CHfather

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.

Northwestern University Medical Center good enough (https://www.nm.org/)?%C2'> It is from my actual blood test report, which I receive online. Believe me, if medical science had great answers for treating CH, we would not hanging out here. I don't have CH; my daughter does. I could list the 10 medications she has tried. I'm not here for play. I have read and evaluated every single post here for the last six years. That's a whole lot of posts. I have read virtually every journal report on every medication or procedure to treat CH. I'm not stupid or gullible. I hope you never have to learn how the information here saves lives. I hope that starting sometime in the very near future you will never again even have to think about CH.

I said I wouldn't persist. I shouldn't. Very sorry that I am surely overdoing it, but I would rather have you think me obnoxious than have you miss effective treatments because of misinformation. Standard report format for vitamin D test (copied from mine, from a leading medical center): Suggestive of Deficiency: <20 ng/mL Suggestive of Insufficiency: 21-29 ng/mL Suggestive of Sufficiency: 30-100 ng/mL Suggestive of Toxicity: >150 ng/mL You might be right about the risk of higher D levels during pregnancy. Literally hundreds of people (carefully researched) with CH will tell you, however, that your general assertions about acceptable and toxic D levels are incorrect and are leading you away from what could be a valuable tool for you, should you need it. The oxygen that was administered to you in hospital was almost surely done wrong. It almost always is. Finished now, I promise. Wishing you the very best.

Many people have been shocked to discover that their D level is low, or at least lower than it needs to be to combat CH. The D3 regimen has been effective at preventing or reducing the severity of CH is a very large percentage of people (reportedly >80%) who have employed it. D level is part of most standard blood panels. While a level above 30 ng/ml is considered "within range," the extensive evidence shows that about 80 ng/ml is required to treat CH (that is still within the "normal" range, which goes to 100 ng/ml). Standard supplements and even a lot of sunshine are not likely to get you there. Your situation is really, really crappy. It could be that you won't experience CH again after you deliver your child. That would be wonderful. No one can tell you a doggone thing with certainty about CH and its treatment, except that there is no available miracle cure, there are only ways to more effectively manage the pain. I feel like I can sense your despair in your posts here, but of course there is a point in turning three hours of suffering into ten or fifteen minutes, even if the attacks are going to come back again, and there is a point in trying preventives like the D3 regimen or pharmaceutical drugs that could keep the attacks from coming back or at least make them less bad if they do. I can't tell exactly what you mean when you say oxygen "is not an option with my insurance," but I can tell you again that oxygen is the best, side-effect-free treatment for CH, a true lifesaver for those who use it. Maybe you're saying your insurance won't cover it, or maybe you're saying that it seems too expensive with your insurance. Different decisions and strategies would be involved depending on what it is (or seems to be -- lots of people have found that they have to fight with their insurance companies but the coverage is actually there). There is also the option that many people use (at least 15% of people with CH; probably more), which is to use welding oxygen as the basis for your O2 system. If you want any further discussion of any of this, just ask. I'm persisting because I know the huge difference that O2 and the D3 regimen often make, but I will persist no more, unless you ask. I see that I failed to provide a link to Bob Wold's document, which you might have seen on your own in any event Here's that: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

I'm not an expert in CH and pregnancy, but I would assume that you want OXYGEN, the #1, side-effect-free CH abortive. From a tank, with a 15 liter per minute regulator and a non-rebreather mask. You can read about that here -- https://clusterbusters.org/oxygen-information/-- or ask more questions. Since your doctor must have looked up the Trex and the steroids, she should have seen O2 right there. It's standard recommended medical practice, but many many dpctors don't follow it. I think that's because they don't prescribe O2 for any other conditions and are unfamiliar with it (even to the point of not knowing how to prescribe it). Almost everyone with CH can abort with 2mg of injected sumatriptan. I don't know what your delivery method is, since I think most self-injectors are 6mg, but if you can take 2 or 3mg instead of 4, you're almost guaranteed to abort the attack wile using less of the drug. Trex will not break your cycle. There's even some evidence that it might extend it. But it will give you relief from the pain. Steroids very rarely break a cycle -- usually they're meant to give you relief while a preventive med, such as Verapamil, kicks in. Don't know about Verapamil and pregnancy. It also won't generally stop a cycle that's underway, but sometimes it can be effective as a preventive. The most effective way to stop and cycle and potentially prevent future ones is through busting (using psychedelic substances), which I'm going to assume you don't want to do. The other principal method for stopping a cycle and preventing future ones is the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Melatonin at night helps many. Energy shots/energy drinks can stop an attack or significantly reduce its severity. I have no idea whether any of those are okay given your status. Some people find that putting their feet in very hot water in a bathtub will stop an attack or reduce its severity. Again, no idea whether that would be a bad idea for you . . . just throwing out what I have. You should probably check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/ And you could read this thorough discussion from a CH hero, Bob Wold. Finally, consider joining a couple of other discussion sites where you might encounter someone who's been through what you're going through: www.clusterheadaches.com and the Facebook group, "Cluster headaches." That's a closed group, but I think you can gain admission quickly and easily.

John, in case you didn't see my reply to your generally excellent post at another thread here, I want to be sure you know this: the O2 supplier should NOT be giving you (or anyone) a concentrator for home use. They should be giving large oxygen cylinders (M, H, or MM size). Cylinders contain 100% oxygen; concentrators provide about 92% oxygen. There is a big difference in effectiveness. Your aborts using the concentrator are taking at least twice as long as they should. (I knowthat your situation regarding effectiveness is presently kind of bizarre, but I have never seen another person report better results from a concentrator than from tanks, and there has to be an explanation for that related to the equipment.