CHfather

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.

john', this is generally very good advice, but 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 (reported in your other post) are taking at least twice as long as they should. (I know from your other post that 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.)

There's no logical explanation for this difference except that something is wrong with your portable cylinder, or the regulator or maybe with the mask at higher flows. I am pretty certain that your tanks shouldn't be getting really cold when you use them. If anything, your aborting experience should be the other way around: excellent or very good relief from pure O2 at 15 lpm and practically no relief at 10lpm from a concentrator. (The relief you are getting from the concentrator is poor, but I'm glad that at least you are getting something.) Call your O2 supplier. Maybe someone else will show up here with a much better response than mine. That happens all the time, but I'm less confident of that than I normally would be because so many of the real experts are at the conference in Texas right now. Is your mask a non-rebreather mask? If you don't know, ask the O2 supplier when you call them.

Welcome, d'w. I can't directly answer your question. I assume that because calcium channel blockers often are effective preventives for CH, your doctor wanted to try a different one to see whether your husband could get the benefits without the side effects. I know that a lot of people used Procardia back in the "old days" (~10 years ago), often with good results, but somehow Verapamil has seemed to become to ccb of choice. Point is that it's possible that it can work for him, and therefore might be worth trying with a close eye on the side effects (which should always be true with ccbs in any event). That he got hit after busting isn't a sign of whether the busting was effective or not. Takes a few doses to be effective, and among other things it's not clear whether anything he had been taking until recently might have interfered with the bust. For example, I think Pamelor is a tricyclic (?), and it's believed that they might interfere (if he'd still been taking it within about 5 days of the bust). In any event, it looks like you will tell us more soon, which is great.

What Denny said. What flow rate is the regulator are you using, and what mask do you have? Have you tried an energy shot or energy drink right as you're starting the O2? Are you getting good deep breaths of O2, and holding it in your lungs for a moment before you exhale? If you're using trex, you should at least be splitting your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Have you read the document and the follow-up posts about triggers? https://clusterbusters.org/forums/topic/4568-triggers/ You can't take the seeds yet because of all the blockers, but you don't have to worry. With 90-plus percent of people, there are zero psychedelic effects. If you get things more under control with O2, D3, energy drinks, you can also start with low doses of seeds to be close to 100% positive that you won't get any effects. You don't sound like a wimp. CH is miserable, scary, and incredibly hard, particularly on someone in your situation with kids and a job. You're doing what you can, what you feel you have to do. It's a war, and you're doing what you can. We're just hoping, and believing, that maybe we can help you find better ways. I've also PMed you regarding the D3 regimen.

So so sorry, elpo. I know many people here (even some who do have people around them) can appreciate the terrible aloneness. Since busting has been so good for you, I think many would suggest that sometimes when one busting substance seems to suddenly lose effectiveness, another one can still be effective. So, if you were using M, maybe seeds would work. Like Denny said, if you don't have high-flow O2, you should. And if O2 was one of those meds that didn't work for you in the past, that might have been because the flow rate was too low, or you didn't have a good-enough mask, or even that you weren't using the best breathing method. Stay in touch, please.

Treelove, J's questions are worth answering. It would probably be good to tell us what else you have tried. Verapamil? Triptans? Those are the two most common prescriptions (oxygen should be the most common, but it often isn't), but even if you had them, if you were given too little verapamil or an ineffective kind of triptan (pills instead of injections), you haven't really "tried" them properly. Doctors screw up all the time in treating CH. In my post above yours, I give all the information I have about really learning more about DALT, which is to go to the Facebook group called "Cluster headaches" and become a member. There you will find lots and lots of informed discussion about DALT. I provided this link in that post, though I can't say for sure that it will work for you: https://www.facebook.com/groups/17789934480/ If you go there and request membership but have any problems getting accepted (which shouldn't happen), let us know.

Now posted in ClusterBuster Files section. https://clusterbusters.org/forums/topic/4568-triggers/ Thanks to everyone!

You can get oxygen prescribed by a competent doctor (which means maybe there's a 30% chance of getting it, maybe up to 60 or 70 percent if you provide them with the info and you're persistent). Lots of people get welding oxygen from a welding supply store and order a mask and regulator over the internet. Initial cost might be $200-$300, depending on a lot of factors (size of tank(s); quality of mask; rent or buy tanks; local market); only cost after that is tank refills. If you want specifics, just ask.

Thanks. Team effort. I was just the scribe (not to be confused with the revered Psiloscribe), and not even a very good one without help from THMH, who's the one that started this ball rolling.

Since you know that oxygen is essential, you need to figure out a way to get it. Welding oxygen is an option, but I don't think you can give up yet on getting it through the medical system. You can ask his PCP to look up the standard treatments for CH in any reference book or app s/he uses. Did the PCP give a reason for being so limiting? You can significantly reduce the amount of Imitrex he gets with each injection (and it will still stop his attacks): https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Melatonin at night: 10mg and more as needed Drink down an energy shot (such as 5-Hour Energy) or energy drink (Monster, Red Bull) at the first sign of an attack (this will probably work better than the method he's now using) Putting the feet in very hot water when an attack starts seems to help a lot of people As far as pharma goes, it's completely standard to prescribe verapamil as a preventive along with imitrex as an abortive. I guess if hubby's worried aboiut his heart he might nix this, too. Look over the list of possible triggers here: https://clusterbusters.org/forums/topic/4562-next-triggers-draft/ He's a great candidate for busting (because he's not using anything that would block busting). Read about that in the numbered files in the ClusterBuster Files section of this board.

You're not the first to use the hot-water-on-the-feet approach. Several have reported it here, and said they had success with it. However, I don't think they have made it as scalding as you have -- they have a different theory about how it works, which is not by displacing pain but by affecting blood flow. You say that you have "tried every conceivable method mentioned on the internet to treat them with nearly no help." What does that include? High-flow oxygen with a good quality non-rebreather mask? The vitamin D3 regimen? Melatonin at night? Energy drinks/energy shots? Imitrex injections? Busting???? Most people can abort an attack quite quickly with oxygen. The D3 regimen is a very effective preventive. Energy shots/drinks work very well for many or most people. Busting (taking psychedelic drugs in a proper way) is very effective. Let us know what you've done. Maybe the extreme superficial pain strategy will turn out to be the one that works best for you -- but I really doubt it.

Lovely. Looking forward to any additions, comments, and suggestions.