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Posts posted by CHfather

  1. From a longer post, which is down the page a bit at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317418320

    >>>. . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug [bOL] focused on CH, since clinical trials on people with migraines would reveal the existence (or non-existence) of a much huger market, but would not demonstrate that it works for CH, hence would only mean that CH was available "off label" for CH, which I think would have implications for insurance coverage for CH use.  Just guessing here, but if I am understanding this correctly, then some people have already sacrificed a lot of short-term financial gain in order to serve people with CH.<<<

  2. joe, oxygen is the most important thing you can have to abort your headaches.  This shouldn't even be a discussion with your GP: just get the prescription and get started.  More here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    As Ting says in her post, "busting" is using these agents to stop cycles or prevent cycles.  It can help with aborting them, but stopping/preventing them, by using effective doses spaced about five days apart, is generally preferable.  It is strongly believed here that triptans will block the effectiveness of busting, so (for purposes of busting) that's where the oxygen comes in, enabling you to get along between doses without resorting to meds that block busting.

    HBWR is a pain to work with.  If you want to bust, you can buy RC seeds relatively inexpensively.  You might want to look over the files that tommyd has created to maybe get a better sense of all this.  They're in the "Clusterbuster files" section of this board.  Here's a general one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    Here's one on seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    Here's one on things that block busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    In my opinion, if the Frovatriptan is in tablet form, it probably won't help you unless your headaches are very predictable and you can take it in advance.  If it's injectable it might help more . . . but it sounds like maybe you've experienced some of the side effects of triptans.  Others will have wiser things to say about this than I do.

    Strongly recommend that you get the oxygen ASAP.  I know virtually everyone else here agrees about that.  If you don't want to bust (or even if you do) and you haven't tried it yet, the anti-inflammatory "vitamin D3" regimen has helped quite a few people, and even though you've already tried a lot of OTC remedies, it could be worth a shot for you. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

  3. hey joe, welcome, and thanks for posting and standing by.  looking forward to your input.  as you probably know, paper is generally considered the best busting agent. but if you conclude you're using too little to really make a long-term difference out of reluctance to "trip," you might consider seeds, from which you can get a stronger dose (than a very low dose of lsd) without psychedelic effects.

    are you taking no pharmaceutical meds right now?  you have oxygen?

  4. i think i answered this at another thread, anthony, but brown is the color they commonly are when purchased.  i've bought a lot of seeds from a lot of different places, and they always have been brown (and they have worked).  sometimes a few are kind of very dark brown or black, and we usually toss those away, but i don't even know if that's necessary.

    at that other thread, ricardo said he didn't think you could get green seeds, because those would be fresh seeds.  i know agent orange was one person who talked about using green seeds, and i never trifle with AO's knowledge, but i was puzzled when he wrote that since as i say ours have always been brown and, as i say, they have worked.

    shaman's garden is not an unusual place for people to buy from.  people here have reported getting good seeds and seeds that did not seem to work from virtually every place that sells them.  there's no reason the ones you have should not be good, as long as you've stored them in a reasonably cool, reasonably dark place since you bought them.

  5. No, there are no current trials of BOL-148 (which I think is what you're asking about).  It's hoped that next year there might be some.  To be informed when trials of BOL are underway, you should register here: http://www.entheogencorp.com/community/

    Sorry there isn't better news about this.  I can only say that at the Clusterbusters conference this year, Dr. Halpern was optimistic about trials next year.

    Do you care to say anything more about seeds, just in case you were somehow missing something when you tried them?

    Also, you might consider the anti-inflammatory approach (the "vitamin D3" regimen, as it's sometimes called), which has helped a lot of people.  You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    And some folks here say they've had very good results from the licorice root method: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

  6. Skip, there's a very good illustrated discussion of tank types, regulators, and other topics here: http://morrobayphotos.com/ch/O2primer.htm

    More extensive discussion here: http://www.clusterheadaches.com/O2/index.html

    You can find information in the last section here about places where you can buy what you need: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790.

    You can probably buy a good regulator where you get your tanks.  Quite a few people use the one illustrated on this page, second row, far right, "Oxygen Regulator."  I'm assuming that it or something like it can be purchased at most welding oxygen places, or maybe there's a Harbor Freight store near you. This regulator does not provide an lpm reading, but you can just open the valve to the flow rate you need.  http://www.harborfreight.com/catalogsearch/result?keyword=regulators

    If you're considering a more complex setup, maybe using a demand valve, there's a lot of good information at ch.com.  Here's one thread, but you can use their search engine to find more: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1226213955

  7. I wonder a CH is actually simply down to oxygen levels in the blood rather than all this about a deformed hypothalmus and what not.
      Just another piece here for your inquiring minds, AO and Hejada. While it seems completely logical that the hypothalamus is involved (given cyclical regularities, among other things), Kyle posted an article here earlier this year that contained this, based on visual brain studies of people with CH:

    >>>Although prior research with VBM and positron emission tomography found patients with cluster headache had abnormalities in the hypothalamus—proposed as a key component in the pathophysiology of cluster headache—the current study showed no such abnormalities.

    “Dr. Filippi’s poster muddies the waters a little bit, because his group didn’t find the same abnormalities in the hypothalamus that had previously been reported,” said Stewart Tepper, MD, professor of neurology, Cleveland Clinic, Lerner College of Medicine, Ohio, who was not involved in the study. “The increasing sophistication of brain imaging, however, will allow us to continue to gradually work out the entire anatomy of the efferent outflow of cluster headache and learn how best to treat it.”<<<

    The thread is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1311825574

  8. You're not alone, "citizen scientist" Hejada: “Immediate Improvement of Cluster Headaches after Sexual Activity” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez

    Although from a recent thread here, I would say you're in a minority.

    Vigorous physical activity (running, calisthenics, etc.) does help some people abort an attack.  (If I'm not mistaken--though I am mistaken on myriad occasions-- I think that's how the efficacy of oxygen was first realized.)

  9. 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):


    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/

  10. 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.

  11. Yes, I am doing the D3. According to the thread on it , I still need to add about 3000 more units of D3 to make 10,000 mg per day. Will do that today.
    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


    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.

  12. 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.  :-[

  13. 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

  14. 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.

  15. 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?

  16. http://psychoactiveherbs.com/

    is this a good site to get them from ...?

    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.

  17. 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.



    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

  18. 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?