Lieutenant2

So, that book is very valuable but you disagree with the entire concept that it's based on? Interesting. . .

Ahhh, good stuff! And all very solid points. Now, a point I should mention. . .I'm not defining "stress" in the classic sense (late for work, too many bills to pay, kids fighting, etc.). I'm mainly talking non-environmental biological stress. Short example: When we were animals on the savanna, "stress" was 60 seconds of running and screaming because we were being chased by a lion. In 60 seconds, either it was over or we were over. We evolved from some of those animals with the same stress-handling equipment. The amygdala identifies the danger, the hypothalamus decides what to do about it, and the adrenals blast us with hormones to make it happen. Only now, stress isn't a lion chasing us for 60 seconds, it's a low-level but constant grind, present 24 hours a day. But we still have the equipment for the 60-second sprint. Everybody has a different response, but people with idiosomatic disorders (like CH) seem to respond negatively with physical symptoms. By this definition, early in life or late in life doesn't really matter, it just happens when our brain says, "OK, that's enough of this crap!" An excellent read that I strongly recommend to every CHer is "When the Body Says No" by Dr. Gabor Mate. It changed my whole outlook on cluster headaches.

Exactly, my friend! Which is why I cringe every time I see someone post "it's your hypothalamus, take some psychedelics, there's nothing else you can do!" To me, this is the equivalent of "Why do you need a phone in your pocket? What's the point of going to the moon? What kind of idiot would climb a mountain?" I fail to accept that this is as good as it gets. (PS - For the record. . .it's not.)

Hey Tim, thanks for sharing your experience in Nashville. I thought you did a great job with the presentation, I'm sorry it got a little bit sidetracked when you were pressed for details on whether or not the study was blinded, those questions shouldn't have been asked during your portion of the presentation! What some of us in the back of the room were wondering about was the risk/benefit of this implant. You mentioned that stimulation of the SPG using your device can usually diminish or abort an attack in 8-20 minutes, but not all of the time. Also, your frequency of attacks has remained unchanged, correct? So, all things considered, you're looking at essentially the same rate of abort as high-flow oxygen, with a somewhat invasive surgical implant. Personally, do you feel the benefit was worth the risk?

Hey Tony. . .good post! You know we share an awful lot of theory about this whole CH thing, so I absolutely agree about homeostasis. But I like to take it back one step further. What if it's not the hypothalamus? What if CH is not a physical disease, but an emotional/psychological one? So we present a stressor to the brain (whatever it may be), we have an inappropriate stress response that signals the amygdala "Holy shit, bear! Run!", our brain leaps into fight/flight mode, releasing a bunch of adrenaline and cortisol, we get a serotonin drain, our immune system says "Hang on, there's no bear, what's going on here?" and launches a full histamine-like response, and we get stabbed in the eye? So, when we load up on pharmaceuticals, they can help treat the immune reaction and the things that happen "downstream", but the "thing" is still there. When we use tryptamines, we are resetting some of the serotonin receptors and stopping the "slosh", at least temporarily. But the "thing" is still there. It's funny how the more medications we take, the worse we feel in the long run. The body reacts to every single thing we put in it. Take 10 pills a day, the body has to identify and react to all 10 of them. I can personally name at least six CHers who used to be episodic, and have turned chronic, who attribute it to pharmaceutical use.

A little update on the research data here. One of the important factors in how well a tryptamine "works" or doesn't work for us is its affinity for our 5HT2A receptors, basically how well it "sticks". Some stick very well and are highly effective, some don't stick well at all and are less effective. This is only one factor, but it's an important one. 5-MeO-DALT has a nanomolar affinity of 6 (6nM). If you placed this on a line graph of tryptamines, it means it falls right in between LSD and psilocybin. So, a lower affinity than LSD but a higher affinity than psilocybin. Take from that what you will, I just thought it was a good indication of where this stuff lives in the "tryptamine family".

