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Everything posted by CHfather

  1. CHfather

    Ketamine nasal spray?

    Big', welcome to the forum. You might get some direct replies to your question, but you might also get a broader sense of experiences and opinions by typing ketamine into the search bar at the top right side of any page. Are you doing the D3 regimen that has helped hundreds in big ways? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people Considered busting? (click on blue banner at the top of the page)
  2. CHfather

    4 years chronic headache/facial pain. CH and ?

    Given your descriptions, you might consider looking at hemicrania continua (HC) as a possibility, which would involve finding out whether the drug Indomethacin takes the pain away. https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page It doesn't sound like you have used the standard CH abortives, oxygen and triptans. If you did try oxygen properly and/or triptans (Imitrex; sumatriptan; etc.) in a proper form (nasal spray or injection), and they didn't work, that would strongly support an HC diagnosis. Some people with CH have pretty constant pain in the form of "shadows," but I think that's pretty rare, even in people with chronic CH. That verapamil didn't address your pain doesn't say much either, unless you took it in strong-enough doses over a long-enough period of time. Prednisone usually at least stops CH pain for a while, but not always. So that med history doesn't really tell us much, but it does again lend itself toward at least checking into HC.
  3. CHfather


    This video is good. https://www.youtube.com/watch?v=PtFHRIQN17s He's using the special mask/bag called the "ClusterO2 Kit," which can be purchased, and he has a higher-flow regulator, but the technique is clear. Some people start with quickly drinking an energy shot or some caffeine, which typically speeds aborts. Deep out. Deep in. Hold. Repeat. Stay on for 5-10 minutes after you have aborted the attack. Your mask might have one or two circles of open holes in it. There might be one set of holes that has a gasket behind it, and one that are just open. Put tape over the open holes, or cover them with your thumb as you inhale.
  4. CHfather

    Females and O2

    yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people. I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one. There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or some people get it in vials with syringes so they can measure out their own doses. Sorry if this is old news to you, but thought it was worth mentioning. Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.
  5. CHfather


    jimmy', your best bet is to type Emgality into the search bar at the top right of the page. You'll see more responses that way. I think they have been mixed: little or no success for some, good results for others. Important to keep in mind that people for whom it worked probably are no longer here or might never have been here.
  6. Thanks for this info, ITL!! Can you get spike' moving fast on this? Could he see your doc who wrote you the O2 prescription? As you know, every day without O2 is a day of needless suffering.
  7. 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.
  8. 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.
  9. 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.
  10. CHfather

    Getting closer to my January cycle

    Do you know what your D level is, from a blood test?
  11. 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.
  12. 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
  13. 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.
  14. 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
  15. 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/
  16. 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.
  17. 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?
  18. 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).
  19. 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.
  20. 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.
  21. 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.
  22. CHfather


    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.)
  23. 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.
  24. 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.
  25. 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/