Jump to content


Master Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by CHfather

  1. 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
  2. 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.
  3. Good. Hope you get a positive response! You might want to look at this: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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/
  10. 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
  11. 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.
  12. 'fern, lots more options.... Please look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  13. 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.
  14. 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.
  15. 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.
  16. Consider welding O2: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  17. 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/
  18. 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.)
  19. 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.
  20. 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 t
  21. 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/
  22. 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?
  23. Thanks for keeping us updated about this.
  • Create New...