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CHfather

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Everything posted by CHfather

  1. 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.
  2. 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?
  3. 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).
  4. 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.
  5. 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.
  6. 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.
  7. 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.)
  8. 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.
  9. 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.
  10. 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/
  11. 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.
  12. 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
  13. 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/
  14. 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/
  15. CHfather

    Nausea with D3 Regimen & Cofactors

    Ilya, did you try the email address that I sent you by PM?
  16. 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/
  17. CHfather

    New - Looking for Support

    You can't get O2 from amazon. That's seems true. So sorry. Although at least you didn't get triptan pills. The spray will probably help you. (Others will answer your questions about that.) So tell him you got some oxygen from Amazon and it worked great and now you'd like that prescription. Here is more or less what the prescription should say, since it's a good bet he has no idea how to write it: "Oxygen therapy for cluster headache: 15 liters per minute for 15 minutes with non-rebreather mask." Have you looked at the suggestions here for getting by without O2. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  18. CHfather

    Nausea with D3 Regimen & Cofactors

    I realize that I might have misread/misanswered your initial question from a few posts ago. The answer from me that you quoted above was related to CH, not HC. I'm sorry if I unintentionally gave you wrong information because I misunderstood the question. Regarding the two questions above . . . . Question 1. No. That would be a question for Batch, who has been studying the D3 regimen across a range of patients, and may have seen some HC cases. People who come here and turn out to have HC don't generally stay. If you put "hemicrania" in the search bar at the top of the page, you'll see what's been said about it. Regarding alternatives, what we have observed -- which might or might not make it reliable -- is that people with HC might get temporary relief from busting, but it doesn't last. Beyond that, if you read around on the web you'll see a lot of alternatives mentioned, in part because Indo is indeed hard for some/many to tolerate. There's this, for example: "If people cannot take indomethacin, there are case reports of gabapentin, melatonin, topiramate, verapamil, onabotulinumtoxinA and occipital nerve stimulation for treatment of hemicrania continua." https://americanmigrainefoundation.org/resource-library/understanding-migrainehemicrania-continua/ Question 2. Again, really a question for Batch. I'm not familiar with the data you're referring to. It's my strong impression that people who take the 1okIU/day gradually raise their D level significantly. There is ultimately some concern about taking too much D3 (particularly if it is taken without all the cofactors), and maybe that is a reason for taking "only" 10kIU/day after the loading period, but I really don't know.
  19. CHfather

    Question regarding flying during a cycle...

    I would be sure that I had arranged for oxygen on the other end. I would consider how effective certain strategies are for aborting in my particular case. Energy shots, triptans, a SPUT . … . (You can look up SPUT -- or anything else -- by using the search bar at the top right of the page.)
  20. https://clusterbusters.org/forums/topic/4568-triggers/
  21. CHfather

    Nausea with D3 Regimen & Cofactors

    We have had enough anecdotal information here for many years now to be confident that it helps most, and is a game-changer for many. You can trust me that when it was first suggested here that a D3 regimen was helping people, there was a vast amount of skepticism. Batch has carefully tracked it for many years, and his data drawn from hundreds of users (which I think are presented at the external link I provided) are very persuasive.
  22. Seth, click on the blue banner for "new users" at the top of the page for basic information about busting. Then ask questions (at one of the "restricted" sections here -- "share your busting stories" or "theory and implementation"). Suggest you read this file for an overview of things you can do/should be doing: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Sometimes they go away, or you might have a long remission, but -- sorry to say -- your doctor was mostly wrong.
  23. CHfather

    Nausea with D3 Regimen & Cofactors

    Well, constant lower-level pain with occasional increases in pain is often associated with a CH "lookalike" condition called hemicrania continua. You might look into that. https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page You might also be having CH with "shadows." There is some information in this file about treating shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As for the D3 regimen, how long it takes to have a strong effect varies greatly (surprise, surprise). 10 days is rarely enough. It depends on where your D level was when you started, how much you load, and what D level you personally need to hold off CH. A minor terminology issue. What you said about "busting the cycle" was completely fine and completely understandable, but the term "busters" in the name of this website refers to the process of treating CH with psychedelics, so we usually reserve the word "busting" for referring to that specific process, which you can read more about at the file I linked you to above and also (same content) in the blue banner for "new users" at the top of the page.
  24. CHfather

    Nausea with D3 Regimen & Cofactors

    Yes, from here. And he responded by PM to me here. I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts. (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin. A very old-time TV reference.)
  25. CHfather

    New poster - please help

    From my casual reading about Indomethacin and HC, it seems like there's not a reliable dosing protocol. I think that's in part because it's advisable to start out relatively low because of the gastrointestinal side effects, but higher doses might be needed to treat it. I know we've all read/heard that one should know in a few days or less whether Indo is working, but I have read elsewhere that it can take a couple of weeks. By that time, if something seems to be working, it might not be apparent whether it's the Indo or some CH-related treatment (D3, verap, busting...). Normally, of course, we don't care as long as something is helping, but Indo is hard to sustain for many people, so you wouldn't want to be taking it if it's not the thing that is helping.
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