CHfather

I get that Lt2 isn't going to/can't participate in follow-up discussions, but looking at this again, I see that 5MeO-DALT seems to be a lot more effective -- in these two cases -- against CH than the usual busting agents. Many PF days immediately after one administration, and after each subsequent one. This is not the normal pattern for busting, except in very exceptional cases. No slapbacks, either, clearly. So this doesn't seem to me to be only a matter of more reliable dosing, or even of what Lt2 says, >>only an option to supplement current busting treatments.<< To the extent that these results are reproducible, 5MeO-DALT looks like a far better treatment than current busting substances. You just can't attribute these results to dosing reliability, because plenty of people take reliable doses of psilo or LSD ("reliable" in the sense that they get effects that tell them they were ingesting good stuff in sufficient quantity) without results that are in any way comparable to these. I've been burned by getting my hopes up for a lot of stuff (Acetium and Mamajuana, most recently) that didn't do what I hoped. So to the extent that I'm raving here, it's very strongly tempered by my full awareness that this is two people with no controls. But I wonder whether anyone has a theory about why it might be that this chemical seems to be a more effective CH treatment. And of course I wonder, where/how do I get some, today?

At first I thought, "Wow, what a doctor! Don't see many of those, on top of things like that!" Then I noticed that you're from Boston. Let me guess . . . Your doc's last name begins with the letter M? Anyway, is your O2 company delivering a 25lpm regulator? That would be very cool. Do you have what used to be called the O2ptimask (now called the "ClusterO2 Kit")? People love 'em. http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=o2ptimask

Thanks, Lt2. I saw your handle on the list of people who were at the site a few days ago, and immediately wondered what you and your always-curious mind were doing these days. Now we know! Looking forward to meeting you at the conference.

And thanks so much for letting us know!

I'm sad to report that Acetium doesn't seem to be helping my daughter, after about ten days of taking it. She feels like maybe her attacks have become worse since she started it (though as you all know, there's no way to conclude cause and effect in this situation), so she's going to discontinue it, at least for a while. Disappointed.

 Well, there are lots of treatments that help, in addition to busting, and it doesn't seem reasonable to me to think that they all involve acetaldehyde. Hey, maybe they do -- I'm not saying you're wrong, and I greatly value your research and thinking about this, but maybe dealing with acetaldehyde is just another treatment pathway, or maybe it works at a deeper level, closer to the cause, as a preventive (assuming that Acetium will continue to be shown to work in either way, as a treatment or as a preventive). As I think about this, I realize that I have no idea why/how psychedelics treat CH. In his post on the topic over in the CB files, TommyD writes >>We don't know how this works. There is informed speculation on how such small amounts of substances can overcome such large headaches, but there is much to be learned. It’s serious neurology, of course, Some ideas seem to center on the way tryptamines constrict blood vessels; others involve the way the indole-ring molecule of the tryptamines fits into seratonin receptors.<< Do we know more than this now?

The thread from which didgens has extracted this passage is here: https://mycotopia.net/topic/72016-extracted-lsa-converted-to-lsd/Â I have to admit that I have practically no idea what any of these posters are talking/arguing about, but (a) others seem to disagree with this poster, who is responding to a post by "Defiance" in which Defiance disagreed with someone about the role of acetaldehyde in certain LSA extractions (I think); ( these folks are pretty funny in their sparring.

No, not really. Hers are quite regular, mid-summer and mid-winter. We had hoped that maybe the big barometric changes happening where she lives might have brought on this cycle or at least made it worse, and that it might abate when the changes stopped or slowed down, but no luck -- it's her usual cycle.

Tony, with apologies if you have already answered this somewhere else . . . How much Acetium are you taking, and on what kind of schedule? Is there any consensus among the people you know about dosage and timing, or does it seem to vary from person to person? I'm assuming it's pretty much entirely a preventive for you all, not an abortive. Thank you!

