CHfather

How much melatonin? Standard dose producing results in studies is 9-10mg; there are people here who take as much as 30mg. How was the oxygen delivered -- from a tank (not a concentrator), with a flow rate of at least 15 liters per minute, using a non-rebreather mask (not nasal cannula)? If no to any of those, the oxygen was not being used correctly. And even if yes to all of them, many people get relief at higher flow rates with a better mask. The triptans were injected? PIlls and sprays don't work for many people. What was the verapamil dosage? Some people have to go pretty high (even above 900mg/day) before they get relief. Just me here, but after 6 years of reading literally thousands of posts here, my reaction to the idea that not one of those things helped is that either they weren't prescribed right (as I have suggested) or maybe you have a CH "lookalike" condition that will respond to Indomethacin but not those things you were given. The seasonal nature of your attacks certainly supports the idea that it is CH. You might really want to start on the D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ And, assuming you do have CH (which I'm not questioning; just wondering whether there's another avenue to be looked at), you are in a great position to try busting, which you can read about in the numbered files in the ClusterBuster Files section of this board.

Yes and yes are the answers to your questions. I would say that most people actually get signs that a cluster period is coming even before the low-level attacks begin. More importantly, please tell us how you are now treating your CH and we can give you some suggestions.

Here's the D3 link: https://clusterbusters.org/forums/topic/1308-d3-regimen/ He should think about "triggers." Here's a list (and more in the follow-up posts): https://clusterbusters.org/forums/topic/4568-triggers/ He should consider melatonin at night, starting at maybe 6-9mg. Here's a paper about oxygen: https://clusterbusters.org/oxygen-information/ As others have said, oxygen is the best thing he can have for aborting attacks: highly effective, no side effects. (While I agree with Rod H's post, you/he might be concerned about the monthly cost of having O2. There is a tradeoff there for people with cycles that are typically years apart.) Drinking an energy shot (such as 5-Hour Energy) at the first sign of an attack will often reduce the severity of the attack, or even sometimes abort it. A very strong cup of coffee can sometimes be enough. Experiences with oxygen suppliers are not always positive, because often they have not had a customer with CH before. If he gets an oxygen prescription, please check with us. You will want to call the O2 supplier and make sure they know what they're doing before they bring you anything. There's a good likelihood that they'll give him the wrong stuff if you don't. Please work hard to get this prescription. Some people find that putting their feet into a bathtub with very hot water will ease an attack. This is a thorough discussion of treatments and of the current activity to develop better treatments, written by the founder of ClusterBusters: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/ A note to you. My daughter has CH. It's a horrible thing for a parent to have to see. You can help make it much better for him, but he is still going to suffer from time to time. If he wants you there with him, that's good. Be aware that he might want you to leave him alone during an attack, and don't let that hurt your feelings.

Some will remember a guy who showed up here a few years ago asking for $ for legal fees after his arrest, claiming to be a buster. Turned out he was a serious dealer. The thing about a lawsuit (which is very unlikely for someone who's not dealing, but of course not impossible) is that while it might bring publicity, it couldn't set a legal precedent making it okay to grow and/or use banned substances to treat CH. The jury could "nullify" the law and find the defendant not guilty, but the law would still be the law, and if there was a next person, s/he would have to again to hope to win over the jury. There were lots of jury nullification cases for medical marijuana, for example (with people freely admitting that they grew and smoked mj to treat medical conditions and the jury returning not guilty verdicts), but each one was a crapshoot for the defendant until the laws were changed.I woul I would hope, as Denny says, that the busting community would come to the aid of anyone who was arrested and wanted to fight it. That's a lot of $, though.

