CHfather

FWIW, two relatively recent posters from somewhat nearby countries have been Milelli from Germany and Siegfried from Belgium. Siegfried actually has a hemicrania, not CH, but he has done a lot of CH investigation. Denny, is the Facebook group more international? As I remember, there is (or recently was) an LSD study in Basel. I don't remember whether it was specifically for CH, or perhaps for something else, like anxiety. (If there was a selection here to rate this post as "almost completely unhelpful despite good intentions," it could get overwhelming support, I think.)

My daughter got an M tank and good service from a DC-area Lincare office. I don't remember which one. It was quite a few years ago now, and we had to educate the office manager and respiratory therapist about CH (at first they had provided an e-tank and cannula), so I can't say for sure (even if I knew which office) that you would still get that kind of responsiveness.

On the other hand . . . . this is from a 2010 study sponsored by ClusterBusters that collected data from more than 1100 people with CH. (Rozen and Fishman, "Cluster Headache in the United States of America.") The authors wrote, "The circadian periodicity of cluster headache is present but is not as common in the population as previously thought." "Months of the year that cluster headache cycles would start. In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin. By percentages, the months of October (26%), September (21%), April (21%), March (20%), and November (20%) were the most likely for cluster headache sufferers to start a cycle. The remainder of the months of the year were evenly distributed with 11-13% stating their headaches cycles would start during these particular months. The lowest percentage was noted for the month of June at 10%."

The key word there is "some," and the key issue is causality. Just as is the case with verapamil, more than a few people who have been here have speculated that triptans messed up their cycles or caused them to become chronic. My daughter who has CH has never used verapamil and didn't use a triptan for the first seven years she had CH. In fact, she had no meds, not even oxygen, during that time. Rode out her attacks. Her cycles nonetheless became more frequent, less predictable, and worse (though she isn't chronic). I'm not saying that anybody is wrong about causality issues, because nobody knows, but I am saying that tens of thousands of people with CH use triptans and take verap, and they ain't all turning chronic. Whether triptans and/or verap are messing with their cycles, I don't know, but as I said above, for many people things change no matter what they do or don't do. And lots of people stop verap after their cycles without reporting significant effects. Some people take extended release verap and think it's great, others (most others, I think) find that the ER doesn't work very well for them but the immediate release does. As intelligent humans, we're always looking for causality. Is the weather making a cycle worse or bringing one on? Stress? Eating the wrong things? Taking some other med? Probably yes for some of those things for some people and no for others. CH is a crazy monster, and all people are different. If you get your D levels up, verap is likely to become irrelevant to you -- if you're like most people.

If anything has been missed in all the great responses you have received from these members of the starting lineup of the CB all-star team, it might be covered in here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Others have reported that "rationing" of O2 has been an issue (see, e.g., the seventh post in this thread and the last one -- https://clusterbusters.org/forums/topic/7969-o2-supplier-in-lasocal/?tab=comments#comment-74750).

As Racer said, CH meds, including verapamil, can become less effective over time. Your 240/day verap is essentially the minimum dose, and IR is strongly recommended instead of ER. Yes, you got results from the 240 ER in the past, but IR at a higher level might be needed this time. In glancing through this thread, I'm not seeing -- or I probably am missing -- mentions of the vitamin D3 regimen, which is a better, and better-for-you, preventive than verap.

A paraphraser.

Thank you. Not confusing at all, I don't think, and vey helpful to me. My understanding: Benefits of demand valve: (1) It resolves the issue of waiting for the bag to fill (other things will do that, too, such as a reg with the necessary lpm, but DV does it brilliantly); (2) no waiting, no fiddling: It's there, it does what you need when you need it without you having to think about it or play with dials, which is a particularly big benefit for quickly addressing nighttime hits or in other circumstances (e.g., in the car); (3) it can save some O2 in some circumstances. I would add what I mentioned before -- that at least for my daughter, there are psychological advantages from having no bag and having the "ideal" delivery system, and any psychological benefit in this situation is not insignificant. Disadvantage: Cost. Similar or equal abort times can be achieved with a reg that will cost far less, as long as that reg has sufficient lpm to be sure the bag is always full for the next inhale -- recognizing that a reg is imperfect compared to the DV when it comes to the "no waiting, no fiddling" and possible other less tangible psychological benefits.

