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Everything posted by CHfather

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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'
  6. 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
  7. 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
  8. 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).
  9. 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.
  10. Once again, thanks to all. A'Oop, I was referring to this JAMA article from last year: http://www.salterlabs.com/store/downloads/107.pdf Together with what you sent me via FunGuy (Ah! Just got the joke on that one), it ought to convince anyone--even a neurologist! (And, after the 02 guy asked if I had a license to buy the O2, I didn't have much choice but to try to prevail on his potential sympathy for a CH sufferer. He actually told me that they were not allowed, by law, to sell 12-15 lpm O2 (in Virginia, outside DC). But maybe he was just sick of me by then. Suggestions for a
  11. Thanks. She has considerable light sensitivity (also more typical of migraine than CH), but she also has all classic CH symptoms. Even though she lives in a major metro area, her diagnosis history is crap (like most people's), and so much depends on self-"diagnosis" with the help of folks like you. She got an appointment today at a major headache center -- for March 22, 2011! Sees her regular neurologist on Monday, but I hold out little hope for that: We're still trying to get this neurologist to prescribe high-flow O2. She'll bring the JAMA article with her this time. (I tried to buy s
  12. During this cycle, almost every night along with her attacks my daughter has serious vomiting. Years ago when she started having CH, she'd vomit a little because the pain made her nauseous, but now she says she's not nauseated -- it just feels like her body wants everything that's in it OUT immediately. She's not doing any busting (yet), so it's not a reaction to seeds. Just wondering how common this is. Thanks.
  13. New to this place, and already grateful beyond belief for so much generosity of information and spirit. Thanks to all. Jerry
  14. Thank you for hanging with me, Jordan.     >>I guess the question is whether or not LSA has more than Psilo?<< Yes, I'd love to know about that. It also seems that TommyD is maybe talking about extraneous stuff ("other related substances in the ergot family"), maybe the husks or something, which might lead me to think that carefully-extracted HBWR seeds would be better than crushed RC, husks and all.     >>many are taking these to treat CH.<< Yes. I love reading the success stories! But my daughter (about whom I'm writing) is starting from a differ
  15. Sorry, J -- I should think clearer before posting. Yes, vasoconstrictors raise blood pressure. I was kind of freaked by TommyD's warning: "The various natural sources of LSA may contain other related substances in the ergot family, and some of these are not so friendly. Many have a severe vasoconstrictive effect - narrowing the blood vessels and reducing blood flow, sometimes dangerously - that can cause serious, even fatal medical consequences." I jumped to overworrying and getting it wrong. Thank you for correcting me. That warning's still scary, though!
  16. Has anyone experienced complications from seeds related to low blood pressure? "Normal" resting bp in this person is about 90/70, and I see that TommyD has a warning about vasoconstriction from ergot substances in one of his excellent posts. Advice?? Thank you!
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