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CHfather

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Everything posted by CHfather

  1. This is very unlikely. Most general-practice docs don't prescribe oxygen, for unjustifiable reasons that we don't have to go into here. Maybe he'll get lucky. Ask the doctor to look up CH abortive treatments in whatever app s/he uses -- oxygen is listed #1. As spiny said, medical O2 without insurance is very expensive, and some medical oxygen suppliers won't give it to you without insurance, even with a prescription. I know it's hard to appreciate how critical O2 is to his wellbeing and state of mind, but it can't be overstated. Many, many people with CH describe it without much exaggeration as a lifesaver. A welding O2-based system can be set up for under $200. I won't push on this any more, but needed to say this.
  2. CHfather

    Getting closer to my January cycle

    Batch is of course the person to be answering this. You should probably PM him. Quoting him from an earlier document that he might have updated since then: "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 have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL." So it seems like by now you are probably above the average but likely still considerably below the maximum. I realize that your actual question is probably whether it's okay to go back to a higher dosage, not whether a higher dosage might be helpful or needed. Stupid me, I was probably answering the wrong question, but maybe that info will be slightly helpful for thinking about where you (probably) are. Whether it's safe or wise to do more now, I guess I can't answer, but Batch can and will, for sure for sure.
  3. Karen, he needs to get oxygen. Without insurance, that probably means welding oxygen. (He could get a prescription for medical O2 if he sees a doctor and then try to pay for it out of pocket.) Here's info about the welding route: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ O2 is really the highest priority, and he/you should move heaven and earth to make it happen. A welding-based system can be created in a matter of a few days. If espresso helps, an energy shot such as 5-Hour Energy will be even better. Much more caffeine in it, and some other ingredients that are believed to also help. The D3 regimen won't solve his problem right now, but he should start it right now. The whole thing. If the sumatriptan was in pill form, then no, it's not gonna help. Injectable sumatriptan, or the triptan nasal spray will usually stop attacks. He should consider ordering some rivea corymbose seeds for busting. Legal to buy and possess. This file includes basic information about busting (the reason this site exists) and a whole bunch of other non-busting stuff. Throwing things at it like he's doing now is not a sound approach -- particularly considering the things that are being thrown. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Bless you for being there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am a supporter myself, so I have this advice -- Don't let him talk you out of doing whatever you are willing to do to change this situation. Sometimes people with CH won't accept help in the way they should. Lots of understandable reasons why that sometimes happens, not really worth discussing here. You have to persist. I'm not talking about during an attack -- you have to listen to what he wants then, agonizing though it is. But in terms of getting what he needs, whether that's O2 or vitamins or even seeds, you don't need to have permission. In my opinion.
  4. CHfather

    Getting closer to my January cycle

    Do you know what your D level is, from a blood test?
  5. CHfather

    More than 12 mg Imitrex in 24 hours

    To be clear, I'm not saying you should try them, just that some people have used old (but less old) ones with success.
  6. CHfather

    recommended doctor list

    Maybe you're looking in the wrong place? https://clusterbusters.org/wp-content/uploads/2014/10/OUCH-DOCS-US-07-22-14-PA-TN.pdf
  7. CHfather

    More than 12 mg Imitrex in 24 hours

    People have used old Trex with success, so it might work, though !7 years is probably stretching it. Good thing is those old injectors are at lot easier to take apart for injecting smaller doses.
  8. CHfather

    Does Advil working mean it’s not CH?

    You really haven't said much in your posts here, at least as I remember them, about your symptoms. You mentioned that you have an atypical pattern during attacks, which I think you said come in waves. That and the Advil (and your now trying O2) is about all you have mentioned, at least as I remember. What medicines or treatments have you tried? Do you have these kinds of symptoms? Excruciating pain that is generally situated in, behind or around one eye, but may radiate to other areas of your face, head and neck One-sided pain Restlessness Excessive tearing Redness of your eye on the affected side Stuffy or runny nose on the affected side Forehead or facial sweating on the affected side Pale skin (pallor) or flushing on your face Swelling around your eye on the affected side Drooping eyelid on the affected side
  9. CHfather

