CHfather

Coyote, What Jeebs said. You're making it too hard on yourself using just the imitrex tablets. Get the sumatriptan injectors, then split up your doses. Get oxygen. Start the D3 regimen (https://clusterbusters.org/forums/topic/1308-d3-regimen/). Down an energy shot or energy drink at the first sign of an attack. (Tie a string around your finger so you remember this.)

Nikkk, just a few words about habituation and the five-day wait. It has been observed that when a dose of MM is taken, it seems to remain in the brain's receptors for some time, blocking the effectiveness of new doses. The five-day wait after a full dose is based on that principle -- the new doses can't get into the blocked receptors until those receptors have been cleared, which takes approximately five days. This is all rough, theoretical, and anecdotal. It might be three days, or it might be no days, or you might be able to override the effect by taking more each time. We go with five days because it has shown itself to be effective. If the theory is correct, you might reach the point where small daily doses add up to blocking the recptors. We have urged you to get oxygen, and I'm urging you again. You can abort attacks without all you're going through, and then you can be more free to try more substantial doses every five days. Why not get oxygen? If your dislike of having a tank near your bed somehow outweighs the fact that it will stop your attacks, you can return it.

Thank you again for the update. I'm really happy that it's working for you. You are not the first person to fear that an oxygen tank would somehow be a depressing or discouraging sight. I would say that for many people, while they wish they didn't have to have it, the tank can become kind of beautiful because of what it does for you, and knowing it's there can help them handle having CH better because they know that they can treat most attacks before they get out of control. But you will make that decision as it makes sense for you. I do recommend that you try the whole D3 regimen. Since D3 is naturally created almost entirely from exposure to sunlight (very few foods have it), we would guess that your vitamin D level is almost certainly very low, at least in the winter. Bringing the D level up quickly has really helped a lot of people. Best wishes to you, and thank you for being here.

I was just looking for something else over at ch.com, and came across this. Can't vouch for it in any way, but just passing it along: >>If you do decide to get your D3 and it's suppliments on line, you should try iherb.com. They do all the large doses that we need and the shipping cost is very reasonable. Only about £5 from California to UK and arrives in less than 2 weeks.<<

Nikkk, what a great story!!! How smart of you. Yes, people use psilo to stop attacks! You probably also had good effects from the coffee, exercising, and breathing the cold air, too. Most people also use psilo to end a cycle, by taking it every five days. Maybe a little more than you took. I hope others will comment more about this. You could also try the vitamin D3 protocol, which is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ This is also a very effective strategy for many people for ending cycles and preventing future attacks. And you should get a prescription for oxygen, which can you your best friend for stopping individual attacks. Your doctor should prescribe oxygen, with a regulator that goes up to at least 15 liters per minute and a mask that is called a non-rebreather mask. Thank you for writing to us. You are on the right track.

Over the past three days the annual "Headache on the Hill" event took place, in which people with CH and other "headache" conditions advocated with members of the Senate and the House. The folks who do that deserve the highest praise and gratitude from us. Beyond that, I don't know what else you can realistically do. There is some promising research being done by drug companies on CGRPs. http://www.webmd.com/migraines-headaches/news/20150618/new-drugs-might-prevent-migraines-before-they-start Although the research is focused on migraines, some top CH experts think these drugs will help prevent CH attacks, too. Meanwhile . . . Is your son using all the best anti-CH resources -- oxygen, the D3 regimen, energy drinks, maybe some pharmas for prevention and aborting . . . busting?

Can't answer your practical questions, Red', but lots and lots of people have had great success with the D3. It's really a must-do, or at least must-try, for anyone with CH. At another thread here, Tex Mex just posted yesterday about how it has changed his/her life.

didg, what's he doing for his ch these days? d3? any pharma preventives or abortives besides oxygen (which i think i remember he has)?

I have no idea of the answer to your question -- just wanted to say that every time I see you sign in here, it makes me happy for what you have accomplished.

Oh, I am so very sorry to read this. Sympathy and wishes for healing. Have we talked about allergies? Batch says the D3 regimen loses effectiveness when there are high pollen counts. I think that he and others now regularly take normal doses of benadryl a few times a day, or at least when pollen counts (which you can check on the internet) are high. Don't know whether this might also apply to colds/flu.

Yes, a shame. Those of us who are still in town as the tumbleweed blows through try to help as we can. I suspect none of us knew anything about that substance you were trying, and so couldn't really comment or give any advice. I'm sure that more than a few people have read your posts with interest, and appreciated your making them. I hope it will turn out to be successful for you and you get plenty of PF time.

Didg, I'm very sorry to hear that things were so rough. I think most folks here would agree with you about the impact of barometric changes. Mostly, sending you my best, and hoping maybe the worst of what you were going through is over.

