CHfather

Hejada, I think you've received the central advice subscribed to by most people here. RC is more than "interesting": for many people, it prevents not just attacks but whole cycles. To answer your question, the general approach is to start taking it at the very first sign that a cluster period is coming. Some people "maintenance dose" during the year, generally every few months. Some people do it more often and some less often. Once a cycle has started, it takes more doses to break it -- but it will almost certainly do that. Here's a paper on the effectiveness of LSA, which is the active ingredient in RC: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf And here (again) is a specific file about seeds/LSA that Bejeeber linked you to (although, as Renee says, the more you read the better off you are): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Some people think RC is a kind of second-class treatment compared to psilocybin mushrooms, but there is no evidence that that is true. Some things work better for some people. Your challenge will be the "detox" that's required before trying them. To detox you need something that will reduce the pain for those five days (or maybe you don't--you've made it through many cycles already with nothing that really worked, and I can say that my daughter went many years without taking any effective meds at all for her (misdiagnosed) CH). The D3 regimen (which I linked to in my first message to you) has worked well, and quickly, as a preventive for at least 70 percent of people who have tried it. And if you get oxygen, it is almost certain to work as an abortive. In the "oxygen page" that I gave you a link to above, you can link to the formal journal article about O2 effectiveness (which might be most impressive to your doc), and you can see that O2 is the #1 recommended abortive according to European medical standards. Doctors can be incredibly dense about this, but I always figure the more ammunition the better. While there are some people here who think that quitting smoking will help with your CH, I think it's fair to say that there doesn't seem to be any correlation. People quit and keep getting them, non-smokers get them . . . Even with weed, as most people find that it makes things worse, there are some reports (and even one journal article, about one person) that it works as an abortive. Our friend Agent Orange has said it well, that we are "citizen scientists" here, working together to find the best courses of treatment. Finally, you should probably sign up at the site of the company that is trying to bring to market BOL-148, which seems like an exceptionally powerful antidote to CH. They have said they might be doing clinical trials in Europe (and the US) next year, and you might want to be alerted if that happens. http://www.entheogencorp.com/community/

h'88, sorry you had to be here, but you're at a good place. Some home remedies: OXYGEN, the best friend of most CH sufferers -- You gotta get it ASAP: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 D3 regimen -- Has helped a whole lot of people quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 (Be sure to read about interaction with verapamil.) Quickly drink an "energy drink" (RedBull, Monster, etc. -- high in caffeine and taurine) at the start of an attack Melatonin: roughly 9-12 mg. about half an hour before bedtime And of course busting with seeds or other substances. Great results, no side effects (though illegal, and it's best to stop taking verapamil and sumatriptan before you "bust."). A lot to read here on that subject, in the "Clusterbuster files" section. Maybe start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Ask questions; you'll get help.

Spiny, below is the full D3 regimen as summarized by "Batch." You need to do the whole thing to find out whether it's working for you. Also, he says this regarding verapamil: >>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours. Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil. Calcium gluconate is also used to treat reactions to oral verapamil. Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours. Again, discus this regimen with your PCP, neurologist, or cardiologist to work out an optimum dosing schedule.<< Strongly suggest that you read the whole summary at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Also, you don't mention energy drinks (RedBull, Monster, etc.), though maybe you have mentioned them before. Downing one quickly at the first sign of a CH attack helps many people, and can make the O2 more effective. Elements of the D3 regimen: 1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360                       mg/day, DHA 240 mg/day) 2. Vitamin D3 *     - 10,000 IU/day 3. Calcium **       - 500 mg/day (calcium citrate                        preferred) 4. Magnesium        - 400 mg/day (magnesium citrate or                         magnesium gluconate) 5. Vitamin K ***     - 120 mcg/day (2) 6. Zinc              - 10 mg/day Note that many formulations of calcium citrate include magnesium, zinc, and vitamin K. This regimen can be taken any time of the day, but it's best taken with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey. Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc.

wait . . . unlikely means not likely? then yeah, that's what i meant! learn something every day here. (now corrected) eggcellent catch, Bejeeber, eggcellent. i think spiny said somewhere that she was doing the whole D3 thing, but now i figure i'm unlikely likely to be wrong about that too. :-[

