CHfather

Jl, what you're suggesting here is the same as what many uninformed people think about the use of psychedelics to treat CH -- that somehow you "trip" and that makes you unaware of the pain (or something). This article previously posted by shocked presents a different picture about MDMA and PTSD: http://www.oprah.com/health/PTSD-and-MDMA-Therapy-Medical-Uses-of-Ecstasy/8 I'm not loving the tone of this thread, and I'm not surprised that you might be feeling kind of defensive, and of course you're right that "PTSD is no cluster headaches" . . . and at the same time, maybe there's something for all of us to learn from this. This tangent is mine . . . You write,  I've said here, and 1961mom has said more eloquently, that something a lot like PTSD is probably very common among people who suffer from CH. I don't see how it couldn't be, and of course what makes it so much worse is that while maybe "typical" PTSD arises from past incidents that can be assumed not to be highly likely to happen again, CH is all too fecking likely to happen again. So I suspect that most conventional forms of PTSD therapy (like the one described in that article) will not help CH sufferers much. But if something helps my daughter and you and the folks here and elsewhere to cope with what I see as the many PTSD-like challenges of living with CH, I'm all for learning more and assuming less.

Thank you, wb, for this post. All information is helpful. I'm just curious about whether you dosed at all during this cycle. Doesn't sound like it, but I wanted to be sure. I am not a superstitious guy, but I do fear the fecking jinx, so I won't say anything more.

yury, my daughter was once prescribed clonazepam for her CH, so i did some looking into it. i don't claim to be an expert, but here's what i found. in a couple of very small, quite old studies, clonazepam was considered an effective treatment for cluster headaches (in one case, combined with lithium). http://www.ncbi.nlm.nih.gov/pubmed/1104361 http://www.ncbi.nlm.nih.gov/pubmed/10498239 but today, from what i have read, it's only an "exceptional" treatment in limited circumstances, for example: http://www.ncbi.nlm.nih.gov/pubmed/18563291 it's more effective for trigeminal neuralgia. it's an anticonvulsant/sedative,anti-anxiety drug, so, yes, it might "calm you down." some people with CH have taken it for sleeping problems, but i've never seen anyone say it helped their CH. it's not listed at all in the european standards for treatment/"prevention" of CH, at least as i read those standards: http://www.guidelines.gov/content.aspx?id=10471 as mystina said, and as is reinforced in the wikipedia page she linked to, abruptly quitting clonazepam can lead to nasty withdrawal symptoms.

Scott, not sure if you're asking me . . . and not sure I know the answer. From what I've read at the ch.com thread, people experiment with D3 dosages between about 15000IU and about 7000IU, depending on their tolerance and also the perceived effectiveness. So, you're at the lower end there, but not far from the 10000IU that seems to be the norm. The calcium that's recommended there is "calcium citrate." Don't know whether that's the same as what you're taking, though it is apparently often formulated with magnesium and zinc (and some added D3). In one of his posts at ch.com, the popularizer of this regimen, Batch, says this: >>>I had originally attributed several week long CH remissions to a buffering regimen of calcium citrate tablets that also contained vitamin D3, magnesium and zinc washed down with homemade lemonade... However, upon review of my logs I found there were two more factors that came into play during three of these remissions. The first was increasing the dose of the calcium citrate tablets up from three to four/day. The other was two of the week-long CH remissions occurred while I wasn't taking the calcium citrate tablets but I was taking the Omega 3 Fish Oil while spending a good bit of time outside in direct sunlight wearing shorts and tank top working in the yard. I connected the dots last October while I was here in Bremerton, Washington working on the house. I realized that the CH remissions I'd attributed to the calcium citrate and citric acid buffer were more than likely due to the increased level of vitamin D3 from sunlight so I stopped by Costco and picked up a bottle of 2,000I.U. softgel capsules and started dosing at 10,000I.U. a day along with three of the 1000mg Omega 3 Fish Oil softgel capsules. . . . <<<< Here's a link to that post, or the general vicinity of it; it's reply #37 on this page: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/25 In several other places in that thread, Batch also says that he attributes the effectiveness to the D3/fish oil (or even just the D3 itself). So I'm not sure what the citrate adds -- but I suppose there's no reason not to take it. He also talks in that thread about lemonade/margaritas (!) as a regular strategy to change his pH. Looking forward to hearing how this works for you -- hope it's great!!! Oxygen will be very good, too: That I know.

