CHfather

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

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?

Les Genser introduced the licorice root protocol here last year. He recently created a long document describing that protocol and discussing many related issues. He asked me to post it, and I have done so. You can see it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210 Les says he expects to be here himself in the next few days to answer questions.

Les Genser sent me a lengthy discussion of the licorice root protocol and asked me to post it. It's at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210 I'm sorry for repeating this message in several places, but I wanted to cover the relevant bases.

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

couldn't be more grateful to be part of this great community. thanks to all. jerry

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.

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.)

janste, it was my understanding, from what Dr. Halpern said at the recent Clusterbusters conference, that second-phase trials of BOL-148 are likely to begin in 2012. If you register at the Entheogen website, they say they will let you know when the trials begin. http://www.entheogencorp.com/headache-sufferers/

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.

just a small addition to jeebs' advice: do the redbull immediately, then get on the O2. the combo is pretty potent, at least for "beginners." if it works, then stay on the O2 a few minutes (5 minutes is recommended) after the HA has cleared -- helps prevent recurrences.

well, i guess he couldn't cover everything, but the fact that he left out oxygen is pretty creepy. not having heard of doxepin before, i went over to ch.com to see what i could learn there. very little discussion of it there, either. and, isn't the "oftentimes" in what he says here a substantial exaggeration: >>cortical anti-inflammatory steroids will oftentimes stop a cycle of cluster headache within a matter of 24 to 48 hours.<<?

LOL. I tried to explain all that to Ron, but he wouldn't listen.

Good on you for hangin' tough with the doc, Brad. Many people have experienced frustrating slippages between getting an O2 prescription and actually getting the thing set up right. I have some suggestions about that in that O2 file of mine, so you might want to give it a quick read-through. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 First thing I recommend is calling the O2 supplier to make sure they're on the right page about what you need. Often a prescription will be quite simple, something like "O2, 12-15 lpm" -- if you have any wiggle room, try to get the highest flow and the best equipment (e.g., a demand valve system) you can. Be sure you're getting big tanks ("M tanks") and, ideally, also a smaller, portable one for the car (an "E tank"). These usually require different types of regulators (and it's nice to have a mask for each). You've mentioned that you're not rolling in money, so I guess you have to consider whether the costs would be higher . . . just suggesting that sometimes O2 suppliers know what they're doing regarding CH patients, and often they have no clue.

Drat!

Case closed.

Sounds like you got shuffled from the doc himself (isn't that who Jeebs communicated with?) into the doc's bureaucracy. Any chance of getting Doc G back into the loop? What stops can we pull out here to do that? Halpern always says he's standing ready to help, and that he reads and responds to his emails from Clusterbusters folks. His relationship with Goadsby isn't perfect (as he reported at the conference), but it seems like Goadsby might respond to a nudge from him on a collegial basis. PMD=PCP is what I said! I'm wrong enough often enough here not to be wrongly accused of being wrong when wrong is what I wasn't! Hopin' that laughing gas works!!!!!!! That would be cool. Glad you're going to try it soon. As always, my best to Michael.

One thing that binds us all is the faith that one day, not so far away, nobody will have to be here. BOL-148 seems to be on the horizon. Other advances that have been discussed here seem to be progressing. For now we're stuck with the next-best thing, but soon, maybe . . . . What a day it would be! (Re BOL: You might as well go here and sign up--doesn't seem like it could do any harm: http://www.entheogencorp.com/community/

KIP is a pain-measurement scale, from 0 to 10. You can read about it here: http://www.clusterbusters.com/tracker.htm

What a nice message, Gord -- thanks for checking in! Bless you for being proactive and attacking this thing so aggressively! Hoping your HAs were just post-dose hits and you're on your way to PF status. We'd recommend getting your oxygen taken care of (apparently you know what was wrong with the system you had), but you know that. You're "officially" part of the family now, so stick around! Jerry

brad, i looked back over this thread to see whether you're tossing down an energy drink (redbull, monster, etc.) at the first sign of an attack. don't see anything about it, so i'll mention it here just to be sure you know it's a strategy that helps for some people. also, when you're talking to your doc, it seems that injectable imitrex, not the pill form, should be high on your agenda, along with the oxygen conversation.

