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...an oxygen tank w/o a regulator is just a chunk of metal. for me an e tank lasted about 2 aborts and maybe part of a third, so yes, ya need more than 1. before m60's were available i always had 6 e's. get yurself a regulator (Amazon, or O2 shop, but that'll cost too much to lease or buy from them) and a deal with an O2 shop to swap out empties. an ABSOLUTE necessity is a non-rebreather mask, the best is from the catalog link at clusterheadaches.com. ask us more details please, i'm not quite sure where you are in this journey... best jon

I have an e tank now but only one and no regulator. I read I needed a bigger tank but am having trouble getting one so I'm wondering if multiple e tanks will work.

Not exactly sure what the question is...... This is sound advice. @jrc give us a little more information as to what you are trying to achieve.

....i always had 4-6 e tanks in house...used mostly for travel and work...for home it was 1-2 m60 which lasted at least twice as long as an e. regulators for each (different) can be purchased on Amazon and i bought 25 lpm versions tho i usually only needed 12-15....

....good news and bad news...the worst hit i ever had (an 8 for 6 hrs that scared ICU nurses) was because a f*****g anesthesiologist blew me off when i begged him not to use epi. the good news: it did NOT trigger a cycle....

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!

Hello All - I was an episodic and eventually chronic cluster sufferer for over 12 years but over 2 years ago I was able to kick the clusters due to a great vitamin d protocol that I found on this forum! Since then I have been doing great, however I just had my wisdom teeth removed 5 days ago and the last 2 days i have been surprised by 4 clusters up on the 7-8 scale. The anesthesia used was a combination of propofol, fentanyl, and versed and I am really nervous and upset that this may have triggered my dormant clusters. Has anyone had this experience? Did the cluster cycle last a long time? Im worried that I will just fall back to where i was a few years ago. Any advice or help would be great! VR

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.

Can I use multiple e tanks with a 15lpm regulator or do I need a bigger tank?

Aww big sigh of instant relief! Fabio's cool but Fabio with sholder kitty.. 2 cool for school.

Great stuff CHF but I'm seriously missin the kitties after that Fabio, jail break, sawed off one z image

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?

I can’t say I’ve tried AI tracking tools, but it sure sounds like a good idea (thank you), while we wait for AI to figure out the 100% effective for all CH’ers, zero side effects treatment (some of us tapping fingers impatiently ).

Hi everyone, I'm curious if anyone here has explored using AI or digital tracking tools to help manage cluster headaches - particularly for logging triggers, medication timing, or sleep patterns. I've been experimenting with a few apps and found that combining them with tools like voice-to-text or reminder systems has helped me stay more consistent. Would love to hear if others have tried tech-assisted approaches or if there are any apps or tools that have worked well for you. Always looking for smarter, less stressful ways to manage this condition. Thanks in advance!

Have you been misdiagnosed with migraine or had a delayed diagnosis because you have migraine? Dr. Stephanie Nahas of Jefferson Headache Clinic has been involved in creating a program for cluster headache. In the world of headache, a more rare condition such as cluster headache can be lost when migraine is so much more common. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

I think we all just learn to deal with it and take it as it comes. Not like we can really do much to avoid a hit, they come when they want to and hit as hard as they want to. Some have had success with busting other not so much. Sometimes it brings the pain down, makes it go away for a period of time or does nothing at all. No rhyme or reason that we know of. Just when you think you have it tamed things change and we blame it on the weather, moon or life event. I truly believe that we were all just picked to have clusters because we can deal with it like no others can. We are all the lucky ones that can honestly say they have a high threshold for pain and back it up by the countless hours we spend every week, month or year banging out head into our hands, walls floors or anything else that looks fun to take your mind off the devil inside you trying to escape. It is what it is but we are all lucky to have this site to get it out in the open with others that understand it. Just do your best and keep moving forward in hopes that someday we will have a cure for this infliction.

This is a question that has been on my mind more lately. I work as a pastor, so pretty much control my weekly schedule and by God's grace have never had a cluster on a Sunday morning. I was episodic for 12 years, but for the last 14 months I've been chronic. For the the largest part of that I have averaged 1-2 attacks a day. But the last couple of months some weeks have been 2-3 per day. The lack of sleep, and the likelihood that one will come on a Sunday morning, have really weighed heavily on me. Appreciated reading these testimonies. Thanks.

Hi. I also have clusters for 15 years. The first twelve years i kept working (mailman) but as the years went by the CH got more intense with attacks during the daytime so i crashed from not sleeping for months and went on sickleave. but now i am in the WIA( disability income insurance) And i do not have to work anymore. besides cluster i also have complex pain syndrome. Tinnitus and i have ASD. these things together got me a disability income. but i live in Europe. I guess you are living in US so it will be more difficult or impossible to stop working and get money from your insurance. goodluck with finding a solution for your problem

Thank you for all of your responses!! So very helpful!! Forever Grateful.

Got a really understanding employer, I drive a coach for a living all over Europe, but when in cycle, I work local and have days off when needed,

...i was also lucky in having an understanding employer who recognized i needed some accommodation. i also recognized that my situation might cause added burden to colleagues.... so to "compensate" their wonderful understanding, i made myself as indispensable as possible. crap project? i'm there, OT or holiday work?, got it. extra "jobs" beyond normal responsibilities? yup. no one, and i mean no one, ever heard me whine or complain. tough job made tougher...but that's what CH does. totally upfront with direct supervisor, theirs, and HR so if you are not as lucky as me they cannot say: we didn't know when they (try to) fire you......

Introducing our Team: Bob Wold - Founder/Executive Director Episodic cluster headache with periods of chronic - 40+ years Lombard, Illinois Duties include: Everything from legislative, education of clinicians, research initiatives, to conference planning and fundraising. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/

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.