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Everything posted by CHfather

  1. CHfather

    Re: V.A. Update!

    VA, another compelling article to take/fax/email to your doc would be http://jama.ama-assn.org/content/302/22/2451.full. It seemed to help with my daughter's doctor when we shoved both articles in the doctor's face (politely, but insistently). I don't know why they won't give it to you. One thing it says in this article is >>>The great advantage of oxygen is that it has no established adverse effects<<< Are your hopes for getting O2 from other sources fading (I was thinking today was gonna be the day)?
  2. CHfather

    Re: V.A. Update!

    VA, have you checked your PMs (top of page, left)? Might be too late now, but your O2 situation still sounds iffy, so maybe not.
  3. CHfather

    BOL is being produced beginning Jan 2011

    Completely agree, T. "Contributors" was probably a bad word choice by me. I guess I just wanted clarity from Dr. J -- which I am still hoping to receive -- about what he meant by >>Even better: help us find investors so we can move this along even faster.<< I mean, I could find potential investors and I think most of us could ("potential" investors because they'd make their decisions on a number of bases, including hard-headed rationality and possibly sentimentality--like investors in the Green Bay Packers do). But I'm not gonna waste my time sending my cousin Harry to invest if only Bill Gates will do. I actually know some people who know some rich people, and I might be willing to pursue that, but "help us find investors" is not clear enough for me. (Incidentally, I have made this offer to someone closely connected to Entheogen and I was kindly told, in essence, that my help was not needed. So I was surprised by Dr J's statement. I don't know if I could help or not, but I'd damn well try.) In the back of my mind always is something that Dr. Sewell wrote at his blog. I posted this once before and it seemed to irritate some folks, but like I say, it has stuck with me. He wrote: >>>My question to my readers is–why aren’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet Jerry’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research is… well, close to zero. But if you don’t care about cluster headache research, why should we?<<< He's not talking about the same kind of activity as funding a for-profit venture, but IF BOL is viable and IF Entheogen is the best way to get it, I want to know what I can do, and what we can do, in some kind of actionable terms. I really don't want to go to my grave thinking I didn't do all I could for my daughter's future -- and the rest of you have touched me pretty hard, too. Jerry
  4. CHfather

    BOL is being produced beginning Jan 2011

    Dr. J, My best golf buddy is a neuroscientist who developed a pill that works great for a bunch of things, as demonstrated in Phase I clinical trials. He's raised many, many millions, and now needs 6 million more. It's taken him close to 10 years. It seems he's always on the cusp of having it happen, but then things slide back and then he's on the cusp of either giving it up or breaking through. I mention all this to say I guess I understand some of what Entheogen is probably going through. But since many of us are so anxious about BOL, can you say anything more about how much more $ is needed and how it's being sought? More specifically, you say >>>Even better: help us find investors so we can move this along even faster. <<< Are we talking about multimillion-dollar investors? Is there any way that a large number of CH contributors, their friends and associates, could make a dent in what you need? Thanks, Jerry
  5. CHfather

    magic or medicine ?

    Les, since Stephen Jay Gould is a hero of mine, it gets my back up to see him referred to as "full of shit." So let me say that he is talking about something else (or, was talking about something else, since he died in 2002 and this quote comes from 1997) than what you accuse him of saying. His quote refers to the "non-overlapping magesteria, science and religion." The "magesterium" is a particularized term, referring to the authority of the church (particularly the Catholic church, where the term is quite important) to teach true doctrine as derived from divine guidance, and Gould is extending that term to refer the authority of science to teach "truths" that it has discovered. What he is saying in the full 1997 article--which you can read here http://www.stephenjaygould.org/library/gould_noma.html -- is that these magesteria ought not to overlap ("The lack of conflict between science and religion arises from a lack of overlap between their respective domains of professional expertise—science in the empirical constitution of the universe, and religion in the search for proper ethical values and the spiritual meaning of our lives. The attainment of wisdom in a full life requires extensive attention to both domains—for a great book tells us that the truth can make us free and that we will live in optimal harmony with our fellows when we learn to do justly, love mercy, and walk humbly."), but there is no well-defined "no-man's land" between them. He's looking particularly at the Church's positions on evolution. He's talking about religion and science (primarily about a religion and science), which is quite different, I think, from what you're talking about, "spirituality and science." Jerry
  6. CHfather

