CHfather

After talking to my daughter, I have one small, final thought to add. I ask her from time to time whether she'd be kind enough to come on the board and express her thanks (which are deep and sincere) personally, instead of just through me. I realized yesterday that because her situation is relatively minor compared to so many (she's episodic; until her last cluster she was somehow coping by just enduring her attacks with no abortives or preventives at all; and the combination of seeds and O2 worked extremely well for her), she doesn't want to relive anything related to CH, and she doesn't want to consider that things could become worse for her in the future. She doesn't want to read, for example, about people for whom seeds or O2 don't seem to be working. This might be a failure of compassion, but she's young, too, and trying to deal with the rest of her life, which isn't an easy one, so I give her a grudging pass. I think maybe a lot of episodics might fantasize that the last cluster somehow might have been their last one ever. I know that in psychology certain things and experiences are recognized as "anchors" that automatically bring up good or bad feelings, and I suppose it could be true that for some people who have been at the board when they were hurting and desperate and scared, just returning to it stirs up all those bad feelings, even if they're okay at that moment. May we all hope that rum specials or BOL or licorice root or dereksgirl's investigations into the effects of the flu or some other breakthrough will mean that one day no one has to come here at all. I heard on the radio the other day that 50,000 Parkinson's patients in the US now have electrodes in their brains that reduce or even prevent tremors. It's going to happen -- and then we'll have to find another, happier reason to keep this amazing group together.

In Philly, silly. (PF, from what I last heard.)

I'd try hard to be there . . . and maybe my daughter would come, too. Maybe, if it happens, those who do go could bring back somea them there bottles for others to order?? (I actually worked in the BVI, on and off, many (,many) years ago.)

Just getting this off my chest . . . I've only been here a little while, just a few months, but I've been shocked by how many folks show up, receive an outpouring of not just generous assistance but something pretty darn close to real love, and then disappear without so much as a thank-you or a good-bye or a "Hallelujah, I'm PF; don't need you folks anymore!" I can easily count five such cases without even trying, and that doesn't include the one who at least answered my PM asking what was up. It makes me admire you all all the more, because it feels kind of like a slap in the face to me; and it makes me more appreciative of the keiths and beckyvs and so many, many others who stick around, report on how they're doing, say thanks, and even help others.

Thanks, Les! I think I've probably said this before, maybe even more than once, but I think there's a point (which you haven't reached yet) where getting information to Dr. Andrew Sewell at Yale might be a good idea. In my experience, he's been quite good at popularizing alt treatments. Jerry

Leslie, I know that it says somewhere in the Clusterbuster files (or somewhere at this board) that the water should not be fluoridated. We figured it was worth it to buy a bottle of spring water in order to adhere to that. Jerry

Eamon, in your other post you say you've been reading quite a bit around this board. So I'm assuming you either have an oxygen setup or you are doing what you need to do to get one, and also that you have read about the relationship between zomig and busting. Keep reading and ask your questions; you'll get answers.

It's discussed in the thread "a potential new option," on the general board.

Thank you, Les. I'm also looking forward to a report from your meeting this week with the woman from the board of the Herbalist Guild.

my daughter has CH, jeff. in many ways, i just didn't want to know how bad it was for her, so i accepted her word for it that she'd "be okay," that hers weren't as bad as some people's . . . because it was too much torture being far away from her and imagining what she was going through (by herself). then, visiting during a cycle and sitting up with her through a couple of terrible attacks (with no meds at all) taught me everything i needed to know about how much she was suffering. luckily, we got help from this place and she's doing much, much better, but it's still hard for me to keep from crying when i think about her CH (right now, for example).

Hang in there. All this crap is par for the course for a lot of people. Remember, too, that getting a tank is key, whatever nonsense they're going to tell you about flow; you can DIY from there. If the nurse might be willing to watch a crappy but eventually informative news report, there's a short youtube video that mentions the JAMA high-flow study and might educate her a bit about what you're going through and what you need:

VA, to reiterate:   >at least 15 lpm flow on the regulator (i guess Takinit is saying 10 might be okay if that's all they'll give you; worth trying??--I'm not an expert)   >non-rebreather mask (for some people, including my daughter, a breathing tube works just as well and is less claustropobhic, but the non-rebreather mask is probably your goal)   >at least one large tank; but preferably at least one large one and at least one smaller one i believe all those things should be relatively straightforward to get. Takinit might be right that you might be able to get things from the O2 supplier once you have a basic script, but like he said, it's a lot easier if it starts from the doc's office. and of course if all you can get is a tank and whatever they'll give you, of course you should accept that and DIY from there. i am pretty certain, though, that a concentrator (a machine that makes O2 from ambient air) will get you nowhere, because the flow will only go up to 7 or 8 (that was the first thing they gave my daughter). i think you should personally call the O2 supplier once the script is in to them, double-checking to make sure they know what you need. (i'm telling you all this from my experience with my daughter, where everybody who could screw up, did, in almost every possible way. including the neuro who said she'd fax the script to the O2 people right away, and then went home without having done so, and the O2 people who didn't set up the tank for us and left without giving us the wrench we needed) when it's delivered, have them set it up and show you how to use it (as they should do). it's all extremely simple once you know how to do it, but there's no point having problems or anxieties when you finally settle down for what we all hope will be some well-earned, blessed RELIEF. and be sure to look at the O2 file, re such things as blocking off one hole in the mask and cutting off the elastic straps on the mask (so you don't fall asleep with it on). jerry

VA, this is very good news. Congratulations! It is a critical first step, so you have leverage for the next ones. But I wouldn't count on 7 lpm and wrong mask being the only problems. First, make sure it's not a concentrator, which won't help you at all. Has to be a tank. And it has to be a big tank, and/or multiple smaller ones, or else you'll be running out of O2. (You actually want big tanks and small ones, because the small ones are a lot more portable.) When you get a tank, if it's an e-type (see the oxygen file at the menu tab on the left here, or just ask your provider) and you don't get a decent regulator, remember my offer and PM me. I'd try to call that nurse back right away and get things straight, though, so the prescription says 15 lpm regulator. You could email/fax/hand-deliver the articles to her so she knows you're not making all this up. At least the JAMA one, and probably the other one, too, specifies high flow with non-rebreather mask.

