CHfather

This is just a thought based on one person with CH who uses Trader Joe's brand (Trader Darwin) chewable melatonin. That person takes one pill at night when out of cycle and two when in cycle, and sleeps very well. Each pill is .5 mg (yes, .5 mg). A lot of studies have shown that melatonin is very poorly absorbed in tablet form, which apparently is, or might be, what makes the chewable form more effective. As we all know, what seems to work for a while doesn't always have lasting efficacy, or doesn't apply to everyone, but I pass this experience along in case it's worth anything. I see that chewable forms are available in higher dosages at several places now (Walmart, Walgreen's, etc.)

There's always discussion here about best suppliers, and I don't think there's common agreement, but I would say the two most recommended have been www.tranceplants.net and www.psychoactiveherbs.com. (It seems that the third place that used to be most recommended, iamshaman.com, no longer carries RC seeds.) Dosage recommendations have also evolved over time. It used to be that a small dose of 10-20 seeds was recommended to start with, in order to check for stomach upset and to be careful about tripping. These days, we have seen plenty of evidence that at least 35 seeds can be taken by 90-plus percent of people with neither of those effects. Most people jump up pretty quick to about 60 seeds on a second dose, still without psychedelic effects or nausea, and some go higher still. The key thing is to get above a threshold level of the ingredients in the seeds, which is LSA, and I believe that 35 good seeds will do that for people who are episodic, but more is of course more certain to do that. Point of this being that you would want to buy at least 150 seeds to have enough for three "standard" doses, and 200 or more would be better. Preparation is simple. (Drinking the preparation is unlawful.) You grind 'em up in a mortar and pestle and soak them in a couple of ounces room-temp tap water or bottled water for an hour or two, then drink. There are variations on the preparation and consumption, in part because many people find the taste horrible, but those basics will extract all the LSA. Many people "float test" them first, to be sure the seeds they are using are viable. Simple test that takes a couple of minutes at most. We can tell you about that when you get there. Not entirely sure what you're asking here. Most people wouldn't recommend taking them at the same time, but otherwise there are no incompatibilities in terms of busting. RC seeds are an excellent busting agent. If you go this route, let us know and we'll be sure you do it right. Five-day wait between doses is required, just as it is for paper and psilo.

didgens, I hope this method will work for your son and for anyone with CH, or even for the 4 out of 5 that Dr. Shevel is reporting. In the meantime . . . It is a little disconcerting that nasal imitrex didn't help him at all. I've read back through your posts, and I'm perplexed . . . Does he have oxygen? Is he trying energy drinks and/or melatonin? Is he doing the D3 regimen, or licorice root? You talk about planting RC, and you ask about busting advice, but I don't see it indicated that he has actually tried busting. For that matter, why not step up to injectable imitrex, which seems to work for practically everyone and seems less objectionable in your son's case because he has so few attacks to abort? Or another medical pharmaceutical treatment -- verap, pred, etc? I'm not proposing any of these things instead of the surgery. That's up to him and you. Like I say, just talking about things you/he might consider while he's suffering right now. I can see why, with so few attacks per cycle, he might not have acquired oxygen (though it seems like a good idea now, as the frequency of his attacks has increased) or tried busting. Energy drinks are a quick and easy go-to for aborting (if they work for him), and supplementing with melatonin is easy enough to try. Licorice root (which you mentioned in a post or two) could perhaps be an effective short-term abortive/preventive, and the D3 regimen could be an ongoing thing for him and perhaps prevent or reduce the severity of future attacks (as preventive busting might also do). (It's rare for people with just CH to experience auras -- very few do; it's mostly a characteristic of migraine. But that might not be what your son was describing . . . or, he might be one of the few.) Â

DT, you can also use easy-and-legal-to-buy, easy-to-process, inexpensive, usually-non-psychedelic rivea corymbosa seeds if you can't get shrooms or paper. RC seeds work for most people, and for some, they work even better than the other two substances. If this is a route you might want to go, feel free to ask.

yes.

Welcome, newGuy. Sorry you have to be here. Hopefully you know that the most important first step is to get oxygen. http://clusterbusters.com/?page_id=77  Maybe the second thing, since it's simple, cheap, and often effective, is to give the D3 regimen a try. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804   Busting is, of course, very highly recommended (see the various numbered files at the top of the "ClusterBuster Files" section of this board).  You won't find a better resource than the good, experienced, generous, caring folks here -- so ask questions. (Maybe start a new thread, if you think you'll be around for a while.)

The obvious question, kika -- Are your seeds fresh? Even if they are, maybe you should order some from a different vendor, since batches vary. Are you float-testing them? If you're not getting any undesirable psychedelic effects from 50, maybe take a substantial jump (to 65 or 70 or even more) to make up for possible low LSA content in this batch? Are you crushing them the same way this year as in the past (I'm among those who think that they shouldn't be ground in anything potentially heat-producing, like an electric coffee grinder)?

Monster Hitman Sniper and 5 Hour Energy both have a lot of caffeine (200 mg). You can see a whole list here: http://www.energyfiend.com/the-caffeine-database I haven't found one that lists both caffeine and taurine. I guess you could go with the highest-caf ones and then look up the taurine separately.