    new links page

    I had meant to include Dr. Sewell's blog and the website www.clusterattacks.com, but I forgot. I hope others will chime in, too, so this resource is as useful as possible. I was glad to see in his post today that ThatHurts/Jeff got some benefit from it. Jerry
  7. CHfather

    a potential new option

    Marina, you wrote >>>Oxygen didn't work for him.<<<  I know you came here for help, not argument, but six months ago I was telling people that oxygen didn't work for my daughter. Then it turned out that her doctor-prescribed oxygen set-up was all wrong. The prescription her doctor wrote would not have helped anyone with CH. Once she got a proper set-up, it worked like the miracle that it is for so many people. So I'm just asking you to be sure that your son gave oxygen a proper trial: high flow and a non-rebreather mask or tube (not cannula). I have read here that sometimes it might take two 15-minute periods, with 10 minutes in between, to effectively abort some cluster attacks for some people. As others have said, the oxygen information pages here will tell you all you need to know. Again, my heart goes out to you--it's a terrible, heartbreaking thing for a parent to endure--and I don't mean to be argumentative. I just want to be sure you're not missing out on a potential life-saver.Â
  8. CHfather

    Newbie Who Needs Guidance

    Of course, your doc might have some good reason to keep the O2 away from you, so I'm not offering medical advice. But as you might already have read, you can set up an O2 system on your own by getting O2 canisters from a welding supply place and getting a mask and regulator from any of a number of sources. I should say that I'm not a CH sufferer myself, but the father of one, so my advice should be taken more lightly than what you get from others, but it's hard for me to imagine detoxing without O2 (although my daughter went six years taking virtually nothing, not even O2, for her CH and somehow, barely, survived -- so I guess it can be done). You know all about using RedBull/caffeine-taurine drinks, I imagine; and maybe you've read the thread about licorice root (titled "A potential new option") here at the General Board. Read, read, read, and ask, ask, ask -- the people here are, as someone recently said, awesome.
  9. CHfather

    Leuprorelin / Leuprolide Acetate

    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.
  10. CHfather

    Leuprorelin / Leuprolide Acetate

    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.
  11. CHfather

    Happy B-Day Raquel

    Ditto! Jerry
  12. CHfather

    Stepping on toes

    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
  13. 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 tight cast. They could not bend their elbows. There was moaning and gnashing and cursing and screaming, because although people sat at this huge wonderful table, they couldn’t bend their elbows to pick up the food and eat it. This truly was Hell. The angel said, “Now come here, let me show you something.” They walked next door into Heaven. They see the same banquet table filled with delicacies to delight the angels, and people are still sitting at the table. This man notices, quite to his astonishment, that everyone still has the casts on their arms. They can’t bend their elbows at all. But here in Heaven, everyone is laughing and giggling and smiling and singing wonderful songs and feasting on this glorious banquet. The man was a bit perplexed, until he noticed that here in Heaven people were picking up the food, and with their locked arms, reaching across the table to feed their fellow man.
  14. CHfather

    Why I love this place: A parable

    No, Ting, I can't take credit for it. Just came across it while doing some research and thought of you all.
  15. CHfather

    New here, help...advice??

