CHfather

full disclosure, though: your headaches might become a little worse before they become better. the phenomenon is known here as "post-dose hits." not everyone experiences them, and they generally occur for only a day or two after a dose. considered a good sign that the dose has shaken things up, it can still be unsettling to get higher-kip headaches, or headaches at different times, after a dose. if you're like most people, you'll feel good results shortly after that, though you'll probably need to dose again a couple of times after additional five-day waits. also: there are quite a few meds (beyond just CH meds) that are believed to interfere with busting. if you're taking anything else -- an antidepressant, for example -- you should look over this list: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 finally, to be sure you're maximizing your current oxygen system -- did doc tepper, or someone, show you to block up any holes in your mask that do not have valves in them? if there's just an open hole in one side, you should block it off by holding a thumb over it when you breathe in (so you're getting pure O2 and no room air). or, you can just tape up the hole. the D3 is also likely to make detoxing easier.

don't neglect the D3, either, b.g. (as you saw from that other thread you were reading, it can sometimes be (or at least seem to be) pretty miraculous). i see tepper's already on the list of recommended CH docs--glad you found him! it does feel like meeting god, to find a doctor who understands after all the rest. (i hope at some point you might get back to those other ones and let them know what you have, so they might understand CH better and perhaps save some others from needless torment.) did tepper recommend a 15 lpm regulator and a standard non-rebreather mask? is your setup working well for you? many people here get even better results with the O2ptimask and a higher-flow regulator. the O2ptimask in particular is very highly regarded. you can find info about ordering those things in section 11 here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 looking forward to hearing more from you.

b.g., so sorry for what you are going through, and so glad you've come here. if you decide to treat your headaches with psychedelics, you can do that faster (faster than waiting for your mushrooms to grow) by using seeds, most typically rivea corymbosa (RC) seeds. you can buy the seeds (legally) today, and have them (legally) in your home, and take them (unlawfully) whenever you are ready, after (the hard part) having stopped taking the meds you're now taking for five days. they work just as well as mushrooms. you can order them from many places on the internet, including www.iamshaman.com and www.psychoactiveherbs.com you'd probably want to get 150 or 200 seeds (they're pretty inexpensive). for more information about how they are used, see this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 of course, if you decide to do this, let us know if you want additional advice. and if you're readier than i think to try psilocybin, others will answer your questions about that. if i were you, i'd start on the vitamin D3 regimen, too -- right away. it's helped a lot of people, and "detoxing" from your current meds is not required. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 good news for you is that a very effective treatment for CH, called BOL-148, is on the horizon, and could be available as a pharmaceutical medicine within a year or two. you might want to sign up on the patient registry here: http://www.entheogencorp.com/community/ would you mind (if you do mind, it's okay) mentioning the name of your doctor at cleveland clinic? there's a "sister organization" of clusterbusters that publishes a list of knowledgeable CH doctors, and i'd like to add that to the list. things will be a lot better for you soon.

this one has been eclipsed by the D3 thing (and it has more warnings about it than the D3), but some people also had very good results from licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 one person, who combined licorice root and D3, reported a very fast remission. never heard from her after that report, so don't know for sure if it lasted.

jim, depends on how long since you were here and what you mean by "natural," but this is recent and pretty natural, and seems to have been quite effective for many people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

wonderful!!!!!!!!!!!

