CHfather

[edited: well i see purp is right in top of some of this. nice going, purp!! thanks.] well, RC seeds are very light, so if they are legal to receive, the shipping cost from anyplace would not be very high. you might try contacting the very helpful folks at www.tranceplants.net thay are in canada, there's also, in england, http://www.allsalvia.co.uk is your oxygen flow rate at least 15 liters per minute, and do you have a non-rebreather mask? if yes to both of those, many people find that they need flow rates that are higher than that, or that a top-quality mask helps a lot. you can find more about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 whooligun mentioned some other things that have worked for many people, including licorice root and vitamin d3. you can read more about those things here: d3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 have you tried drinking an "energy drink," high in caffeine and taurine, at the start of an attack? that helps a lot of people (in the US, the typical brands are redbull and monster). hang in there; it'll get better!

Renee, when are you going to get some doggone O2?

We have a friend who is a Vedic (Hindu) astrologer. Asked him to do my daughter's chart. He said, "Boy, her head sure is messed up. Right side." (Yep.) He suggested that I arrange for an ashram to offer up mantras for her. I called the ashram, and the woman said they'd want to do her chart first, to decide which mantra to do. When she called me back, she said, "Poor dear, she must be in a lot of pain." (These shouldn't be taken as two separate confirmations, I suppose, since they both were looking at the same data with the same basis for interpretation.) Another friend of ours can see people's auras quite clearly. (Scoff if you will; if you heard more, maybe you wouldn't.) He told my daughter that she had the second most beautiful aura he'd seen, full of philosophical wisdom. (He didn't say anything like that about me or any of the roughly twenty other people we know who have seen him. That was before my daughter's CH got really bad. I suspect that today he would see the pain, too.) Just data. Who knows? But I don't discount the idea that some cosmic force makes arrangements for when we'll come into the world, what we'll deal with, and what resources we'll have to deal with it all. This gives me no comfort at all in the face of my daughter's suffering, but maybe it could or should. (Since this would apply to all of us, it would mean that we loved ones are where we are for a reason, too.) (And, yes, I think the ashram's prayers did help, but busting's a whole lot cheaper. Those monks don't come cheap.)

Yes, some seeds are prepared and then consumed as a busting element. They generally aren't used to stop an attack (pain relief), but as a preventive, taken over a period of time, five days apart. This file will give you the basics, and walk you through the process, as you request: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 You'll have to get the seeds (easy to order on the internet) and you'll probably have to be off the meds your doctor has given you for five days. Buying and possessing the seeds is legal; consuming them is not. After you've looked at that file, get back to us. Plenty of folks here who will help you.

One thing to note about this, Ricardo, is that while the article was first published online in 2005, it was originally published, in the same journal (Headache), in 1983. I'm gonna suspect that Flash is right, and that the fibrosis risk was considered too great. (Also, lisuride did poorly against CH in one trial, in 1989, which probably also discouraged further investigation.) On the other hand, here's one positive take on methysergide--for people who are episodic--from a 2011 headache handbook (no mention of lisuride in the book at all, as far as I can tell). I can't copy the passage, so here's the link, which I hope will work (It's from Google books, which is a great research resource.) http://books.google.com/books?id=kBgBiLdLSTMC&pg=PA348&dq=methysergide&hl=en&sa=X&ei=i3s4T5K6HoXw0gGf0-D0Bw&ved=0CFkQ6AEwBw#v=onepage&q=methysergide&f=false