Like they said, spiny . . . time for some RC. Grind 'em up, soak 'em in water for an hour or so, drink 'em down. Very, very unlikely that you'll experience anything psychedelic, but lots of people report an exceptionally good night's sleep after a dose (which sounds like it would be much appreciated). Here's one doctor's report on the effectiveness of the active ingredient in RC. He's reporting on a different kind of seed (HBWR), but with the same active ingredient (LSA). Most people here find that RC is easier to work with than HBWR. http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf There are others who share your pessimism about BOL, but the market, worldwide, is big enough to make it worthwhile . . . and while the entrepreneurs behind BOL have bravely restricted clinical trials to CH (rather than including migraine), it is likely that it'll help migraine, too, and that creates a potentially huge market indeed. If there are no stage II clinical trials of BOL within the next year, you can call me a gullible fool. Also, other treatment methods are showing good promise, too. I think there's good reason for hope. But in the meantime, RC (or psilo or LSD) is what there is, so why not go there?? So sorry the D3 regimen isn't helping you. You could PM Batch, who really goes out his way to try to help people adjust it for their needs, and discuss it with him: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=072431262D450

Thanks, AO -- I had your comments in mind when restructuring it, so I'm very glad you approve! Jeebs, do you mean "[e]ggcellent, eggcellent" as in the myriad phrasings of Mr. Burns: http://www.youtube.com/watch?v=irtsm7mLG5k? (Okay, they're not myriad there, but they could be.)

Batch has provided me with his latest version of the D3 regimen, along with a bunch of related notes. I have incorporated that into my D3 file. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

“Immediate Improvement of Cluster Headaches after Sexual Activity” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez

from some quick testing, it seems that anything posted in a category here that says "guests can view" is visible through google, while posts in the two categories that say "login required" ("share your busting stories" and "clusterbuster files") are not accessed by google.

I'm thrilled to see the new search engine here. It will really be helpful -- so much better than what we've had. Thanks to whoever installed it! Right now, however, it doesn't seem to be working -- the response to every query I enter is "No Results." Is there some connection that's missing?

we have had success busting with RC seeds from there. another popular one is www.iamshaman.com. i don't know much about those other vitamins . . . but please read that D3 file i linked you to. and there was a person here who had great success combining the D3 with the licorice root. let us know if you're going to try either or both of these.

Demand valve is the key ingredient, but you also need a regulator with a DISS fitting (Diameter Index Safety System). I am assuming that if your friendly doc prescribes demand valve, that your O2 supplier will know what that is and how to get it to you in functional form. In my post, I was just mentioning that someone here was able to get that, and have it covered -- but I don't really know all the prescribing/insurance ins and outs. There are a couple of demand valve threads at ch.com, and there are many dv experts here, so maybe someone will chime in about the doc/insurance interface. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1311868233 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1311868233 Your concern about taking hallucinogens is shared by many people here. One option is to try RC (rivea corymbosa) seeds, which work very effectively for most people (some experts think they're actually better than shrooms) at dosages that involve no psychedelic effects at all, or at most very, very minor effects. You can start with a low dosage and gradually work your way up, still avoiding those undesired effects--in fact, some people here have reported full relief from dosages that would be considered very small indeed. It sounds like you have not yet started any of the standard meds that can block busting (verapamil, imitrex), so this could be an ideal time to get some seeds and go for it. Here's the basic file on seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Does the virtually everything that you have tried include the "vitamin D3" protocol and the licorice root/skullcap protocol (two different things)? Both have worked really well for a lot of people. The D3 you can do even if on meds; the licorice root is not advised while on some meds. 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

someone here, recently, actually got a demand valve system prescribed and covered by insurance. so if you've got a friendly doc, maybe you want to try for more than the basics. at least maybe a higher-flow regulator (demand valve is highly praised by everyone who has one, or at least everyone i've heard from who has it. you can read about it here: http://www.clusterheadaches.com/O2/index.html) hey, J'FC, what else are you doing to treat your clusters?

Les Genser introduced the licorice root protocol here last year. He recently created a long document describing that protocol and discussing many related issues. He asked me to post it, and I have done so. You can see it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210 Les says he expects to be here himself in the next few days to answer questions.