not much to add here to those beautiful messages from jeebs, mystina, and clustermom. thank you for checking back in. i was wondering about you and your hubby, and i'm sure others were, too. gabapentin/neurontin, as mystina said, makes some people feel kind of dopey and/or uncoordinated. one thing about "memory loss" is that once you're told you're going to have it, then all the normal minor moments in the day when your forget something can come to feel like "i'm losing my memory!" the effectiveness of neurontin for CH also varies quite a bit. so he'll have to try to feel his way through this and try not to overreact. i doubt that long-term memory loss is a serious danger. that's a big bunch of meds he's on. partial as i am to the D3 regimen, i don't think i'd add that into the mix, though it is just vitamins at generally "normal" dosages, so you could consider it. some studies have correlated sleep apnea with CH, so a sleep study isn't a bad idea. won't learn anything about brain waves and CH, though, especially if he's out of cycle. so glad you're getting the O2. i'd strongly recommend that you have the O2 supplier set up the equipment and show him how to use it. it's simple, but a lot of mistakes are made, glitches that just add to the frustrations of CH when you least want them. (actually, i'd call the supplier ahead of time and make sure they're bringing the right stuff--sometimes they don't; many suppliers are not really familiar with CH. and you want at least two large tanks ("m" tanks) and at least one smaller, more portable tank (an "e" tank) that he can bring to work, have in the car, etc. since the regulators are different for m tanks and e tanks, it'd be nice if the supplier would give you one of each kind of regulator. (what they'll give you depends in part on how the prescription is written.)) the mask that mystina mentions is called the O2ptimask; you'll find info about ordering it in section 11 of this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 be sure to note in that file the correct way to set up the mask -- cut off the strap at the back (so he doesn't fall asleep with the mask on) and cover up any holes in the side of the mask that do not have a valve in them. you can cover that hole (there should only be one, if there are any) with a thumb while breathing in and then let the thumb off while breathing out, or tape up the hole altogether. point is to be breathing in only the air from the tank and not having it become mixed with room air. you'll also see some mention in that file of the "demand valve" system that most people say is great, though a bit costly (around $350 retail). depending on your finances, that might be worth considering, though if his cycle's about to end, maybe you'd want to wait. finally, i'd be remiss, given your description of yourselves as a couple, if i didn't mention one other study of something that helps for CH, which you can find here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez

Thank you all! Jerry

A hoping-against-hope question: Has anyone here ever busted successfully while on cymbalta? It's a selective serotonin and norepinephrine reuptake inhibitor. TommyD lists in among the blockers, and I suppose there's no reason to think it isn't--like I say, just hoping against hope here. Follow-up questions: 1. Is it likely to be actively harmful in some way to bust while taking this medication: increasing HAs or doing some other kind of bad thing? 2. If not, might taking high amounts of seeds somehow overcome or partially overcome the blocking effect of cymbalta? Do I sound desperate?

Jeebs, I'll bring the fava beans [lip-smacking sound]!

jf' -- glad the D3 seems to be helping! there are Harbor Freight stores in a lot of locations that will rent you O2 tanks, and also sell regulators that will work. check here: http://www.harborfreight.com/store-finder also, you can look up "welding supplies" for your area on the internet. apparently it's very straightforward to get the O2. say you want it for welding. no, you don't need acetylene. most people report that that's all it takes. as you know from past experience, you need at least one big tank (an "m" tank). two is better. they'll refill it/them there. you can find information about where to get a mask and a regulator at the end (section 11) of this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 if you go to a harbor freight store, here's the regulator you'd want: http://www.harborfreight.com/oxygen-regulator-94846.html this regulator does not have specific settings for the liters-per-minute flow rate, as medical oxygen regulators do -- you just turn it up (open the valve) enough that the bag attached to the mask fills quickly with air. Other welding-supply places probably sell a similar regulator. the O2ptimask is a bit more expensive, but very highly recommended. again -- glad things are a little better, and good on you for persisting with finding ways to make it so. diet is relevant to the D3 regimen, since its goal is to shift your systemic pH balance from acidic to alkaline. if you want, i can tell you more about that. and i think some people find nitrites (like you'd get in hot dogs) to be a specific trigger for them.

