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Everything posted by CHfather

  1. You might already have seen this as you've been reading. It gives you a sense of the treatment landscape, including basics of busting at the very end: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly. Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time. The D3 regimen is a good preventive, but probably won't help you right
  2. Even with the loading, two weeks might very well not be long enough for him to get a significant response. Could be, but not very likely.
  3. marcianin, what did the doctor prescribe to you? It might be valuable for you to read this post, which will give you an idea of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would suggest starting a new topic in the "Theory and Implementation" section, with the heading "Newly Diagnosed" or something like that. That's how you'll get the most advice and have it in one place.
  4. Leo, do you mean a concentrator (makes O2 out of room air)? For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing. I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great. If not, a
  5. trjoas, Bless you a hundred times for your perseverance and your positive mindset.
  6. This is not in fact today's "accepted naming convention." It's what people once did (often inaccurately--the "Spanish Flu," for example, didn't originate in Spain, and "German measles" didn't originate in Germany) or still choose to do. Today's "accepted naming convention," pursuant to WHO guidelines issued in 2015, is to avoid using place names. This convention is widely accepted. For example, when the US under Trump's leadership tried to refer to the current coronavirus with a Chinese reference in an official G7 communication, the other G7 countries refused to go along. At least some of y
  7. There are sites, such as www.goodrx.com, that provide coupons for drugs. I feel like some people found that the prices for Imitrex using those coupons were actually lower than what they were paying with insurance.
  8. Just typing Orlando into the search bar at the top right side of any page brings up a whole lot of discussion about getting O2 in that area. I don't know whether there is real possibility in any of those threads. The Boost canisters aren't going to help in any substantial/affordable way. Is there a reason you're not pursuing welding O2? https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  9. Not sure where you are with the fitting. I haven't checked broadly on this, but they seem to be a standard item carried by hardware outlets. That version's usually plastic, and might cost a couple of bucks. It looks like this (ones I have seen have also been grey or greenish-blue). https://www.shopnebulizer.com/p-salter-labs-nipple-nut-plastic-hose-barb-fitting.html?gclid=Cj0KCQiAs5eCBhCBARIsAEhk4r7tJ_qJlVbD-LYAVblIQDDS1UQmdfwxpfpdHXiWOyF99pUai8qpIFQaAuFpEALw_wcB If I was going in to ask, I think I'd ask for a barb fitting for an oxygen regulator. Or, a thingie you attach to an oxyg
  10. As I always say when a question like this comes up, this isn't the best place to get a good answer to that question, because people who have permanently stopped their cycles are not the users here. There are some good answers in the previous replies about the possibility of pretty-much permanent relief if a preventive busting cycle is maintained, and there might be lots of examples among people who came here and didn't come back of even better successes. There are similar stories of seemingly potentially permanent results from the D3 regimen. And, considering all the hype among informed peo
  11. 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
  12. 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)
  13. 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
  14. 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.
  15. 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
  16. 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
  17. 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
  18. https://clusterbusters.org/resource/cb3-cephalalgia-article-on-bromo-lsd/
  19. 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.
  20. 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 . . . )
  21. 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
  22. 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
  23. 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
  24. 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.
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