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Everything posted by CHfather

  1. You didn't whether the indomethacin is working. If it is, are you confident that you're taking the right dose (could be reduced if it's a higher dose than necessary)? Are you taking it along with something to protect your gut? There are some treatments aside from indomethacin that sometimes help, but not as reliably. I believe that Batch (xxx) has suggested that the Vitamin D regimen can help with some hemicrania conditions. The literature suggests Celebrex, along with many treatments that are used for CH -- verapamil, Topamax, lithium, gabapentin. There's at least one study in which v
  2. Some of the Yale non-CH psilocybin studies use niacin as a placebo, and say so explicitly (for example, https://clinicaltrials.gov/ct2/show/NCT03356483). In the CH study, the placebo is listed as "Microcrystalline cellulose capsule." (https://clinicaltrials.gov/ct2/show/NCT02981173) Maybe you know what that means. I think it means that there is no active ingredient in it. In the CH study, there are two different dosages being tested: essentially, a "high" dose of 10mg and a "low" dose of 1mg (these high and low doses can also be measured on the basis of body weight (see the link above)
  3. Thanks, John'. I'm now "familiar" with it, from having read the study itself, which is here -- https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0040173 -- and also from glancing through some articles that cite it. I certainly have nothing definitive to say, except to suggest the following: 1. The study was done in 2007. You would think it would have been compelling enough to inspire significant follow-up and maybe an actual change in O2 delivery procedures for healthy adults, but I don't see that having happened (though I might not have looked in the right plac
  4. There's info in here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ If your medical tanks are large ones ("M" size or larger) you won't need a new regulator. You can look at the links within that post to see if what you have is the same as what is recommended. Large medical tanks and ALL welding tanks use a CGA540 connection. No one here has reported any health issues/bad reactions from welding tanks, and a lot of people use them. Some people argue that since impurities will really mess up a welding job, welding O2 has to be at least as pure as medical.
  5. drewbie, I haven't read your whole history, so maybe I'm mentioning things that you have already addressed, but there's a lot of stuff out there that could be part of a plan B that becomes part of Plan A. I feel hopeful that the D3 regimen is likely to make a big difference for you. A week is way too soon to tell about that, but it could be what is at least reducing your symptoms now. I think Batch (xxx) would suggest that at a time like now when your symptoms have ramped up, you ought to also be taking Benadryl or Quercetin. Jteira has mentioned busting. A person might even be able to do that
  6. That's a lovely message you wrote, Jt', as your posts so often are. I don't want to hijack this important thread, but I am interested in the sentence I quoted for a few reasons. First, in reading in drewbies' post about the "the symptoms that persist between cycles (that my neuro has insisted are migraine)," and the shortcomings of O2 and triptans, and the many daily attacks, and the efficacy of the nerve blocks (which are often effective for HC), I couldn't help thinking of the possibility that drewbie might have HC or some variation of it. Beyond that, I'm interested in what
  7. Agreed -- it's stunningly wrong. (I should mention that the BOL trial was funded by ClusterBusters.) Many of us here (or several of us, at least) have observed or participated in many experiences of trying to make BOL available over the past ten-plus years. A company, Entheogen, was founded in part for that purpose. But Entheogen couldn't raise enough money to do the necessary clinical trials toward FDA approval. Clinical trials are very expensive, and among other things potential investors didn't see the potential market as big enough to justify the investment -- not to mention that a
  8. https://clusterbusters.org/resource/cb3-cephalalgia-article-on-bromo-lsd/
  9. Thank you, devonrex. I appreciate your caution about this, and will be more careful. I could quibble with some of your points, but what you say is wise and appreciated, and I will remember it.
  10. As Batch's statistics show, low or not low isn't the right criterion for D3 effectiveness. Sometimes you have to get into the "high" range for it to be effective. (4mg is better than 6, but 4 is still probably twice what you need to stop a CH attack. If you're not having side effects and you have plenty of injectors and cost is not an issue and you're not using too much per day, no problem . . . )
  11. I wish I could respond to the other things you ask about, but I can say about these three that to the best of my knowledge, Batch (xxx) says you can start the regimen before being tested, and you should start "with a few doses at 10,000IU per day" (his words), because of the small risk of a negative reaction to D3. I'm not sure where your point 2 comes from. If you're having CH attacks, then your D level is too low. Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test h
  12. I don't have anything to say about Nurtec, except to mention that just yesterday a person posted that s/he was recently prescribed Nurtec: https://clusterbusters.org/forums/topic/7465-newbie-to-group-advice/?tab=comments#comment-71856 I looked at goodrx.com, where there are often free coupons for lower prices for things you can get at standard pharmacies, but the lowest price there was $886.62. I did want to mention that a possible antidote to being knocked on one's ass by Imitrex (and to most of the other side effects) is to use less of it each time. Most people only need about 2mg to
  13. Welcome, Erica. As it is said here, glad you are here but sorry you have to be. First, foremost, and above all else -- OXYGEN is what you want for stopping attacks. It's the life-changer. You will have a lot less need for other abortive meds (such as triptans or Nurtec) when you use O2. Then there's the vitamin D3 regimen -- the best, safest preventive. An energy shot (such as 5-Hour Energy) or drink (such as Red Bull) at the first sign of an attack can reduce its severity or even sometimes abort the attack. There are reasons why the shots are preferred (more caffeine, easie
  14. So DC's "decriminalization" (which you correctly put in quotes because it is actually a decision to make the arrest of users of entheogens a very low priority) has actually made it through Congress? As I recall, Congress blocked even the decriminalization of marijuana in the District. Others will have to comment on the feasibility of busting with chocolate-based psilocybin. I suspect that you can't get enough psilo in that form . . . but I don't know. I do know that you can legally buy RC seeds and have them shipped to DC.
  15. Is he breaking open the injectors to get multiple shots from each? That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or vials and syringes, as Pebbles' mentioned. Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that. And the typical dosage required to prevent attacks is often far higher than
  16. 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
  17. 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
  18. 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
  19. 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.
  20. 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.
  21. 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
  22. 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
  23. 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
  24. 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."
  25. 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.
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