CHfather

Only relating to the RedBull and 5-Hour Energy, Suzz (not saying either would be better than the Fusion), there isn't much point in drinking a big Red Bull rather than the 5-Hour Energy, since the smaller 5-Hour actually has more caffeine and taurine than the whole Red Bull. If you like the Red Bull and it's working for you, no point in changing . . . just letting you know that even though it's a lot smaller and more chuggable, the 5-Hour is actually more potent than Red Bull in terms of the ingredients that we think are the important ones.

Thanks, Tony!!!! Really interesting.

You're right that the D3 regimen can be quite a few pills, but it really has, in general, a different function than MM. The D3 regimen has shown itself to be a very effective long-term preventive process for many people, so they even skip cycles or become painfree for long stretches if they are chronic. These aren't guaranteed results, but the testimonials are very strong. At the least, it seems to make attacks less severe and less frequent for most. MM, on the other hand, seems to work for some people as a preventive, but that seems to involve a tricky process of figuring how how often to take it when not in cycle. Mostly, MM seems most effective for ending a cycle, cutting it short. And it can take several administrations of MM to accomplish that. I get it that you hate taking pills . . . but how much do you hate CH cycles, would be the question. Yes, you would need to be off the topiramate for five days before busting. Same is true for the prednisone . . . 5 days after your taper ends.

You want the mask that has a bag that fills up with oxygen from the tank, and then empties as you inhale, and then refills from the tank as you exhale. Your exhaled air should not go into the bag. In order to get the maximum amount of pure oxygen as you inhale, most people block up the round holes on the sides of the mask. One or both of those holes might have a white gasket in it that stops room air from coming in as you breathe in but allows the air you exhale to go out of the mask into the room. If they both have this gasket, you're okay, but usually one doesn't, so tape that up or cover it as you inhale. Most people breathe in with the mask firmly pressed against the face, and then remove the mask from their face to exhale. Do not rely on the strap to hold the mask firmly to your face. Most people cut the strap. In part, that's because the strap doesn't give you a firm seal, but it's also so that if you fall asleep the mask will come off so you won't be breathing O2 continually. Yes, that does happen -- people fall asleep while using O2. Maybe others will disagree with me about this, but I don't think energy drinks have any effectiveness as a preventive, so if you're taking them in the evening to prevent later attacks, I don't think that will help. Probably can't hurt, except that eventually it can add up to a lot of caffeine. Topiramate will block busting, if you decide to try busting. I know this has been said before, but you really should check out the vitamin D3 regimen over the the ClusterBuster Fikes section, and consider melatonin at night.

I'm very, very happy for your results, Suzz. Great work at advocating for yourself! I have to admit that I'm kind of confused by all this. Your mask does have a bag, which fills up, right? And are you getting a regulator that goes higher than 12 lpm? If you got the "biggest" tank, you're right that it should last about a week at 30 minutes/day at 12-15 lpm. (There actually are much bigger tanks, but you probably got an M tank.) Hopefully, you'll be aborting your attacks faster than 15 minutes as you get the hang of it. Even in the middle of the night, many people quickly drink an energy shot or energy drink (or at least a strong cup of coffee) before they start on the O2 (as they're starting on the O2). That often speeds up the abort substantially, and for most people, surprisingly, it doesn't keep them awake. Your hesitation about bringing an O2 tank in your car is understood, but many people get a smaller tank, usually an E tank, for portability, so they can keep it in the car when they go out. Did you also get some kind of stand for your tank, either a stationary one or one with rollers? The oxygen company should supply that, too.

What Tony says. Oxygen will change your life, and make other steps manageable. If your doctor won't give it to you, you can do what lots of people do and create a system using welding oxygen. If you want to consider that, we can advise you. Would you mind looking at the labels on your preventives and telling us what they are? Maybe that information will not be useful -- but maybe it will. Also, have you started the D3 regimen, and are you trying melatonin, and what about energy drinks?

What great news, Tony. Thanks for sharing.

Thanks, Ricardo.

Well, I know nothing about this myself. Ricardo is probably the person you'd like to hear from. Here's what a ClusterBusters FAQ says about DMT: "DMT (dimethyl tryptamine) is a very potent hallucinogen found in many plants and animals; it’s even present in the human brain. There are a few reports of its use to treat clusters with good success. But this hallucinogen is powerful. Its effects are so intense, bizarre and outrageous, it’s not recommended as a cluster treatment." We're more about cluster headaches here than migraines, although there's evidence that tryptamines work on migraines as well as on CH. Lots can be found on the internet by googling DMT and migraine, generally seeming to conclude that DMT often helps, but sometimes (going directly back to your question) makes it worse. Unfortunately, for some reason the search engine here at this site won't search for three-letter items. I suppose if your friend was going to try a tryptamine to abort, maybe she would want to start with a less dramatic one, like LSA or psilocybin. But I'm just guessing, as I'm sure you can tell.