    More than 12 mg Imitrex in 24 hours

    You can split the shots to use less. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You probably should read this, too: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  10. CHfather

    C02 machine

    No. It's a concentrator, and those are generally no good (the O2 is not pure enough), and 5 lpm is not nearly enough.
  11. CHfather

    Finding the way here

    I agree about the quality of advice and support here, thanks to you as well as a bunch of other great folks. Just sayin' that the reality seems to be that traffic here is probably going to stay about the same, and there's more action over at FB. In some ways, it's interesting that as many people get here as do. I found CB because it was mentioned in Dr. Sewell's poster from 2009 or thereabouts. Does CB do any kind of "How did you learn about us?" survey with new members?
  12. CHfather

    Finding the way here

    Interestingly, when I use DuckDuckGo, CB is at the bottom of the third page, roughly as far down as it is on Bing, slightly higher than it is on Google. Maybe it takes into account your own preferences in making recommendations, spiny. It makes perfect sense to me that standard medical sites like WebMD, Mayo Clinic, etc., are listed higher than CB at these search engines. Those are where people look for basic medical information. And Wikipedia. Google's search algorithm has more than 200 variables, but of course a big one is how many people seem to use and rely on the site. I'm sure our web experts have tried all the SEO gimmicks to try to get CB higher. Every day people show up at Facebook groups with the kinds of issues that we address here. I used to try to be helpful at one of them (started by ex-CB members), but it wasn't my cup of tea. I encouraged people there who were interested in busting to come here, but very few (if any) did. But if that's where the people are these days, and if one wants to be helpful to more people, that's probably where to go. It's a pretty nice community, really. Specific busting information is often provided there by people who are using their real names (another thing I didn't want to do).
  13. CHfather

    Oxygen usage

    There isn't really a "too long." 20 minutes is fine, and so is longer on occasions when it might be necessary. You want to be sure the attack is fully extinguished, or it will come back. The general advice here is to keep using the O2 for at least 5 minutes after the attack is fully gone. That seems to prevent the kind of recurrence you experienced.
  14. CHfather

    New to the group - some observations

    signals', you got most everything covered here by two great members. Here's a thread for the advice abut getting two or three jabs from each 6mg Imitrex autoinjector: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ I don't think there's much in here you won't know, but just in case . . . . https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ In case you decide to go the welding O2 route, we've got you covered: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Keep in mind that for busting, you can legally and reliably buy and possess a very effective agent, rivea corymbosa (RC) seeds, which cause no trip effects in most people and are as effective as the more hallucinogenic substances. It is unlawful to prepare and drink seeds.
  15. CHfather

    Demand Valve O2

    You will know better than me what you want or need, and what it takes to get it. I was just giving you my thoughts. If indeed you could handle a little more than the green bag holds, maybe DV is right for you. Or, in the interim, you could consider doing as some have done and make your own larger bag out of an unscented small kitchen garbage bag or a turkey basting bag. Out of curiosity, I did just check the website of a Canadian (Vancouver-based) medical equipment supplier. In their FAQs section, there is this: "Do I need any prescription to make a purchase? No." They do have a 0-25lpm 870 regulator, but only 0-15 540, and no demand valves that I see. I went as far as I could toward checkout to see whether they asked for a prescription (maybe the FAQs omitted this category), but didn't run into it. As you say, it's quite possible that if I had fully ordered it using a Canadian address, there would be some declaration that it can't be shipped to someone in Canada . . . Or maybe this place is more lax, and you could get your 870 here. https://www.lifesupply.ca/ Are there similar restrictions on welding regulators? In my opinion, that's what you'd want for the 540. As for the DV, I just looked at Amazon, and there are none offered there, which leads me to think that for some reason DVs are in fact regulated in the US. However, I know there was a person here who insisted that they had bought a DV system from a US supplier without a prescription, and you can surely find that info if you type ["demand valve"] into the search bar at the top right of the page. Wishing you the best. I admire your commitment to find ways to minimize your abort times.
  16. CHfather

