CHfather

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.

Just as an aside to my post above, I have been using AI lately for complicated work projects with amazing results. If you haven't messed with AI yet, I'd suggest just going to ChatGPT.com and using the free version. I had pasted an image below, but it doesn't seem to show up. I asked ChatCPT to take a photo of me that I supplied and dress it up for my avatar, which you can see, This is completely trivial but an example of fun you can have. A more complex example, I asked it to give me a list of all Chicago Public Library branches located within a state legislative district (state house or state senate) where the legislator has a Hispanic surname. There are about 80 branch libraries and about that number of total state representatives, so you might imagine how long it could take to do this the old-fashioned way. With one more query, I had an answer in less than three minutes (about 90% correct). Or, if you ask about the best ways to treat CH, or the pluses and minuses of using psychedelics to treat CH, you'll get a perfectly good answer in a few seconds.

This does not answer your direct questions, but might help some others. I asked ChatGPT, What apps are available for tracking cluster headache attacks? In less than five seconds, I got this answer. Top Apps for Tracking Cluster Headaches 1. Migraine Buddy Platform: iOS, Android Features: Logs attack times, intensity, symptoms, triggers, medication use Sleep tracking and weather correlation Customizable entries for cluster headaches Pros: Highly customizable, clean interface, useful for medical appointments Cons: Focuses mainly on migraines, but still works well for clusters 2. Hale Headache Diary (formerly "N1-Headache") Platform: iOS, Android Features: Developed with neurologists Tracks attack severity, triggers, response to treatment Generates reports for doctors Pros: Data-driven; cluster headaches supported Cons: Requires some setup time 3. Headache Log Platform: Android Features: Simple and fast interface for tracking headaches Track duration, severity, triggers, medication Pros: Easy to use; supports cluster headache tracking Cons: Limited export options 4. Migraine Monitor Platform: iOS, Android Features: Real-time monitoring and sharing with providers Community support features Pros: Good for collaborative care Cons: More migraine-focused, but clusters can be tracked 5. Cluster Headache Diary Platform: iOS (less common; may not be available in all regions) Features: Designed specifically for cluster headaches Logs cycles, duration, oxygen use, medication Pros: Tailored for cluster headache Cons: Limited platform availability and updates Bonus: Data Export & Doctor Reports Most of the above apps allow exporting your data as a PDF or CSV, which is valuable when consulting with a neurologist or headache specialist. Recommendations Based on Use User Type Recommended App Want simple tracking Headache Log Want rich features + analysis Migraine Buddy Want provider collaboration Migraine Monitor Want cluster-specific tracking Cluster Headache Diary or Hale Headache Diary Would you like a printable comparison chart or help picking one based on your device and preferences?

Cyman, do you have oxygen or some other abortive (a triptan such as Imitrex or Zomig; DMT)?

I have been very, very surprised that a product called Theraworx actually seems to help to quickly relieve my intense leg cramps. It's not preventive -- it's a cream or roll-on that you apply when the cramp begins (though sometimes I use it when I'm getting into bed at night as a possible preventive). It's just magnesium. Since it's topical and not consumed, maybe it wouldn't affect you as you have described. Amazon.com: Theraworx Relief for Muscle Cramps Foam Fast-Acting Muscle Spasm, Leg Soreness with Magnesium Sulfate - 7.1 oz - 1 Count : Health & Household I also concur with Jeebs that if you can find a form of magnesium pill that doesn't have negative effects, it would be good. I would say that oral magnesium has helped me more than potassium.

Stijn, I appreciate your non-defensive responses to questions! Language like this "The reason your CH cycle started..." kind of triggers me (in contrast to maybe something more like, "My hypothesis for the reason your CH cycle started...."). But, like I say, I admire your openness in interactions, and I admire the effort you are making to learn whether your theories hold true.

So, he is talking about cycles in 2018, 2020, and 2022. Does the sun change signs every year on August 17? If so, while that might "explain" those past cycles (or at least the 2020 and 2022 ones, since he doesn't say the 2018 cycle started on that day, and he probably would have mentioned that), what "explains" not having cycles at all in 2019 and 2021?

Batch has made this recommendation: I buy the bulk powdered vitamin C in 2 lb jar as shown below and stir two level teaspoon measures (8 grams) in 12 oz of water. I drink a gulp of this solution every two hours throughout the day until it is gone by bedtime. This is the least expensive form of vitamin C at 3 to 4 cents/gram. The liposomal vitamin C costs 8 to 9 cents/gram.