21+, i know we're all so sorry to read of these ups and downs, and we know the terrible heartache. i just have a couple of observations. when you say you "tried" D3, kudzu, mushrooms, i just wonder what those trials were like. please don't think i'm criticizing -- everyone here has tried lots of stuff. if the D3 regimen was turning his urine purple, as opposed to yellow, i'd say something was wrong there. and it, and the shrooms, can take some time (at least a few weeks on the D3; multiple doses of shrooms), and the shrooms will generally not work if they're being blocked by other meds he's taking. so i'm just asking whether your trials of those things were sufficient to decide they wouldn't work. most of us here have found that the psychedelics do work under the right conditions, so i'd like it if you/he didn't give up on them. sometimes if shrooms don't work, seeds do. his crankiness and refusing to ask for anything is not surprising (and it ties in to my previous point). many, many people with CH tend to just give up at some point--they can't stand the cycles of hopefulness and pain, and their physical and psychological resilience is completely beaten down. often they suffer from a form of PTSD (post-traumatic stress disorder), like people who have been in a war. it takes a lot to keep trying. i had to get past a huge amount of defeatism and crankiness from my daughter to get her to have a proper oxygen setup and try seeds. i am saying again that it's highly likely that a proper treatment with a psychedelic, when it's not blocked by other meds, will work for him. but you might have to help him keep trying. i'm puzzled by what you're saying about the oxygen. a 4-liter flow will not help him. he needs at least 12-15 liters per minute, with a properly used non-rebreather mask. this is essential. many doctors will know that "oxygen" is important, but then won't provide it in an effective way. if he's getting 4 lpm with some kind of crappy mask or cannula (the things that stick into your nose), that needs to be corrected. he has to be able to inhale only pure oxygen, and inhale it deeply and consistently -- that can only be done with high flows and a properly used non-rebreather mask. the first article that's linked to in the file i'm about to direct you to is from a major medical journal and says all that clearly, based on research. if he's not getting 12-15lpm with a non-rebreather mask, you should show this article to his doctors. you will also see in this file what i mean by a "properly used" non-rebreather mask: you have to plug up any valves that let in air from the room when he inhales: he has to be getting pure O2. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 i hope some of this is helpful.

Other minds may race, Jeebs sir, but few as compassionately, wisely, and boldly as yours. What a beautiful thing to have done. And now, new HOPE. Bless you, bless Michael, bless Ron.

just to be clear--the energy drink right at the start of an attack can sometimes be a good abortive. the taurine in energy drinks seems to be what makes them more effective that just coffee. you're enduring a lot with no oxygen and no meds. i really hope the D3 helps you as it has helped others. please be sure to take it in the recommended amounts, and to include the two glasses/day of lemonade/limeade. some people without oxygen breathe cold air from their cars' air conditioning at the beginning of an attack. many here would tell you it's worth it to get oxygen, whatever the cost. without insurance, you can still create your own system without a prescription, using oxygen from a welding-supply store, which many people have done. if you should happen to still have your mask and regulator (and the regulator's the right type), you're not talking about a whole lot of money to rent oxygen tanks. stay in touch.

Good Lord! This is the first thing you need! If you can't get a prescription for oxygen from a doctor, you can create your own using welding oxygen. Yes, it costs some money, by prescription or otherwise, but you really, really, really should no be without it. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 In the short run, have you tried chugging down an energy drink--such as RedBull or Monster; anything high in caffeine and taurine--at the start of an attack? That helps some folks quite a bit. You've got a lot of reading to do now--oxygen, seeds, D3--but it all will pay off for you.

With RC seeds, you are very unlikely to experience even slight psychedelic effects. You can start with a very low dose -- which, since your system is so clean of potential blocking meds, might work in itself -- and then slowly add more if you feel comfortable doing that. You could start with 15 seeds to be almost 100% certain of no effects (I say "almost" because who knows, but I'd put the certainty of no psychedelic effects at about 99.756%) -- many people here take 50 and more and all they get from that, in terms of side effects, is a really good night's sleep (plus help for their CH). I recall a thread here about psychedelics and people in recovery, and I remember one fellow saying that seeds had no effect on his sobriety. Can't say much beyond that, but others might chime in. While you're thinking it over, I'd strongly recommend that you start the vitamin D3 regimen that has helped a lot of people, sometimes very quickly. It's cheap, safe, easy to put together, and probably good for you in itself. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Looks like Ron's gonna have to develop a new pickup move before the next conference.

Potamus, you're already in very good hands here with two of our heavy hitters, Ron and Jeebs. I don't have much to add except hello, and we'll help you any way we can. No question is inappropriate. Here's the file about seeds in general (RC is preferred for ease of preparation and minimal psychedelic effects, if any): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Since you've been active at the other site, it may be silly for me to ask about your oxygen setup, but I'm asking anyway. Many people have found that if the 15lpm, standard-nonrebreather-mask setup is no longer working for them, "upgrades" such as the O2ptimask and demand valve system or higher-flow regulators bring greatly increased effectiveness. And I'm gonna second Jeebs about the D3. We just got another good report at another thread here about what seem to be good, quick results. To repeat the link to that file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 You've been suffering too much for too long; let's put an end to that.

