CHfather

Thanks, Pebbles'. And thank you, urs, for your clarification. Sorry it's so darned hard for you right now.

Brad, I remember you! When you first came here, you were seriously considering surgery, and you were in school for something, EMT or something like that. I think you posted photos of your lovely family at one time. So sorry that that nice period of relief has temporarily ended. Is the D3 regimen new since you were here? At the least, it's probably been updated. Check it out: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Best wishes for the bust. Keep us informed.

Pebbles', I think you were referring by "labs" here to the blood test for vitamin D level. If I'm correct, I am assuming that your thinking is that virtually everyone has either a clinically low D level or a level that is too low for the D3 regimen to be fully effective. Is that right? I think there are two reasons that a blood test at the beginning and at some intervals later might be valuable: (1) if for some reason the person actually has a high D level to begin with; and (2) if the D level gets substantially raised while following the protocol. I think it's true that in most (all?) cases the effects of too much D can be undone pretty quickly by simply stopping taking the D3, but I do know one person who proceeded with the D3 to excess, without being tested, and experienced pretty severe symptoms that one would want to avoid. Just checking.

Most people can get by with 2mg injections, so that means you would get three from every injector. A few seem to need 3mg, which would of course mean two aborts per injector. (Or you could ask for 3mg injectors, which some doctors are willing to prescribe, or even for a vial of sumatriptan and syringes, which some people can get). You would have to figure out the cost difference, but I'm guessing that one is paying a lot for the useless autoinject mechanism itself. Your doctor's logic for not prescribing a preventive or trying steroids seems odd to me. I'm not sure how you would get things "under control" without a preventive. For most people, the steroids only provide relief while they're taking them (if then), so they are meant as a "bridge" to give the preventive time to take effect. It's also a little hard for me to know how much his "perception of the severity of the problem" actually matters, He's gonna prescribe what he's gonna prescribe, and his sympathy is worth very little to you. People here all know what you are going through; unfortunately your child probably gets it, too, at some level; but practically nobody else will ever really understand. Here's some basic info about LSA, but you should check back with us if you decide to go that route. There is typically no "trip" at all with seeds. But of course no substance is assured to work, and you have apparently already found one that does. https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ You might not be aware that psychedelics don't work while you are using sumatriptans or steroids. The standard advice is that you have to be "detoxed" from them for five days before psychedelics will work. There is not 100% agreement about this, but it's what the bulk of experiences say.

Thoughts, some informed, some not so much: It sounds like your sumatriptan is the injectable kind. Here's a way to get more shots from each injector: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ (We have found that it's harder than it looks to break these open as shown in the video, but with a very sharp knife you can cut the injector open in about 5 minutes. We cut about an inch below the seam.) We have found that we get a lower price for Imitrex by not using insurance and using a certificate from a website like www.goodrx.com From what you say, it's a little hard for me to tell whether you'd get a better price that way or not. Sumatriptan nasal spray works for some people, and it's less expensive than the injections. Energy shots such as 5-Hour Energy work quite well for some people , and they have less caffeine than your 200 mg pill. I wonder, also, whether half of your pill would work. You are missing a pharmaceutical preventive -- verapamil, for example, which is not so expensive. Has your doctor considered a steroid taper to see what happens? Probably more importantly regarding prevention, are you doing the D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/ I know there are some public forms of insurance, such as Medicare, that deny coverage for oxygen, and that insurance companies ration trex ridiculously. I assume you and your doctor have tried fighting this. It sounds like maybe you are getting your O2 from a private oxygen supply company. E tanks are all they will give you? That seems nuts for them and for you. Have you considered welding oxygen, which at least 15% of people with CH use? Issue there would be that you have to bring the tank in to have it refilled. Regarding O2 use, are you staying on it for 5-10 minutes after you have aborted an attack? That can hold off subsequent attacks. And is your system optimized with a high-flow regulator and a top-quality mask (or maybe with Batch's workarounds for those two things)? Melatonin at night, starting at about 9mg and working up as needed, also helps some/many people with nighttime attacks. Regarding your actual question, might it make sense to come at this indirectly with your doctor, just saying you have read that some people use psychedelics such as psilocybin or LSD to treat CH, and you're wondering what s/he thinks of that possibility? The answer might give you a sense of how much you want to pursue it. We've heard of everything from "Stop talking about that!" to "You should try anything that might work for you." The doctor is in a slightly sticky spot because s/he can't legally know that you are using illegal substances. Some take it as a good sign when the doc stops taking notes when psychedelics are mentioned. Have you considered LSA from rivea corymbosa seeds? It's very hard for me to say you should do anything other than LSD, since it worked so well for you, but there is virtually zero chance of mommy getting arrested when using LSA, since the seeds are legal to buy and possess (in almost all US states and many other countries), and the only unlawful part occurs during about an hour in your kitchen while you are preparing them and consuming them.

