CHfather

In the US, the brand name for atogepant is Qulipta. In the EU, I think it's Aquipta. @Craigo, thank you for this (and for all your other great contributions to substantive knowledge about CH)! I notice that Ubrelvy and Nurtec are both also gepant formulations. Might we imagine that they would also help (it seems from the abstract that the contrast in this study is with galcanezumab (Emgality))?

If you have significant pain all day, and the attacks that seem like CH are "bursts" as you write (which I think of as briefer than a typical CH attack), and if a triptan doesn't help, it seems possible to me that you might have one of the CH "lookalikes," some form of hemicrania, maybe paroxysmal hemicrania (Paroxysmal Hemicrania: Causes, Symptoms & Treatment) or hemicrania continua (Hemicrania Continua: Causes, Symptoms & Treatment). I'm just guessing here: you can look to see how well the symptoms match. Unlike CH, hemicrania is generally not responsive to triptans or oxygen (or busting, except for some brief relief of maybe a day or two). So one test would be to take the medicine that treats hemicrania, Indomethacin. Another would be to try oxygen. As I say, I'm just guessing here. Sometimes people "try" Indomethacin, but the dosage isn't enough, or it's not continued long enough, to get a real test. This is the recommendation from the International Headache Society: "In an adult, oral indomethacin should be used initially in a dose of at least 150 mg daily and increased if necessary up to 225 mg daily. The dose by injection is 100-200 mg. Smaller maintenance doses are often employed."

Dan, is this a standard aborting time for you, or is it sometimes faster? I'm going to paste some info here that might help you speed it up a bit. >>>You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information.

@DanP, it is commonly found that O2 is less effective when tanks have less oxygen in them. This can happen when the tanks are as much as half full, and it seems to be very common at 1/3 full or less. If you can vary the flow rate of your regulator, people say that increasing it as the tank becomes less full is one way to cope with this situation, before resorting to a new tank. I hope this is the issue for you, since it's pretty easily fixable.

I was a management consultant for many years. As I said to a former colleague the other day, ChatGPT is a better consultant than I ever was -- in less than a minute, and for free. I don't have grandchildren, but Chat is becoming like my grandkid, where I keep saying to others, "You'll never believe what Chat did today! Isn't this fantastic!?!" Still a bit of a jokester, though. I had it colorize an old black-and-white photo of my father the other day. Everything looked right, except that it was someone else's face! I pointed this out, and Chat said "Oh, gosh, you are right. Let's try that again." It did. A different face, still not my father's.

jon019 has about a fifth as many posts as I do here -- and the combined value of his posts is at least five times mine! i would advocate for proper tanks, including a large one -- your oxygen supplier is treating you like most of its other customers (COPD, etc.), who get small tanks for outside and a concentrator for inside, but they are, i am sure, legally required to give you what you need for ch. for some people a concentrator does "work," in that an attack is stopped. perhaps because it's first times using, and because you are smaller, you will get okay results from the concentrator, particularly if you combine it with some caffeine. but for reasons jon' gave, it's highly likely that you would always get better results from the tank. if you don't outrace the O2 supply at 15lpm, the "ClusterO2 Kit" mask might not make much of a difference for you, as long as you block any leakages from the nonrebreather.

40mg/day is a very very very low dose. So is 80. As you say, you never know, but the likelihood of this helping you seems to me to be very close to zero.

@Sub Below is an excerpt about O2 from a longer post, which you might want to look at: OXYGEN You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/. The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below. You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc. Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ (There is some research that indicates that O2 is sometimes less effective when first used, and then gets better over time (pretty quickly). That's something to keep in mind, although many people get excellent relief from the beginning.) If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale. Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap). Be sure you are getting a good seal, particularly if you have facial hair. You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2. Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. There is no documentation of people experiencing “rebound attacks” from using oxygen at proper levels. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere. Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly. One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank. A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information. Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of. Some notes about dealing with oxygen suppliers (repeating some of what was said above). To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working. Some people have found that the O2 delivery people are quite willing to provide them with extra tanks.

yes, get oxygen. yes, consider busting preventively during the year. definitely start on the D3 regimen, which will be as effective preventively (for future cycles) as the verap. just a few more words on the verapamil. first, it takes some weeks to get into your system, so if you can realistically anticipate a one-to-three-week cycle, there would seem to be no point, or very little point. prednisone is sometimes used as a "bridge" to quell the pain while the verap is taking effect. there are things to be said against prednisone, and using it more than once a year is strongly discouraged, but it could be considered, i would think, for cycles so short. except, as you say, why risk poking the bear. (also, verap dosage has to start pretty low, to make sure there are no issues, and then it should be monitored as it is increased. in such a very short cycle, it is very unlikely to help, and you don't want to be on it year-round in your current situation.)

as is said here -- welcome, and we're sorry you have to be here. you might want to start here for a general overview of some treatment things: Basic non-busting information - ClusterBuster Files - ClusterBusters The great people here will help you any way they can.

I think most people who have come here from the UK have been prescribed O2 and received it. Maybe something has changed??? Are you doing the D3 regimen? D3 regimen - ClusterBuster Files - ClusterBusters You know about splitting triptan injections? Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters DMT? DMT experiences and advice - Theory & Implementation - ClusterBusters I haven't checked on OUCH-UK for a while, but it has in the past been a very valuable source of advice and support. OUCH(UK) - The Cluster Headache Charity | Support for Sufferers & their Families

A discussion here: Migraine and cluster headaches: Treatments and respect are hard to come by.

Long tradition, of course. Dr. Sewell, who was among the first to study and write journal articles (early 2000s) about psychedelics and CH, taught at Yale Medical School.

SORRY!!! Yes, dental anesthesia is very often a trigger. Most commonly, it's epinephrine that's the cause, because that is part of the standard anesthetic for "normal" procedures. I don't know about the three ingredients you list, and it would be very good to be able to tell others what to avoid. Is it possible to check to see whether anything they used was similar to epinephrine? (It's not unusual that someone has a question about anesthetics here, so the more we know, the better.) (The reason that epinephrine is used is that it limits bleeding and apparently also prolongs the effect of the anesthetic.) Of course, we can hope that there is just a short-term effect from this and you'll go back to the way things were before!

Just to clarify the question -- Do you mean connecting the e-tanks together somehow so you have a longer-lasting supply without having to switch the regulator from one tank to another? I'm pretty sure this can be done with welding O2 tanks, but I don't know about medical tanks. @Racer1_NC will know.