Thanks for taking the initiative here, Ricardo! (And I agree, Dr_J seems like a good guy who really cares about people with CH.) [Modified in keeping with subsequent posts.] At least someone is likely to be financially committed to bringing BOL to market, and maybe that's the best we can hope for, which is not nothing--it's far from nothing. As for starting it on a shoestring, Ron . . . My friend's company, which currently is working to bring one anti-depressant drug to market, had to raise $18 million just for Phase II clinical trials. (The average per patient cost for a Phase II clinical trial in the US in 2011, I have read, was about $36,000.) Next for my friend's company, if the Phase II trials seem to show that the drug works, is another phase (IIb or IIIa, I'm not sure which), which will cost millions more. http://www.naurex.com/media/Naurex_Series_A_financing.pdf Then, think of yourself trying to get an LSD-based drug like BOL through FDA approval, and then making sure you have a market by educating doctors so that when they see -- and recognize! -- a CH patient, they know there's a drug out there for them. My gosh, look at how many docs don't even know enough to prescribe oxygen, if they even know enough to diagnose CH! (And of course there's all the cost of creating a manufacturing facility, giving the VCs a huge return for their risk, etc.) We've discussed all this before. BOL's "Phase I" clinical trial was small and open-label (nobody got a placebo, if I'm remembering correctly). Didn't Goadsby even suggest that since it hadn't ruled out placebo effect, it was not fully convincing to him? What if (from the perspective of potential investors) it doesn't turn out to show compelling effects against placebo in serious trials? That's a lot of money down the drain, and a drug you can't sell. Or what if, as Flash suggests in another thread, it causes unacceptable side effects when used long-term. We have no reason to expect any of that, but if you have lots of places to invest, the risk is not inconsiderable. Etc. etc.

The only two I know of are the woman on TV who is the "Millionaire Matchmaker," who has said she has CH, and the former NBA player Kendall Gill. It's been discussed here that the well-known headache doctor, Dr. Kudrow, is the grandfather (father?) of actress Lisa Kudrow.

Rivea corymbosa (RC) is the preferred seed here (by most). Easier to work with than Hawaiian baby woodrose. Fewer seeds needed than straight morning glory, and considered by some to have less bad stuff in the hulls. All in that "LSA" file. Several of your fellow TXans here growing 'em, who would be happy to advise you if you need it. Thing about the RC is that you could get 'em right away and give it a shot. RedBull works quite well for a lot of folks (for that matter, so do "caffeine bombs," sometimes). It's generally believed that the high caffeine and taurine content in both is what makes them work -- Not saying that for you it isn't some other factor that is in Monster but not RedBull. Appreciate any insight like this from you about things that work for some but not all. Yes, and even lithium on its own. Just has nasty withdrawal symptoms (those rebound headaches), and so is generally just recommended for chronics. Which doesn't mean a doc won't or shouldn't try it with a person who's episodic when other things don't work. Plenty of discussion here about marijuana. Doesn't help for many but does for some. Very glad you're one of them. BTW, the search engine up top is quite powerful, so if you're interested in what's been said in the past about something, here and at clusterheadaches.com, keep it in mind. (I just looked up 5-htp. Not much there--nothing, really, except I see our man Jeebs has used it as a sleep aid.)

You know, I'm thankful to Tommy every time I come to this board -- but until today I have to admit that it never occurred to me how much experimenting, trial and error, and commitment to collaboratively figuring things out went into all this. Courage, too, and generosity to all of us (and our loved ones) who have enjoyed the benefits. So now I'll be thankful to you Bobb, and everyone else who laid the foundations for this. Can you give the names of any of the others who participated in those "early days" (if not, I understand)? One question; sorry that it's kind of convoluted. In that old FAQ, there was a lot of discussion about soaking methods that seemed to affect the strength of a dose of seeds, and I gathered that it was saying there that if the same amount of seeds were soaked in water and in wine for the hour to two hours, the amount of LSA produced would be about the same, but soaking for longer times would produce more LSA, and that a longer soak in wine was particularly effective at producing more LSA. (Not sure I got that right, but it isn't essential to my question anyway(!)) It's been my impression from something I read that wine and water as soaking agents both produce about equal amounts of LSA from the same quantity of seeds in the hour/two hour soak, and that longer soaks produce no, or practically no, increase in the amount of LSA (basically, that most of the LSA is hydrolized by water in the hour/two hour soak, and that no other agent, such as wine, or no longer time period, is actually going to produce significantly more LSA). Am I right in that understanding? Or wrong? I had thought that a lab actually had been hired to test all that, and that was the outcome: that a one/two hour soak in water produces just about as much LSA as you're going to get, no matter what else you do.