Thanks, Denny. I appreciate you thinking of us. Unfortunately, my kid has a very very bad reaction to steroids (I should have realized that that would be the powerful anti-inflammatory). I have the same severe response to steroids that she does. Of course, the first two times it happened to me the doctors wouldn't believe it. If I had CH and knew that this might treat it, would I go for it despite the steroids? I think (though who can really say) that unless O2, D3, energy drinks and occasional trex stopped doing it for me, probably not. But if powerful doses of anti-inflamms plus B12 can accomplish this lasting effect, there must be something therapeutically significant here, so I'm glad Bostonheadachedoc is looking into it, too.

Wow. I am so happy for Dan and the others, and not at all uninterested for my daughter. Thanks for posting, Denny. Can't be too far from you. Do we know if Dr. Mike is willing to make the specific ingredients known?

john, I've never read about such an instantaneous reaction to just eating. I'll be interested to see what others have to say. There were quite a few foods listed in the triggers document we put together and the subsequent thread, but the ones you mention aren't there, and it seems hard to imagine that every meal or snack would have a trigger food, unless you are sprinkling everything you eat with something that has MSG in it.

Additionally . . . . Several people have said that they had dental work with "laughing gas" (nitrous oxide) without any cluster incidents. One person reported that he thought the "laughing gas" had triggered an attack.

I'm going to give you my opinion about all this, based on reading every post here for more than six years. I have seen very little evidence that dosing during an attack will stop an attack. More than a few people have reported having attacks while dosing. It seems that it might be true, for some reason I can't explain, that a very small amount might stop an attack. That amount is sometimes described as a SPUT -- small piece under the tongue; just a "pinch," really. But an amount that small probably won't stop a cycle. So I am also going to guess that while you might be able to use a very small amount daily to stop attacks (though I doubt that), it will not work to end your cycle. Lately, some people have been testing "microdosing" as a way to end a cycle, but those attempts seem to either fizzle out, or the people don't report on them. The most reliable method is to take a potentially effective dose of psilo every five days, and probably not during an attack. Is 400 mg a "potentially effective dose"? Maybe. It's low, for sure -- the recommended dose being 1 - 1.5 grams dried, and many people saying that higher is better -- but some people have had success with levels that low. I think it's not low enough to be considered a microdose or a "very small dose," and so it might have that "shutting the door" effect, which means that your next dose, if taken too soon (essentially, in less than five days) will be ineffective. Do you have oxygen?

The anesthetics used in most dental work, such as Xylocaine, contain epinephrine, which is a CH trigger for many -- if not most, or even all -- people. So my guess would be that that's what it was, probably not the Vicodin. I know of a couple of people in whom epi triggered not just attacks, but whole cycles. For future reference, Prilocaine seems not to cause bad effects. I so wish there was a way to get this information out to everyone with CH, since dental work so often creates so much misery.

