Lieutenant2

And there are two of the biggest barriers we have faced in the history of CH. First, we look to the "renowned researchers" and put them on a pedestal, waiting for them to hand down their wisdom and treating only their words as valid. We can all go ahead and name them, Goadsby and Sewell and so on and so forth. . .I'll even throw in hacks like Halpern. We canonize them based on what, exactly? I can appreciate their work, but they are not gods, nor should they be the only ones whose work is considered valid. Second, the old hypothalamus thing again. It's a little like quantum physics, really. If you fixate on one thing for long enough, your observations will confirm everything you see, and that will be your "fact". So for years, we have been stating, without doubt, that the hypothalamus is the root cause of CH. But what does that particle do when you're not staring at it? What if we've been staring at the hypothalamus for so long that it has caused us to form incorrect hypotheses about CH? I don't mean to bust anybody's balls here, but I see a lot of cognitive dissonance when it comes to CH. We hold these things as facts because we can't make ourselves believe otherwise. It's hard to point the finger at something we can't see, medicate, or surgically remove. But let's face it, the mechanism behind CH meets all three of those criteria, doesn't it?

Little update here. . .I've been asked to share this additional link to some basic FAQs about 5-MeO-DALT. There has been a lot of discussion and experimentation taking place in the Facebook CH group, it seems that most people are turning to social media for their CH discussions now. But in an effort to help overcome some of the overly-scientific jargon. . . https://www.dropbox.com/s/ug6orptw9vzujgc/5meo_FAQ.pdf?dl=0

I like the Horizon Pro-20A scale because it comes with a little measuring tray that is perfect for handling powders. It's available for under $25 US. And I hope you meant a 15mg dose. . .always start low. As we learn more about 5-MeO-DALT, it is becoming apparent that higher doses don't necessarily mean better results. Most CHers, even some seriously refractory chronics, are getting very good results at 15mg every 5 days. No point going higher in dose if you don't have to!

Lt2, to help me understand it better as I read it carefully in the next couple of days, can you say a few words about what you see the paradigm shift as being? Yessir. . .I think your follow-up to Fabac was a pretty good synopsis. The very short version is that, for 5+ years that I'm aware of, the bulk of clinical research has focused on hypothalamic malformations, serotonin, and a very narrow band of related possibilities. Following those lines, most of the research being done has worked toward these ends. Everybody has been looking for the magical "thing" that causes CH. With the results of this study, we are seeing the first (to my knowledge) peer-reviewed work that is pointing to something else. Not only to something other than the hypothalamus, but in fact to something other than a "thing", a malformation or tumor or other disease. This study starts to point to the wiring in our brain. . .wiring which develops over our lifetimes. And the concept of neuroplasticity should be doubly exciting, because this fairly new tenet of neurology means that this wiring can be changed.

Not saying it will have a major impact on your ability to use seeds or your addition GI issues, but I have always found famotidine to be the best sidekick to some of the meds we take that can cause reflux and other problems. It's a histamine receptor agonist, and helps the stomach limit acid production. Plus, it's dirt cheap!

All due respect, anybody who is upset with this study clearly doesn't understand it. This is a critical paradigm shift in cluster headache research that opens an incredible number of new avenues for research and, ultimately, treatment. This is the best news we as a patient group have had in the 5+ years I've been involved. Just my $0.02, of course.

One of the drawbacks to DMT (aside from the obvious) is that it's very non-selective in its receptor binding. Since it so closely mimics serotonin, it will basically get in wherever it can fit in (that's a massive oversimplification, of course). But for CH, it's really like having a mosquito on your leg and blasting it with a shotgun. You may or may not get the mosquito, but you're sure as hell gonna get something! If you want a better tryptamine, 5-MeO-DALT. Just sayin'.

You seriously should consider reading Dr. Mate's book: "When the Body Says No". Your post is basically a summary of the book! Or at least suggest it to your brother. It's fascinating stuff, and I believe it holds a key to understanding where CH comes from.

I think you have to smoke the banana peels. Just sayin'.

Hey Par. . .unfortunately, the Sandomigran is a bit beyond my depth of knowledge. I understand it pushes some of the same "buttons" as the tryptamines and other common preventives, but seeing as that's only about 10% of the picture, I really have no idea how it might work. But I would assume that any doctor writing that prescription for CH would at least have some information or history of success with it. Pretty common for migraines, from what I've read.

Very nice analogies, diamondmaker! In fact, I guess what we're really talking about here is both psychological/emotional AND physical, because there is of course a manifestation of it that is visible. Plus, it hurts like hell and we're not making that up, despite the attempts of some docs to call it psychosomatic pain! I also work off of this whole concept of a "feedback loop" that we first need to interrupt before we start treating root causes, and that interruption can be very much physical. But I digress. . .probably a different topic altogether. Synaptic pruning and all.

