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Everything posted by CHfather

  1. It's not uncommon that a PA is more helpful than the doc. This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035 It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better. All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1). A commonly used app is UpToDate. You can ask the PA to look up CH. An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask." There are abbreviations in there when it's formally written, but that's the content. You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too). So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania. You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them. As BOF says, oxygen is generally not effective against hemicranias. There is, however, a pharma drug, Indomethacin, that is effective. Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment. (Indo is very hard on the gut, for most people.)
  2. Exi', you might find some of this helpful: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  3. Thank you again, Jack, for following up. Your diligence is much appreciated. I know nothing about patents. As I've said, I have thought that some part of Harvard holds the BOL patent. Wouldn't Dr. Halpern or someone else associated with Entheogen know the answer to this? I see that there's a 2017 patent application for a method of creating 2-Bromo-LSD that doesn't involve using LSD to make the 2-Bromo. http://appft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PG01&p=1&u=/netahtml/PTO/srchnum.html&r=1&f=G&l=50&s1=20180354940.PGNR.&OS=DN/20180354940&RS=DN/20180354940 But I have no idea whether the molecule itself is patented, or whether making it in this way circumvents the patent.
  4. Cycles seem to end differently for everyone. For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering. Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event). I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH. Wonderful that you have such a capable and caring neuro!
  5. Newbie13, from your reading you probably understand that the #1 thing you want from your neurologist is oxygen -- and you probably also have read about what a challenge it can sometimes (or often) be to get that prescription. So you might do all you can before the appointment to make sure that will happen. To me that would mean at least printing out the major research showing the effectiveness of oxygen so you can bring it with you, maybe calling the office to ask whether this doctor prescribes O2 for CH, and getting yourself psychologically ready to advocate for O2. Maybe have someone come with you. You can get a sense of the landscape of pharma and non-pharma options from this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  6. The information here might help you get a sense of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  7. If your face is small, you might require a pediatric size mask. Or it's possible that it's the other way around, and you received pediatric masks instead of adult ones. The ClusterO2 Kit that you will be ordering can be used as a breathing tube with no mask. Preferences about mask/tube vary.
  8. Be sure the open holes in the front of your mask are covered when you inhale. With your thumb or with tape. Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2. I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out. The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs. Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2. You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help. As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically. Once you can tell that the O2 is taking effect, you might dial it all down a bit. Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks.
  9. kat', closer to four hours, I would think. An M tank holds about 3500 liters. 3500/15 = ~230 minutes of O2. But some people do find that when the tank gets lower in O2, the abort is less effective. I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2. You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).
  10. Sorry if I missed something. . . . If Lincare has the prescription and you want to get O2 from a medical supplier, can't you just tell Lincare you want to self-pay? Have they said they won't accept that, even while you're waiting for insurance?
  11. You have to go to a medical oxygen supplier, which is not the same thing as a medical supply store. Type "oxygen suppliers" and the place where you live into google. Or look for Lincare, Praxair, Airgas, Linde, Apria . . . those are some common ones. It's pretty common for doctors to fax an O2 prescription directly to a supplier. Does s/he not know any? You could call neurologists, or hospitals, or assisted living places or nursing homes -- they all would have relationships with O2 suppliers. But if your doctor wrote your prescription for 5lpm, you are probably not going to get the tanks you need, because that is easily satisfied by a concentrator, which is pretty unsatisfactory for CH. The national suppliers I listed above all have "industrial gas" divisions that will sell you welding O2. Or google welding supplies and the place where you live. I think I have already linked you to these, but in case . . . . https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  12. Some of this might be helpful. It includes basic info about busting as well as other treatments. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  13. Until recently, I was under the impression that one required a prescription for a demand valve, but they sometimes could be bought on a kind of "black market" at EBay (where my daughter got hers). Someone recently posted that they had bought one from some medical supplier. Maybe there's a link in one of the two O2-related posts I reference above. As I said above, there are good things to be said about demand valves just because they're so easy to use and, in my daughter's case at least, the mask she got is very comfortably cushy (hers involves pressing a button to release the O2 rather than triggering the release just by inhaling). But overall I think it's hard to justify the cost or effectiveness over just getting a good welding regulator and the "O2ptimask," now called the "ClusterO2 Kit."
  14. No, I don't think so. It has a mask. I'm pretty sure my description in previous post is accurate. I mean, maybe it could be a tube, but the definitional thing is that you have full oxygen on demand, either whenever you inhale or when you press a button. No bag to fill.