Rimantis, I wish you could have a definitive answer for waiting 5 days or taking some every night. Here is what I can tell you. From the beginning, the people who created this site believed that busting with less than 5 days in between will not work. It could be 4 days for some people. There were three reasons for this belief: (1) the experiences of the early busting pioneers, and (2) the general experience of people who take psychedelics recreationally, that the effects were less when they took the substances more often; and (3) the evidence that when psychedelic substances attach to receptors in the brain, they stay there for several days. Over the years, the experiences of most people here confirmed this -- they did not get good busting results if they waited less than 5 (or sometimes 4) days. Now you have registrate' and his friend saying that they got good results from taking relatively small amounts on consecutive days. It's for sure that registrate' is telling the truth. And there are others who have experimented with "microdosing" every night with smaller amounts and have reported good results. Maybe these smaller amounts don't fully block the receptors -- I don't know. 900mg is not really a "small" amount for many people, though it seems it would be for you and maybe it was for registrate' and his friend. I think most people would encourage you to stick to the 5-day method, which has proven to work over many years, but -- unfortunately for the sake of making your choice -- the other method obviously could work. Maybe this just confuses you more, but I wanted to give you the facts as I know them.

It's hard for me to find much literature on valsalva-induced CH (a new one to me), though it apparently exists (migraine, too). Here's something you might try, as reported in one article: >>Surprisingly, reducing rise in intra-thoracic pressure by keeping the mouth open, and, limiting choroidal congestion by forcibly screwing the eyelids together during constipation-related Valsalva maneuver prevented further development of migraine attacks.<< Also, Rozen's 2002 article about this kind of attack says that it might be preventable with indomethacin, which is a medication that doesn't typically help with CH, so you might try to get a prescription for that and see what happens. You can find the first article by typing "Constipation-related Migraine Is Linked To The Effect Of The Valsalva Maneuver On The Eye: A Case Report And A Mechanistic Review" in google; the other (just the abstract), which I suspect you've seen, is at https://www.ncbi.nlm.nih.gov/pubmed/12010390 More generally, it's hard to know of course whether that low dose of verapamil helped your CH, or whether the cycle just resolved on its own. You will want to get the correct arsenal of CH treatments in place as soon as you can. That would begin with oxygen. https://clusterbusters.org/oxygen-information/ It's hard to know what's appropriate for you in your current situation, but please check back. It's very hard to imagine that oxygen therapy would be harmful.

Occipital nerve stimulation improves the quality of life in medically-intractable chronic cluster headache: Results of an observational prospective study; Fontaine D, Blond S, Lucas C, Regis J, Donnet A, Derrey S, Guegan-Massardier E, Jarraya B, Dang-Vu B, Bourdain F, Valade D, Roos C, Creach C, Chabardes S, Giraud P, Voirin J, Bloch J, Rocca A, Colnat-Coulbois S, Caire F, Roger C, Romettino S, Lanteri-Minet M; Cephalalgia (Oct 2016)BACKGROUND Occipital nerve stimulation (ONS) has been proposed to treat chronic medically-intractable cluster headache (iCCH) in small series of cases without evaluation of its functional and emotional impacts. METHODS We report the multidimensional outcome of a large observational study of iCCH patients, treated by ONS within a nationwide multidisciplinary network (https://clinicaltrials.gov NCT01842763), with a one-year follow-up. Prospective evaluation was performed before surgery, then three and 12 months after. RESULTS One year after ONS, the attack frequency per week was decreased>30% in 64% and>50% in 59% of the 44 patients. Mean (Standard Deviation) weekly attack frequency decreased from 21.5 (16.3) to 10.7 (13.8) (p = 0.0002). About 70% of the patients responded to ONS, 47.8% being excellent responders. Prophylactic treatments could be decreased in 40% of patients. Functional (HIT-6 and MIDAS scales) and emotional (HAD scale) impacts were significantly improved, as well as the health-related quality of life (EQ-5D). The mean (SD) EQ-5D visual analogic scale score increased from 35.2 (23.6) to 51.9 (25.7) (p = 0.0037). Surgical minor complications were observed in 33% of the patients. CONCLUSION ONS significantly reduced the attack frequency per week, as well as the functional and emotional headache impacts in iCCH patients, and dramatically improved the health-related quality of life of responders.

