CHfather

Maybe you've already checked, but I wouldn't assume that oxygen will not be available at the location of your destination wedding (congratulations). Depends on where that destination is. Some providers will arrange for tanks at US and non-US locations, or know something you can do to get tanks, so check with your provider. In some resort-type places, there are businesses rent medical oxygen cylinders (might or might not need a prescription). I think with some persistence you will be able to find something almost anywhere. Hopefully, you'll knock out your current cycle long before the happy day. You don't mention energy shots/energy drinks -- do they work for you? I guess I wonder whether, if all else is failing (which we are not expecting to happen), you might get some injectable sumatriptan to have on hand.

Thanks, folks. Very much appreciated.

Trackle, Thank you for clarifying my misunderstanding about sumatriptan and insurance. I think in a previous discussion you had thought about using the injectors instead of the spray, because they can be split. From 12 6mg injectors you could get 24-36 effective injections (2 mg works for most people; some use 3 mg). My guess would be that maybe the neurologist will suggest topiramate as a possible preventive. I know we've discussed many other things in this thread, and I won't remember them all, but I hope you'll be able to pursue a better alternative for oxygen with the neurologist (getting insurance to pay for it), or maybe it will make sense to switch to welding O2. And I hope you might find out that the D3 regimen is okay for you to follow. I think that's your best resort for an effective preventive. We've discussed busting with seeds. I remember you saying that you do have a top-quality mask for your O2 use, and I don't think we followed up on that, so I'll just mention that as far as I know this is the only mask made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit. I think we discussed melatonin, too, but I really don't remember where you were on that. No need for you to respond to any of this. It sounds like your are, very reasonably, tired of talking about it. But of course I, and others, would like to know any way we might be able to help.

I really don't think sumatriptan is an off label treatment for CH. It's certainly listed in every official medical guide, along with oxygen, as the standard abortive. (In fact, one of the frustrations is that the medical standard calls for 6mg sumatriptan, making it hard for people to get 3mg injectors, even though that is all they need.) I have heard of people having difficulty getting enough Imitrex covered by their insurance (which is why people will tend to stockpile it when they are out of cycle), but I don't recall hearing very often of insurance refusing to cover it at all.

https://migraine.com/topic/preventing-migraines-with-vitamin-d3/

"Breathing" as a trigger. That explains everything!

john', as you suggest in your other post, I think what your doctor was really saying was along the lines of "It wasn't in my textbooks, and I don't really want to think more about it, so let's call it coincidence." So I hope you'll keep paying attention (as I'm sure you will), because a pattern just might show up.

Moxie, what a hard, hard thing to endure. I am so sorry. Small donation has been made.

Hoping for good things!

Here's some info about how O2 is used. https://clusterbusters.org/oxygen-information/ But ask questions. Many experts here, and some new strategies not mentioned in there. It could make a very big difference in your life. There is a better mask, designed specifically for CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit With verapamil, you have to start at a lower dose and work up, with monitoring of its cardio effects. Sometimes a course of steroids is used to try to address the pain while the verapamil has a chance to take effect. The thing about melatonin is that people with CH have low levels of it, so this is thought of as a kind of "replacement therapy," I guess. More than just to help you sleep. Some people get into the upper-20-mg levels before getting real relief. We didn't mention energy shots (such as 5-Hour Energy). For a lot of people, quickly drinking one at the first sign of an attack will reduce the severity of, or sometimes even abort, an attack. Strong cup of coffee works for some. Triptans are only meant to be abortives, not preventives, so your experience of them only dealing with the attack at hand is consistent. Some people are convinced that triptan use causes rebound headaches and extends cycles. A crappy tradeoff to have to make. That's why getting O2 working right as your abortive is so important. I hope you are now splitting your injections.

To set up a welding-based system, you need a regulator and a non-rebreather mask. You can get the highly-recommended regulator here -- http://www.harborfreight.com/catalogsearch/result?q=oxygen+regulator(there is also probably a Harbor Freight store near you) -- and the mask here: https://www.amazon.com/MEDSOURCE-No-Model-Non-Rebreather-Oxygen/dp/B00BBFQ64M/ref=sr_1_2_a_it?ie=UTF8&qid=1483476376&sr=8-2&keywords=non-rebreather+mask You can get both of them in a couple of days with fast delivery, and if you can get a tank through that relative, you're in business. Very hard for me to think of any reason to wait. Having taken D3 is not the same as having done the full D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Check your life for triggers: https://clusterbusters.org/forums/topic/4568-triggers/ You don't seem to be taking a pharmaceutical preventive. Verapamil is the most commonly prescribed one for CH and migraine. People with CH often find that in cycle they need pretty high doses -- higher than what they have taken before, up in the 900mg levels -- before it actually works. Melatonin at night, starting at 9mg and working up as needed, helps many with nighttime attacks. Busting, described in the numbered files over here -- https://clusterbusters.org/forums/forum/6-clusterbuster-files/-- might be your best current hope for treating CH AND migraine long-term. I agree with Pebbles about what Mayo can and can't do for you. They might have some other pharma stuff for you to try (octreotide or something), but pharmaceutically they have no secret answers, and you're not close to being a candidate for more drastic treatments.

Brad, five days between busts is strongly recommended. If you bust on a Thursday, for example, then the next would be Tuesday, and then Sunday.

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.