CHfather

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

it's a beautiful story, denny. makes me happy. you've certainly accumulated enough good karma helping others with CH that you deserve this nice repayment right here in this lifetime.

I guess you could try the giant-size one, or the mid-size (335 ml?). My daughter was helped quite a bit even by the smaller one. Chug it down, as much as you can (I don't think that chugging it makes it more effective; just gets it into your system faster). Cold is fine; I don't know of any reported differences between cold and warm.

Crystal, I do understand why you don't want to keep shoving more stuff into your system. Maybe the water will work -- I know it has for some people. But here are a few thoughts. It's my impression that some people take more melatonin than 9 mg when they're in high cycle. I've read of 12 - 15 mg. not being an uncommon dose. Based on experiences reported here and even more so at ch.com, I still think the D3 approach is worth serious consideration. Here's the kind of comment that keeps me recommending it, even though for some people it has not been effective: >>>I have been headache free pretty much since starting the D3 regimen. I'm also taking melatonin at night. I'm convinced the D3 regimen. followed exactly as the directions indicate have ended my cycle.<<< I do think that following the directions exactly is important. (Ah! I just realized that the "123 days thing" you referred to is the D3! Good.) In order to take the seeds, as Bejeeber has written, you want to be off the prednisone and the imitrex for several days. Verapamil seems to be less of an obstacle to busting. Getting a working oxygen system is pretty essential to being able to drop those meds. You haven't said whether the oxygen that didn't work for you was at least 15 liters per minute using a non-rebreather mask. It's true that there are a small number of people for whom oxygen just doesn't work, period, but for most people, it's just a matter of getting a proper setup. (If you have not had a proper setup in the past -- my daughter, for example, was given an oxygen "concentrator" that could only put out a maximum of 8 liters per minute and she was given nasal "cannula" -- those things you stick into your nose -- and so she and her doctor believed, falsely that oxygen "didn't work for her -- then maybe your doctor would be willing to prescribe a proper one. In that file I directed you to, there are links to official medical journals showing that 12-15 lpm and a non-rebreather mask are essential; you could show those to your doctor.)

crystal, that's an awful situation. my heart is hurting for you, and i know that's true of everyone who reads you post. my daughter is also 34 and in cycle right now, so it's particularly poignant for me. (she's a lot better off since she got a good oxygen system and started busting with RC seeds, but it's never a picnic.) there are a lot of things you can do, and they all are likely to help you (and help you manage future cycles much better) but none of them is likely to be an immediate magic bullet. you can create your own oxygen system using welding oxygen and regulators and masks that you can buy on the internet. i'm not sure why your previous oxygen system didn't work for you, but our usual guess here is that the flow was too low or the mask was not right. you could start by reading this file and then asking any questions you have: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 there are some harbor freight stores near pittsburgh where you can get oxygen and a regulator. you'll be able to find them here: http://www.harborfreight.com/store-finder/ you can take rivea corymbosa seeds instead of mushrooms. seeds are just as effective and can be purchased and possessed legally (preparing and drinking them is illegal). i'd recommend that you seriously consider ordering some today and having them overnighted to you. among the many places on the internet where they can be purchased are www.iamshaman.com and www.psychoactiveherbs.com read more about seeds here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 you'd probably want to order 150-200. you could start today the vitamin D3 approach that has helped many people, some of them quite quickly. it's relatively inexpensive, safe, and all the ingredients can be purchased at a decent pharmacy. read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 have you tried melatonin? are you using RedBull or Monster drinks taken at the onset of an attack to try to abort them? our best wishes to you . . . hang in there and the good folks here will hang with you.

Brad, I see on another thread that you've been having some good days. So happy to see that! Any explanations? Doesn't seem that you've done any busting (?), but you did say you were about to start the D3. Have you set up your oxygen yet? (Not that O2 would explain the PF days, but it's important for you to move forward on that.)

if i can say so, heilette, this sure seems like a lot of questionable medical advice. i'm not a doctor or even one of the clever guys, but . . . try two things and you're "snookered"? nah. and i'd say that it's quite unlikely that something you started or stopped doing two years ago caused your attacks. possible, i suppose, but unlikely. (of course, as ricardo says, if beer works, then beer works, and it's good you've found it.) no imitrex? the oxygen is helping, or no? (if no, then maybe, given all your other information, you don't have CH and you need a better diagnosis.) do you have access to "energy drinks" such as RedBull or Monster brands -- it's generally believed that the taurine in those drinks (which also contain a lot of caffeine, as with your coffee) helps with CH. some people take taurine capsules. have you tried melatonin? hard to guess why the licorice root would cause that shift. maybe you could send a private message (a PM) to les genser (who developed the licorice root regimen) and ask him about it -- though he hasn't been here much lately. you can pm him from here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=41485E724A48435E485F2D0 be careful with the licorice root (maybe especially in light of your raynaud's). les cautioned that it shouldn't be taken in high doses for extended periods of time. here's some information about all that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 it's not clear, from the very small amount that i know about raynaud's, how the raynaud's would interact with psychedelics, and the reasons for your concern. can you say a little more about that? if certain kinds of seeds (rivea corymbosa or hawaiian baby woodrose, particularly) can be purchased there, then your lack of growing skill might not be an obstacle to busting. and, broken record that i am on this topic, i'd just like you to be sure that you were doing correct dosages of the vitamin D3, and that you gave it enough time. dosages are listed here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 hopefully, the truly clever folks will be here with more, and better.

that's an interesting board you linked to, steve. thank you. i'm sorry to say that i can't tell you anything about cymbalta and busting, for a variety of complicated reasons. it's not that i don't want to; it's just that i don't really know anything. sorry.

Brad, your tough decision about the legalities is of course yours alone to make. Psilocybin and LSD are "Schedule I" drugs, so even obtaining them is not without risk, whereas Seeds/LSA are "Schedule III." Since the seeds are lawful to buy and possess, as someone here once said you would have to go pretty darn far to be apprehended for preparing and drinking them in your own home -- maybe inviting a law enforcement official in to watch you doing it would be the only secure way to get arrested.

my daughter also typically gets relief from ch when she has any kind of cold/virusy thing. there was a thread about that some time back, with some people saying yes and some people saying no to having experienced that kind of connection.

brad, maybe some of the information here about oxygen (O2), including a study reported in the Journal of the American Medical Association, will help your neighbor doctor reach a quick and helpful decision. virtually every single person here will tell you that oxygen is an essential, probably the essential, part of their anti-CH arsenal. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 here's the report about busting with seeds that got us off the dime to try it: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf although that poster is about HBWR seeds (Hawaiian baby woodrose), most people here prefer RC (rivea corymbosa), for a variety of reasons. RC is legal to buy and to possess; it's just unlawful to prepare and drink it. you're in a perfect position to bust right now, not having used any meds lately. strongly recommend you order some seeds now. if you don't use 'em, you're out maybe $25; if you do decide to, you're ready. plenty of places on the internet sell them, including www.iamshaman.com and www.psychoactiveherbs.com. and i'll repeat my strong recommendation that you start the D3 regimen.

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.