I'm surprised you have a neuro with 12 CH patients. That's a lot. 2000mg of magnesium seems like a lot, too, but maybe that's based on his experience. I would say your list of items should be 1. OXYGEN (this is also #2 and #3) 4 and 5. Probably a tie between a preventive and Imitrex that works (preferably injections but maybe nasal spray would work). Verapamil is the most commonly prescribed preventive. It should be monitored for its effects on your heart and blood pressure. I think it is usually started at fairly low (and therefore fairly ineffective) dosages and raised depending on tolerance. You might start at 160-240mg/day, but it can take 900-plus mg/day to be effective in cycle. As Pebbles said, the standard 6mg Imitrex injector is more than anyone with CH needs. If your doc won't prescribe vials and syringes or 3mg injectors, you can disassemble the 6mg autoinjector and use 2mg per injection, or maybe 3. We can point you to how to do that if it comes to that. 6. Blood test for your vitamin D level. This is part of a basic blood panel. As Denny says, as you get your D levels up and use the whole D3 regimen, it can replace verapamil as your preventive. If you discuss the D3 regimen with your doctor, he might be troubled by the high amounts of D3 that it involves. Batch, who observes the D3 regimen closely, has seen no issues with D3 at these levels if it is properly taken as part of the whole regimen and D levels are consistently monitored. Right now, you are looking to get the basics in place. Don't ignore that energy shot suggestion. It can help with clearing shadows, too, and another thing that clears shadows for some people is ginger tea.

Mass General didn't give you oxygen??? It's the thing you want most. https://clusterbusters.org/oxygen-information/ The 50 mg Imitrex is pills??? Practically useless. Injections most effective; nasal spray next. Naproxen also useless. You don't have a preventive, unless someone's thinking the trazodone might serve that purpose. Verapamil is the most commonly prescribed one. One of the great medical friends of people with CH is a neurologist in Boston. If you're not getting what you need, he's the man to see. We'll give you the info if you need it. Please look at the recommended D3 regimen that I linked you to and consider following that. I don't know what you're taking that might be contraindicated for CH meds or the alternatives we'll suggest here-- you need a doctor or a reliable pharmacist for that. Many people find that quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack can reduce the severity of an attack, or even abort one. Many people like them very cold. Melatonin at night helps a lot of people: 9mg to start, and then work up if needed. There's a list of triggers here. https://clusterbusters.org/forums/topic/4568-triggers/ Pot is unhelpful for some people. I haven't heard of cold wind as a trigger before, but why not? Cold wind is definitely a trigeminal neuralgia trigger. I guess you can tell -- I don't think you've received very good advice or help so far. The article here by Goadsby is a good, simple summary of medical CH treatments: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ PS: I'd consider changing you screen name, if it's your email address. Changing it now will change it on all your previous posts.

john', do you have a first-rate O2 setup -- high-flow regulator and "clusterO2 kit" mask (formerly the O2ptimask)?

Blood pressure meds -- particularly calcium channel blockers such as verapamil -- are also used as CH preventives. For general prevention, you should be trying the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Of course, I'm sure you know not to use the strap to hold the mask on your face. Just hold it, so it falls off it you do fall asleep.

Your fears and feelings are not unusual, Jle'. It's amazing how often people with CH blame themselves for having the conditions, and feel that they have somehow "failed." To me, people dealing with CH are heroes, not failures. But most importantly, you are just starting on the path to finding ways to manage your CH, and there are many, many things out there that will help you with that. Would you tell us what you are doing now for your CH? If you are not doing the "vitamin D3" regimen, that's an excellent place to start: https://clusterbusters.org/forums/topic/1308-d3-regimen/ From what I have observed, the other treatment strategy that has produced the best long-term results in terms of stopping cycles and preventing future ones is "busting," which is the reason this site was created. Busting is using psychedelic substances, often, with some of those substances, at dosages that have no psychedelic effects. You can read about busting in the numbered files in the ClusterBuster Files section at this board, and you also should also read this to give you a sense of the many current and hopefully future possibilities: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