Since FG requests more input, I'll add my limited perspective. Just guessing and conjecturing about things some others know much more about. Hopefully, one or more of those others will post something here that makes wading through my guessing unnecessary. I do know something about what's involved in obtaining funding for drug testing, having observed it first-hand with a drug that will soon be famous, but which has taken seven years to get from discovery to final-stage clinical testing. Pharmaceutical companies are not philanthropists, and there are hundreds or thousands of discoveries out there that could turn out to be goldmines, so they have lots of places to put their money. They analyze these things from every possible angle; they take their time; and they demand a very high premium for putting their money one place instead of another place. Often it's very close to a take-it-or-leave-it proposition--one that leaves the early "inventors," discoverers, and promoters with practically nothing to show for their efforts. This was true in the case I just mentioned, and also in the case of Gleevec, which I mention below. In both of those cases, the inventors/discoverers/early promoters decided to accept harsh terms because they wanted their miraculous drugs to be available to people who were suffering. I had the impression from what Dr. Halpern said at the conference that the folks at Entheogen might be faced with a similar decision, which as I say would not be surprising, and that they might resolve it in a similarly altruistic way. (But again, I might have been misunderstanding what Dr_J was saying, or inaccurately projecting things I know about into what he was saying.) If, as I understood from the conference, there is a German pharma that is very actively interested in BOL, then I just don't doubt that they've run their numbers and they see that they can make a long-term, sustained profit. You can't do that by selling pills at prices that people can't afford (or could afford but won't pay because the cheaper alternatives are okay with them), and that insurance companies or national health programs won't cover. (There was a cancer drug that cost $10,000/month. The Canadian National Health stopped covering it when it was decided that the life extension wasn't worth the cost.) So, I'm trusting that wiser people than me have figured this out. Which is not to say that it will necessarily be cheap. My best friend has a rare form of leukemia, which 20 years ago was a 6-month death sentence and now is treated 99% successfully by a drug with virtually no side effects. His medicine, Gleevec, is about $3,000/month, and he'll be taking it forever. His insurance covers it, and the company that makes it has a financial-support program for people who can't afford it. Would he mortgage his house, or beg, borrow, or steal to pay for it? Is that a real question? Since CH is not the same kind of death sentence, people will make different financial decisions about BOL. And it has not been clear to me that BOL creates permanent or very-long-term (many years) remission (though I might not have been following Dr. Halpern's presentation at the conference accurately, and I guess there really isn't long-term data since the trial wasn't done that long ago). But let's say, to use Ron's highest numbers, that it's $10K per pill for three pills, or $30K, and you are likely to get five pain-free years from it. I guess the calculus is different for everyone, but I'd find a way, by hook or crook, to come up with that $6K/year for my kid. And if the remission is longer, the amortized cost goes down. With Ron's lower numbers, the decision isn't even a question for me. I realize that $6K/year might be out of reach for some/many people, but insurance should cover some of it, and unless things change, if you live in the US, you will be insured. (You've heard of that terrible, awful Obamacare, with its socialist provision that insurance companies will have to cover pre-existing conditions?) (As a completely wild out-my-butt surmise here -- not that the rest isn't -- I wonder whether episodics will be handicapped in comparison to chronics in terms of insurance coverage for BOL. Seems a lot easier to me to demonstrate in trials that BOL works for people who are chronic, but more difficult to show that convincingly for episodics.) A few farther-afield things . . . A side benefit of BOL in the hands of big pharma is that they would have a huge interest, and the resources, to make more sure that CH is properly diagnosed a whole lot more often, since that's the primary immediate market for BOL. Which means a whole lot fewer people getting teeth pulled, being told they're crazy, being guinea pigs for drugs that don't work, and all the other crap that so many here have been through. . . . . The research I've read says that CH is much more common among Caucasians than among non-Caucasians, so you probably can't project worldwide numbers from US percentages, but there are lots and lots of people in the world with CH. . . . . Once my friend's leukemia-"curing" drug was on the market, it was found pretty quickly to also be very beneficial for another kind of cancer (leukemia being a cancer of the blood). The market went from very small to considerably larger, and prices are coming down. Maybe for BOL it'll be migraine, or maybe once LSD is shown to be a potent and overlooked medicine, all sorts of new uses will be found. . . . . The problem some of us have always had in thinking about general CH advocacy/fundraising ideas has been, Advocacy for what? Better diagnosis? More awareness of oxygen? I always remember Dr. Sewell saying that CH is as common as muscular dystrophy ("Jerry's Kids") and MS. It seems to me that a very compelling fundraising campaign to help people with CH afford their BOL could probably be created. Did anyone notice the other day that TV's "millionaire matchmaker" said she had CH? . . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug focused on CH, since clinical trials on people with migraines would reveal the existence (or non-existence) of a much huger market, but would not demonstrate that it works for CH, hence would only mean that CH was available "off label" for CH, which I think would have implications for insurance coverage for CH use. Just guessing here, but if I am understanding this correctly, then some people have already sacrificed a lot of short-term financial gain in order to serve people with CH.

