CHfather

Shya, this is great news. I remember how hard you were searching for solutions. From what can be read online, Seroquel seems not to work very well for most people with CH -- but maybe the ones it works for don't come back, as you so kindly have done, to let people know. I suppose that most people reading your post will be stunned, as I was, to read that a doctor prescribed demerol and your boyfriend kept taking it for so long -- and then he started taking percoset. That stuff rarely helps with CH. He had enjoyed some success with busting as I recall, but didn't like the effects. He must have really hated those effects to take that other stuff for so long. I just have three questions. I recall that he hadn't had a top-quality oxygen system when you were here in the past. Did he ever get that set up and try it? Did he ever try seeds as a non-hallucinogenic busting method? And does injectable sumatriptan not work for him? Well, four questions, now that I think of it -- wasn't trying indomethacin a possibility at some point? Did he ever do that? I hope his success continues, and thanks for letting us know.

Thank you for that reminder, amon!! I think I'm remembering correctly that it is the calcium supplement that has to be taken 8 or more hours away from the verapamil, because verapamil is a calcium channel blocker.

10lpm is a low flow rate. It could work for you, but it's low. Is that as high as the regulator goes, or does it maybe go to 15? Again, your supplier should have at least a 15 lpm regulator for you. 15 should work, I think, but many people find that 25+ lpm is preferable. We can discuss this more after your basic setup is in place. I realize that "small" and "large" are kind of imprecise terms. Is your tank roughly 3 feet tall (or more), or is it roughly two feet tall (or less)? As Pebbles' suggested, it's very rare for injected sumatriptan not to work. Nasal sprays work for some people, but if it didn't work for you, then you want the injection (split into smaller doses, as I have mentioned, and of course with your doctor's approval (though I presume your doctor approved the spray, and I don't know how different the injection is, particularly if you use the split dose)). More than a few people find that more than 480 verapamil is needed during a cycle. Up to twice as much as that. Obviously, another thing that would have to be approved by your doc.

rental in orlando should be simple. like i say, call your provider. and this place looks like a possibility: http://www.orlandomedicalrentals.com/medical-equipment-rentals-orlando.asp yes, energy shot/drink at first sign. many prefer them very cold (but not everyone). combination of caffeine and taurine is said to be more effective than coffee, for example. but some people use a strong cup of coffee. i'm a fan of the shots because they're easier to get down fast and they actually have more caffeine than a standard 8 oz. drink like redbull. split your injections if they're 6mg: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ agree with you that rebounds are a possibility, so limit use. and of course remember that trex will block busting.

Along with the excellent advice/questions from Denny and Pebbles, I wonder whether you have oxygen cylinders/tanks, or a concentrator (machine that makes O2 from room air). You want tanks. Your supplier should have a NON-REBREATHER mask for you -- insist that they provide that. (The better mask that Denny mentions is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit) If you have tanks, how big are they are what is the lpm on the regulator? You need at least one big tank (an M tank) and at least one smaller one (an E tank) for portability. If they have only given you one or two small tanks, that's not enough. An energy shot such as 5-Hour Energy drunk down just before starting the O2 can help speed the abort. It sounds like you're saying that you have been doing repeated steroid tapers. That's a really bad idea, because of the long-term effects of the steroids. How much verap are you taking? Are you taking it only when a cycle begins, or continuously?

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.