So, you could consider using seeds, which are just as effective for most people as psilo. Legal to buy and possess, inexpensive, easy to prepare, generally non-pyschedelic at the levels used for busting, illegal to drink once prepared. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Have you tried RedBull, Monster, or some other energy drink as an abortive? Drink one down at the first sign. Helps a lot of people. Melatonin? Dosages vary, but 9-12 mg isn't rare, and I know some folks take 15 or more for extended periods. Melatonin might interfere with busting. Since you're off meds, you're also a candidate for the licorice root protocol, if that appeals to you. Also reported helpful by a lot of people. Some have used licorice root along with the D3 protocol, some have just used one or the other. This might go without saying, but I would think that given your unusual medical conditions, such as the high stroke risk, you might want to check with your doctor before starting anything. Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 D3 already linked up above. Yeah, those pain meds (norco and fioricet) are not likely to help you. The other meds won't help your CH, either, but maybe they're prescribed for other reasons. If you decide to bust and you are taking any meds, you will want to check this file to see what might interfere with busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 I hope you'll have an oxygen-related appointment soon. If O2 worked sometimes in the ER and not other times, you might want to try to get a higher flow rate than the 15 that's usually prescribed. But in the ER, the results might have been more related to whether the folks there knew what they were doing or not (at least 15 lpm, proper use of a non-rebreather mask). I think virtually everyone here would agree with Ron that you have many options before agreeing to surgery.

Chris, the most basic of basics: Were you prescribed oxygen? If not, that's something you want to deal with promptly -- it's a very effective abortive for 90% of people with CH. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 Are you in cycle now? What was prescribed to you/what meds are you taking? There are a whole lot of files over there where Ron pointed you. Since no matter what you answer to my first few questions above, I'm going to suggest that you consider busting (which will require you to "detox" from most CH meds) and the anti-inflammatory "vitamin D3" regimen (which doesn't require detoxing), here are those files: Overview of busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 D3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

thebb, i gotta say that this faq seems to me to contain some questionable information. i don't claim to be as expert as many people here, but i know for sure that the recommendation, >>>4 to 8 Rivea seeds should be the range people treating cluster headaches should remain at least for the first dose<<<, is way out of whack with what people have been told -- and what people have done -- ever since i got here 16 months ago. the smallest first dose i've seen anyone take over the past 16 months was 10; the most commonly recommended is about 30, and i'd guess the average is closer to 35. not one of those people has reported any psychedelic effects. tommyd, who acknowledges that he is very cautious about what he says, recommends in his "LSA" file that "cautious clusterheads" might want to start with 8-10 seeds. am i wrong in thinking that 4-8 is likely to be a waste of time, followed by 5 days of waiting for no good reason? a lot of the content of this faq relating to effects also seems kind of over the top to me, given the very mild effect that people actually experience from RC. i understand the need for caution and warning, but this seems to me that it can scare people away without any real basis in actual experience. similarly, i know the taste is bad, or even awful for some people . . . but chocolate syrup washed down with orange juice??? i notice that somewhere in here it says that RC "looks promising," and i also notice that a lot of it was prepared by "TD." is it possible that this is at least in part an early treatment of the subject by tommyd, one that could be supplanted as a reference, based on subsequent experience, by this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 and, just for my information, i don't know what this means: >>>Many have found that drinking a BUNCH of Orange Juice the day after really helped the hangover feeling go away.<<< i just don't recall anyone here talking about a "hangover feeling" the next day -- i'd say most folks report feeling refreshed after, finally, a decent night's sleep. is a "hangover feeling" something that's actually common?