well, i know i said 'nuf said about busting, but you reminded me of something a truly wise guy once wrote:    To be, or not to be, that is the question:    Whether 'tis nobler in the mind to suffer    The slings and arrows of outrageous fortune,    Or to take arms against a sea of troubles,    And by opposing end them? i'd say that most people here have chosen to take arms against their sea of troubles, and in most cases they have, if not ended them, at least put a great big dent in them. www.iamshaman.com completely legal to buy and own.

Brad, there are threads about ketamine at ch.com that you might want to look at. Here's one example: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1285659007 (It's also an example of why it is sooooo much nicer, for me at least, to be here rather than there.) You can enter the word ketamine in the search bar there to see more. (Interestingly, their search function is so much better than ours that it will take you to a thread here about ketamine at Clusterbusters that you won't come to by using the search bar right here.) You've given us some hints about why you're resistant to busting (even though it seems to have "worked" when you weren't even deliberately using it to treat your CH), and we've given you some reasons to reconsider your reluctance. 'Nuf said on that topic. The "official" medical journal materials on O2 talk about 7-12 lpm flows (or 15, tops). I know it's tough to push doctors, but someone here was able to get a demand valve system paid for by insurance (as I recall), so I think you should try to share info about higher flows/better systems to try to get the most effective O2 prescription you can.

Agreed!

Well, here's some very helpful guidance from Wikipedia: PMD may refer to:   * LA/Palmdale Regional Airport (IATA: PMD), a commercial airport in Palmdale, California   * PMD (rapper), member of group EPMD and solo artist   * PMD (software), code analyzer for Java   * PMD 85, 8-bit personal computer produced in Czechoslovakia As an abbreviation, PMD may stand for:   * Phi Mu Delta, a men's social fraternity   * Pakistan Meteorological Department   * Pakistan MNP Database (Guarantee) Limited   * Palmdale, California, mostly in hip-hop culture known as "the PMD"   * Pelizaeus-Merzbacher disease   * Pellucid Marginal Degeneration, a degenerative ophthalmological disease   * Photonic Mixer Device   * Physical Medium Dependent, an Ethernet Layer 1 (PHY) sub-layer   * Pokémon Mystery Dungeon, a series of games for the Nintendo DS handheld video game system   * p-Menthane-3,8-diol, the largest constituent in an insect repellent derived from the lemon eucalyptus tree   * Polarization Mode Dispersion   * Polish mine detector   * Premillennial Dispensationalism   * Programming Mistake Detector, see PMD (software)   * Primary Medical Doctor, another name for one's Primary Care PhysicianHence PMD=PCP   * Psychotic depression, major depression with psychotic features   * Pre-metal dielectric   * PageMaker document, file name extension .PMD for Adobe PageMaker I'll bet they're going for the one in blue and red up there, and not the Pakistan Meteorological Department. If the latter, I think they would ask explicitly, "Is he the Pakistan Meteorological Department?" Or, "Is he the LA/Palmdale Regional Airport?" (To be clear, no offense regarding Pakistan is meant in any way here; it's just the funniest (to me) of the things that are listed here. I mean, don't you think that if "Pakistan Meteorological Department" merits inclusion, there must be a thousand others? Where's the Peruvian Metallurgy Department? Or the Pennsylvania Misanthropes for Disarmament or the Patagonian Mothers against Drunkenness? (No offense to Peru, Pennsylvania, or Patagonia, either!)) And though Jeebs is in my opinion far more qualified than most doctors, I think answering the "referring doctor" question with "Bejeebers" might throw them off. It appears that the X-Man can be both the referring doc and the PMD, so why not either go that way, or include a note saying that Dr. Goadsby himself is in effect the referring doctor, since he responded to a phone call by inviting Michael to the clinic? All this is just my PMD, of course (my Personal Meditation on the Discourse).Â