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Everything posted by CHfather

  1. Yes. Just be careful as you're buying. Smaller medical tanks take one type of regulator (a CGA 870), but larger medical tanks and all welding tanks use a different type, CGA 540. Then there are welding regulators, also CGA 540 but they are not sold by lpm. They will support an lpm of at least 25, but you can set it for less. For more information about this, you could look at this file: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Examples: CGA 870: https://www.amazon.com/EverOne-Oxygen-Regulator-Litersper-Connection/dp/B07L9P7V55/ref=sr_1_3_sspa?crid=3ILK8
  2. I think most people would still need help getting a 120 cu ft tank into and out of a vehicle. We have found that multiple smaller tanks (for example, three 40 cu ft tanks instead of one 120 cu ft tank) is more expensive but completely manageable. Or two 60s, maybe. One can get rolling carts/dollies that will hold two 60s.
  3. Thank you for posting this. It looks like the D test is $60. This one is a bit less -- $47. https://www.lifeextension.com/vitamins-supplements/itemlc081950/vitamin-d-25-hydroxy-blood-test (I didn't check to see whether there are additional charges at one or the other that change the actual cost.)
  4. clovis', if I'm remembering correctly, you're using a very low flow rate. The bigger of the two small tanks (an e tank) holds 660 liters (just because of how cheap it is, I suspect that you have a d tank, which holds 425 liters). So, with an e tank you could have 60 minutes (4 15-minute sessions) only at about 10 lpm, and with a d tank only at about 7 lpm. I'm not questioning what you are saying, but only making sure that people reading this know it is very suboptimal.
  5. clovis', You are now getting four aborts from each of those small tanks?
  6. Ah. Thank you. Regarding pharmaceutical meds, you might have a longer cycle if you're not taking a preventive, which typically would be verapamil. But it usually takes verapamil at least a couple of weeks to take effect. Steroids seem to stop cycles for some people, but for most (I would say) they just provide temporary relief (often buying some time for the verap to take effect). I don't think that you are prolonging your cycle by not using pharma abortives. Regarding non-pharma things, you almost definitely will have a shorter cycle if you have been using the full D3 regimen, though star
  7. I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me. To answer the fundamental question, my daughter has been through many years of cycles with no medications at all. She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen. A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost eve
  8. The "redneck" method that I mentioned and linked to above involves filling a kitchen garbage bag with O2 and using that along with room-air hyperventilation. If your oxygen supplier is going to honor a sensibly-written prescription, which should have specified that it's for CH and that the flow rate should be at least 12 lpm and you should get a nonrebreather mask, then they ought to supply you with a larger tank. TBH, I seriously doubt that that is all they have (not doubting that they told you that), but if it is, they are required to either replace your tanks as often as necessary o
  9. CHfather


    Living with CH - 8.5x11 - 9-8-14.pdf
  10. Since I asked you all those questions and you answered them, I feel compelled to respond. First, to say I'm really sorry for all you have been through and are going through. Beyond that, I have very little to offer. I'd say that trying indomethacin seems to make sense. As you probably know, it does effectively treat hemicrania headaches that are CH "lookalikes" (but hemicranias are typically (though not always) unresponsive to oxygen). I assume you mentioned that you have to lay still during an attack because you know that is contrary to a CH diagnosis. I'm not saying it rules out that dia
  11. I'm surprised you can abort at all with a flow if 8 or less. You can buy a higher-lpm regulator, but of course you'll go through the tanks faster. O2 supplier should supply reg and mask. I assume you'll call them today and see what's involved in getting bigger tanks, but with self paying, I think it is probably going to be less costly for you to go the welding route. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ You could try Batch's redneck method, which I linked you to above, which will use a lot less O2. I feel compelled to mention again that there are people wh
  12. I don't know what this means. Are you saying that you feel an attack coming, take the pill, and then you don't get an attack for 6 to 12 hours? So maybe you're thinking that the pill acts as some kind of a short-lasting preventive? I'm not asking these things to critique your clarity -- I'm just trying to figure out what's going on. Apparently O2 + Red Bull sometimes works and sometimes doesn't. And it's mysterious to me that your attacks come back two hours after a full 6mg injection of sumatriptan. It is possible to split those injections, and those who do find that 2-3mg is sufficient
  13. This is a little confusing to me, for a lot of reasons that I guess I should mention. The principal one is a question about the size of the tanks. If they're D size tanks, you'll get about one or maybe two aborts per tank at a flow rate of 15 liters per minute. If they're E tanks, you'll get about two or maybe three aborts per tank. (You could use Batch's redneck method to get more, maybe. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ (Some people have expressed safety concerns about this method.)) So many questions . . . Does this include regulator of
  14. bridge, In your two posts you haven't really mentioned what you do to treat your CH. Now that your cycle seems to have ended, it might be a good time for you to take a close look at that. This post includes the "New Users" info from the blue banner at the top of each page, along with some other non-"busting" information that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  15. Thanks, Freud! I feel like there ought to be a simple pinned post in the CB Files section about proper Emgality dosage. Fingers and toes crossed here that the D regimen is doing some magic for you. Anything else to report about your appointment with McGeeney?