Racer..... You know this stuff as well as anyone. How much of an improvement would you say a demand valve is over a high-flow regulator with the "Optimask" (ClusterO2 kit)? My daughter (the person with CH in my family, for those who don't already know that) loves her demand-valve-type system (she has to push a button to get the O2, but it's there on demand), in part because it takes some of the "drama" out of the bag filling and then being emptied. Making an O2 abort as simple as possible has psychological benefits as well as possible practical ones. So I have nothing bad to say about demand valves if a person can get one/afford one. But just in practical terms, and insofar as this can be determined given all the variables, I don't think she gets faster or better aborts than she was getting with a welding reg and the Optimask. Curious about your view/experience (and others') about this.

eBay is a frequent source. Not always there, but sometimes. We got ours there. It's a very nice thing to have, but . . . I'll be darned if I can see how demand valve conserves any significant amount of O2. We've had this discussion and I've been outvoted, but I still don't see it. I've never seen demand valves for sale at amazon. Are you sure that's what you got? Do you have a link in your "My orders" section? I have to admit, here again, that I have always understood that medical demand valve systems could not be obtained in the US without a prescription, unless at a "black market" site like eBay. Happy to be shown to be wrong about all of this.

Dr. Lee Kudrow, who had CH, founded the first private headache center in the western US and in 1981 he published the first substantial research on oxygen for CH. I think he might have been the first to consider O2 as a treatment, but I'm not sure about that. He was the first to recognize medication overuse headaches. His son, David, runs that clinic now (somewhere in California, but I'm not sure where). His daughter is the actor Lisa Kudrow.

I think your reading will clarify some things, so just briefly . . . . You should be using the M tank (with a reasonable regulator), not the concentrator. Did your provider not even supply a basic mask to use with the M tank? Your supplier should also be able to provide you with a regulator that goes to at least 15lpm. A typical sensible doctor's prescription calls for up to 15 lpm (and a typical sensible doctor's prescription also calls for a nonrebreather mask). You probably will do better by buying your own regulator, so you get a higher lpm than 15 and you pay less overall, since you are "renting" the regulator from the supplier. You can get a much smaller tank for portability. You will read about that. The smaller tank requires a different regulator than the M tank. Oxygen is always a necessity for CH, and attacks can become a bit more intractable over time, so even though your current system is working okay, you want to be sure your system is optimized. It's hard to imagine that those Boost canisters will help you. 10 liters is about one minute of treatment. BTW, the prednisone taper you are on is pretty long. Three weeks, with four days at 60mg, is a more standard prescription. Not a huge deal, but you don't really want to be using more pred than necessary.

It is often suggested here to stay on the oxygen for a while (5-10 minutes) after you have stopped an attack, because that seems to help hold off subsequent attacks. You are stopping attacks with 10lpm from a concentrator, using cannula???? You're gonna be thrilled at how much faster it can happen if you have even more correct equipment (in addition to the mask you have ordered). Is there a way that you can get cylinders/tanks from your O2 provider instead of the concentrator? Concentrator O2 has more room air in it than is ideal, and with a cylinder you can use a higher-lpm regulator. Cylinders also address your portability question, since the smaller cylinders are highly portable. There's a fairly thorough discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

One simple way that they differ is that while people with migraine can generally go lay down in some helpful situation (dark, quiet room, damp cloth on forehead, etc.), people with to CH are too agitated to do that (and it doesn't help the pain). Agitation -- pacing, rocking, etc. -- is a clinical sign of CH. This is pretty generally true, even in milder versions of CH. Since you say that in some situations it your attacks can last for a while, maybe you have experience. At the most basic level, medical preventives and abortives for CH and migraine are the same, so it might not matter all that much. O2, however, is generally not effective for migraine. The D3 regimen is a preventive that helps with both.