I-J, I'm not sure how to reply to this. By "plant extractions" do you mean psychoactive substances? If so . . . they can be effective as an abortive during an attack (a cluster headache attacks, at least; I can't say for sure about a migraine), but they're commonly used to prevent future attacks rather than to abort attacks. I have no idea whether tryptamines would have the same effect on her as triptans. No real reason I know of to think they would.

www.tranceplants.net; www.iamsham.com

Yes to both. RC apparently can lead to psychedelic effects, but at the doses taken to treat CH, it virtually never does. Legal to purchase and possess; just unlawful to process/consume. "Processing" is extremely simple: grind and soak in water. 5-MEO-Dalt is one of Shulgin's compounds. It also has no psychedelic effects (for most people) when taken at effective treatment doses. There are probably many of those compounds that would help treat CH, but this was selected by the guy who did the research -- Mitch Post -- for its low effects plus positive results (for many). As I said, the 5-Meo-Dalt is essentially legal in many US states, and can be legally purchased from some suppliers. (I say "essentially legal" because while it's not explicitly banned in most staes, there is always the possibility that it could be prosecuted as an analog drug.)

Don't want to bug you more about O2 then, Adam', except to say that a higher-flow regulator (higher than 15 lpm) and a bigger reservoir bag have helped a lot of people, particularly with a hyperventilating strategy. Also, downing an energy shot/energy drink right at the start also helps a lot of folks. But I won't pester you about O2. Here's the D3 info (though I now notice that you posted over in the CB Files section, so you clearly know how to get there): https://clusterbusters.org/forums/topic/1308-d3-regimen/ If you can't get shrooms and don't want to do LSD, you could do RC seeds (discussed over there in the CB Files, though you should get back to us if you decide to go that route), and you could consider 5-MEO-Dalt, a synthetic tryptamine that's not illegal in a lot of US states, and which has been very effective for some people. Here's a long thread about it: https://clusterbusters.org/forums/topic/3918-5-meo-dalt/?hl=5-meo-dalt Some people here are knowledgeable about the 5-Meo-Dalt, but it's discussed a lot more over at the Facebook group "Cluster headaches."

Adamlee', please, GET OXYGEN. And think about the Vitamin D3 regimen and busting. That trex ain't good for you. Of course, if you feel like you need it, you need it, and it's better than suffering . . . but there are better options. All those things are discussed over in the ClusterBuster Files section of the board, or if you ask, people will tell you more about them here.

You've got it covered, Suzz. GET OXYGEN. Insist! Do the D3. Try the energy shots/energy drinks. Melatonin at night (start with 6-9 mg and work up. Some people get up to 20 before it's effective). If you get O2 and any of those things help you, you'll feel 100% more comfortable about detoxing from the trex. I assume that one of your preventives is verapamil or another calcium channel blocker, but I can't imagine what the other might be (not a steroid, I hope). Interesting that you were being treated for hemicrania continua. You took indomethacin and it didn't work? It seems like that should have been about a one-week trial . . . If indomethacin doesn't work, it's not HC, which makes it almost certainly CH. You can get rivea corymbosa seeds in Canada legally and possess them legally. Consuming them is the only unlawful part. I think you can also get 5-MEO-Dalt in Canada, but I have not been keeping up with that legal situation. You're really not all that far from busting.

Suzz, there's a lot you need to know. I'm going to cover a few core things and refer you to reading that you really have to do before you start busting. I assume the "injectable" you're talking about is Imitrex (sumatriptan). If you're going to use mushrooms or anything else, you have to stop taking the Imitrex for five days before you take the busting substance, and during the time you're busting. Depending on what your preventive is, you might have to stop taking that, too. So you need something to deal with the attacks during that time. You don't mention having oxygen, which is absolutely critical for anyone with CH. Read this: https://clusterbusters.org/oxygen-information/ Many people also get a lot of relief from the Vitamin D3 regimen. Read this: https://clusterbusters.org/forums/topic/1308-d3-regimen/ There are other things that often help people reduce or abort attacks: energy shots/drinks; melatonin. If you decide to go ahead with this, we'll tell you more about them (well, the energy shot/drink thing is easy -- just down a cold one at the first sign of an attack. strong coffee works for some people, too.) Then, you need to read the numbered files over in the ClusterBuster Files section of the board (same place as where the D3 file is). You'll learn there about the general process (every five days), and you'll see that there are other substances you can use that don't require you to grow shrooms. Many people have good results with LSA -- generally from rivea corymbosa seeds. There's another substance that is like psilocybin but generally legal in most places in the US. It's 5-MEO-Dalt. You can read about it at this thread: https://clusterbusters.org/forums/topic/3918-5-meo-dalt/?hl=5-meo You have had a heck of a rough ride with your chronic CH. Busting works. But it's more than just taking some mushrooms. We're here to help you.

