CHfather

Sheesh. The evidence: http://jamanetwork.com/journals/jama/fullarticle/185035 Print out and bring with you.

Sounds like CH. Could be something else, but you should treat it as CH. I take it you mean 25mg of prednisone twice a day. Typically 60mg/day is the max (or less, if you don't weigh much), and that's just for a few days before tapering off of it. Try to get an appointment at a headache center! And yes, they might come back as you get off the pred. Pred can be really bad for you if you take too much for too long; usually it's used as a "bridge" to help with the pain while you start other treatments. Okay, there are tons of things you can do. The most common pharmaceutical treatments are verapamil as a preventive and OXYGEN as an abortive. Oxygen is the #1 thing you want. Read this: https://clusterbusters.org/oxygen-information/ Sometimes sumatriptan injections or nasal spray are recommended as abortives (called Imitrex in the US). But GET OXYGEN (a competent physician can prescribe it). Start the vitamin D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try an energy shot (such as 5-Hour Energy) at the first sign of an attack. Many people prefer it very cold. Drink it down. Melatonin at night helps some people. Start at 9 mg. Once you have tapered off the pred, you could be in a very good position to "bust" -- to take psychedelic substances to end your cycle and possibly prevent future ones. Some of these substances are illegal to buy or possess and might cause you a significant "trip"; others are legal to buy and possess (but not to consume) and will cause practically no trip. Read the numbered files in the ClusterBuster Files section of this board, and get back to us if you are interested in knowing more. Others might chime in with their own advice for you. CH is a crappy thing to have, but you can learn to manage it and maybe even do better than that. Here's a lengthy discussion of options and new developments from the founder of ClusterBusters: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

Mike, some additional thoughts: I'm not sure what this means: >>My method was to fill the bag (hold finger on valve) . . . << Are you quickly drinking an energy shot (such as 5-Hour Energy), or at least some strong coffee, as you get on the O2? That speeds up aborts for many people. Try holding the air in your lungs for a few moments after you have inhaled, before exhaling. I don't personally see any issue with you removing the mask to exhale, as long as you don't bring in any room air as you inhale. The doctor who first developed O2 therapy suggests to his patients that they should look down toward their feet as they do the breathing. If you are doing the O2 right (this relates to my first question here) and you are waiting for the bag to fill before you can inhale, you need a higher-flow regulator (as many/most people do). In the short run, you can create what many call a "redneck reservoir" by replacing the current reservoir bag on your mask with an unscented garbage bag or turkey roasting bag.

john', your best bet for advice this specific about the D3 regimen is to ask this guy, whose screen name is Batch: https://clusterbusters.org/forums/user/17422-batch/ He created the D3 regimen. He will probably answer you quickly. Let us know what he tells you.

Glad the energy shots are helping. Most of us would doubt that the Excedrin is contributing anything. Excedrin Migraine has caffeine in it, so if that's what he's using, it might be helping a little but he's taking in a lot of caffeine between it and the energy shot. Many people also experience drowsiness and a kind of overall dopiness with topiramate. You might want to check www.goodrx.com for reduced prices on the sumatriptan, if he decides to use it and if your insurance doesn't cover it (which it should). As I and others have said, he really should be testing oxygen as an abortive. He can have it with him in his vehicle as a driver. Works great for most people, NO side effects.

You don't describe what your attacks (the "headaches") are like. Can you describe them? Is it injectable Imitrex, or a nasal spray or pill? I assume the Trex is just for treating the attacks -- no preventive? A lot of people find that ginger, particularly as a strong tea, helps with shadows. You can stir powdered ginger into hot water (it doesn't mix well, but you can get it good enough), or boil slices of raw ginger, or buy a good-quality ginger tea, or even try a strong ginger candy. Tea is preferred. I guess I should add that, like you, I am not convinced that what you're experiencing is CH.

I'll let the wiser folks give you advice. I just want to say what a big relief it is for me to see that you have been feeling better.

The low level of the "normal" range of vitamin D [25(OH)D] is 30 ng/mL in the US. "Batch" (who has developed, improved, and closely tracked the D3 regimen) says this in the document I referred you to: >>CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. min = 34.0 ng/mL, max = 149.0 ng/mL.<< So you might be in the normal range but still have a "deficiency" regarding treating CH. Because so many people with CH get relief from O2, and because it is very very rare for anyone who tries high flow rates (25 lpm or more) with a good mask (such as this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)to not have success, and because O2 makes such a huge difference, I would urge you to give O2 another shot. You'd have to buy the higher-flow regulator and the mask, but it might be worth it. And please don't completely dismiss busting.

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.)