  16. A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her! She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it. The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH ha
  17. Agree with F'T'--it probably isn't worth it. But a few thoughts. You don't say how much you were taking. In the studies of melatonin for CH, dosages of 5mg were sometimes effective for treatment, and the treatment effects typically only showed up after 3-5 days. So you might consider trying a lower dose, and maybe taking it an hour or two before bedtime. Melatonin levels are typically low in people with CH, particularly nighttime levels during a cycle--but it also appears that they might be generally low in people with CH, even out of cycle--and melatonin is an important thing for regulat
  18. Terri, there's a lot of advice here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I'd strongly suggest you read it through. It could be that he's not using oxygen at optimal efficiency. Yes, an energy beverage helps a lot of people -- as Pebbles' says, a lot of people prefer the "energy shots" such as 5-Hour Energy, which are actually more powerful than the larger drinks like Red Bull and can be drunk down quickly as he starts on the O2. You could also see a link there for how to split Imitrex injections, as Pebbles' suggests. Well, I'll put t
  19. Not a woman here, but my daughter is, and O2 works great for her (thank God). Can you give a citation or link for that article?
  20. If I can say so, those were some pretty fast jumps. Plenty of info about him here. Not an unimpressive resume. No mention of surgery. Work on CGRP; a developer of Imitrex. https://medvadis.com/our-team-2/ He co-wrote some articles with the "bad" Dr. Shevel about migraine patients with "extracranial" migraines and with cervical muscle issues, and those have turned out (from what I have read) to be useful for treating a subset of migraines.
  21. Well, of course they were looking for major investors (which we were often told were just about to sign on), but they also did a crowdfunding thing, which a few friends of mine contributed to. It did seem futile, even at the time. You might know that people have found unscheduled substances that could be purchased "legally" and used to treat CH as psychedelics would treat it, but without the trip. Perhaps not in the class of BOL in terms of efficacy, but very effective for a whole bunch of people (with the qualification that Denny mentioned -- a miracle for some; a bust for others). 5-M
  22. Denny, did you follow the Sewell vs. Halpern vs. Rick Doblin vs. bunches of other people saga that ensued when Halpern patented the application of BOL for CH? Man, that was a juicy bunch of recriminations. You almost had to pick sides, and I picked Sewell. You can still find it on the internet, but I won't link to it.
  23. Bob is a hero to many of us. And everyone who keeps it together while coping with CH is a hero to me, too. There's no reason for me to be chiming in here, and absolutely no need for you to respond. I had a strong psychic investment in this (my daughter has CH) back then, and a financial investment in Entheogen (in the form of donations) that was not insignificant for me. It's my understanding -- which could well be wrong in many places -- that there are two patents at issue. One is the patent for BOL-148 (2-bromo-LSD) itself, and one is the patent for using 2-bromo to treat CH. I know t
  24. I'm sure we all wish you the best, and appreciate that someone with your drive might be taking on the challenge. Bob W is the right guy to be talking to about the background and realistic prospects. Thank you.
  25. Jack, As Denny says, a lot of us got our hopes way up for the availability of BOL through the company called Entheogen, which we were told year after year was on the verge of success, until it collapsed. I won't do that again, but will wish you well if you want to give it a shot. You expressions -- "quick, safe, reliable, affordable," etc. -- seem vastly optimistic to me, but maybe a smart, young, innovative, entrepreneurial fellow like yourself can make it happen.
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