CHfather

A LOT in here, including that the company is "... doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.” https://www.forbes.com/sites/amandasiebert/2021/01/18/betterlife-pharma-is-developing-second-generation-psychedelics-drugs-that-leave-out-the-trip/?sh=1405582f648f&fbclid=IwAR1qjwmeOl-LLa9KQyetBMeRSQpBtwKJmmpz0xxX27kFM6-1cRHmE-T5e0o

I wish I could answer any of your questions, but I can't. You might PM Batch (whose handle here is xxx) about the cramping. He's very receptive to questions like yours. Mostly, I just wanted to thank you for posting this. Looking forward to responses about the O2 levels from the smart folks.

Longer thread about quercetin: https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582 I am with you in wishing there were a simple updated description of the regimen (or if there is one, that I knew where it was). I have also lost track.

speaking of tweaks, that is now the "quercetin component." see paragraph 2 here: https://clusterbusters.org/forums/topic/7412-worst-cycle-of-my-life/?tab=comments#comment-71577

My only comments on the great advice above are (1) I'm not sure there's great evidence that taurine is a significant factor in the effectiveness of energy drinks/energy shots. There might be such evidence, and I might have missed it. For some people at least, plain strong coffee or energy drinks without taurine seem to work fine. I mention this because there can come a point when you get really sick of the energy beverages. (2) Triptans are very effective against CH, but not in pill form (takes too long to get into your system). The nasal spray works for many, and injectable forms work for virtually everyone. You might want this in your arsenal in case of breakthrough attacks. (3) Busting has been an excellent preventive for many who figure out an effective dosing schedule between cycles, and the overall D3 regimen can also result in extended painfree periods. You can read about busting basics by clicking on the blue "New Users" banner at the top of every page, or at the very end of the post I'm going to link you to below. (4) Don't dawdle -- get oxygen!!!! This post has a bunch of info that might be helpful (busting info at the end): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

The recommended dosage does make a lot of people tired. You can take smaller doses, and maybe some more at bedtime. Overall, I'd strongly suggest PMing Batch, whose handle here is now xxx. Click on the envelope icon at the top right of the page and put xxx in the To line. Recommended high dose for CH is 50-80mg, tapering after that. You do better with imitrex injections or the nasal spray. A lot more expensive, I imagine. You can split each 6mg Imitrex injector into 3 shots. Hard for me to imagine why RB would work better than 5Hr, but if that's the case, so be it. You drink an RB as you're starting on the O2, right? Ginger is also good for shadows. Gotta say that your neuro doesn't sound great, but that might be unfair, since his/her low-level prescriptions (low flow, low pred, a triptan pill) seem to have worked in the past. If you have a larger tank, which doesn't seem likely but maybe you'll get one from your new supplier, you'll want a different type of regulator for those tanks. A CGA 540. This can be an O2 regulator or a welding regulator. That bridge can be crossed when you get there. RC is illegal in Florida. Most suppliers won't ship there. eBay sellers might. Some of what's in here might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Good suggestions from kat'. When you mention the "new D3 regimen," does that include Benadryl? If not, I'd include it. (I think the recommended dose is 25mg four times a day.) For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more. Higher flow rate seems to help with that (new tank is of course better). Is your pred dose pack a Medrol Dose Pack (the most common kind)? Often the pred levels can be too low in that to really be helpful. Relpax is a pill, right? If it is, I'm surprised that it helps you (but glad it does). Energy shots (such as 5-Hour Energy) have a lot more caffeine than standard energy drinks (such as Red Bull). You can get advice about RC seeds here, if you're interested. Legal to buy and possess in most US states and many countries.

Mixed results reported here. Put Emgality into the search bar at the top right and you can see what people have said. I wouldn't put too much stock in what you see here, though, in terms of forming an overall opinion. It's likely that people posting here will be ones that Emgality didn't work for.

Good. Hope you get a positive response! You might want to look at this: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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.