Thanks, Tangerine! If you think about it. . ."only" 1g is over 60 individual 15mg doses, allowing for measurements being imprecise and a little spillage. So even for a chronic at five-day dosing increments, that 1g is almost an entire year's supply.

Hey Par. Well, I won't pretend to be the expert on the D3 regimen. I will only share my personal experience that myself and every other chronic that I know has tried it, it has worked for a while, then has stopped working. Episodics seem to have better luck. This leads me to believe that it's an immune system buffer. So, your cluster headaches are still there, but high enough levels of calcidiol tell your immune system to "chill out for a while", and not to stab you in the eye. But after a while, your immune system just has to react to a perceived threat. (That's really what our pain is. . .our immune system freaking out over an invisible threat and reacting inappropriately). In terms of blood test, it's a 25(OH)D screen (pronounced "25 hydroxyvitamin D"). From what I read, it takes supplements in the amounts of 10,000iu-20,000iu per day, with a weekly dose of 50,000iu to reach the kind of levels they recommend. There is a ton of information about it on the other CH website's message board. 5-MeO-DALT-wise, maybe try getting your dosing consistent, spaced every five days, at the exact same time of day? Seems like most of your activity is nocturnal now, which could be a good sign that your serotonin is leveling out a bit and only flaring up at night. I can't tell you how much I appreciate your feedback on this, it is very helpful. I hope others reading this thread appreciate what you're doing for all of us!

Thanks again, Par. I've actually been looking for somebody who has used tryptamines and the D3 regimen together. Chemically, they should play well together. But it is an interesting thing to study. I do know several people who have gone from episodic to chronic, and most of them will swear it was because of the pharmaceuticals, especially triptans. Heavy sumatriptan users and a couple heavy topamax users have gone chronic. I hope you haven't turned chronic, but if it happens, there was an interesting discussion about this at the conference a year ago. Dr. Larry Schorr is a psychologist who has episodic CH, and he was talking about how thankful he was not to be chronic. I used to be chronic, and several of us actually believe we'd rather be chronic. I never sat around worried about my next cycle, stressing over when it would start. I knew when I was going to get attacks: 24/7/365. No surprises. Sounds crazy, but there's some truth in it. To give you a little hope here. . .I talked to one guy in Nashville last weekend, a chronic with multiple headache types. He hasn't had a PF day in 18 months. He started taking 5-MeO-DALT in 15mg doses every five days like clockwork. It took a few doses, but he's now getting 2-3 days PF between doses. He went the entire weekend PF, including drinking and airline travel, usually big triggers. After re-reading Halpern's research, I am more convinced than ever that the timing is important. With this treatment, we are trying to level out serotonin. It gets poured in, and is supposed to drain out at the same rate. We CHers have bad drains. With the tryptamines, we are temporarily "blocking" the drain. Because it's a time-sensitive neurotransmitter, we have to plug the drain at regular intervals. Again, just my theory. . .but it seems to have merit.

Par. . .sorry to hijack here, but obviously I am familiar with these drugs. Short version is, you're talking 4-substituted tryptamines. As for their effectiveness in treating cluster headaches, they would most likely be no better or worse for an individual than any other tryptamine, natural or synthetic. The only real variable being receptor affinity (how well the molecule "sticks" to the critical 5HT receptors). That being said, these are dangerous substances if you don't know what you're doing. 4-ACO-DMT being the least dangerous. The reason I selected 5-MeO-DALT for my trials was primarily the safety aspect. If one were to try one of these other substituted tryptamines as a self-treatment, it's critical that you do it under very controlled conditions. Perfect dosage measurement, lowest end of threshold dose, close observation, etc. Now, re: the two replies above. . .Par is following established scientific theory and looking for new treatments for his CH. And I assure you, that is how it is going to happen. No doctor is going to find a new CH treatment. I believe I've seen posts from both of you about "busting", so a simple google search would have told you that Par's question is extremely valid and relevant. I know this already: http://figshare.com/articles/Treatment_of_Cluster_Headache_Symptoms_using_Synthetic_Tryptamine_N_N_Diallyl_5_Methoxytryptamine/1119697