VA, please don't think I'm getting on your case in any negative way. I went through a similar thing with my daughter, who didn't want me to piss off her neuro or her oxygen supplier (both of whom, as someone wrote here, deserve to be shot for their inadequate and uncaring treatment of her). I guess your situation just touches me because it seems so close to hers and because I saw the difference that O2 could make. I will only say that I approached it very apologetically with her providers: "I'm really sorry to bother you again; I know you have a lot of patients in need of your help, but my daughter is suffering the worst pain that a human can endure, cluster headaches, and I don't want to see her suffering any longer than she has to. Do you mind if I call every morning just to see if you might have an opening?" Of course, this works easier if someone else is calling on your behalf. But I did get her in to the neuro 11 days before her scheduled appointment using that approach, and the O2 folks finally went out of their way to get her the right equipment. (I sent flowers with a thank-you note in her name to both of them afterward, too, just to be sure they remembered her, even though I would rather have sent them something more lethal.) Forgive me if this advice is way too parental. I'm just throwing out what I have, 'cause I'd sure like to see things get better for you.

VA, Three and a half weeks before you can start getting O2!?! (I say "start" because then you have to wait for actual delivery.) It really is time for somebody--you, your gal, your mother, a friend . . . somebody--to get a lot more aggressive about this. Call every day to see if there's an opening; try another neuro; try a headache center; push those EMT relatives to come through; get the welding stuff; beg; borrow . . . I don't know . . . if you go to an emergency room, might they prescribe it? Also -- Maybe you have good reason for 40 seeds, but I think some folks would recommend going higher.

This is from Wikipedia (hence, not definitive): >>>Magic Mushrooms in their fresh form still remain legal in some countries including Spain, Austria, and Canada. On November 29, 2008, The Netherlands announced it would ban the cultivation and use of psilocybin-containing fungi beginning December 1, 2008.<<< http://en.wikipedia.org/wiki/Psilocybin_mushroom#Legality

cool. when you go "live," will seeing the content accessed from the tag cloud still require a registration/sign in, as it does now?

Beautiful job, Chris!!!! The recently-updated ClusterBusters links page (http://www.clusterbusters.com/links1.htm) seems to contain some material that's not presently in your InfoBase. Guess I could add those links myself, but I feel like right now this is your space, and you might not want it cluttered up by others. I just have one suggestion. I'm constantly taken aback by how many CH sufferers don't have proper oxygen setups. And so I'm just wondering whether there's a way to highlight oxygen (maybe, for example, by having it as a separate item in your infobase list)?

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)?

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.

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

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

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

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

This is from clusterattacks.com, from what I think is Dr. Sewell's blog. http://www.clusterattack.com/blog/zapping-the-sphenopalatine-ganglion/ (There's an illustration there showing this ganglion.) Zapping the Sphenopalatine Ganglion Narouze (2010) Role of Sphenopalatine Ganglion Neuroablation in the Management of Cluster Headache Sick of taking pills or sucking down oxygen? From the Cleveland Clinic comes this review of one of the less invasive forms of surgery for cluster headache—sphenopalatine ablation. Cluster attacks originate in a small part of the brain in the center of the head called the hypothalamus, which controls (among other things) sleep, appetite, the autonomic nervous system, and the levels of various hormones. The autonomic nervous system is divided into two branches—the sympathetic (fight or flight) and the parasympathetic (rest and digest), both of which pass through the sphenopalatine ganglion, which is located at the back of the nose on both sides. Parasympathetic neurons synapse there, then run along with the maxillary nerve to the cheek and face. Sympathetic fibers pass through without synapsing and mainly end up in the walls of blood vessels. The sphenopalatine ganglion can be anaesthetized with drugs such as cocaine or lidocaine. It can also be destroyed by heating it to 80 C for a minute with radiofrequency ablation. What happens to cluster headache when we do that? Dr. Sanders in 1997 reported the following: Episodic cluster headache (n=56): 60.7% complete relief Chronic cluster headache (n=10): 30% complete relief More recently, Dr. Narouze (who authored this article) had better luck. He performed sphenopalatine ablation on 15 chronic cluster headache patients then followed them for a  year and a half. Three (20%) experienced complete relief and were able to stop all medications. Seven (46.7%) converted from chronic cluster headache to episodic. Three (20%) noticed no change for a few weeks, then gradual improvement in the intensity and frequency of their attacks. Two (13%) had complete relief of their cluster headache—which unfortunately then came back on the other side. The only major complication of the procedure seems to be nosebleed. What does this mean for medication-refractory chronic cluster headache patients? If you are considering surgery to treat your disease, then this has the advantage of being fairly minor compared to drilling a hole down to your hypothalamus. I am always skeptical of these peripheral procedures, however, because cluster headache is a central disorder. I have seen too many patients who had destructive surgery on one side of their head, only to have the cluster attacks squirt out on the other side instead—as happened to two patients in this series. As with any treatment, the risks and benefits need to be carefully weighed, and in this notoriously difficult crowd of refractory chronic cluster headache patients, Dr. Narouze seems to have obtained good results.