CHfather

anthony, i was hoping that someone more knowledgeable than me might answer this. hopefully, that will still happen. what i can tell you is that some people here have reported some success with busting while still on verapamil. but i don't recall (a) what level of verap they were on while busting or ( what busting agent they were using (since you are asking specifically about seeds). i do recall that when people reported that success, they were achieving a reduction in attacks and the severity of the attacks, but not complete remission. not much help, i know -- best i can do and i figured some kind of reply might be better than none.

welcome, brad. as bejeeber says, a "cure" of some sort is coming pretty soon, between goadsby's work and the likely release of BOL-148 in the next year or two. there's no way your kids are going to have to deal with what generations (centuries) of people have had to suffer. and, as ting and jeebs say, busting will probably get you through until then. can you tell us a little more about what you're now doing? is oxygen helping you? are you using meds (imitrex, verap, etc.)? right away, you might want to consider starting the vitamin D3 approach that has helped a lot of people. it's simple, inexpensive, and safe, and seems to provide some significant relief for many and even full relief for some. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 and, hey, you can look forward to next year's clusterbusters conference, where you'll get to meet a whole bunch of wonderful people who share your condition.

Well . . . in general, people don't find much correlation between food intake and the overall presence of CH, although some foods can be triggers (e.g., chocolate for some people). And some people have said that very strict additive-free diets have put their CH into remission. But in general, as Bob Wold often reminds us, CH has been around a lot longer than some of the things that we look to as possible causes. HOWEVER, since your son's "CH" is so unusually sporadic, and you have these two data points, you might take a second look at that "Asian food." MSG (monosodium glutamate--often found in many Asian cuisines (and elsewhere, of course)) gave me severe pancreatitis. It took almost five very painful years to figure out that connection, because it was (and generally still is) unknown to doctors. So there's an off chance that his CH-like symptoms just might be caused by MSG (which is why I put the CH in quotes up there). You have to look closely for MSG, since it's in a lot of things, but maybe that would be worthwhile. A lot of college kids eat a lot of ramen noodles (cup o' noodles-type stuff), and that is laced with MSG, and so are some pizza toppings (the sauce and things like pepperoni and Italian sausage). In my case, for many years I had minor gut pain after eating MSG (as I later figured out) in things like ramen noodles and Roundtable pizza sauce, and then one day I guess I just had had too much and the pancreas couldn't take it any more. So it was kind of a cumulative thing and then it became full-blown. If your son had more "typical" CH I wouldn't be suggesting this, but in his unusual case it might be, as I say, worth looking into. MSG is a known cause of very severe, even excruciating headaches, and some specialists say it's a leading cause of migraines. Here's just one article about that: http://www.cbn.com/CBNnews/107774.aspx

Happy happy happy happy birthday, dear Danny, happy birthday to you. You've been the guide and inspiration for so many. Hope it's a great day.

i still get the same message when i click on it.

Doug (hope you can hear me), a kind of weird problem: When I click on the first entry here in the "board topics" part of the General Board, which is a reply from you to the "him 21 years (etc.)" thread, I get this message: >>You must be logged in to access this section. If you do not have a message board account, please click the 'Register' tab above and create one.<< Makes no sense because I am logged in and can access everything else, including other messages in the General Board/Board Topics section; and of course because I don't have to be logged in to see anything on this General Board, anyway. Thanks for being on top of this. Jerry

funny, lenny . . . but a little worrisome to me, because i could hear it just fine.

b.g., since this is your first dose, you can't expect too much, except maybe some post-dose hits (odd times and/or unusual strength) and then maybe a little gradual clearing. this changing midwest weather isn't helping any, as you say. you really should give it the full five days before the next one. were you very nauseated when you first took it (since you mention leftover nausea in the morning and a bad night's sleep)?

so, you're all (or mostly) detoxed -- congratulations!! and great going on the demand valve!! you were thinking 35-50 seeds back when you were mulling this over. i've always been reluctant to give specific dosage advice, but the more i see, the more i think 50 is the better of those two numbers, especially since you've said you're not troubled by the possibility of a light trip -- although even that seems quite unlikely at that dosage level. it's such a pleasure to see you taking charge of this, and making your way out of the really awful circumstances you described in your first post.