Thanks!

Kaboom, do you mind talking specifically about what you're doing with the D3? I'm trying to put together one of my "summaries" as a reference for others, but the testing is all over the map. It seems particularly important for this site to know how it's being done while busting, and how it is (or at least seems to be) working. (And also, okay, my daughter's cycle is probably imminent, and I want to be able to give her my best advice when (if) it hits. So a personal thank-you to you, in addition to whatever can be compiled for the larger audience.) So . . . You're taking two 5IU D3s a day, I figure -- are you taking them with food (that's recommended)? How much O3 fish oil? And the "etc" -- is that the recommended 2 calcium citrate tablets with magnesium, zinc, and additional D3? Are you doing anything else, like the lemonade-drinking, to shift from acid to alkaline? Are you doing any of the self-testing for acidity that Batch describes at the ch.com thread? Thank you! Jerry

Kika, I think your fears are completely rational, and your preparation is admirable, and that your fears will prove to be unjustified. As I have mentioned, you can start with a relatively low dose (say, 20 seeds) which is virtually guaranteed to have no psychedelic effect. As I recall, you are out of cycle now. I wonder (others, please chime in) whether you might want to test such a low dose now, when you are still out of cycle. That would give you the advantage of learning something about the effects without "wasting" a low dose and the subsequent five-day waiting period while you are in cycle.

DG, did he stop as a test, or because in some way he didn't like them? Seems like a sound, not-risky regimen (and possible long-term preventive), maybe at slightly lower levels, regardless of whether one's in cycle or not. (I've been taking lower levels of those things and I think I feel better for it, and I've encouraged my daughter to take higher--but not highest--levels in case there's a long-term beneficial effect.)

Dan, I once appeared on a highly-rated TV quiz show, on which I came in a distant second out of three contestants. Between the time the show was taped and the time it aired (a few months), all I could remember was how stupid some of my answers were, and I increasingly dreaded the broadcast. When it finally came on, I wasn't much dumber than most people who don't win on that show -- and nobody cared anyway. My friends were still my friends (maybe a little impressed that I had qualified and appeared, but they had known that for a long time). My main concern was not to humiliate my daughter, and I appear to have avoided that. I expected that at least some folks in the smallish town where I lived then would acknowledge that they had seen me on the show, but not a single person did. Maybe they felt sorry for me and didn't want to rub it in, but more likely they either didn't see it or didn't connect me with that person. Since in your case the producers have no incentive to make you look bad, my advice is not to worry. I wouldn't be surprised if it opens up a whole career in modeling for you. And we all are grateful!

I suspect this was more of a subtle pun/joke than a serious question -- though I like that you give serious answers. The more common version begins "Hey Ward, a little . . . etc."

Gosh, I'm one of those guys who might cut the handle off the toothbrush so I could lift it more easily. Bless you! And thanks again for your generous presence here.

Like everyone says, dosage is a highly individualized thing, also affected by the quality and freshness of the seeds. I'm no expert. My thought would be that 50 is definitely too few to buy (if that's what you're asking about--you might take 4-5 doses at an average of maybe 40 or more per dose), and maybe a bit too many for a first dose (if that's what you're asking about). Re the first dose, I'd ask that at your other thread.

