CHfather

You're doing something in addition to these pills, right?

Here's an unsatisfactory answer, and maybe just a temporary one until Batch or some other expert replies. It depends. Depends on what your starting D level is; depends on what level you need (since it varies); depends on whether you are "loading" with extra D3 to speed up the process; appears to even depend on what form you're taking your supplements in. Some people have reported some positive effects in just a few days (maybe not remission, but reduced severity/frequency); others haven't seen much in a couple of weeks. I'd say virtually everyone who sticks with it eventually gets substantial benefits. Batch (xx) might be able to say something more specific about this.

I like what you did with the valve!!! My daughter also has one (store-bought) and she loves it, so I'm not knocking it. But this is a question I have to keep asking. If you have the proper kind of mask (a non-rebreather with a reservoir bag that holds the oxygen until you're ready to breathe it), which looks like what you have from the photo, you're not losing the O2 that comes in while you have inhaled and are holding it in -- that's the O2 that you use for your next inhale. It's the same O2, and roughly the same amount, that you get when you pull the trigger. You might be saving some O2, but I would say that it's far from 50%. I would love to be clearly corrected if I'm wrong about this. My belief is that whether you inhale from the bag or on demand, you are still using roughly the same amount of O2, except for what might be lost from some kind of leakage in the non-demand system.

I don't think many (if any) people think of caffeine as a preventive, but it works great for many to stop an attack that has begun. I would consider drinking some as you start your breathing routine when you have an attack. There was a research study once showing that breathing cold air was just about as effective as O2. Maybe you want to consider doing some of your breathing by an air conditioning vent, if you have one, or even at an open freezer. Or not -- not sure you want to mess with what's working okay now. Hope this new doc is responsive! And glad to see you getting the D3 in order. Regarding your mother's observation, I sometimes speculate that significant overuse of caffeine might worsen some aspects of CH. This is just fuzzy speculation, based on my daughter's experience. The "energy drinks" that are recommended, particularly the smaller energy shots like 5-Hour Energy, can have a lot of caffeine, and that can be kind of jangly if overused. I don't think that some coffee in the morning and some as you abort an attack will have any counterproductive effects.

Good on you, spud!!!!!!!!!!!!!!!!! As jon' suggests, it might not hurt to have a triptan, too. If the nasal spray works for you (as it probably will) for backup to an O2 system, that's great. If only injections work, be aware that you can reduce the physical and financial consequences very significantly by getting three shots from each autoinjector. We can help you cross that bridge if you come to it.

The good news is that it's highly unlikely that Cyclobenzaprine (flexeril), a muscle relaxant, is going to interfere with busting. It's always possible that I have this wrong, and others will correct me. In other news: Cyclobenzaprine--WTF?? I've been here for ten years and read hundreds of posts in which people describe the meds they are taking, and if there have been three other people who have had that prescription, I'd be shocked. I've never seen any research that it helps with CH. Maybe some discomfort can be ascribed to muscle tension, but I seriously doubt that flexeril can address it at that level. I'm probably being overly cranky late at night, seeing another person with an prescription from an actual so-called medical professional that is highly unlikely to have any value, so don't take me too seriously. Maybe I'm turning into Potter (very inside reference). As one actual medical professional has said here, if you take something for six weeks and you don't know whether it's helping, it isn't. So the jury can be out a couple more weeks. I'm going to imagine that over the course of 33 long years, you have tried the more conventional CH medications and concluded that they didn't work for you--verapamil, oxygen--or maybe you didn't like the side effects of triptans or prednisone. And since your cycles are relatively infrequent, maybe you don't have reliable sources for those things. One thing I can tell you, particularly regarding oxygen but also with reference to those other things, is that they are all prescribed wrong more often than they are prescribed right, so most people who think they don't work for them probably just weren't doing it right. Also, non-pharma things like the vitamin D3 regiment are hugely effective, but largely unknown outside of CH message boards. You don't have to respond to all that. Just me "venting," I guess. Busting is a good choice, but it can take time, and it's nice to have some effective abortives or preventives while you're doing it. If you haven't seen the general principles of busting as listed in the blue banner at the top of each page ("New Users - Read Here First "), that'll give you a good starting place. Those same principles are listed at the very end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- along with a bunch of other info, most of which, as a CH veteran, you probably already know.