Yeah Par, I think it might be a good time to stop all tryptamines and get some medical advice. Oxygen can be deadly, as silly as that sounds. Falling asleep with 12lpm running isn't a good idea. We're equipped to breathe ~20.8% oxygen at atmospheric pressures, not 100% oxygen.

Hey Par. . .glad to hear you're being persistent! Something I have learned over the years, fixing CH isn't a pill or a potion, it's a PROCESS. It took us years to develop this disorder, it takes time to get rid of it. But that's a totally different topic. . . Basoon, CHfather has a great question there. (He and I are going to open a research lab if we can get along in the same room. ) But yes, each of us has a different response to any form of psychedelics. Someone I know was very comfortable at 15mg, only feeling a slight buzz. Able to read, carry on conversations, totally normal. And this is with zero history of recreational drug use (I always have concerns about people who may have "fried" some receptors in their younger years). I also know of a person with a long history of psychedelic use, bot recreational and as treatment, who is currently using that same 15mg every five days, very little in the way of psychedelic effects, and is getting excellent CH relief. I guess it should be noted that all tryptamines are different, too. So the "trips" from psilocybin, LSA, LSD, synthetics, etc. really can't be compared apples-to-apples. Only from personal stories here, though. . .the effects felt by the average person on 15mg of 5-MeO-DALT are approximately the same as the effects of approximately 75 RC seeds extracted for 4-5 hours in alcohol, only shorter-lasting.

Hey Par. . .sorry to hear about your CH taking a turn for the worse! Please don't let yourself suffer in the name of some experiment, do whatever you have to do to get out of the pain cycle! Also, there are some good threads in here, probably from about a year ago, discussing the whole episodic vs chronic thing. Being chronic is not a death sentence, and from personal experience here, I feel being chronic might be better. Sounds crazy, I know. But try to find those threads, they might give you some perspective and help you get your mind in the right place! Stay strong and fight!

Yes, well. . .as much as I respect your opinion and your education, I will just disagree and leave it at that. I assure you, I speak from direct experience as a chronic CH patient who has not had a CH attack in 11 months, and I am not the only one, and there are a couple people with "PhD" after their names who are helping with this. . .so, would I be willing to bet a paycheck that I'm right here? Absolutely. Unfortunately, there is still much work to do, and arguing about it in a public forum is less than productive. Sometimes it's hard to see the forest for the trees. And even if I'm 100% wrong, don't you think there are enough people turning that same stone over and over and over? Once cognitive dissonance sets in, that pattern can become automatic.

Thanks, CHfather! Couple interesting points. . .you mention 2-bromo-LSD (BOL-148) a something that treats a "physical" problem, but I don't see it that way. Psychedelics get their results because they are treating a mental/emotional issue. Psilocybin is probably the single best treatment for PTSD, and that disease is 100% emotional. Meds that treat the physical are those that alter a structure, so for example verapamil altering calcium channel ions. Psilocybin, LSD, LSA, and even BOL (it's just LSD with a bromine molecule stuck to it, high school chemistry) treat the mental state/emotions of the patient. I can't think of a single physical disorder that psychedelics do treat, honestly. People don't go on ayahuasca trips to Peru to cure cancer, but they sure do go for depression! :-) Also, yes. . .I (allegedly) was one of the first to trial 5-MeO-DALT. That experiment took place late last year, and the last dose I took was probably in February (as a test dose, not as a regular treatment). I sat on that info for a while, hoping to get someone smarter than me interested in it. But alas, no takers. What I will say is that, for me and only me, a pretty unique combination of mild anxiolytics and overlooked neuroprotectives have had a long-term effect on making me totally pain-free. Could be a fluke, which is why I'm still playing around with it. But it sure as hell is a nice fluke!

Interesting dynamic here, in that the doctors who practice medicine are not the doctors who research, and vice-versa. I don't blame them individually, it's kinda like the guy who designed your car isn't the same guy who works on your car when it breaks. Want to move the science forward? Do it yourself. You'd be surprised at how easy it is to learn about the brain, its mechanisms, cluster headaches, etc.

Interesting stuff, for sure. And I am inclined to agree to the extent that it pertains to SIGNALING. It would be very hard to convince me that there is a physical malformation in the axons/dendrites of the cells in the hypothalamus. This is probably splitting hairs, since we tend to think of the signals in our brain as electric signals, but they're actually chemical signals. So is "bad chemical channels" the same as "malformation"? Yeah, that could be argued. What I do know is that attempts to treat CH as a physical disorder (surgery, electrical stimulation, medication) have failed or are temporary at best. I also know that I am a refractory chronic who hasn't had a full CH attack since 11/08/2013, and I haven't touched prescription meds, tryptamines, or any medical devices. What I have done is treated what I feel was the root cause of my CH. There will be more to come on this. I just like to encourage people to think outside the box that has been built around us.