At this site, you can find a lot of recent (and older) reports about CH research. I think this link will work to take you to the CH-related part of the site, although maybe you have to be a subscriber (free). http://www.docguide.com/search/apachesolr_search/cluster+headache?hash=79f19e18&eid=33488&alrhash=31fc8c-8911591a98c20cef4b6879f9491a0f46 If not, maybe you can get in from here: http://www.docguide.com/neurology/popular/popularnew and then type cluster headache into the search bar.

dt, answering your core question as soon as possible, as you asked: SPUT is a method for aborting CH attacks; the bigger dose (followed by another one in five days, as you say) is to end a cycle (and then later as a preventive to keep cycles from returning). Typical dose is 1 - 1.5 grams dried, but some people who are more comfortable with the effects will go higher, aiming for a quicker knockout of the cycle. Others will have advice for you about preparation and other issues. I just wanted to get you the basics, which is all I know. Ask more and the great, knowledgeable people here will answer.

 Well, he's probably going to be really happy when he gets that mask!! Just to be certain -- often when cannula are delivered, the oxygen mechanism that comes with them is a concentrator, which is a machine that makes O2 from room air. That's not a good way to get O2. Does your dad have a tank of oxygen, not a concentrator?  That's a fairly low dose compared to what many people with CH take (as much as 20 to even 30mg). He might want to try going up a bit. (Or not -- even 6mg is a high dosage compared to what's typically recommended in the medical world. However, he's just taking it during his cycle, so I suspect there are no substantial risks.)  I think most people would agree that if he seems to be getting near the end of his cycle and he's controlling the pain well enough with what he's using, then maybe detoxing and busting is not the best course. But I think he should surely consider preventive busting between cycles from now on -- and he should probably get on the D3 regimen and just make it part of his life. Bet his doctor would even agree with that (though I guess most doctors think -- wrongly, in my opinion -- that 10,000IU/day of D3 is a lot).

Wonderful to hear this! Bacon often has MSG (monosodium glutamate) in it. You're not the first person to find bacon to be a trigger (some people think it might be the nitrites). Keep an eye out for (avoid) foods with MSG.

SJ, are you going to get the non-rebreather mask from his O2 supplier? He should definitely have that right away. What is he using now -- those things you stick in your nose (cannula)? They will barely help. Most people here who use the O2ptimask says it's twice as good as a standard non-rebreather, but it'll cost something and take some time to get that. You can order it here: www.clusterheadaches.com/khxc. Higher flow rate is a good thing. But you will probably have to order that regulator on your own. When you're seriously thinking about doing that, check here for some guidance -- different kinds of tanks require different kinds of regulators, so you want to be sure to order the right kind. As Jeebs said, it's generally believed that Depakote will block busting, so he'll have to be off that for about five days before he drinks any special tea. At his advanced age (I'm a lot older than him, so I can say that) he might also be taking other meds that will block busting. Read this: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 If he's afraid of tripping from shrooms, you might use rivea corymbosa seeds, which work very well but have no trip effects. Let us know and we'll give you some ordering advice. Meanwhile, is he downing an energy drink/energy shot at the first sign of an attack (or at least a strong cup of coffee)? Works very well for some people. And what about melatonin at night? Start with 6-9mg. and work up from there. And of course the D3 regimen, which has helped so many people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Please keep checking with us as you/he proceed in any direction. PF wishes to him. Lucky he's got you!!!!

I know you don't believe in Facebook, CHS, but at Gupta's FB page people can post whatever messages they want. There's one there about CH that was just posted a few days ago. You could post about CH, or you could post your request at your blog that he interview you on CNN. Some days I troll (no other word for it) sites where people mention CH to try to give them correct information on my own and refer them here and to CH.com. That might be another way for you to spread your word. I've also written to a couple of prominent TV and media doctors whose coverage of CH was woeful. Never heard a word back; never got a correction of the bad/partial info they were spreading. Gupta has covered CH on TV in the past (2010), with his usual mix of accurate and inaccurate reporting. http://www.cnn.com/video/#/video/health/2010/01/06/gupta.cluster.headaches.cnn Maybe he increased awareness, and maybe some people got a better diagnosis or learned about O2 (the primary subject of his coverage) as a result. All awareness is good, so I wish you well, of course. But since Gupta is aware of CH, I guess we have to assume that he has his reasons for not covering it more frequently (no news, maybe -- the 2010 show was about O2 as a "new" treatment for CH -- or not that important to 99% of his viewers).Â

I'm hoping everyone who can will make a contribution, however small, and will "like" the site (www.indiegogo.com/projects/hope-to-end-the-horror-of-cluster-headache?c=home) or otherwise spread it through social media. Maybe it's a long shot, and I can't say it hasn't been extremely frustrating watching the ups and downs of Entheogen, but it still seems to me that we gotta keep trying to make BOL a reality . . .