Siouz, I am also very glad that you're feeling better. I understand why you want to give it a go without the meds. Not so much about postponing busting (except I have the sense that you don't really trust seeds after your last experience and you don't have access to MM (and you're a lawyer)). But it's not clear to me why you wouldn't give the licorice root and/or D3 a try (or at least get your D level tested, which I assume wouldn't be too hard for you to arrange given your work location). These things make a difference for a lot of people, and a big difference for some people, and they're safe (done properly), legal, and probably even just generally good for you.

Sweeter words were never spoken (or written, I guess).

We ordered some today and my daughter, who is episodic and in cycle, will start taking it as soon as it arrives (Saturday or Monday). Will let you know.

siouz, I was very sorry to see your name show up here again. I remember what you went through last time. My heart goes out to you. You tried almost everything, so thoroughly. Even indomethacin, which "shouldn't" have worked, but gave you some relief for a while. I'm just going to say some things here, hoping there might be something helpful, or a reminder of something that might help. Mostly, just a way of reaching out. The only "major" thing that's worked for a lot of people here that I don't think you tried last time is licorice root. Here are the instructions for that. You could probably pick some up and start it right away, if you don't have any of the contraindicated medical conditions. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Of course, you'll be getting O2 right away. I'm assuming that will be no problem for you. If it looks like there will be any kind of significant delay, we could guide you through quickly setting up a system using welding oxygen. I know the D3 protocol didn't seem to help you last time, but I'm wondering whether you have had your D levels checked recently. One thing that has been found, I think since the last time you were here, is that sometimes/often a serious D3 loading program, taking very high levels of D3, is needed to get the levels up into the desirable range. The latest version is here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 I don't remember how energy drinks worked for you last time. Energy shots actually seem to work better for some people--just as much or more caffeine with less hassle to get it down. I think most people would urge you to give busting another chance to help you. I think you'd be starting earlier in your cycle this time than you did last time, and if so, maybe that will lead to better results. If you decide to do seeds and order them from tranceplants.net, you should get the next-day service, because every other shipping method takes a long time. Some newer things: A bunch of people in Finland have had good results with Acetium, which is now in clinical trials to assess its effectiveness in relationship to CH. It's discussed in this thread, and at the bottom of the thread RazorPP gives a link to a place to order it: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1403366830/4 This is not a particularly new idea in itself, but a person who had a miserable time with CH reported the other day getting good results with a nutrition/cleanse program. That thread is here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1405203752/0#0 Of course, we're all wary of treatments that are brought to us here with big claims, but in both of those cases they came from long-time members with some serious CH history. I'm just talking here about non-conventional medical things, in part because I feel like you had tried virtually every conventional medicine approach, except for lithium. I know from close experience (and the research reports) that lithium can work, but I fully understand your reluctance to go there. There's a reason that it's usually only prescribed to people with chronic CH. I'm remembering that one or more people here have had some success with a particular kind of nerve-block injection, but I don't remember the specifics. I think Bejeeber remembers the particular type of injections (at facets, as I'm recalling), so maybe he'll clarify that. But obviously these are probably only possible long-term approaches, and we're looking for something that will help you now. Again -- I'm so sorry that you're here, but I'm glad you came here and I'm hopeful that others, wiser than me, will be able to help.

Thanks for the info, Razor. Sorry about the MJ!

Razor, where did you find it on the internet? Thanks. Is the mamajuana a thing of the past for you -- worked for a while and then didn't?

Thanks, H-L. Sad story.

Thanks! May your success continue.

BB, I remember what you've gone through. I'm thrilled that you have found something that works so well for you. We have had other people, from time to time, report on success they have had with nutritional programs. Unless the program is too complicated to describe, and there's no link to it, I think it would be beneficial for you to describe it here at the board. (I guess whatever you would tell people who message you.) That way we'll be able to find it in the future if the subject comes up again and you're hard to reach. Of course, you don't have to do this if you don't want to; it's just a request.

