CHfather

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?

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/

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/

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."

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.

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.

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==

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.

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.)

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.

clovis', You are now getting four aborts from each of those small tanks?

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.

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/

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.

Living with CH - 8.5x11 - 9-8-14.pdf

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.

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 who assert that having a bag of combustible O2 around is not a safe practice.

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, but if 6mg is so inadequate, maybe you don't want to. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ A few thoughts: Have you looked into the D3 regimen that has helped hundreds of people? http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Is your O2 system optimized (flow rate of at least 25lpm; high quality mask)? While Ajovy doesn't work for CH, Emgality might. Have you tried getting that prescribed? Were you doing MM without the recommended five prior days off of triptans? (Could be that your dose is so low that it doesn't matter as much, but the full 5-day detox is recommended.) You might give an energy shot like 5-Hour Energy a try instead of the RedBull. The shots actually have considerably more caffeine and taurine (considered to be the effective agents) than the full-size can of RedBull, and they're easier to get down faster. Of course, considering what you have said, my big question is whether you actually have CH, or whether you have been misdiagnosed. Have you taken indomethacin? If so (and if you remember), at what dosage and for how long?

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 at least 15lpm and mask . . . Would they deliver at the frequency you'll probably need . . . Some people have found that suppliers won't provide O2 even with a prescription if you don't have insurance . . . . I hope it might all work out for you. I think many people would say that a better bet over the long run is to get welding tanks.

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/

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?

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 have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else. It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through. For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack. I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them. I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there.

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 regulating the hypothalamus. Since you mention looking into indomethacin in case you have another kind of TAC (very good idea, in my opinion), I'll just also mention that because melatonin has a very similar structure to indomethacin and fewer side effects (for most people), it has been tried as an alternative treatment for hemicrania continua. There was some success there, in doses as low as 3 mg, but overall many people with HC didn't respond to it. Just sayin' you might want to give a lower dose a try (depending on where you started), but I can see why you wouldn't want to. (In addition to all this, there's the question of the type of melatonin you're using. In straight pill form, it has very low bioavailability, so even higher doses have less impact than when it's taken under the tongue, or in chewable form, or as a spray.)

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 the link here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ D3 regimen is an essential part of what he needs to do. There's a link within the first link I gave you above. A competent doctor might give him a prescription for steroids, which might at least give him some pain-free time. Verapamil is another preventive that helps some people. (All covered in that first linked post.)

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?