Wish I still lived in Portland, so I could stop in.

Glad for the press! I wonder if we'll see any additional traffic here. You'd think so, but in the past it hasn't really turned out that way. Thanks for participating, Denny!! I think I'd give the article about a C (C minus, for not quoting the interesting and useful stuff you undoubtedly said), but you gotta give the effort and the awareness-building an A. (If only it really worked like that -- one shroom dose (while out drinking!!) and PF after just one more attack.)

We're all about using psilocybin to treat CH here. Read over in the ClusterBuster Files section, #s 1, 2, 3, 4, 6, (https://clusterbusters.org/forums/forum/6-clusterbuster-files/) then ask whatever questions you have. You'll have to stop the triptan, though, and since your cycles are typically so short (can't really count on that continuing), it might or might not be worth it to you. You definitely want to get OXYGEN, as soon as possible. Read about it here. This is crucial for managing your CH. Also, consider the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ And many people find that quickly drinking an energy shot or energy drink at the first sign of an attack can lessen or even abort an attck.

How close are you to the Airgas store/how convenient will it be for you to get refills? Unless you're a big strong giant like Jeebs or Denny, as spiny says, that 125cf tank is a lot to lug around. It might be more manageable, though probably more expensive (how much more, I don't know) to get two 60s. (At an average 20 lpm flow rate, 125 cu ft will give you just about 3 hours of O2, or about 9 20-minute sessions.)

Many thanks, Bob, for all the ways in which you have helped everyone here and in the worldwide CH community. Your patience and determination are creating benefits for years to come. Jerry

From here, too -- all the best to all the great folks at this site, long-timers and newer members.

Thanks, Tony. Love the pic. Hope you're doing well.

I mentioned this in another post here, but figured it was worth putting here, since it seems like maybe another new thing we might have learned. In the abstract I have pasted below, it says that triptan use is a characteristic of some people for whom oxygen is ineffective. I can't tell how effective the oxygen system used in the study was (flow rate, mask, etc.). What I think is interesting is that we often tell people that oxygen seems to work more effectively during busting. I think we have attributed that to the busting, but it seems possible that maybe (so many ifs and maybes, but you all understand that) it's the detox, being off triptans, that makes the O2 more effective. Or not. Cluster headache and oxygen: is it possible to predict which patients will be relieved? A prospective cross-sectional correlation study. Haane DY1, de Ceuster LM, Geerlings RP, Dirkx TH, Koehler PJ. Author information AbstractResponse to 100 % oxygen as acute treatment for cluster headache is relative low considering certain subgroups or predictors. The primary purpose of the present study was to find prospectively which factors differ between responders and non-responders to oxygen therapy. The second goal was to find whether any of these differences would clarify the mechanism of pain reduction by oxygen and cluster headache pathophysiology. Patients diagnosed with cluster headache according to the ICHD-II criteria, who started on oxygen therapy (n = 193), were recruited from 51 outpatient clinics and via patient websites in The Netherlands. Patients had to return two questionnaires around the start of oxygen therapy (n = 120). Eventually, 94 patients were included. Clear non- plus moderate responders had ever used pizotifen more often (p = 0.03). Clear non-responders more often had photophobia or phonophobia during cluster headache attacks (p = 0.047) and more often had used triptans in the same active phase as the phase in which they had used oxygen for the first time (p = 0.02). Using correction for multiple testing, we could only confirm a statistically significant difference in triptan use. We were unable to locate the level of action of oxygen in the thalamus and cortex or confirm the sites of its action presently known, solely based on current knowledge of photophobia circuits. However, we conclude that particularly the higher frequency of photophobia or phonophobia in clear non-responders deserves further study to understand the mechanism of pain reduction by oxygen and cluster headache pathophysiology.

If you really wanted O2, you could either (a) try to persuade a doc with the substantive medical research; ( find a doc who is not an idiot and who will prescribe it; or © set up an O2 system using welding O2, as many many people have done when (a) and ( failed. If you want information/assistance with any of those possibilities, let us know.