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Everything posted by CHfather

  1. 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 an improved strategy are always welcome, though I guess for now we'll wait on the forthcoming appointment -- and move on tomorrow to phase 2 of RC busting.) I've been sitting up with my kid as she endures this middle-of-the-night horror, and I think of all of you as she goes through it and then somehow manages to face the next day with hope and a smile.
  2. 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 some O2 at a welding supply place today and was told that a license or a prescription was required.) Jerry
  3. 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.
  4. New to this place, and already grateful beyond belief for so much generosity of information and spirit. Thanks to all. Jerry
  5. 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 different blood pressure baseline than most, and that's what makes me concerned about the "serious, even fatal medical consequences" that TommyD mentions. Again -- thank you. This whole board so often moves me to near tears, as I see people reaching out so generously to help others.
  6. 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!
  7. 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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