CHfather

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

Well, it's unlikely that anything about the seeds in themselves is going to make him feel worse. There is always the possibility of one or two "post-dose hits" that are more severe, or that come at unusual times. Those are considered a good sign here that things are being shaken up in good ways. (Having oxygen to abort them helps, of course.) Cold water is fine, by the way, if that makes the drinking part more tolerable for him. In that poster I sent you a link to -- http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf -- a core finding is that when seeds didn't work, it was because people didn't get enough LSA. The strength of seeds varies unpredictably. Some people here have obtained good results from a very small number of seeds (10-15), but most would recommend a larger number to be sure there's enough LSA. 25 is probably fine as an initial "test" dose to see how he tolerates the seeds; I suspect some people here would recommend more (30, maybe) to be sure he's getting enough LSA. It's a very imprecise thing -- we all learn from others' experiences, and your caution has merit. Regarding possible nausea, a leading LSA researcher once wrote this to me: >>>Nausea is dose-related, and shouldn't be a problem at the doses needed to treat cluster headache. If it is, then there are a wide variety of over-the-counter nausea medications such as meclizine or dramamine that can be taken beforehand.<<<   I've never read of anyone needing those medications, but it might be good for you to know about this option if he does turn out to be unusually sensitive to RC.

You can find places to buy regulators and masks in Section 11 of my oxygen page. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 The O2ptimask is a bit more expensive, but very highly recommended. Folks here are also strongly recommending a demand valve system, but that's about $350 retail and is probably not necessary right now, in my opinion (a good long-term investment if you have the $, but first it seems to good to know if a more standard system will work). Similarly, you might want to go right away with a 25-or-more lpm regulator, but 15 is probably going to work for him, given his history and the nature of his cycles. If there's a Harbor Freight store near you (there are a lot of them in a lot of places), you can probably get tanks and a regulator there. Here's a link to their "store finder": http://www.harborfreight.com/store-finder/ And 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. Regarding the seeds . . . You're talking about drinking down about two ounces of liquid. It's a quick thing and it's done. You can strain out the sludge with a coffee filter before drinking it (some people drink the sludge, but if you're worried about gagging, you can strain it). Some people can't bear the taste; others don't mind it nearly as much. If he doesn't breathe in the smell, it will be, like anything else, considerably less "flavorful." The peppermint tea method, if the tea is cooled per the directions, does seem to create more of a psychedelic effect, but whether it's more effective as a treatment has not been established. Maybe I'm alone and wrong here, but I'd go with the standard preparation: seeds ground with a mortar and pestle or crushed in a plastic bag with a hammer (not ground in anything heat-producing like a coffee grinder), soaked in an ounce or two of water (bottled, non-carbonated water, in my opinion) for an hour or two, and then chugged down (with or without the coffee-filter straining). Some people wash it down right away with a cranberry juice to get rid of any aftertaste. How many seeds are you thinking of using?

:) :) :) :) Wonderful news. Keep us informed, please. People here can walk you through almost anything you decide to do so it goes as smoothly and effectively as possible, which might be important for keeping hubby in the game.

ting, you could fly to texas and drive with dan and lee ann! or florida, and drive with jeff! or something. what would a conference be without you?

ditto.

Your message is posted, Giselle. Great to have you here.

for the record, there are a couple of photos of a demand valve, along with discussion about it, at the ch.com oxygen page, and demand valve is also discussed in my little page here in the clusterbuster files, with a link to the ch.com page. i suspect that those pages are most often looked at by people who are new to oxygen, maybe considering an O2 system for the first time. it's hard to know how much to push demand valve there since, as was said at the conference and in this thread, they're not cheap and maybe not an advisable early expenditure for people who haven't even tried O2 yet. i don't know how common it is for people to go back to those pages after they've set up O2 and started using it. the search engine at the ch.com site quickly leads to some good pages, with photos, about how the dv works and why it's so good: e.g., http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1226213955 not saying it shouldn't be highlighted more somehow, but i'm just not sure how to do that beyond mentioning dvs to everyone who says something along the lines of "oxygen doesn't work for me" Â