Oxygen can be hard to get, because way too often doctors don't prescribe it even though it's the #1 medically recommended abortive for CH. Nearly everyone here or at any CH site will tell you it's the lifesaver, the must-have. You might have great success and long remission again and not need it, but you might not. Ending a cycle with one dose and getting six years of remission are not common occurrences. Strongly recommend that you give O2 your best shot with your medical professionals, and check with us. The most typical pharma approaches are verapamil as a preventive, injectable sumatriptan as an abortive, and a course of steroids to buy you some time while a preventive kicks in. Sumatriptan and steroids will block busting; verapamil not so much. Plenty of undesirable side effects from all those, of course. The best way to "research" energy shots and melatonin is probably to try them.

Yes, given that MM worked for you in the past and showed signs of working this time, it's a good bet for you to keep taking it. I think most people here would say that you need to feel some effects in order to know that you have taken enough. How much that should be is, unfortunately, impossible to say. Some people get effects, and busting effectiveness, at doses as low as .5g dried, but I think most people here would tell you that 1-1.25g is the lowest amount that's reliable for busting. Yes, seeds work for many and they almost never create psychedelic effects at therapeutic levels. The question is whether you really want to switch from something that is very likely to work to something you don't know about. You can buy seeds at www.tranceplants.net or www.iamshaman.com; you'd probably want to start at something like 50 seeds (and buy at least 200). Same regimen -- every five days. It will take a while for seeds to get to you from either of those places. If you get them, we can discuss it more. Meanwhile . . . I'm guessing you don't have OXYGEN, which you really want to have. Do you have any meds, such as Verapamil? Have you tried an energy shot such as 5-Hour Energy at the first sign of an attack? Melatonin at night (starting at about 9mg and working up)?

This beautiful message deserves more than just a "Like." Thank you.

Morning glory??

1. Melatonin levels are low in people with CH (and migraines, too). Melatonin is related to a whole bunch of pain and brain systems, including the hypothalamus. So it's not just helping you fall asleep, it's dealing with a hormone imbalance (melatonin is a brain hormone). Here's an abstract from a 2006 article: >>There is increasing evidence that headache disorders are connected with melatonin secretion and pineal function. Some headaches have a clearcut seasonal and circadian pattern, such as cluster and hypnic headaches. Melatonin levels have been found to be decreased in both migraine and cluster headaches. Melatonin mechanisms are related to headache pathophysiology in many ways, including its anti-inflammatory effect, toxic free radical scavenging, reduction of pro-inflammatory cytokine upregulation, nitric oxide synthase activity and dopamine release inhibition, membrane stabilisation, GABA and opioid analgesia potentitation, glutamate neurotoxicity protection, neurovascular regulation, 5-HT modulation and the similarity in chemical structure to indometacin. The treatment of headache disorders with melatonin and other chronobiotic agents, such as melatonin agonists (ramelteon and agomelatin), is promising and there is a great potential for their use in headache treatment.<< https://www.ncbi.nlm.nih.gov/pubmed/16548786 2. Here's what a major headache center says about sleep and CH: http://www.mhni.com/headache-pain-faq/cluster-headaches/cluster-headache-sleep Here's a very long, more recent analysis of CH and sleep. https://thejournalofheadacheandpain.springeropen.com/articles/10.1186/s10194-015-0562-0 Among its findings is this: >>Inspired by anecdotal and clinical experience, sleep studies in CH have been conducted but results are diverging [12]. Anecdotally, patients awakened by nocturnal attacks often lucidly recall dreams and typically report that these occur one to two hours after falling asleep. These sporadic observations have led to the belief that nocturnal attacks of CH are temporally related to the rapid-eye-movement (REM) sleep phase, the first of which typically occurs roughly one hour after sleep onset. The possible connection with REM-sleep [16, 17, 18] and sleep apnea [17, 19, 20, 21, 22] is based on relatively small studies which are mostly uncontrolled. It appears that while a temporal association between individual CH attacks and nocturnal sleep (but not necessarily REM-sleep) is evident, little is known about the specifics of this link.<< FWIW, when my daughter is having predictable attacks in the early nighttime (such as your 12:30 ones), she stays awake so they are easier to abort with oxygen and energy shots. She does not usually have another attack then after she falls asleep. Quite often, one person's experience doesn't translate to anyone else, so I'm just mentioning this, as I say, FWIW.

