, to you all. Takinit, I'm an old guy, too, and a sip of caffeine in the morning will keep me up all night, but actually, with my daughter, she falls asleep right after the RedBull/aborted attack! I suspect that's from being so wired while she waits for the demon to arrive, and so relieved when it's gone. (I've posted more about her at the "Share Your Busting Stories" forum.) Blessings to all, Jerry
  17. So today we FINALLY get my daughter's oxygen hooked up! Lately, she has been finding that if she stays up all night waiting for the CH beast to appear, she can pretty much abort an attack as soon as it starts with an 8 oz. RedBull. Since that's often at something like 4 am, she'd like to be able to go to sleep at a more normal time with some confidence that if she wakes up with a more advanced CH she'll be able to knock it back. So, my question, finally: Should she slam a RedBull immediately upon waking up and then hit the O2? Is there any danger in that (aside from the one-minute dela
  18. My daughter and I are of different views about this. She likes her drink now and then, and she insists that white wine or scotch are not "triggers" because she doesn't get CH attacks immediately or soon after imbibing. I say that I notice a difference in the severity of her night-time attacks when she's had a drink or two in the evening or later. (And I have read in so many places that alcohol is just plan bad during your cycle.) Can you inform me about this? I read the thread about triggers (alcohol, alcohol, alcohol), but by "trigger" do you mean that an attack follows more or less imme
  19. I learned something else from that golf experience, which that only about one person in a hundred actually gives a crap about your (one's) pain experience. Sometimes my answer to the "Why so calm?" question goes more like "Well, there was a time in my life when, for about a year and a half, I couldn't walk more than very, very short distances or sit down at all. So I'm just happy to be out here walking in the sunshine . . ." You'd think that might be interesting to people, but by far the two most typical responses are (1) "Oh." and (2) "I once had a hangnail that really hurt." Of course, C'
  20. Hi Hopeful, I'm quite new here myself but I already consider it a home--and a godsend. This week I've been sitting up much of the night with my daughter, in her thirties, as she endures some nasty CH assaults. I massage her back and her neck, hold the ice gently on or near her temple where the pain is worst, distract her when she's ready to try to think about something else besides the pain, pace with her . . . and of course it's agonizing for a parent, but thank heaven you are there for your son. We don't yet have a proper oxygen setup here, but we will soon, and I'm hoping that will work
  21. I have read here that at least sometimes after starting busting with LSA, people will get "post-dose hits" (which I think were also called "slapbacks" (?) in another thread), and these hits can be quite bad. Four questions: 1. Is this so common that it should be assumed that early in the LSA process things are very likely to get worse before they get better? 2. Does this same thing happen with psilo? 3. If you were early in an LSA-based busting process and then you were able to get psilo, would you switch from seeds to psilo? 4. If you did switch, would you have to wait five days aft
  22. weatherman, you wrote: >>Will have to go to the Boardwalk in Santa Cruz, CA (just over the hill from me) and get some chocolate covered bacon<< I lived in Santa Cruz until about 18 months ago. I'm pretty sure I was the only person there who looked like he regularly ate chocolate-covered bacon. And of course you're right -- outside the boardwalk, probably the closest you could get in SC would be carob-covered tofu (organic, of course).
  23. Thanks, Takenit. Not better yet, but thanks to this site we have information, hope, and support. As I read your post about leaving that other site, I thought that, as far as my experience as another Newbie here goes, you've found the right place.
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