Thanks, Denny! Great to see your latest PF report, too.

Same thing was true for my daughter. She craved limeade during her CH cycles, and never even thought about it any other time.

Do you have a doctor you’d like to recommend to others with CH? At its website, OUCH provides lists of doctors recommended by people with CH. There’s a US list and an international list. You can see them here: www.ouch-us.org/chgeneral/doctors.htm This reference has been valuable here when someone is stuck without a doctor who is willing to prescribe oxygen, and we sometimes hear from people who think they have CH but have not yet been professionally diagnosed. At our recent conference, I talked with the good folks from OUCH about the possibility that our members might have some names to add to OUCH’s lists. Clusterbusters’ leadership agrees that this would be a helpful service. So . . . Do you have a doctor to recommend? Just the name, the city and state, and the name of the practice are sufficient. If so, would you kindly post it here, or PM it to me or to Racer1_NC (that’s Bill, from OUCH). Many of us have had awful experiences with docs; maybe we can save some others from that same fate. Thanks! Jerry

well, 100 is fine, particularly since, as Jeebs says, you usually get more than 100. but figure a minimum of 3 doses at pretty typical levels of say 30, 50, and 50, and you're clearly over 100. it's my understanding that they keep quite well when frozen. so 100 + 50 at www.iamshaman.com, or 200 at www.psychoactiveherbs.com, might be a little safer in terms of a third dose, and it won't set you back too much more than 100. (if you start at 50, which has also been recommended to you, of course the numbers add up faster.) and i'd also second Jeebs's recommendation that since you have some detox time to kill anyway, you should consider hopping onto the D3 regimen right away. might not/probably won't work that fast, but for some people it has.

 Personally, I think the LSA file in the Clusterbuster files section here is more useful. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 The author of the one you were referred to says, >>>I suspect that soaking them in wine for 24 hours produces a lot more LSA than those same seeds would have produced if they were soaked in water for 2 hours.<<<  But there is no evidence now that that is true. Soaking in water works fine. Grind the seeds with a mortar and pestle (or smash them in a plastic bag with a hammer -- just don't use something like a coffee grinder that creates a lot of heat). Soak 'em for 1-2 hours in cold or room-temperature water. Drink. Many people drink the sludge, some strain it out, using a coffee filter. It is highly unlikely that you will experience any psychedelic effects at all with an initial dose of 30 seeds, so that might be where you'd start. Less if you're particularly wary. Re oxygen: A lot of people love the demand valve system, which lets you breathe in O2 as soon as you're ready, without waiting for a bag to fill. Or at least a 25 lpm regulator. Also, the O2ptimask is very highly recommended. In section 11 of this file you can find places to get those things. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

It was a pleasure to meet you and Mj, also, Lee. I hope your drive home was enjoyable. Be sure to check in here from time to time. Jerry