Mitch Post, who knows a lot about CH (he posts under a different name here -- not here much anymore -- but is very public over at the Facebook group), strongly suggests 100 seeds as a standard dose. That's always seemed unnecessarily high to me, but who am I to say? I know of some people who take 80 and still have no psychedelic effects. The point of taking lots of them (as I'm sure you know) is to compensate for possible low LSA content in the seeds you have, since that content is so variable.

>>Hope my next message is they are gone.<< Hoping so, too. No reason not to do the 50 or 60 next time.

I'm pretty sure that you only need to take melatonin during a CH cycle. I don't recall seeing any evidence that taking it between cycles will prevent a cycle. Others who use melatonin will be able to tell you if I'm wrong, which as you have seen is not unknown. You generally do want to continue the D3 between cycles to sustain a high enough level in your system (if that was going to be part of your question).

6 mg is a relatively small dose of melatonin. In the studies showing melatonin efficacy, I'm pretty sure that 9-10mg was the standard. There are people here who take as much as 30mg. So, you might try a somewhat higher dosage and see if that helps. OTC melatonin varies greatly in quality and in delivery methods (timed release vs. immediate; dissolved in mouth vs chewable vs just swallow it), so several sites recommend, >>If one brand of commercial melatonin does not work another should be tried because the true amount of melatonin in various OTC brands varies widely.<< It's possible that the closer to your bedtime you can take them, the more effective they'll be. All of the preceding of course contains the usual qualifier, "or maybe not."

Thanks for your kind words. This group made a big difference for her. The evidence for D3 is strong enough that you have to figure it's making a difference. I've never seen a demand valve mask that supplies oxygen by recognizing when you are inhaling and when you have stopped -- but there's probably a whole lot I haven't seen. In her case, there's a button she holds down while inhaling.

Sorry you have to be back! Hoping the seeds will help. Please be sure to check with us as you get ready to do them. You've probably seen this guidance for preparing seeds: https://clusterbusters.org/forums/topic/2353-moxiegirls-seed-recipe/ You might be able to start with more seeds than are suggested in that post.

Yes, LSD protocol is the same as with shrooms. In the old days, the standard recommendation for all substances was to start small. With acid, that was maybe a quarter tab. I guess these days it's what you think you can tolerate, which might be starting with a half tab or a whole one. PF wishes!

john2000, I wrote "I" above to keep things relatively simple, but it's actually my daughter who has CH. She uses a demand valve system that we got on Ebay, which has a sweet mask that she has to remove to exhale. Before that, she had the predecessor of the ClusterO2 Kit, the O2ptimask, but she used only the breathing tube. (A demand valve system has a button on it that you press when you're inhaling, and then no more oxygen flows until you press the button again. No bag; always O2 at the ready.)

I don't have this mask, but it has always looked to me like you have to take it off to breathe out, though I'm certain that Mit' knows what he's talking about. In any event, it won't do you any harm to take it off to breathe out, as long as you don't inhale any room air, and you might try using the tube and not the mask, which some people prefer. If you had flaps/gaskets on both of the holes in your previous mask, it was okay to use it as you were using it. Most of them have one gasket and a bunch of open holes on the other, and that's the problem with letting room air in. ClusterO2 Kit should be more comfortable, give you a tighter seal, and hold more O2 in the bag.

I'd suggest that you PM Batch, who knows everything about the D3 regimen. You can do that from here: https://clusterbusters.org/forums/index.php?app=members&module=list

sp', it's my understanding that D levels drop pretty fast when folks are off the regimen. Your best bet by far is to get your D level tested and then decide what to do regarding loading. If you're not in a cycle right now, you might do okay to go with the 10,000IU/day. Regarding how long you should continue -- I think that most people stay on it all the time, so they don't have to play catch-up when they're in or near a cycle. Regular testing of D levels is strongly advised.