Given all the circumstances, it seems very unlikely that this is the issue, but I think it's almost universally true that the anesthetic that dentists typically use, Xylocaine + epinephrine, triggers CH attacks. (It's the epinephrine that does it.) But, among other things, the attacks usually come on more quickly than what you're describing, and of course you've had many previous dental procedures so it seems very likely you would have had the X+e during one of them. I think your next procedure with this oral surgeon won't be for quite a while, but I suppose you could request a different anesthetic just in case.

A small (I hope) hijacking. I've been reading more about Dr. Graham, who first provided the "leonine" characterization. Just thought these quotes about women were worth mentioning. "It's a man's disease," says Dr. Graham, and women who are afflicted with cluster headache tend to "act mannishly." What's new on heads and their aches? (This article recounts a couple of 1977 talks about CH at a conference. On one hand, they're pretty cringeworthy, and on the other they at least show some folks trying to figure out what to do about CH. (CH was considered just a subdivision of migraine until the 1960s -- which, depending on your age, might seem like a long time ago or pretty recent.) (In 1960, 5% of medical students were women.)) This is from 2006. I think it still took a long time after that to really acknowledge that many women have CH (and many doctors still don't seem to know that), but she (the author) was trying, at least. "Cluster headache is a notoriously painful and dramatic disorder. Unlike other pain disorders, which tend to affect women, cluster headache is thought to predominantly affect men. Drawing on ethnography, interviews with headache researchers, and an analysis of the medical literature, this article describes how this epidemiological “fact”—which recent research suggests may be overstated—has become the central clue used by researchers who study cluster headache, fundamentally shaping how they identify and talk about the disorder. Cluster headache presents an extreme case of medicalized masculinity, magnifying the processes of gendering and bringing into relief features of the world whose routine operation we might otherwise overlook." Uncovering the Man in Medicine - Joanna Kempner, 2006

This could be the photo in the dictionary next to "leonine"!!

Well, sticking with the Salamanca traits, I suppose one might imagine that you would see more smoking in a group of people who are more anxious, impulsive, paranoid, and OCDish than others (For example, "Those with higher obsessive compulsive symptoms report greater motivation to smoke for negative reinforcement, sensorimotor behavioral-ritualistic, habit/automaticity, and stimulation reasons." Obsessive-Compulsive Symptoms and Cigarette Smoking: An Initial Cross-Sectional Test of Mechanisms of Co-Occurrence - PMC)

Indeed. I only put up my cat avatar because there was some joking I wasn't getting enough likes, and cats were a theme among the more-highly-liked posters. Never had a cat; never wanted one. But then again, it's very relevant here to note that I don't have CH (my daughter does). So you might want to take my scores (responder #3) off the spreadsheet. In 1969, a fellow wrote about CH patients' "leonine" appearance," and in 1974, the great Dr. Kudrow "confirmed" that observation. PHYSICAL AND PERSONALITY CHARACTERISTICS IN CLUSTER HEADACHE, Headache: The Journal of Head and Face Pain | 10.1111/j.1526-4610.1974.hed1304197.x | DeepDyve Kudrow also said there that his male CH patients were on average almost six feet tall, which was about three inches taller than the average American male. Questionable as all that might be, there is this spooky-seeming thing from 2021: "Frontal Bone Height and Facial Width were able to discriminate, one independently from the other, CH patients from Healthy Controls with an overall accuracy of 77.00%." (PDF) Can Craniometry Play a Role in Cluster Headache Diagnosis? A Pilot Exploratory TC-3D Based Study Well, I took the Salamanca test. As you say, it seems to leave a lot to be desired. For one thing, the questions/items on the survey do not seem to be well correlated with the actual traits they are supposed to be measuring. I'm guessing that there are two questions per category (there are 11 categories), and you get one point for "sometimes," two for "frequently," and three for "always." (The actual line between "sometimes" and "frequently" seems much blurrier to me than the line between "frequently" and "always.") My top three traits were schizoid, anancastic, and paranoid, all of which are in the CH top six. I also got the same score for "anxious" (also in their CH top six) as I did for anancastic, but somehow they decided that anancastic was in my top three but anxious wasn't. I have to say that by the "normal" definitions of these terms, I am not an anxious or paranoid person. So my four top answers were all in the six most common ones for people who actually have CH. No idea what that might mean about the validity of the findings/instrument.