A very dedicated fellow from somewhere in Europe (Belgium???) persisted with creating and testing a data-collection app, getting people to use it, and tracking the data. It's here: https://nobism.com/remind-collect-data/ In addition, some very large studies, such as the one carried out by Dr. Larry Schor and others, have surveyed people with CH and created detailed profiles of treatments and perceived efficacy. You can imagine the immense difficulty of getting reliable information from these gigantic efforts, given the many, many variables that need to be taken into account. But many blessings to those who are making the effort. Batch (xxx) has also tracked the impact of the D3 regimen with a fairly large group of people with CH.

https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Such crazy crap they put people through! "It looks like CH, but because you're such and such, I won't diagnose it as CH." The idea that to have CH you have to be a man, older, and a smoker, is nutso thinking from many years ago! The reason women have been told they don't have CH is because women aren't diagnosed with CH because "women don't get CH." Here's another file you might look at for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Although the heading says "non-busting information," there is actually a summary at the end about busting that you should look at. Regarding your Imitrex, be sure to look at this. You don't need the full 6mg (if that's what your injector contains) to stop an attack. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

@Psiloscribe??????

Thanks for getting back to us, Jack. So many don't. Much appreciated. Is this helpful at all? "Justin Kirkland ... was recently awarded a U.S. patent for the improved synthesis of the ergoline BOL-148: useful in treating cluster headaches." https://www.a4m.com/justin-kirkland.html#:~:text=Kirkland has earned a BS,useful in treating cluster headaches. https://patents.google.com/patent/US20160237080A1/en I have tried to locate this Kirkland fellow, and have called a couple of places where he is said to have worked. Good as I am at googling, I can't find him. As we have discussed, Drs. Halpern and Passie hold a patent related to using BOL to treat CH ("methods and kits"). https://patents.google.com/patent/US8415371B2/en

Yes, using welding O2 is still pretty common practice. In the ten years I have been here, I haven't heard about any kind of health issue from using it. Here's a post that attempts to answer some of the pragmatic questions: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Back in the day, a couple of people reported success from using both. Here's one relevant thread: https://clusterbusters.org/forums/topic/1635-d3-and-kudzu/?tab=comments#comment-20779

I only shared it. All credit goes to Batch (xxx) for developing it, promoting it, and being there for anyone who has wanted help with it.

'fern, lots more options.... Please look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Beautifully (and sadly) described, Vader'. You can manage this thing. I'd suggest you might read this file for an overview of possible ideas. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The great people here will be alongside you with as much guidance as you want.

Dogo, you are playing around the edges of your CH. Get/do the stuff that works: oxygen, D3 protocol, energy shots . . . and plenty of other options. Whatever doctor prescribed the vasograin had a very limited understanding of CH. I suggest again that you click on the word here and read the file that comes up.

Dogo, the first thing you want is oxygen to treat your attacks. And you probably want to start the Vitamin D3 protocol that has helped many people. There's a lot of information in this post, but I think it would be good for you to read it over: click here.

Consider welding O2: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Splitting injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Some info that might be helpful since you're recently diagnosed: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

ClusterBusters is a tax-deductible nonprofit organization. You can donate here: https://clusterbusters.org/donate/ (For future reference, there's a "Donate" button on the homepage, which you can get to by clicking on the word ClusterBusters at the top left of any page.)

Received mine a couple of days ago. I see the store is closed now, but I wanted to say that it's a very nice shirt -- good material, nice printing, fits right. "Well done!" and thank you!! to the t-shirt lady.

The nice thing about 5-Hour Energy is that it packs a lot of caffeine (twice as much as a RedBull) but can be chugged down quickly. Plain strong coffee is enough for some people (keep it ready in the fridge). 10 minutes is a reasonably quick abort. Caffeine and/or the special mask (ClusterO2 Kit) will probably speed that up. You might not get a whole lot faster abort with 25lpm, but you had said that 15lpm didn't really keep pace with your breathing, so it seems reasonable to think that if you can breathe at your most effective pace, you could cut off some additional time. Is it that you now can't use any triptan, or just that you can't take as much as the Imitrex injector (6mg)? It's always good for anyone to stay away from the triptans as much as possible, but you might want to be aware that 2mg of sumatriptan is enough to stop attacks for most people, and there are ways of using only that much. For example ... https://clusterbusters.org/forums/topic/2446-extending-imitrex/ There are a few additional ways of dealing with an attack in this post, under "Other 'Treatments'...." https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Also some info there about the D3 regimen, which as others have said is very much worth pursuing.

Marlon, for an overview of treatment possibilities, you might take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Welding O2 is an option many choose. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ You might not use a lot more O2 with a 25lpm regulator, since you'll probably be aborting faster with it. Are you doing some caffeine as you start on the O2?

Thanks for keeping us updated about this.