Don't get too overly-excited about this thing. Their European trial results were meh, at best. The two people I know who were in on the initial US trial got no relief from it. It's a reach, at best. . .at very low-risk to the company, because it's non-invasive and non-pharmaceutical, so their development costs are nil. Now, studying glutamatergic activity and various inhibitors, well, that's not a bad place to look if you know what you're looking at.

Thanks Tim! Some of us were talking about that in the back of the room, basically trying to do the math. We weren't sure to what extent you were getting a reduction in frequency, that was probably our biggest question. Thanks for clearing that up!

Hmmm. . .well, in basic terms, when we use tryptamines to treat CH, they don't really "stick/unstick", what they really do is plug into our serotonin receptors, send a signal downstream (in our case, the signal is basically "stop draining serotonin randomly") and then they're gone. So as long as the signal is sent, there's not much else we can do for about five days. Effectiveness is really all about how many receptors we can hit and the strength of the signal. As for the MRI, if you haven't already had one, you definitely should. If you only have CH, your MRI is going to show absolutely nothing, like all of ours have. I did get a disc of cool pictures of my skull, though!

Par. . .I couldn't find any data on affinity or downstream signaling for any of the other substituted tryptamines, so I'm not really sure where they may lie on the spectrum. Technically, I guess any tryptamines is fair game for self-treatment of CH as long as we know what we're getting into.

Hey Par, good update. The nocturnal thing has me really baffled, it seems like you're getting some relief during the day, yet still have the nocturnal hits. Strange. As for the correlation between diabetes and CH, on the surface, blood sugar shouldn't have anything to do with your attacks. At least not in the classical definition of what CH is. Personally, I work off of a totally different theory of what causes CH, it's not a popular theory, but in my world, your diabetes would have an impact on your CH (could be positive or negative, really. . .depending on whether it's a stressor for you or whether it causes synesthesia). Total amount-wise, increasing the dosage shouldn't necessarily improve your results. It will always have the same 6nm affinity for your 5HT2A receptors. If you do decide to ramp up the dosage, I would advise against going higher than 30mg. That's getting into the "recreational" range. I believe the most important part is the 5-day dosing schedule, actual amount is secondary. Please keep updating us! There are several other people using this who are not members of this forum, so I'm keeping notes on each of you.

Also good points. All three of those studies, and especially the 2nd and 3rd, identify activation/abnormalities in the hypothalamus DURING AN ATTACK, even in the third where they induced a "mild NTG headache" in episodics who were out of cycle. An attack is an attack. So in my opinion, saying there is unusual hypothalmic activity during an attack is like saying we experience lacrimation during an attack. Of course we do. Show me a measurable difference in the hypothalmi of CHers vs. non-CHers, and I'll start to believe that there is a physical cause. And then we can laser that sucker out and be done with it. I also think those seasonal changes induce exactly thy type of stress that Tony and I are referring to. Whether it's left over from our genetic ancestors (migratory season, hibernation season, mating season) or more modern (turning the damn clocks back, driving to work in the dark, dreading the cold of winter), it's there. I wonder what would happen if we took a small sample of cluster headache patients and treated them solely for mental/emotional problems? If we addressed the root cause and also prescribed medications designed to repair the frazzled neural circuits in the brain, and not just suppress pain symptoms. It would be interesting to find out.

I love this thread, honestly. These are the types of discussions we should have as a patient community. We all have it, now what IS it? Alleyoop, thanks for the book suggestions. I have put them on my list. ANother one I'll add, it's entertaining as hell and it's a must for anybody interested in brain science: "The Tale of the Dueling Neurosurgeons" by Sam Kean. It's like a PhD-level education in neurology, but told through stories of people throughout history who have suffered strange and specific brain injuries. Really an awesome read. Anyway, I think the main point any of us adventurous types have to consider: CH is not a physical disease. If it were, it would show up on an MRI, CT, or have a marker in the blood, spinal fluid, etc. "It" isn't something we can cut out with a scalpel. So, let's start looking deeper. Whether it's stress response, emotional disorders, an endocrine problem, etc. . .we have some treatments that are good, that treat the physical part (serotonin flood, immune reactions). Let's keep pressing to find treatments that are GREAT, that treat the x-factor. And Tony, chill out with the coffee, brother!