Jump to content

CHfather

Master Members
  • Posts

    6,488
  • Joined

  • Last visited

  • Days Won

    377

Posts posted by CHfather

  1. 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

  2. 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

  3. 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.)

  4. 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/

  5. 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.

  6. 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

                                       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.

  7. 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.  :-[

  8. 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

  9. 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.

  10. 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?

  11. 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.

  12. 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

  13. 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?

  14. 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

  15. if I understand well, they are making the patient choice for the phase 2 study ? 

    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.

  16. 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.)

  17. 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.

×
×
  • Create New...