    Gammacore

    There have been quite a few threads about GammaCore and many other mentions, and the company that makes it has had representatives at many CB conferences. You'll find quite a lot by typing gamma into the search bar. (If you type just gamma and not the full "gammacore," I think you might find the places where it was discussed as two words -- gamma core -- and not one whole word.)
  17. CHfather

    Demand Valve O2

    Never heard of anyone in US having a problem getting a regulator. No prescription needed. Mixed experiences regarding demand valves from medical suppliers -- some seem to require a prescription; others don't seem to. I don't know why. In other venues, such as EBay, there seem to be no prescriptions required. Just a couple of comments on this. Demand valve is nice, but you don't need it to accomplish those purposes. And they're expensive, particularly since you have to have the regulators (with DISS fittings) in any event. If you have a high-flow regulator (25 or above), or any kind of welding regulator, you will almost certainly have no issue with waiting for the bag to fill, unless you have unusually high lung capacity. (As you have noted, you'll need a CGA870 for the smaller medical tanks and a CGA540 for the welding tanks.) And (I still could be corrected on this) I don't think a DV saves any significant oxygen, since each time you inhale using the DV, you are inhaling roughly the same amount you would have inhaled from a full bag.
  18. CHfather

    Living with episodic CH.

    This is interesting and valuable. Thank you. But I have three words for you. Oxygen, oxygen, oxygen. It's faster than your pills are working, better for you, less guesswork involved, and no need for the other strategies you describe. And a few more thoughts: D3 regimen. Energy shots. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It's rare for "dark and quiet room" to be an option for someone experiencing a CH attack, so you are fortunate in that way.
  19. CHfather

    Does anyone else experience this?

    Lady', may I suggest that this document might give you a sense of options: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  20. CHfather

    Script for oxygen

    I should have mentioned this in my previous post. Because most O2 suppliers are dealing with COPD-type ailments, they are used to supplying very small tanks (D size or E size) for portable use. You need a way bigger tank for home -- an M tank or an H tank. You also want at least one E tank for portability (car/work). I'd be surprised if they don't also give you some kind of runaround about this. Tell them that they'll be bringing replacement tanks to your house every other day if you don't get at least one of the big tanks. More than one is strongly preferred.
  21. CHfather

    Script for oxygen

    Great reply from Pebbles'. The reason a concentrator is ineffective is that it makes O2 from room air, and it is not 100% pure O2 (there is still some room air mixed in). Plus, the regulators on most concentrators don't go up to 15 lpm (liters per minute), which is where you want to be. I'm telling you all this because it's likely that the O2 supplier has no experience providing O2 to someone with CH, and you might have to educate them a little. I imagine 95% of their business is providing low-flow O2 from concentrators to people with COPD-type ailments. For those people they typically also supply not a mask but nasal cannula. You need a mask. For relief from CH, you want the purest O2 possible. That also means that when you get your mask, you might find that there is a circle of small open holes in it. Usually, one set of holes has a gasket behind it but one is completely open. Because you do not want to inhale any room air, you should cover the open holes when you inhale. You can use tape, or your thumb. You also want to hold the mask firmly to your face so that you get a tight seal. Eventually, or right away, you should get the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  22. CHfather

    New - Looking for Support

    A substantial percentage of people with CH use welding oxygen as the basis for setting up their own O2 systems. I'd guess it's at least 15-20%. It's slightly more hassle, because you have to go buy the tanks and bring them in to have them replaced when they run out of O2, but it's probably cheaper even than insurance in the long run, and you don't waste time suffering while you hope to find someone who will write you a prescription. Give this some serious thought. You will be amazed at what a difference it makes. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  23. CHfather

    New here and super happy to be here

    Maybe if you looked at the post I linked you to you already know this, but many people with CH use welding oxygen, which you can get without a prescription, to treat their attacks. You really, really want O2, and you could have it in a few days by going the welding route. More detail here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  24. CHfather

    Nausea with D3 Regimen & Cofactors

    Ilya, did you try the email address that I sent you by PM?
  25. CHfather

    New here and super happy to be here

    This might give you a sense of the possible options: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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