So Tony Only corrected me when I suggested that energy shots/drinks are only effective at the time of an attack, saying that he used them successfully as preventives recently, and spiny said the same about the V-8 Fusion. That was all news to me. Has anyone else had success with that preventive approach? If so, did you learn anything valuable about that method -- maximum/ideal time between the drink and the expected attack, for example? I'm really interested in learning more about this.

Yes, it makes perfect sense that he is angry, especially if he thought maybe they were gone since it's been such a long time, but just in general because it seems so unfair and even cruel to have them at all. They're not directly life-threatening, but they can wreck your quality of life pretty quick. Being mad is one thing, but being so mad that you won't act is another. It can become a form of denial, really. One basic thing that has given many people a lot of relief is the vitamin D3 regimen. You can read about that over in the ClusterBuster Files section of this board. When he's ready, it will help him. Many people feel that the "epi pen" (the Imitrex) has substantial downsides, even though it does help abort attacks quickly for many people. There is evidence that it causes rebound headaches that are worse than the ones it treated, and surely there are short- or long-term side effects. Also, a lot has been learned about oxygen since the last time he used it. You might want to look at this file so that if he sets up a welding-O2-based system, he'll be able to get it working at its best. https://clusterbusters.org/oxygen-information/ Finally (for now, at least), if you go to the ClusterBuster Files section, you will see that this site was established by people who discovered that psychedelic substances -- often taken at low-enough levels that they have no hallucinogenic effects -- are probably the most effective, lowest-side-effect way to end cluster headache cycles, and often to keep them from coming back. I also think that this site has the most generally knowledgeable (not just about psychedelics), and the most generous-spirited, people you will find. But you should know of two other places. One is the Facebook group, Cluster Headaches (not Cluster Headache Support Group, although that is another group). If you or he are more comfortable with Facebook, that might be a place to look. Very good people there, also. Really, folks with CH are generally exceptionally good, because they know what the suffering is like while the rest of the world generally doesn't. You can talk about anything there, and the "pinned" post at the top of the page is about a psychedelic substance that is legal in many places and has zero "trip" effects, that many people have found relief from. But like I say, it's a very open group that discusses everything CH-related. And the site www.clusterheadaches.com also has a whole lot of knowledgeable people, generally focused on the many, many pharmaceutical meds that are used to treat CH. I hope you'll come back to us, because we worry about the people who show up here, but those other places are potentially helpful, too.

Well, the first things you can do are to help him, push him, whatever it takes, to get oxygen again and, at least for now, to get that "epi pen," which almost certainly was injectable sumatriptan, called Imitrex. Sometimes, some people with CH don't advocate for themselves as well as they might, and they need help from others. We have about a hundred answers for you, or him, here, for almost any question you/he might have. I/we could suggest a whole bunch of things here for you/him to read, which would lead to things to do that he probably doesn't know about but that make a big difference for lots and lots of people. Are you interested in treatment information that could help him? Can you get him to show up here? In the short run, he should get energy shots (such as 5-Hour Energy) or energy drinks (such as Monster or Red Bull), and drink one at the very first sign of an attack. That helps lots of people. Some people find that they get preventive benefits from drinking those drinks in advance of attacks (for many/most people with CH, attacks come at predictable times). Even with this one topic, we could go on and on. One prominent person here finds the V-8 Fusion energy drinks work well for her; there are many types and "strengths" of shots and drinks (a little 5-Hour Energy shot is actually stronger in caffeine than a big Red Bull, for example); some people find that a strong cup of coffee works well; some people like their energy shots/drinks icy cold . . . .Like I said, there's a lot of sub-info under a lot of different topics. If you, or he, want answers or guidance, just ask. As for your specific question, you just need to let him guide you about what helps. A lot of people with CH -- most, I would say -- don't want anyone around during an attack; it's just another thing they have to worry about. Some don't mind quiet company. Some can figure out a way for another person to be helpful. Some kinds of touch can be helpful to some people, but usually only toward the end of an attack, I think. In my opinion, you have to let him know that whatever he wants is okay with you, and then respect that. He might be afraid that he'll hurt your feelings by asking you to stay away or giving you only a limited role, but you have to let him know that it's not about you. I am a supporter of a loved one with CH. There is nothing worse for me than to not be able to be with her, or help her, when she is suffering, but it's not about me, and that's the way she prefers it. Supporters have their own torture to live with in that regard, but it doesn't compare to a CH attack. But like I said first, you can help him most by getting him moving toward getting the medical and non-medical stuff he needs, particularly and most urgently oxygen. Others might say more about oxygen, but in essence he either needs to get a doctor's prescription for it or set up a system using welding oxygen. He will want to optimize the system in ways we can tell you about. I think you can also help him a lot by getting him to come here, with people who understand. But if he won't come here and you have to be the intermediary, then please keep asking questions (or just tell us you're interested in a list of key things to read or something), and you'll get information that can make a huge difference for him (and therefore for you).

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.