A related thought . . . . I've never understood how well SPUT (small piece under the tongue) actually works. Maybe it's not strong enough for you. But you could presumably SPUT some good stuff all the way up to the time before you have to go through security. And if none of my other ideas in the previous message make any sense, you could at least SPUT some seeds while flying.

Mystina, since it's your first time, a clarification and a couple of thoughts. You can surely buy energy drinks after you go through security, and even bring them on the plane with you (I wouldn't be surprised if they sell them on the plane). I don't know what airport you'd be flying from, but it feels certain to me that they'd have energy drinks in the stores that are past the security part. A few thoughts. Seeds are legal. You can bring as many of them as you want. I wouldn't be surprised if you couldn't grind 'em up in advance and carry them on as a powder, to which you could add some water during the flight. An hour later . . . . For that matter, you could buy a beverage from a fast-food place before you board, dump whatever was in there and replace it with the powder and water, and carry it on with you. (Or get to the airport early enough that you could put together this beverage while waiting to board and drink it before boarding.) (In fact, since the limit for liquid carry-ons is 3 ounces, you might be able to prepare your own medicine in advance and carry it on, in some kind of opaque bottle. I suppose this might make you nervous. But maybe there's something here to consider.) I have another suggestion, which I will PM you about.

i did notice in sewell's poster that the effectiveness threshold of LSA for people who are chronic seems to be higher than for people who are episodic. (that is, you gotta get more of it to avoid it being ineffective if you're chronic than if you're episodic: .5 mg. of alkaloid was the dividing line for people who are episodic; 1 mg. for people who are chronic).  however, (1) this is based on a small, erratic sample, and could be just a statistical blip; (2) it doesn't mean a lot is better, just that the amount that's too little seems to be different; and (3) i have no idea (this was bob wold's point, of course) how to assure yourself that you get above the threshold, but i think the numbers we usually throw around as a recommended dose (50/60 seeds) are more than sufficient with decent seeds, still without creating any significant psychoactive effects. (one person here busted successfully with two doses, one of 10 RC seeds and one of 12, and my daughter definitely shook things up with an initial dose of 20.)

D3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 (my typing fingers are tired.) D3's good stuff, works great for a lot of people. Cheap, easy, safe, effective.

Don't want to hijack this thread. So I'm going to delete the very long response that I just wrote to Ron's post and simply quote Bob Wold from a May 11 post at this board: >>Some people will have better luck with the seeds. They are a little closer to LSD than psilocybin. The big thing is that its often a more reliable dose strength with mushrooms if you know what you have or can adjust a little. The strength of seeds is what has always been in question from batch to batch. I think that is the only reason that mushrooms may appear to be more effective. If we had pure LSA vs pure psilocybin, I doubt there would be much difference and maybe even a slight edge to the LSA.<< Since I think that the variabilities in dosing can be addressed 98% of the time by just making sure one takes enough seeds, I'm sticking with my position about LSA.

well . . . if you're around here long enough, b.g., you will recognize ron as one of the handful or two of the wisest, kindest, and most knowledgeable folks here. he and his son michael are in the daily prayers and counted blessings of many, many people here. there's even an award here named for him. and you will also see that, since we're all figuring out a lot of it as we go along, not everything is nailed-down certain. one example is how much some compounds, like verapamil, actually interfere with busting. another is the relative effectiveness of the various busting agents. so my two cents, in contrast to ron's three or four, is that i don't think there's much evidence, or much reason, to think that "psilocybin is a far better busting agent than seeds." i have heard from two sources that know more than most of the rest of us that seeds are actually preferable to psilo, aside from the fact that the LSA content of seeds is a lot more variable (admittedly, that's a potentially big aside). and i feel very, very confident that seeds will work fine for you. no major reason for you not to follow ron's growing advice, and people do find that switching up (or combining) their busting agents over time seems to have a positive effect. but seeds are plenty good for dealing right now with what you're dealing with. here's a poster from a medical conference, created by another CH hero, dr. richard sewell, showing the effectiveness of a different kind of seed with the same active ingredient (lsa) (pay no attention to the preparation method--a lot has been learned about that since then). what you notice is that it worked for almost everyone (with the added benefit of no psychoactive effects except for those who took very large doses), except for those whose seeds were, basically, "duds." you are not likely to get duds, and even if you do, you can take enough of them to counteract that possibility (still without likely psychoactive effects). http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

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]!