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ClusterBusters

CHfather

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Posts posted by CHfather


  1. 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


  2. 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 delay in getting to the O2)?  I am SO afraid that for who-knows-what reason the oxygen might not work for her, and then she'll be left with a full-blown 2-or-3-hour thing that the RedBull might have cut back or even stopped.

    If you're willing to read farther . . . She had her second RC dose on Monday.  She's definitely not CH-free obviously, but is it possible that her busting is making the attacks more susceptible to things like RedBull and O2?  (In which case, for example, maybe a RedBull will abort or diminish the severity of her attack even if she drinks it after the attack's underway.)  (I'm going to post more, and more questions, about her busting experience later.)

    As always, THANK YOU.  Don't know what I -- and we -- would do without you all.


  3. 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 immediately, or just that it will catch up with you sometime?  Since my daughter's attacks almost always occur at night, I'm figuring that alcohol just "triggers" them more severely then, but that it does affect her.

    She's not a heavy drinker, but as I say she does like one or two (or, sometimes, three) a day, and she enjoys them and they help her relax.  I hate to insist on her losing this pleasure if I'm wrong.

    As always, thanks.


  4. 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'heads and those who love them already know all this, having heard the "Sometimes I get bad headaches too" or "My friend cures her migraines by eating geranium seeds"-type stories way too often. I actually think this is basically true of 99 percent of doctors, too -- they have no freakin' idea about real pain; it's just a business to them.

    I think fairly often about how much better the world would be if everyone actually had to experience an episode of a variety of intense kinds of pain just once in their lives: a CH attack, some AVN, a little pancreatitis, a war wound . . .

    But here . . . everyone understands, and that really changes everything.


  5. 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 as well for her as it does for so many others.  And we're doing other things recommended here.  Hopeful is the right attitude, because you WILL find something that works.  The good people here won't let you down or leave your side until you do.

    Your son will reach daylight in terms of his own suffering, no question about it, one way or another. If it's not through things recommended here, it will be from another kind of medical breakthrough. Brain imaging is becoming more and more effective, for example, and the mechanism of this darn affliction will be found and made treatable. Or maybe it'll be botox, just authorized by the FDA for use on headaches and shown to be effective in some cluster sufferers.  There WILL be something.

    I'd like to add something that's just a personal observation. In my own life I have been through some very extended periods of very extreme pain. Now my daughter is going through worse pain, though not as constant or as seemingly unending as mine was.  Neither of us would want this or volunteer for it, but there is no question it has made both of us better people, much more capable of empathy for others who are suffering in any way, physically or emotionally or both. You only have to read around this board to see that quality in practically everyone here. I know I cry with the people here who are suffering, and celebrate with those who are busting free. I would also say that both my daughter and I appreciate pain-free life (or even limited-pain life) more than most people do.  I play golf now, after many years when I couldn't walk from the living room to the kitchen without stopping along the way to recover from the pain. I'll be out on the course with guys who are cursing and complaining and miserable because they hit a bad shot or two. They sometimes ask me why I'm so calm, and I answer something like "Because I am walking outside on a beautiful day, and I'm so grateful for that. What do I care what number I'm going to write down on a piece of paper after this hole is over?"  My daughter frequently remarks to me about how much more she appreciates life's blessings now.

    So again, I'm not looking for fake silver linings, but stating what I believe to be facts. First, that your son will get the help he needs to at least manage this thing, or to completely beat it. And second that he will be a better person for it in the end, in ways that will make every single day of the long rest of his life (his life expectancy now is well over a hundred years, thanks to medical science) richer and brighter and better. Forgive me for the speech, but it's what I think.

    Jerry


  6. 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 after your last seed dosing before starting the psilo?

    My own instinct would be to stick with the seeds to be sure they've had a fair test, since it seems some things work for some people and some for others.  But maybe if psilo is so much better, and if there's no post-dose hit/slapback from psilo, it would make sense to just switch to psilo and come back to seeds later if the psilo doesn't help?????? :o??????


  7. 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).


  8. 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.


  9. 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.


  10. 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


  11. 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.


  12. 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.


  13. 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!


  14. 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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