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Everything posted by CHfather

  1. Nah, he hasn't. For example, if Imitrex (sumatriptan) injections don't work for him, then he doesn't have CH. The thing is that many meds are prescribed wrong, so people try them and think they have tried everything, but it's quite likely that most of those trials have been meaningless because the dosage was wrong, the type of medicine was wrong, etc. The range of D levels associated with effectiveness against CH is very broad. If he's in the range but D3 is not working, it might only mean that to work for him, he has to be at or near the top of the range. Nice advice from drewb
  2. 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.” They have acquired a patent to make BOL without having to use LSD to make it. That's a big deal. 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
  3. 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
  4. 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.
  5. 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.
  6. 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
  7. 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 vi
  8. I'm having a hard time knowing what you're referring to here. The D3 regimen? Antihistamines? On what are there "some limited scope studies underway" -- quercetin? The D3 regimen? Are you saying that Batch (xxx) is inappropriately "tweaking a theoretical construct" by recommending Quercetin in place of Benadryl? Maybe your final paragraph is a summary of what you are saying: I have no personal interest in this, except to re-post Batch's recommendation for those who might have missed it, but a quick internet scan shows, among other things, this statement from a 2016 published
  9. I think I'm not the only one who hadn't caught up with this change in Batch's (xxx's) recommendations for what to do about a CH flare-up. I'm quoting this from another post of his. For those who aren't familiar with this overall topic, I'll say again that this is recommended during a CH cycle, not as something to do when out of cycle. "Ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin. Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing."
  10. 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.
  11. 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
  12. CHfather


    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.
  13. Good. Hope you get a positive response! You might want to look at this: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  14. 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 substa
  15. 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 s
  16. 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
  17. 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-bu
  18. 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 d
  19. 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/
  20. 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
  21. 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.
  22. 'fern, lots more options.... Please look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  23. 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.
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