    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 tank, a high-flow (15 liters per minute) regulator, and a non-rebreather mask. There are articles from major medical journals you can show your doctor about how effective this is. I posted a pretty long message about O2 to JillyfromPhilly in the General Board in her thread "verap, anxiety, antidepressants and other fun stuf"; you might want to look at that. There are a lot of other short-term abortives discussed here at this board. I'd say, from my observation, that chugging RedBull or some other high-caffeine-plus-taurine beverage is pretty high on the list, and some have suggested going outside (if you live in a cold place) and inhaling cold air strongly through your nose. Others will have other ideas, or you will find them by browsing through the messages. Also, I think your doctor was wrong about having to use the Imitrex "before the headache," but others can tell you more about that, since I'm not the CH sufferer in my family, my daughter is, and she, like you, treated it with nothing at all (except that she did it that way for six years, if you can imagine!). (She had been given the wrong oxygen prescription by her doctor, and therefore assumed that oxygen "didn't work" for her. When she got the right prescription, everything got a lot better.) I believe that others here more knowledgeable than me can help you, and will help you, with anything you need to know about the "busting" method or anything else. I think they might suggest that if you can abort attacks with something other than Imitrex, you should. But I will let them take over. You have come to a great place. The people here probably saved my daughter's life. Things will get better for you!
  16. 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 later, one seed at a time, if needed.<< Also, here's a link to a med-school professor's report about HBWR -- http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf -- although it's my understanding that the extraction method he describes is overcomplicated, compared to what's in the "LSA" file here.
  17. 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
  18. 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, may there come across the waters a path of yellow moonlight to bring you safely home. May the nourishment of the earth be yours, may the clarity of light be yours, may the fluency of the ocean be yours, may the protection of the ancestors be yours. And so may a slow wind work these words of love around you, an invisible cloak to mind your life.
  19. CHfather

    a potential new option

    Jilly, what happened with your doctor appointment on Thursday, getting O2, and all that?
  20. CHfather

    newbie here

    >>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 through this, and what you're going through now will be in your past, too.
  21. CHfather

    newbie here

    and the rum
  22. CHfather

    newbie here

    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 with the same request. Here's a link to the Journal of the American Medical Association article about oxygen: Maybe print it and bring it with you: http://jama.ama-assn.org/content/302/22/2451.full  You must have the high flow rate and a mask, not cannula. It says so in the article. I suppose you might also get some kind of prescription or other emergency treatment (Imitrex, for example, and/or verapamil) at a hospital, or by calling your doctor. (Don't be afraid to call -- you need help; that's his job, Christmas or not.) People here caution about long-term use of the drugs prescribed for CH, but maybe in the short run they'd be good for you to use. (Needless to say, I'm not a doctor--just telling you what I've read and learned from my daughter's horrible experience.) If you can get to some oxygen, you should get relief within about 15 minutes, but keep going for another 5 to 10 or they're likely to come back. If it doesn't work in 15 minutes, wait 10 minutes and then start again. All these things are better if you catch an attack quickly. So stock up on RedBull. Others may add more. I hope you get help. Stay in touch here. Directly, or indirectly, we know what it's like, and people here will help you get past this. Jerry
  23. CHfather

    a potential new option

    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" thread or something. I know that for me, Dr. Sewell's articles about various treatments were very helpful in many ways (including leading me to Clusterbusters), and I feel pretty confident that if this is shown to work, he would write about it, which could get the word to a lot more people. Cart before the horse, I know . . . Just saying.
  24. CHfather


    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.
  25. CHfather

    verap, anxiety, antidepressants and other fun stuf

    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 still dread picking up the phone to call and find out how she's doing. So far, reports are good, but I always wonder/fear what it will be like if they aren't. I feel like everybody here is family, which makes you my adopted daughter whether I want you to be or not! It took a while to get the O2 for my (other) daughter (the one that's not you) -- a couple of days. Yes, I think insurance will cover the whole deal. I think if I was (or were) you, maybe I'd contact suppliers now, starting with Miller Med, and just ask what it would take, if you got a prescription on Thursday afternoon for a large tank, a regulator of at least 15 LPM, and a non-rebreather mask, to get that prescription filled on Thursday late or on Friday. (More awk) As I mentioned, my daughter's supplier had never even heard of CH, but you might try telling them (or having the ex tell them) why this is so urgent for you. If they know CH, I imagine they'll understand. When my daughter was scheduled to come to Chicago last week on business, I contacted a local buster who let me borrow one of his tanks (I had a mask and a regulator, but he would have loaned those to me, too). Maybe you might post a message at this board asking whether anyone would be able to do the same for you. And, for the tank, there's always the welding-supply method, no prescription needed, that's often mentioned here and that I believe has been suggested to you. I failed utterly when I tried that, but I think it was because I was so transparently not a welder, and I asked so stupidly. Apparently it's not hard to get a tank. Others can advise you better than I can about this. Wish I knew more. Pops