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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.

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,

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.

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.

Introducing our Team:⁠ Anna Williams - Vice President⁠ Chronic Cluster Headache 13 years⁠ New Albany, IN⁠ Duties include: US Conference Planning Committee, ClusterBuddies Coordinator, 5k Coordinator⁠ ⁠ 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/ Just a note our room block is filling up fast! Be sure to book your hotel (and register too so we can plan well!)

Care Partner Perspective Perspective matters and this year we are honored to have the daughter of someone who experiences cluster headache to give their picture of this disease. Anna's mom has cluster headache and it has shaped her educational path. 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/

Yea, I think it's a valid question now. I was in a meeting yesterday actually on behalf of several chronic pain organizations and it was with a staffer of a senator on that committee that is setting the tone for cuts, and they just don't get it. They don't understand that we had pennies and now they are cutting up our pennies. BUT, I hope Dr. Oshinsky can talk through research. I heard him talk a couple years ago and it was really amazing- and one of things we have to do, is get in the rooms- many areas of government and outside of government - there are patient voices on panels in the rooms - and we have to get seats in those rooms.

...the first question i'd ask is: what funding? cancer research, among others, has already been cut. we have never experienced funding for CH anything besides minimal...now?