RC (rivea corymbosa) seeds, which are just as effective as mushrooms for most people, are legal to buy and possess. What is not legal is to consume them. This means that in order to be apprehended you would practically have to invite a law officer to watch you drink them and then get rushed someplace for a very, very thorough blood test to detect the trace amounts of LSA in your system. RC seeds at the levels needed to treat CH never, or very nearly never, have any psychedelic effects. They work. They're cheap. The preparation is simple (grind 'em up and soak 'em in water for about an hour). To use any psychedelic for busting, you have to be "detoxed" from your CH meds for 5 days. The Hopkins docs did prescribe oxygen, didn't they? If not -- or maybe even if they did -- see http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 An inexpensive and easy anti-inflammatory "vitamin D3" regimen works for a lot of people, and you can start it right away. I like spiny's suggestion of looking at the info in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1328846357 You'll find links there to learn more specifics about seeds, D3, and other stuff.

Mrsg posted this message at another thread. In order to try to keep everything in the same place, I have copied it and my reply over to here. [Hello, im in a horrible cycle thats been going on for a year this march,can someone tell me how many RC seeds I should use,exactlly how to use,and what to expect! Thank You! CryPAIN OH GLORIOUS PAIN!] Mrsg, you'll be a lot better off if you stick with the thread you started at "Share your busting stories." That thread is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1328846357 You have pretty-lengthy replies there from several people. If you read the file I linked you to there, you'll have information about preparing seeds. You'll also see information about where to get seeds. I think most people would recommend starting with about 30 seeds. What you can expect is probably no psychedelic effects and very possibly a good night's sleep. You might have to expect what we call "post-dose hits," or "slapbacks," the next day or two. These might be more severe than what you are used to, or come at different times, but they are interpreted as a way to know that the LSA is working. They rarely last more than a day or two -- and they don't always happen. By the way, Mrsg, Les Genser is a very, very smart person with a deep commitment to understanding CH and helping people who have it. However, I just can't agree with Les about the vitamin D3 regimen -- not because I have the scientific knowledge to take a different position, but because we have seen too many people, here and at the ch.com thread, get startling results from it. Not everyone -- and in a very small number of cases, there are reports of CH attacks worsening for a while, until the person stopped taking the D3 protocol -- but enough people to make me believe it should be recommended as something to consider. Also, you do not have to be off triptans to try it and possibly get results from it, which means it is something you can try right away. You do have to pay attention to when you are taking it if you are taking verapamil: that's all in the file I linked you to.

mrsg, please see Tuckerman's post, and mine, over at the thread you started.

I think it's Dr. Halpern, Entheogen, and its current or future investors that we need to be begging. In that ABC special that Ajax posted, the last sentence is something like "Halpern is hoping to start large-scale clinical trials [of BOL] soon." Let us pray. At the conference, he said he was hoping that the US trial would be "open label," in which people would just get BOL -- no placebos. It wouldn't prove as much as a rigorous trial, he said (rigorous double-blind ones would be conducted in Europe), but it would get relief to sufferers. Let us pray. I sure would like to hear something about what "soon" might mean, and whether that open-label trial is likely.

Have you signed up at http://www.entheogencorp.com/community/ It's my understanding that the people who are signed up there will receive notice when clinical trials of BOL begin.