You've already thought of this, I'm sure. Remember to bring some strong energy drinks on the plane. (I think they might sell RedBull on the plane, but if you can pick up something stronger at an airport concession, such as a Monster or RockStar with more caffeine and taurine, that might be better.) Just realized it's probably too late for this advice, but if you have RC seeds, a few ground up ones under the tongue are reported to work well, and if you also wanted to dose, RC would affect you least. And of course since they're legal, you'd have less fear about that. From the posts I've read, a shroom sput almost certainly won't cause any tripping. Here's a post from Ricardo about one possible way to prepare one: >>What I bet would work really well would be to make your mushrooms into a tea using as little water as possible. Then put the tea into a small tray and use really low heat and (maybe some silica gel) to evaporate all the water out of it. (not that hard, done it a few times). What you're left with is a tarry black goo, and if SPUT is working for you, I bet scraping up just a little and putting it under your tongue would work pretty well.<<

Great point, Racer. I'm embarrassed that I didn't think about that. There's some info about bubblers/humidifiers (including a place where one can be ordered, if an O2 supplier won't provide one) on page 14 of the Oxygen Guide under the MENU tab on the left of this page.

jimmy, of course you should see a pulmonologist. Maybe (probably?) it's not a lasting thing. Do energy drinks/energy shots (or coffee) work for you, so you might at least reduce the time on the O2? Are you doing the D3 regimen? Melatonin? Licorice root? Of course, busting (M or seeds), if you're detoxed for it. And heck yes (in my view), if you need to go some conventional meds route to prevent/abort for the rest of this cycle, then that's what you gotta do. (A long time ago you asked about sleep apnea and CH attacks. There is a connection. Have you had that checked out/dealt with in some way?)

What Jeebs said -- O2, either via welding oxygen or via prescription in one of the ways I suggested. You might want to stick with that plus your prescribed meds to ride out this cycle, also including energy drinks, melatonin, the D3 regimen, licorice root, or whatever else will help. RC is not likely to be miraculous for you (just as psilo is not likely to be, even though it worked so well for you the first time), so it seems like you'd have to endure a lot of CH pain over the long run if you dropped your meds in order to try busting and nothing to replace them. But O2 + energy drinks + those other things I mentioned, none of which will block busting, could enable you to reduce the frequency/severity of your attacks enough that you could drop the meds and bust. My two cents.

I can't tell you how much this makes me feel like screaming and crying. I've ranted so many times that I don't have it in me. How can these feckers prescribe things with nasty side effects and refuse to prescribe oxygen, more effective with no side effects. And, yes, at least the imitrex will probably block busting. If you're willing to fight for the O2, I have some suggestions (the simplest of which is to find a doc who will prescribe it -- one person here called a bunch of walk-in clinics and just asked whether they'd prescribe O2 for CH). You can look on this list and see if there's a recommended doc near you: http://clusterbusters.com/?page_id=455. You can get welding oxygen and set up your own system, which is something many people have to resort to. Or go back to your doc armed with info and demand O2. Let us know which if any of these options you'll consider, and we'll follow up with you.

Very, very best wishes for great success, Elly.

Tyke, the only "good" thing you can say for your docs is that they, like other humans who don't have CH, really don't understand the pain you're experiencing. As we've discussed here, no one really can. They can read about it, but if they haven't felt it, they don't really get it -- not even close. That's not a good reason to deny you first-line treatment (oxygen and injectable sumatriptan at least, if not also melatonin), but it's often, if not almost always, the reality. If you have someone who can come with you to advocate for you (with you), that often helps. We'll be sending you good vibes tomorrow. I don't know of anyone who has tried to get welding O2 in the UK, but let's assume you can do that if you get turned down (from a very quick google search, it looks to me like it might be feasible).

Here's an article from the leading UK medical journal about melatonin and CH: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2972062-6/fulltext

Tyke, I'm on my knees here, begging you. Get oxygen. There's no reason why the NHS shouldn't give it to you. It's the #1 recommended abortive according to EU medical standards (note that injectable sumatriptan is listed second). (Yes, they all have "A" ratings, but the order is not accidental.) It's nice that the NHS wants to save money . . . but at the expense of your suffering??????? Really??? From http://www.guidelines.gov/content.aspx?id=34898 Major Recommendations Treatment Recommendations for Cluster Headache . . .  Treatment of Choice Attack treatment Oxygen inhalation (A) Sumatriptan 6 mg, sc (A) Zolmitriptan 5 mg nasal (A) Sumatriptan 20 mg nasal (A)

UncleG, here's some basic info about RC: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 The info there about how many seeds to take is quite a bit lower than what we have learned since those files were posted -- I think most people start with at least 30 and often end up taking 50-60 in later doses. For most people there are no, or virtually no, psychedelic effects. You can get RC legally lots of places. Here are two: www.tranceplants.net and www.psychoactiveherbs.com. Consider the "vitamin D3" regimen too. A lot of people attribute very good results to it. Inexpensive, probably healthy for you, and effective. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Like Moxie says, there are always nuances to how these various things work best for individuals. Keep asking questions and letting us know what you're doing, and how you're doing.