CHfather

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?

Oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. 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/. 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. 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. 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. For many people, deep, full inhales and exhales work best. You can fully exhale before your first inhale of O2. When you inhale deeply, hold the O2 in your lungs for a second or two, and then deeply exhale, 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 who can't get medical oxygen use welding oxygen. Or some do it because it's less expensive over time. A whole discussion of welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ 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. Welding reg for large medical tanks and all welding tanks: ARCCAPTAIN Oxygen Regulator Gauges Gas Welding, 0-4000PSI and 0-100PSI Welding Gas Gauges With 9/16"-18 and 1/4" Hose Outlet and Welding Gas Gauges CGA 540 Inlet Connection - Amazon.com Medical reg that goes up to 25lpm for large medical tanks: Amazon.com: 25LPM Oxygen Regulator CGA-540, Adjustable Flow 0-25 LPM - ASTM G175-03 - Aluminum/Brass, Max Inlet: 3000 PSI, Outlet: 50 PSI - Compact 1.38 inches X 6.29 inches : Health & Household Medical reg that goes to 25 lpm for smaller medical tanks: Amazon.com: 25LPM Oxygen Regulator CGA-870, Adjustable Flow 0-25 LPM - ASTM G175-03 - Aluminum/Brass, Max Inlet: 3000 PSI, Outlet: 50 PSI - Compact 1.38 inches X 4.65 inches : Industrial & Scientific 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 or even half of a tank remaining. Something to be aware of.

As much as I appreciate your using the word "silly" when perhaps you were tempted to use something stronger, I'm gonna say that the trials you describe are not persuasive that oxygen won't work for you. Emergency rooms almost always use flow-rate settings that are considerably below optimal, and the same is true of the regulators that are provided by oxygen suppliers. It is also not unheard of for ERs to use a standard mask instead of a nonrebreather, or for suppliers to send the wrong mask (or cannula). (And no ER uses, and no supplier provides, the "ClusterO2 Kit," the mask specifically designed for people with CH.) My daughter who has CH was convinced that oxygen didn't work for her until we set up an optimized system. Now she aborts all but the very worst with O2 in well under ten minutes and describes O2, as many do, as a "lifesaver." So maybe my "95 percent" claim was unduly weighted by her experience, but I will say that a large number of people who have been at this board saying O2 didn't work for them were surprised when it turned out that it did when they had an optimized system.

Well, it is one of my job responsibilities to say here that for at least 95 percent of people who have said here that oxygen doesn't work for them, one of two things has been true: (1) they had not used oxygen properly, probably due to a doctor's wrong prescription or a medical oxygen supply company giving them the wrong equipment or not having optimized the equipment that did have; or (2) they didn't have CH. (I'm not being facetious about #2: There are some CH lookalike conditions for which oxygen is not effective. But since triptans did work for you, I think it is unlikely, but not impossible, that you don't have CH.) If any of the following situations was true for you, then you really need to try oxygen again, because it makes a huge difference. IF... (1) ... you got a concentrator (machine that makes oxygen out of room air) and not tanks/cylinders; (2) ... you had anything other than a non-rebreather mask, such as nasal cannula or some kind of mask other than a non-rebreather; (3) ... you found that the rate of oxygen flowing into the bag on your mask was too slow to keep up with a correct pace of breathing .... THEN you didn't really have a proper test of oxygen. Since you say oxygen had "no effect," I'm kind of assuming the culprit would have been #1 or #2. Or of course it is possible that you are in the very very small minority for whom O2 doesn't work, but I wouldn't want to accept that until I was sure I had given it the best shot. We have seen too many times here people who thought that oxygen didn't work for them but then tried again and found that it does.

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.

It's a fascinating topic, but I am also strongly with you on this, Bosco'. I guess people would have to think about whether they have always had the identified traits. (Once after 18 months of severe back pain, my GP sent me to a pain management guy, who was also a psychiatrist. He administered a personality test (Minnesota Multiphasic) that among other things asked about pain frequency, intensity, and expectation of relief. The doc solemnly told me that I seemed to have a predisposition for hypochondria. I am a calm and polite person, but I lost it at that.)

You don't have to go that far away. We haven't seen the sun in Chicago for months.

FDA Approves Auto-Injector for Migraine, Cluster Headache | MedPage Today It says, "DHE can relieve pain associated with cluster headache attacks, particularly when administered intravenously." Of course, this is not an IV autoinjector.

You know to tell the dentist not to use epinephrine, I hope. It's a big trigger for many people. (As I understand it, it's added to Xylocaine because the epi reduces bleeding, so the actual anesthetic to avoid is Xylocaine+epinephrine.) This is from a post somewhere else: "Anesthetics containing epinephrine (such as Xylocaine) and nitrous oxide have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects. Another person has mentioned carbocaine as an anesthetic that didn't trigger his CH."

DMT experiences and advice - Theory & Implementation - ClusterBusters

D3 regimen - ClusterBuster Files - ClusterBusters