Thanks, Par. I hope you don't mind me asking questions in a public forum, I just think some people might be interested in reading about your experience, and it might help them. Another question if I may, do you take any other medications/supplements not related to CH? I know you mentioned some vitamin D3, I'm just wondering about any thing like melatonin, or anything to help you sleep? Anything for digestive issues, or nausea, like zofran or anything? Also, on days like Friday and Saturday when you're getting attacks, do you experience any digestive problems? Upset stomach, constipation, things like that? There are two variables I'm curious about here. Since this stuff is most likely absorbed in the stomach (~10min onset makes that pretty obvious), do we all possess the same ability to absorb it, or do some of us not absorb it as well? Second, I wonder about the affinity for serotonin receptors this drug has. The last work done on this was in 1989 with a group of 13 psychedelics, obviously not including this one because it hadn't been formulated yet. There seemed to be a flat curve with LSD having the highest affinity, and psilocybin somewhere in the middle. If this falls closer to one end or the other, it could explain why some people benefit and some don't, just like those other compounds. Sorry for getting geeky there.

Hey Par, any updates for us? It's been a week, just curious as to how you're doing and how you may have adjusted your dosing schedule. I just returned from Nashville where I spent some time talking to one very intractable chronic who has been dosing with this at 5-day intervals. He hasn't had a PF day in 18 months, but he's been getting 2-3 days of relief between doses now. It's not perfect, but every day off is a great thing for a chronic.

I stand slightly corrected. The project has (potentially) a new owner in Savant HWP, Inc. I wouldn't change my opinion that it probably won't happen, but at least it looks like a more prepared and experienced company is in charge.

Thanks for that clarification! Big difference between "considered suicide" and "suicide rate", thankfully!

I think we all know your neighbor! HAHAHA! Just smile and say thanks, fighting that battle will only sap the energy you need to fight your CH. But 55% suicide rate? What is that stat? If 55% of CHers committed suicide, my facebook friends list would be half its size and I'd be going to a lot of funerals! Plus, I think we'd hear about that on the news or something!

Thanks Par. . .and good question, Tangerine! I've been guilty of the same. I have personally experimented with at least five things that stopped my CH attacks, at least temporarily. Each time, I intentionally let the CH return because I needed to find out if it was effective, placebo effect, fluke, etc. Some of us are just natural tinkerers, I guess.

Hey Klank. . .I'd love to share it, actually. But it's probably not smart, there are far too many extremely strong opinions on the other side, so I'll stick to the facts. Entheogen Corp. hasn't published any updated research since 2010. When John Halpern presented at the ClusterBusters conference in Chicago last year, he basically said, "Sorry, I wish I had something to report." Neither Halpern nor anybody from Entheogen is scheduled to be at the conference this weekend. Slightly my opinion here. . .when the interested parties failed to get orphan drug status or achieve financial backing from a major pharma player, that's basically where it ended. A brominated LSD molecule would be an almost impossible sell to the FDA (and most other nations' policy-makers as well) without very, very deep pockets to ram it through clinical trials. That will probably get me flamed a little, but my interest is in outcomes. I don't like seeing CH patients sitting/waiting/wishing that someone is working on a miracle drug. Know what I mean?

Geez, Par. . .I'm just going to keep my mouth shut. I think I destroy your PF time every time I post something! If you don't mind me asking, have you had any history of being somewhat resistant to psychedelics? Example, when you were using MM, did you find that you didn't feel any effects at the same dosages that other people did? Or that you needed to use more to get the same effects? Just curious.

Not ever going to happen. There are a variety of reasons, some objective and some subjective. I'll withhold my personal opinions, and only point out the obvious.