Thanks, Lt2--and thanks also for the licorice root/taurine idea, which makes good sense (and, yes, Les did say the LR could be used as an abortive). For whatever it might be worth, there's a portable backpack-based oxygen system on p24 here: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf

my daughter volunteered today that she might come. of course, she's the ch person in the family, so i guess that means she'd be bringing her dad.

plenty of golf, including some nice ones very nearby. no trysting tree or ocean dunes (or bandon dunes), but nice enough. of course, the way things are going it might still be snowing then. i'd be happy to arrange some day-before or day-after golf, if there's interest.Â

Kika, more has been written at Len Genser's licorice root thread since I created this summary, but I don't think the basics have changed, so for what it might be worth: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 If the idea is appealing to you, then you could read through the thread, or the last 20 or so posts. I wouldn't disregard the D3 either, given the success stories. Although the thread at ch.com is long, complicatedly ADD-unfriendly, and imprecise, the rudiments are extremely simple. Since I want to summarize them for my own purposes at some point, if you want me to I'll create a summary of that one for you. Just let me know. But it's basically give or take 10,000 international units of D3 (depending on tolerance and efficacy), taken with food. The "author" of that treatment, Batch, also mentions 1-3 thousand mg of Omega3 fish oil and some calcium citrate tablets containing magnesium and D3, but some people are doing well on just the D3, and it's my impression that Batch is agreeing that while the others are nice and probably beneficial, it's the D3 that really matters.Â

Lt2, I really appreciate your clear and thorough updates, which are really important for those of us facing decisions about ways to deal with CH. Thank you. I recall that in a post you were critical of those who say "oxygen, oxygen"; and I am clearly one of those people. So, with some trepidation, I'm wondering why you choose not to use it. No judgment whatsoever -- you're clearly capable of making that decision for yourself. I just figure it might make me a little smarter to know about your choice. Or maybe it just doesn't work for you? Thanks, if you choose to reply.

We (my daughter and I) chose RC for three reasons. First, I had read Dr. Sewell's poster about HBWR, and then checked with him about comparable effectiveness of RC, and the evidence that it would probably work seemed pretty compelling. Second, we understood the likelihood of psychedelic effects to be much less than with acid or shrooms. Third, we figured that if RC was a lower-effectiveness busting product, she could always step up to the others later. We chose RC over HBWR because the preparation was extremely simple (HBWR is not), and also because we figured the possible "dud" seeds in 40 or 50 or 60 seeds would compromise the treatment less than one possible dud HWBR seed out of a dosage of 2 or 3. We did have access to reliable sources of both psilo and LSD, so that wasn't an issue. She started with 10 seeds just to see what the effects would be (nausea; tripping; etc.). No effects, of course -- and, really, a busting opportunity wasted, since we then had to wait five days. She subsequently took 30, and one off-schedule, long, severe post-dose hit suggested that it was having an effect. Her symptoms lessened after that post-dose k8-9 doozy, and after 2 more doses of increasing numbers (50, then 60), she was PF. (She drank the sludge, too.) (She also started using RedBull and O2 for the first time during that cycle, and that combination aborted any HAs very quickly.) She never experienced anything but a relaxed feeling, leading to sound sleep, post-dose. She had virtually never taken any of the standard CH meds (somehow just endured two 10-week cycles a year for many years), which might have led to a "clearer" system and more receptivity to the LSA. With all that said, if we were starting again I might be strongly tempted to encourage her to try D3 and licorice root before trying LSA (those apparently-sometimes/somewhat-effective treatments weren't popularized last year). Les Genser says the licorice root is out of your system in a day or two, so you can bust quickly if it's not working, and I haven't seen any evidence that the D3 obstructs busting. So I'm thinking why not go there first? The D3 seems like it might have some long-term preventive effect as well, and so one can just take a sizable amount every day and see what happens.

Thanks for your kind mention, 61mom, and so glad to read of your success. Love your borrowed quote! Although I don't live there any more, my daughter and I enjoyed our happiest years living in Oregon. I'd move back to PDX in a second if it were feasible.

Whenever I've used Jstor it's been possible to email things to myself.

My last words on this subject: (a) then don't tell them; and/or ( find a doctor who is not an imbecile. I guess my only hope is that some day you're going to do this. And my great sadness is that then you'll wonder why you waited so long. Been there, seen that.