Overall, I'd say you are not incurring any overuse risk, particularly if it's sumatriptan that you're using. Sumatriptan has a very short half-life, so your daily 25mg is fully out of your system before your next dose. I don't know whether you're messing with anything significant by breaking them up, but I would think not. (They do come in 25mg doses.) You are very fortunate! We rarely -- if ever; I don't remember it happening at all -- see anyone here who stops a CH attack straight off (or at all) with any dose of a triptan tablet, let alone a dose that small. Even with migraine, where the tablets are sometimes effective, it usually takes a while for a pill to have an effect.

DragonKIller, is that you? https://clusterbusters.org/forums/topic/6701-what-if-there-was-a-cure/?tab=comments#comment-66277

Seems like the O2 shortage in CA is a very real thing, and rationing is real. Here's one article of many about that: https://www.inverse.com/mind-body/covid19-oxygen-shortage-explained So, maybe there are in fact "official" prioritization mechanisms in place, and maybe you really are fortunate that they made an exception for you. (PS: The Food and Drug Branch of the California Department of Health Services regulates the quality, purity, labeling, manufacture, sale and advertising of oxygen for medical use and its delivery systems in accordance with the Sherman Food, Drug and Cosmetic Law (California Health and Safety Code Sections 26000 through 26851)).

If your supplier will give you a 25lpm regulator (or higher), that's good. You can also get your own for under $35, and also get the mask that's made for people with CH (bigger bag, among other things) for about the same amount: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit I don't think they can legally decide not to serve people with one condition because another condition is more profitable. O2 suppliers are government-regulated in all states, I'm sure -- certainly in CA, where what isn't regulated? Not to say they wouldn't do it; just that there must be some kind of recourse.

I posted a comment about how I thought he had understated the pain of CH by suggesting that attacks are far shorter than they actually are and not saying that they are day after day, often many times a day, and that I also though it was surprisingly uninformed about CH treatments. Of course, that comment is now submerged among hundreds of others, many along the lines of "I stopped gluten"; "Mine stopped with menopause"; etc. But, as you say, at least it's out there. Practically any time I have ever read a newspaper or magazine article about something I actually knew something about, I have found it disappointing -- inaccurate, inadequate, whatever . . . . So why do I still give so much credence to ones that are about something I don't know much about?

Attached here. NYT - CH 7-22-21.pdf

Seems like a very good awareness article. (I have attached a PDF to my post a little below here.) A little mystifying that the author seems so helplessly clueless about treating his own CH. https://www.nytimes.com/2021/07/23/opinion/headaches-research-cure.html?action=click&module=Opinion&pgtype=Homepage

We're happy for you to be here, Momma', but (as it is said) sorry that you have to be here. CH is defined as chronic if you don't have any pain-free periods that last a month or more.

I think it's pretty common over time for cycles to vary in duration and also in the regularity/predictability of attacks. Do you feel like your treatment of your attacks (including prevention) is optimized? Sounds like in the past the cycles have been infrequent enough and relatively brief enough that you might have gotten by with less than optimal methods. This post might have some ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ For a feeling of understanding and solidarity (and great info), there's nothing like attending a ClusterBusters conference with a few hundred other folks. This year's is just outside Chicago, September 23-26.

"“We not only saw a 10% increase in the number of neuronal connections, but also they were on average about 10% larger, so the connections were stronger as well.... It was a real surprise to see such enduring changes from just one dose of psilocybin." https://news.yale.edu/2021/07/05/psychedelic-spurs-growth-neural-connections-lost-depression?utm_source=YaleToday&utm_medium=Email&utm_campaign=YT_Yale Today-Best of the Week Public_7-17-2021