Par, as always, happy to hear the good news! Tangerine. . .only speaking anecdotally here, and based on the experiences of other episodics who use tryptamines. But as an episodic, there is no benefit to using tryptamines when out of cycle. In fact, it could prove detrimental due to tolerance issues. But you don't need to wait until you're in cycle, either. If you know exactly when your cycle is going to start, you can start taking weekly doses a couple weeks in advance and most likely skip your cycle. If your cycles are irregular, you should start dosing at the first signs of trouble. And as we see with Par's case, playing with the dosage and timing may be necessary. I do see that as the one advantage of this chemical, you have control over the dosage. Par knows he took 25mg of tryptamine. Whereas, with mushrooms, it doesn't matter how carefully you weigh your material, you will never know how much psilocybin you are getting, nor do we know what all those other chemicals might do.

Damn, that was bad timing Par. Sorry to hear that! I would suggest re-dosing every five days until you are absolutely sure you are clear. With refractory cases, you're probably looking at 4-5 consecutive doses at five days apart. As for the amount, I've always thought 15mg to be the "right" amount, going much higher shouldn't make a difference. . .however. . .you went to 25mg and tolerated it well, so you might want to stick with your 25mg dose tonight. Some of us just have more or less sensitive receptors than others when it comes to tryptamines. CHfather, being totally honest with you, I don't know where these additional people sourced their 5-MeO-DALT. I do know that one of them is in Europe, where it is a bit easier. Several places will ship to the US, but there's always the risk that the package won't get through Customs. This is actually a low risk, though. Customs generally doesn't bother with a few grams of anything, unless they have reason to flag it. It really is unfortunate that we have to go through semi-shady channels to get something that hasn't even been declared "illegal". In my opinion, the best way to find a reliable vendor is through reputation, reading feedback on places like Reddit. They have a ton of sub-forums dedicated to research chemicals. I have talked to a chemist friend about producing it in a home lab, and she said it wouldn't be difficult, there would just be a huge up-front cost for equipment.

Hey Par. . .any way you look at it, that is good news! I appreciate you keeping all of us updated on your experience with the 5-MeO-DALT. There are currently a few other people trialing it (unofficially), and the people who are having great success are episodics and patients with only a single diagnosis of cluster headache. One patient I know of is having only limited success, but is a multi-headache diagnosis (migraine, NDPH, etc.)

Somewhere in here is an interesting thread regarding acetaldehyde. You should give it a read, there is some interesting information there. It may be more relevant to your husband's CH than you think. Simply not absorbing enough nutrients would lead to other health problems long before it would cause cluster headaches. But acetaldehyde? Interesting stuff.

Good stuff, I really appreciate the info! I definitely understand the "ghost" language you're speaking. I was always in the habit of calling those "shadows", the pressure is there and you feel it coming, but the pain never really hits. But it's enough to wake you up. One of the big problems with CH, too. . .we need sleep for our brains to recover and kick the CH, but the CH prevents sleep. Ugly cycle sometimes! As for the whole D3 thing, I can only say that no 25(OH)D readings were taken. Partially because the study was only restricted to the tryptamine, and no other line of treatment. I will also admit to my personal bias here, I feel the "success rate" for the D3 thing is severely over-reported, especially in chronic cases. I have my own theories about this, but I'll leave it alone. Hoping your cycle has come to an end! Storing your 5-MeO-DALT in an airtight container in a dark,cool place should keep it potent for years, let's hope you don't need it any time soon!

Hello Par, Again, thank you for keeping me/us updated on your experiment! Interesting to see that you're getting some pain-free time, I always consider that a good thing no matter what is causing it! It's really hard to tell what might be happening, you're 5 months into what is normally a 3-month cycle, so it's possible that your cycle is just ending. Or it's possible that your cycles are getting longer as time goes on, that was the case with one of the participants in the study. There is a possibility that the use of 5-MeO-DALT is triggering some of those shadows you've been having, I know people talk a lot about "slap-back" headaches, and they tend to take different forms in different people. Something else I wanted to ask. . .are your attacks random throughout the day, or mostly nocturnal? There is definitely a difference between the "randoms" and the "nocturnal-only" CH types when it comes to effectiveness of serotonergics. Hope things continue to get better for you!