Your freakin' doctor ought to be prescribing it, man, instead of just using you as a guinea pig for f-you-up drugs! Good grief! But, yes, you can also set up the whole thing, easily and relatively inexpensively, without a prescription--lots and lots of people do, using welding oxygen as the basis. Please click on this link and read it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 It tells you why your doc should be prescribing it, and it also tells you how to set it up on your own if your doc is such an ignorant a-hole that s/he won't prescribe it. Or call the one of those Louisiana docs in the OUCH list who's closest to you and get an appointment--I assume that if Clusterheads have recommended them, they know that oxygen is the first thing that should be prescribed. There is practically no one here who won't tell you that oxygen is essential for coping with CH. Plenty of folks here to walk you through the step-by-step of setting up your own, too, if it's not clear from that file. One thing that happens here is that people understand what you're going through, because they've been through it or a loved one has. That also means that we freakin' CARE about what happens to you -- you're in the family, brother. I don't want anyone going through what my daughter went through before she got oxygen. Probably nobody here can really help you regarding the various drug cocktails you're taking, in part because most folks here gave them up a long time ago. But oxygen is a fundamental source of relief for 9 out of 10 people who have tried it, and a combination of oxygen and busting (or oxygen and something else like licorice root and/or vitamin D3) is what has worked for most people here. Maybe the oxygen would give you the space to detox and try busting or licorice root or something that doesn't cause you to spend all day noticing awful symptoms and wondering what life-destroying drug you should take more of or less of.

Glenn, OUCH just fixed the link to its list of headache specialists who are recommended by folks with CH. Here are the five from Louisiana: Baton Rouge: Dr. Steven Zuckerman Covington: Dr. Srinivas Ganji Lafayette: Dr.Steven J. Snatic Metairie: Dr. Daniel J. Trahant New Iberia: Dr. Timothy F. Himel I guess I'm going to give up wondering whether you're using oxygen; and if not, why in the world not. . . . Jerry

Kika, others here are much more knowledgeable than I am. I can say that it's not hard to procure rivea corymbosa seeds. Here's the website of a place in Canada, in addition to the one Fun Guy suggested, that offers them very inexpensively: http://tranceplants.net/ (They're under "Shamanic Herbs" (the search function isn't currently working there).) Preparing RC seeds is also very easy, and when used at the levels commonly taken to deal with CH, I think it's very rare to experience any kind of psychedelic effect at all from RC seeds. I have been corrected by experts when using the word "hallucinogenic," being told in particular that LSA does not create hallucinations. I don't know if this distinction makes a difference for you, but as I said, it would be surprising if you experienced much more than a slight "buzz" from treatment-level doses of RC. It's wise to be prepared, of course -- set and setting. As you have probably read, it's strongly advised to be off all typical CH meds -- to be "detoxed" -- for at least five days before taking any busting materials. For some folks, that's a tough hurdle. There are other things important to know about -- typical "post-dose hits," for example -- but that advice can evolve if you decide to go this route. Although some people, maybe many people, find that LSD or psilocybin are stronger medicine than seeds, I know that many people have achieved very good results with RC. Hawaiian baby woodrose (HBWR) seeds are also effective -- they're just much more of a pain to prepare, and some people find them more psychedelic in their effect. If you were to order RC seeds now, you would probably have them by the time your detox period is over. I believe that RC, and oxygen, probably saved my daughter's life. I know that those things have made it livable. For maximum responses, I think you'd be best off re-starting a thread somewhere more noticeable (not tacked on to this RC seeds thread), like as a new thread at this "General Board."

kika, in order to know about more options, you might also want to read about licorice root treatment (here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068) and about vitamin D3, which you can read some about here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052 You should probably look at the long, somewhat complicated thread over at ch.com that is mentioned in Bejeeber's first post there. Licorice root and D3 have been very effective for some people, and they're things you might be able to try even if you decide to go with seeds or another busting method, while you're waiting for busting materials. I say "might be able to try" because some conventional CH pharmaceuticals interfere with the licorice root treatment. I don't think it's clear yet whether they also interfere with the D3 treatment. Let us know (if you wish) more about you and what you are currently doing re CH, so we can be as helpful as possible.