I'd say that www.iamshaman.com is the most-recommended site. www.psychoactiveherbs.com is one that I trust. I think seeds bought from almost any site are likely to work, and the "floater" test (put them in a glass of water and discard the ones that float) probably insures sufficient quality. Mrsg, seeds are in general just as effective as psilo. This varies for some people, but if you were willing to try mushrooms, you ought to try seeds. Some experts here have even said that seeds are probably overall more effective in more cases than mushrooms. You would want to order rivea corymbosa seeds, which are referred to here as RC.  Here is a poster created by a medical school professor showing some results of busting with another kind of seed that also produces the ingredient you'd be looking for, LSA. (Those seeds are harder to work with than RC, which is why RC is recommended.) http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf Here is the first file you should read. It will give you some background and tell you about the very simple way that seeds are prepared. The author recommends a smaller number of seeds for a first dose than most here would recommend -- but if you decide to proceed, the very good folks here will help you along the way. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Since you are using imitrex, it will be strongly recommended that you should "detox" from it for five days, since it interferes with busting (and the tablets, as you say, sadly probably are not helping you much anyway). I would urge you to seriously consider starting right away the anti-inflammatory vitamin D3 regimen that has helped lots and lots of people--even ended a lot of cycles. If it helps you, it will make it much easier for you to detox. You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 I would suggest that you at least glance at/scroll through the thread at ch.com where the "D3" approach is discussed. There's a link to it in the file I just listed above. It's way too much info for what is basically a simple plan, but you'll see a lot of encouraging successes. As you have seen, the great people here will help you and support you. It's what they do. They've been where you are. Stick with them.

Hey Scott. It's very good of you to care so much for your brother. Many of us here know the pain of seeing a loved one suffer so much. I don't know whether busting would work for TN. Maybe others do. I don't recall anyone here with that condition. We did have a fellow with postherpetic head pain of a different form (hemicrania continua), and busting wasn't the answer for him. BUT about 95 percent of people here had some form of misdiagnosis, often for years, before it was realized that they had CH. My daughter was misdiagnosed for years as having TN (the "funny" -- not really funny at all -- thing about it is that a diagnosis will often tend to stick even if the symptoms don't match it). The "claw" and the "demon" sound like they could be CH. So somehow getting a better diagnosis might lead to different treatment. Maybe you could look at this wikipedia page and ask him about the symptoms: http://en.wikipedia.org/wiki/Cluster_headache TN, as I understand it, has quite different symptoms. I did a lot of reading about TN when that was my daughter's diagnosis (it's one of the ways we figured out that she didn't have TN), and there seem to be a lot of potentially helpful treatments for it . . . but that's an issue that's really outside our scope.