All the more reason that, if only just for his general health, he should be doing the D3 regimen. I'd say that 95% of people who come here have some level of fear about taking RC/LSA. I would say that 99% of them have found their fears to be groundless once they took the seeds. This is not telling you to get more (since, yes, your current ones are too old to be reliable) and get him to take them. Maybe the nature of his CH (Kudrow called it "atypical," if I'm remembering correctly(?)) is such that preventive busting (or busting during a cycle) might not help, or you might never know if it helped. But if you/he wanted to, since he's not desperate, you could start with a small dose, maybe something like 20 seeds (which not long ago was not considered a particularly small dose) or even fewer, see what happens, and gradually work up until you reached a substantial dose that still caused him no effects. If 30 cause no effects, which it most probably won't, you could confidently go up to 40. 40 is probably enough to do the job in (guessing here) 75% of cases. If he has no effects (or no undesirable effects) at 40, you could stop there, or you could try higher. At these levels, increments of 10 seeds are not going to cause significant differences in "psychedelic" effects. (I put psychedelic in quotes because he's more likely to feel a little high, like a couple of beers, than to experience anything trippy.) With surgery, of course, you can't really do that. You're all in from the get-go. I hope your husband is doing okay or better than okay (whatever that might mean in his circumstance). (Maybe you're onto something. Maybe alley's remission was a result (or partly a result) of lots of sunshine boosting his D levels. And, yes, tanning beds also boost D levels.)

didg, i can't see any reason why he shouldn't be doing the D3. he has CH. D3 helps. for that matter, i can't see how preventive busting would hurt, unless you/he object to it for some reason (legal, moral, medical, whatever). i guess the "nerve" is the suggestion that a surgery, with potential severe side effects (and no promise of a "permanent" remission) is a preferable alternative to a strategy that works very well for many people, with no significant side effects (none that are known, in any event).

didg, my own two cents is that even if this works as described (for some people, certainly not all), there's no proof at all that they will be "permanently without pain." permanent is a long time. there are plenty of people at this site who have been basically without pain for long periods (and i think you can assume that there are others who do not hang around here after having achieved excellent results); and there are others who found lasting relief that didn't turn out to be permanent from one strategy or another. if i've been following your son's case correctly, it seems to me that he has tried practically nothing that has helped people here achieve successful long-term results. busting, preventive busting, D3 . . . maybe i'm wrong about that. but there are people here (and people here only rarely, such as brew and tingeling), who credit very long stretches of being pain-free or nearly pain-free to those three elements.

Thank you for following up on that, overit. Dr. Sewell deserves to be known and remembered.

didg, Danny is the son of the clinic founder, Dr. Shevel.

overit, Just so you know something about the history here, Dr. Sewell was a great friend of busters, and of people with CH in general. He died suddenly and unexpectedly last year, very young. He was on the faculty at Yale Medical School. He maintained a CH-related blog (clusterattack.com), and he was very, very generous with his time, with me personally and many others. He is greatly missed.

THMH and overit, A couple of other things about the Sewell poster, which do not contradict THMH's position, but amplify it a little: "93% of subjects ingested LSA in a dose low enough to produce no psychoactive effects." (So, the LSA was working even when there were no effects. But this doesn't change THMH's point that the only way to know for sure that you're getting enough LSA is to feel some effects. It just says that a lot of people who felt no effects still got good results.) All four people who took seeds preventively skipped their next cycle. Two of them sent in samples, and they had taken a lot of LSA: 1.1mg and 2.8mg. This might mean that a preventive dose is better if it's quite strong. (It doesn't necessarily mean that, but it could.) I suppose you (overit) might see how 50 affects you, and maybe if there's no effect, take a stronger dose a week or two later (??). http://clusterheadacheinfo.wdfiles.com/local--files/file%3Asewell-2008-aha-lsa-poster/sewell_2008_aha_lsa_poster.pdf'> http://clusterheadacheinfo.wdfiles.com/local--files/file%3Asewell-2008-aha-lsa-poster/sewell_2008_aha_lsa_poster.pdf