Yes, Maxx, I sat with my daughter (who's older than your husband) through night after agonizing night when she was using nothing to treat her headaches, because doctors had led her down so many blind alleys that she had given up hope. Like so many others here, I completely understand how truly heavy it makes the heart to experience that--and to fear that it will be something that will worsen over time (which, to be honest, it probably will, which is why he has to act now or very soon) and that will have to be endured time after time. But you can change everything by doing things that have been recommended by the good folks here (and, as another source of hope, it seems very possible that it might only be a couple more years before a true long-term "cure" for CH is available). With my daughter, we finally got her a solid oxygen setup (which is what you should do first, or at least very quickly, if you can) and it drained away her terrible multi-hour attacks in under 15 minutes--like magic. Here's more information about oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 She also started chugging down an energy drink at the first sign of an attack, and that helped her quite a bit, especially when followed directly by using the oxygen. RedBull, Monster, or another brand with high caffeine and taurine content are what you want. Busting will stop a cycle and lessen the severity of attacks during a cycle. As Matt (Bejeeber) said, you ought to order RC seeds right now. They're legal to purchase and have in your home, so you're spending a pretty small amount of money for a lawful "insurance policy" if he decides to bust (not legal to prepare and drink). You can get rivea corymbosa seeds from a lot of places on the internet. Two that are commonly used here are www.iamshaman.com and www.psychoactiveherbs.com. You'd probably want to order 100 seeds. More information about the (very simple) method of preparing seeds, and a lot of related info, can be found at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 If you can get him to try a healthy regimen of vitamins and other supplements that has helped a lot of people, often quite quickly, please consider the simple steps described in this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 If you can get him to a doctor -- if only to get a prescription for oxygen -- that would be good. You can find a list by state of doctors who have been recommended by people with CH here: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%208-16-2011.pdf. If there are any near you, you might call and ask whether they will prescribe oxygen for someone with cluster headaches, and of course if so -- and if he can be persuaded to go -- whether you can get an appointment quickly because he's in cycle now. Otherwise, welding oxygen will work just as well. Finally, I just wanted to give you a link to this chart, prepared by a doctor from a major medical school, about the effectiveness of seeds in dealing with CH. This chart is what led me to pursue busting with my daughter; maybe it will be valuable for your husband to see it. It's about another kind of seed, HBWR, but these seeds contain the same active ingredient (LSA) as RC seeds, and many here prefer RC seeds because they're much easier to work with. http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf It's not uncommon for people with CH, who have been so misused by the medical system, to give up and think they have to just try to figure out how to endure the pain. Maybe they can do that this cycle or the next cycle, but the cycle after that and the one after that are going to hit them harder, and they get older and become less resilient, and no matter how "tough" they are, it just can't be endured, and then the dread of the next cycle also starts to take over their lives. There's no reason at all for your husband (or you) to live like that when simple, effective treatments are available to him. If one doesn't work (though it probably will), another will. He has to keep trying, starting now. Thank you for making sure he does.

Woot!

Thanks for checking back in Stephen -- it's frustrating here when people "disappear." So glad your cycle's ended! If it ever returns, you are well armed with information, and presumably you'll be out of school so that busting will a better possibility for you. You can do a lot of educating in your new line of work! Best wishes, Jerry

Noooooooo! I'm down (I'm really down). That's the only Beatles lyric I can think of at the moment to counterpose to your "in!/out," which I'm sure is inspired by the "dontcha know that you can count me out/in" line from "Revolution." Or maybe not, but that doesn't mean I'm not down, 'cause I am. Really down. Next year's too long. Bummer. Jerry

pretty clear she doesn't need any help from me!

takes me right to the correct page (using firefox)

it took me a while to locate the site that ting is referring to. it's in the uk, and the website is www.allsalvia.co.uk i've mentioned in other posts that people here seem to get seeds from many different places, and while there is sometimes speculation about whether seeds from such-and-such a place were high quality (including about seeds from iamshaman), generally the seeds seems to work. we have ordered from several different places, and have had no complaints.