No idea whether this adds anything, but I often think about Dr. Sewell's observation that people with chronic CH also have "cycles" within their chronicity. I will post his whole blog post on the subject here, but to see the charts, you'd have to go to http://www.clusterattack.com/blog/do-chronic-patients-cycle/ >>>>Do chronic patients cycle? Jürgens (2010) Ten years of chronic cluster–attacks still cluster Commentary–Ten years of chronic cluster – attacks still cluster Tim Ju[ch776]rgens is a post-doc working for Arne May at the Department of Systems Neuroscience, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany—and by “post-doc”, I am using academic slang to mean someone who is in the first few years after receiving their MD, but before their first official faculty position. Despite his junior status, Dr. Ju[ch776]rgens has been remarkably prolific in the field of cluster headache research these past few years. Last week we looked at what he had to say about impairment in cluster headache; this week we will examine another paper he wrote recently about periodicity in chronic cluster headache. It’s Ju[ch776]rgens-Fest 2010, woo-hoo! We all know that cluster headache is a circadian-linked disorder, with attacks occurring at much the same time every day and—even more interestingly—much the same time every year. Some people find that their cluster periods occur twice a year, in spring and autumn, for example; I have one patient whose cluster periods occur for one month every seven months, precessing around the calendar and occurring at a different but predictable time each year. What about chronic cluster headache, however? One tenth to one fifth of cluster headache patients don’t have episodic attacks with clear cluster periods; they have attacks year-round. Do these vary rhythmically as well? I think—yes. For one thing, I observe it in my own chronic cluster headache patients. For another, I think that the distinction between chronic and episodic cluster headache is artificial. I believe that cluster headache is like epilepsy—just as anyone can be provoked into having a seizure under the right set of circumstances, so anyone can be provoked into having a cluster attack. Just as there is a “seizure threshold”, that can be raised or lowered with the appropriate environment, biochemistry, and drugs, so there is a “cluster attack threshold” that rises and falls, sometimes to the point where attacks will occur spontaneously. Some patients can tell when they are in a cluster period because of some indefinable subjective change, some “penumbra”, even if their prophylactic meds are working and they are not even experiencing any attacks! According to my view, chronic cluster headache patients are merely those unfortunate few whose cluster attack threshold never rises to the oint that they cease to have spontaneous attacks. Others (Sjaastad) have argued that this may be true for secondary chronic cluster headache (the form where episodic has evolved over time into the chronic form), it’s not true for primary chronic (which started that way to begin with), which doesn’t show a circadian link. What’s lacking is hard data either way! So what should fall into Dr. Ju[ch776]rgens’ lap but a patient with cluster headache—starting at age 51, diagnosed at age 54, and converting to chronic at age 55—who had meticulously recorded every single cluster attack that he had for the next ten years in electronic form; 5447 in all. Only in Germany! I dream of having a patient like that. I always hand out headache diaries, but I can count on one hand the number of times I’ve ever received one back filled in. Dr. Ju[ch776]rgens then conducted a “spectral analysis”, which is a advanced mathematical technique for analyzing phenomena that occur in cycles by looking at them in terms of superimposed frequencies. What he found was the following: His patient had an average of 45 attacks a month, lasting an average of 23 minutes each (treated). The frequency of attacks DID vary cyclically, with one peak occurring every 13 to 15 months, and smaller cycles occurring every 2, 4, 6, 7, and 9 months. There was also a daily cycle, which (oddly) corresponded better with 24.5 hours than 24. Attacks were slowly diminishing as the years went by. Why is this important? As Dr. Ju[ch776]rgens point out, this one case confirms scientifically what has long been suspected—that chronic cluster headache patients cycle also (although it does not address Sjaastad’s theory that primary chronic patients do not). Practically speaking, this means that if a prophylactic medication stops working with a chronic cluster headache patient, it’s a mistake to conclude that it’s stopped working and switch to something else. It may just be that the disease is in an upswing and will get better in a few weeks, in which case it is better to stay on the medication and wait it out.<<<<

well, i think i read in a different medical journal that based on careful study, most scientists were now recommending against poking pepper into one's own eye , but beyond that, i have no idea what the pepper is doing in this abstract. testing some circuitry or something, it seems.

Sweet! Thanks, Brad -- always nice to put a face (or some faces) with a name.

I have NO idea what this means or why it's important, but it's a new study so I figure it's important to some researchers someplace (or maybe to Ricardo or some other very dedicated thinkers here). http://www.ncbi.nlm.nih.gov/pubmed/22289052?dopt=Abstract Last sentence: "Our findings that TRPV1 is inhibited by the specific antimigraine drug sumatriptan, and that TRPV1 channels are functional in neurons projecting to cerebral dura suggests a specific role for these channels in migraine or cluster headache."

i'm down with a pledge for that purpose, just because it absolutely seems like the right thing to do. however, i don't imagine that any favorable legal precedent could be established. the law's the law, and judges can't go around changing it for special cases. i imagine a lawyer would try to create a "jury nullification" situation, in which the jury was so sympathetic to the accused person that it wouldn't apply the law to him/her (or a prosecutor wouldn't want to take the case to trial), but that doesn't create a precedent. that's just my guess. i'm usually wrong.Â

d'head, maybe you could start a new thread, so we're not answering you all over the place. (to do that, go to the home page of this message board, click on "general category," then click on one of the categories ("share your busting stories" is maybe a bit more private, if that matters to you), then scroll to the bottom and create your message in the blank template there.) very good info from purp here, but if you get a lot of "advice," which you probably will, it'll be good to have it all in the same place. (there's a small additional suggestion, and a question, from me over at your post in the "natgeo mushrooms" thread). your husband will get better, and you will suffer less, too. people here will make sure of that (many of us are supporters of loved ones with CH; in my case, it's my daughter).