  15. I just wrote you a giant long response about how demand valve and regular mask work. They system rejected it and deleted it, and it's late for me to start again. I'd suggest you read the part about oxygen in this and then ask any questions, but I'm sorry the other one is lost. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (There is also something about shadows in there that might help you.) The basics. A standard mask system works by filling a bag on your mask (a "reservoir bag") with O2. When you inhale, you are breathing O2 out of the bag. The speed at which the bag fills is determined by the lpm that your regulator lets out of the tank. The higher the lpm, the faster the bag fills. But not everyone needs the bag to fill superfast. All you want is that the bag is full whenever you are ready to inhale, using an effective breathing technique (something like deep inhale/hold/full exhale/repeat). The bag refills after you have breathed in the O2 and while you are holding/exhaling. For some people, 15 lpm is enough to have the bag full each time you are ready to inhale; others need more lpm to accomplish that. With a demand valve system, there is no bag, and the O2 is available when you inhale (or when you press a button). You also have to have a high-flow regulator with a special fitting, called a DISS fitting. Demand valve is a nice thing, but (a) expensive and (b) you'd have to convince me that it actually saves significant O2, since I figure that each time you inhale you are using the same amount of O2 as you would with a standard mask at a reasonable lpm. As for your other question, yes you would use more O2 at 15lpm than at 5lpm, but you can't abort an attack at 5 lpm. In any event, even if you could abort at 5lp, it's not three times as much at 15 because the abort would be much faster.
  16. 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=3ILK8Q00GFC82&keywords=cga+870+oxygen+regulator&qid=1569471449&s=gateway&sprefix=cga+870%2Caps%2C173&sr=8-3-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFFT0VSNlZVUEMzNUsmZW5jcnlwdGVkSWQ9QTAzNTQxNzczNTJPNDVGS1I3Q1A1JmVuY3J5cHRlZEFkSWQ9QTA2NDMyNzBaRzNTVjdBSjJJUlcmd2lkZ2V0TmFtZT1zcF9hdGYmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl Medical CGA 540 (looks like this--this one is NOT 25 lpm): https://www.amazon.com/Medline-Valued-Oxygen-Regulator-Connector/dp/B00BLQKI86/ref=sr_1_fkmr0_1?keywords=cga+540+medical+oxygen+regulator+25&qid=1569471751&s=gateway&sr=8-1-fkmr0 Welding CGA 540: https://www.amazon.com/Welding-Gas-Welder-Regulator-cutting/dp/B00JJGL7LW/ref=sr_1_1_sspa?keywords=cga+540+oxygen+regulator+25&qid=1569471616&s=gateway&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzMk9DN1ZWVUNCMVlQJmVuY3J5cHRlZElkPUEwMjU0NzQwMVEzMjhSR09LMjlFJmVuY3J5cHRlZEFkSWQ9QTA0ODE0MjExNDRBRUxJMUxJQUZDJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
  17. 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.
  18. 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.)
  19. 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.
  20. clovis', You are now getting four aborts from each of those small tanks?
  21. 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 starting it during a cycle might not make a major difference for that particular cycle. Busting of course would probably shorten your cycle. I'm not sure the length of a cycle some years ago would tell you much as a comparison, since cycles morph so much over time. This is puzzling to me. Do you mean actual cylinders with oxygen in them, which you use with a regulator and a mask, or are you talking about those cans with a couple of liters of oxygen in them that you just spray directly into your mouth? Or something else? I'm just curious about this.
  22. 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 everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused. She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine. (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.) To endure CH without oxygen seems crazy to me. If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen. To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me. What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  23. 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 or get you a larger tank. If your doctor is sympathetic, get him/her involved. O2 suppliers are regulated by most states, and I believe they are breaching their responsibility to you. You might not want to go there (larger tank(s)/reliable refills) because the cost might be too high.
  24. CHfather


    Living with CH - 8.5x11 - 9-8-14.pdf
  25. 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 diagnosis, although you would be the first person with CH that I've seen in ten years at this board who can (or must) do that. 15lpm is fine as long as the bag on your mask is full whenever you're ready to inhale using the most effective method. If the bag isn't full at that point, a higher lpm will lead to better aborts. When you say "D3 does nothing," I'm just making sure that you mean you have tried the full D3 regimen that I linked you to. You could have your D level checked with a standard blood panel at your next appointment. I hope you get more help, or at least sensible prescriptions, from your appointment this month.
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