Melatonin at bedtime, starting at about 9mg and perhaps working up as needed, helps a lot of people. Some find that sleeping in a more upright position helps, such as in a recliner or even sitting up at a table with pillows under the head. Are you staying on the oxygen for some minutes, maybe 5-10 minutes, after you have aborted the attack? That can help prevent or delay subsequent attacks.

luz', if you are sent to the main page of the general board, you will see on the right side a large black bar with white writing that says "Start New Topic." Click on that, create a Topic Title, type your questions into the big box below, and then click on Post New Topic at the bottom of the page. Tell us as much as you can about your situation (for example, what medications you are taking; whether you are chronic or episodic; etc.). That will help us try to give you good answers.

You have the info you need to get what will help you. If you can't see a helpful doc right away, try a walk-in clinic. If you have options, call around to walk-in clinics and ask whether they will prescribe Imitrex or oxygen for cluster headaches. If you have some documentation of your CH diagnosis, bring that with you. I suspect most will prescribe the trex, but some might also prescribe oxygen. In the short run, try the energy shots (most people prefer them very cold). Other making-do strategies you can start now that help some people include putting your feet in very hot water, as hot as you can stand, in a bathtub; deeply inhaling air from your freezer or an air conditioner or outside if it's cold where you are; exercising vigorously; and taking melatonin at night, starting at about 9mg and working up as needed.

Steroids are generally prescribed as a "bridge" medication to try to control the pain while a preventive, usually verapamil, takes effect. Usually, if the steroids do treat the pain, it returns again after the course is over. I don't know the specifics of the Medrol pack to be able to say whether it is the right prescription or not, and I don't know why you would have that prescription without also an increase in your verapamil dosage, which might need to go much higher while you are in cycle. The pressure change related to flying induces attacks in many people. Whether that will start a cycle or not, I really can't say. But you really, really want to have some abortive, if the steroids don't work or if the attacks return after the steroids. Oxygen, as we have said, is the safest abortive. Injectable Imitrex is also usually very effective, but with more side effects and longer-term consequences. In the short run, try an energy shot such as 5-Hour Energy at the first sign of an attack. It can sometimes abort it, or at least reduce the pain. But please ask firmly for oxygen and/or Imitrex.

nomore', just a possible clarification: be sure to look at that page about splitting trex injections that I provided a link for. Or, if your doctor is supportive, ask for either 3mg injectors or vials of Imitrex and syringes. It is extremely likely that you don't need more than 3 mg, and quite possibly 2, to stop an attack. 6mg is the standard CH prescription, because . . . well, because why sell less when you can sell more.

I don't think anyone can tell you what signals the end of a cycle. For some, it's having the worst attacks, and for some it's a gradual weakening. Fingers crossed for you. You can and should be splitting your Imitrex injections. Read how to do that here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You should have oxygen. Good Lord, I am so tired of having to write this over and over. It's the #1 medically recommended abortive, and it won't poison you like Imitrex. More info: https://clusterbusters.org/oxygen-information/ Your verapamil dose is low, but maybe you have a sane doctor who wants to carefully track how it affects you. (Or maybe you have an idiot doctor who has no idea what s/he's doing. Who knows?) Some people don't get relief from verap until the 900ish range, at the high end, though for others it can be lower. I think it's pretty rare to get results at less than 360. It's highly unlikely that aspirin with codeine is helping. If it feels good to take it to be taking something, go ahead. Also, some studies and some experience have shown that Imitrex can sometimes cause rebound headaches or extend cycles. Another reason to (a) use O2 and (2) split your injections. You also want, in my opinion, to be doing the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ And you should read about and know about busting, which is the reason this site exists. Look in the ClusterBuster Files section, the numbered files. Have you tried an energy shot (5-Hour Energy, for example) at the first sign of an attack, or when you get woken up by one? It can stop an attack or make it a lot less bad. Most people, or at least many people, can get back to sleep after taking an energy shot to treat CH.