Les Genser sent me a lengthy discussion of the licorice root protocol and asked me to post it. It's at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210 I'm sorry for repeating this message in several places, but I wanted to cover the relevant bases.

Zac, have you tried the vitamin D3 regimen that has helped many, many people? It seems to me that before you try something like RC (or another psychedelic) that might have problems associated with it for you, the D3 would be a very sensible thing to look into. For most people, it has some positive effect; for some people its effects seem quite amazing, ending cycles quickly, even for people with chronic CH. There have been a small number of people (two or three out of more than 80) who have reported that the D3 approach made their headaches worse, but that effect stopped when they stopped taking the D3 regimen. It's relatively inexpensive and easy to do. Here's a file that will tell you more about it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

couldn't be more grateful to be part of this great community. thanks to all. jerry

janste, I just don't know whether it has proceeded that far yet. My understanding from what Dr. Halpern was saying was that full double-blind clinical trials would be held in Germany and that there might be "open label" trials in the US and elsewhere. I have received no communication from Entheogen that anything has begun, and I would strongly imagine that if it had reached the patient selection stage there would have been some notice about that here at the Clusterbusters site.

Thanks, Ken! So glad to hear you're getting some relief from this. From your post, I'm wondering whether you're doing the whole regimen as it is now recommended: Precise specifics are a bit of a moving target, as experimentation teaches more about what works and what doesnÂ’t, but here are the elements of what is currently recommended for people who are in cycle. 1. About 10,000 international units per day of vitamin D3, taken with food. 2. 2 or 3 calcium citrate tablets per day (at least 500 mg. of calcium), with or without food. These tablets should also contain magnesium and zinc, and they often also contain a small amount of vitamin D3. 3. 2,000-3,000 mg per day of Omega-3 fish oil, with food. 4. Two glasses of lemonade or limeade per day, taken with meals. (Other high-citrus juices are also acceptable, but lemon and lime are said to be higher in citric acid content. Batch has said that he also favors margarita mix.)

janste, it was my understanding, from what Dr. Halpern said at the recent Clusterbusters conference, that second-phase trials of BOL-148 are likely to begin in 2012. If you register at the Entheogen website, they say they will let you know when the trials begin. http://www.entheogencorp.com/headache-sufferers/

Gord, I can only speak to the D3, where the recommendation is to just stay on it, since (unless you accept jimmy7's perspective) it's not harmful and is probably good for you. Some people reduce the amounts (to, e.g., 5000IU of D3 and the rest proportionately), others stick with the whole thing. The level at which possible D3 toxicity sets in is about 40,000IU/day, over several months.

just a small addition to jeebs' advice: do the redbull immediately, then get on the O2. the combo is pretty potent, at least for "beginners." if it works, then stay on the O2 a few minutes (5 minutes is recommended) after the HA has cleared -- helps prevent recurrences.

well, i guess he couldn't cover everything, but the fact that he left out oxygen is pretty creepy. not having heard of doxepin before, i went over to ch.com to see what i could learn there. very little discussion of it there, either. and, isn't the "oftentimes" in what he says here a substantial exaggeration: >>cortical anti-inflammatory steroids will oftentimes stop a cycle of cluster headache within a matter of 24 to 48 hours.<<?

LOL. I tried to explain all that to Ron, but he wouldn't listen.

Good on you for hangin' tough with the doc, Brad. Many people have experienced frustrating slippages between getting an O2 prescription and actually getting the thing set up right. I have some suggestions about that in that O2 file of mine, so you might want to give it a quick read-through. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 First thing I recommend is calling the O2 supplier to make sure they're on the right page about what you need. Often a prescription will be quite simple, something like "O2, 12-15 lpm" -- if you have any wiggle room, try to get the highest flow and the best equipment (e.g., a demand valve system) you can. Be sure you're getting big tanks ("M tanks") and, ideally, also a smaller, portable one for the car (an "E tank"). These usually require different types of regulators (and it's nice to have a mask for each). You've mentioned that you're not rolling in money, so I guess you have to consider whether the costs would be higher . . . just suggesting that sometimes O2 suppliers know what they're doing regarding CH patients, and often they have no clue.