Glad your cycle has ended. Wishing you the best. No point in correcting your misstatements -- the thread is here for anyone to read.

Obviously, stuff depends on your circumstances, but 240 Verapamil is a low dose compared to what works for most people. There are folks here for whom Verap hardly worked at all until they were at 960. I think the "standard" dose, if there is such a thing, might be 360-480. Verapamil can have complications, so (a) your doc might have wanted to start you on a dose that could work; and ( you should be monitored as your doses go up, if you do that. Yes, get that O2 as quick as you can! Melatonin at bedtime helps with nighttime attacks. Since yours are at 9:30, I hoping someone can say whether taking melatonin at night would still help, or whether taking it earlier, at 7:30 or something, might help (but then there's that drowsiness). Like I say, I'm hoping some smarter person than me will have something better to say. FWIW, a few folks here have said that putting their feet in very hot water in a bathtub helps with their attacks. You should be starting the D3 regimen, too, if you're not doing that already (I'm guessing you're not). https://clusterbusters.org/forums/topic/1308-d3-regimen/ Hey, might as well think about possible triggers, too. https://clusterbusters.org/forums/topic/4568-triggers/ You know about splitting your Imitrex (if it's injections)? https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Would love to hear what some of y'all's top takeaways from the conference were, in terms of improving treatment. Microdosing? Anything new on O2, D3, or anything else (GammaCore; ketamine)?? Anything that gave you hope for better treatments down the road?

Please see what you can get from your doc regarding re-trying oxygen. All you need from the doc is a prescription saying something like "Oxygen therapy for cluster headache. 25 minutes at 15 lpm with non-rebreather mask." When you tried it before, you might have had a concentrator and not cylinders, and/or you might have had a flow rate that was too low (15 liters per minute is pretty much the baseline for most people), and/or you might have had nasal cannula or some other device rather than a non-rebreather mask. If you get the basics that are in that prescription, that might do it for you, or you might have to upgrade on your own to a regulator that allows a higher flow rate and/or the mask that is specially designed for people with CH. It is very rare for oxygen not to work when the system is set up and used properly.

Pebbles', I just want to say how much I appreciate your thoughtful and helpful posts. You are a great contributor here. (And your description of the conference brought a few tears to my eyes.) Since': I'm just going to mention a few things for right now. (I would recommend rivea corymbosa seeds as an alternative to shrooms, but I think Louisiana is one of a handful of states where those seeds are illegal). 1. So many people come here saying "I tried oxygen and it didn't help." In almost all of those cases, it was because there was something wrong with their oxygen setup or how they used it. If you're willing to give it another try -- it's the most important thing you can have on your side -- we can discuss it more. 2. You say that 240 Verapamil seems to be helping you. You might get better relief at higher doses (if you're medically okay to do that). 960 is not an uncommon dose, so you may have room to increase, with your doctor's permission. 3. I hope your Sumavel is 4mg, not 6. 3mg and even 2mg are sufficient for most people with CH, but in order to get those levels you have to have a different delivery system (it usually involves taking apart the autoinjector, but some people can get their doctor to prescribe syringes and vials). Obviously, the less triptan you use with each injection, the more you can use without running out or hitting the 12mg daily limit. A lot of people feel that triptans extend cycles and cause rebound attacks (and there's some research evidence that that is true). Another reason why you need to get O2 working as your abortive. 4. An energy shot such as 5-Hour Energy, drunk at the first sign of an attack, can lessen the severity of an attack or even abort it. Your Pepsis might be helping a little, since caffeine is the key, but the energy shots have more caffeine and they also have another ingredient, taurine, that seems to help. 5. Some people find that putting their feet in very hot water in a bathtub will stop an attack. 6. It's great that you have an awesome supporter!! 7. Roughly 80% of people with CH smoke. There doesn't seem to be any connection between smoking and getting CH attacks, in the sense that most people who stop smoking don't report any lessening of attacks.