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Everything posted by CHfather

  1. Andrew, Please read the post I linked you to. You can fight with your insurance company for O2 and perhaps win -- many have -- or you can get a prescription and pay out of pocket for the O2 without insurance, or you can do as many do and set up a system using welding oxygen. This study, from 10 years ago, met all the criteria for a medical test (randomized, double-blind, placebo-controlled) and showed the effectiveness of O2 for CH: https://jamanetwork.com/journals/jama/fullarticle/185035 Every medical resource about treatment of CH lists O2 as the #1 abortive, along with injected triptans. In short, your insurance company is full of shit. One way or another, YOU NEED O2. IT WILL CHANGE YOUR LIFE. If you read the previous post I linked you to, you'll see that you can split Imitrex injections (if injections are what you have) and get full relief from much smaller doses. I don't know why prednisone stops attacks while you're taking it but doesn't end cycles, but that is the common experience. If you're saying you weren't in cycle until after you took the pred, I also have no explanation for that. Often it's used as a bridge to give verapamil time to get into your system. Usually it's administered for more than the few days you mention. D3. O2. Compensatory strategies as discussed in that other post (e.g., energy shots; melatonin; Benadryl). You need to take control. Not easy to do when you're suffering, but it's what is needed.
  2. Thanks, Andrew, and welcome. Verapamil is not nearly enough, and probably not even the best preventive when compared to the D3 regimen. Please be sure to read this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It includes the info that's at the blue "Read This First Banner," along with a bunch of other stuff, some of which might be useful to you.
  3. For sure, you're doing O2 all wrong (thanks in large part to your astonishingly misinformed doctor). The idea is that you want to fill your lungs with O2 as quickly as possible , hold it in for a couple of moments, exhale as much as you can, and immediately fill them again, hold, exhale fully, repeat. In order to do that you need a flow rate that fills your the bag on your mask quickly when you start and that makes sure the bag is full as soon as you exhale, ready for you to inhale. 8 lpm won't do that for most people. So you need a different regulator, which your O2 supplier should provide (just as the O2 supplier should have provided the mask, for heaven's sake). You can buy your own regulator, but you have to be sure you're getting one that fits your tanks (different size tanks take different types of regulators). In a different post I think you said your tank was "tall and skinny." How tall? I wish I knew how to insert an image here, so I could just ask you what your regulator looks like. I would have guessed that you didn't actually have a tank, but a concentrator, a machine that makes O2 from room air, but I feel pretty sure you have mentioned a tank. There's a lot of info that might help you in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It includes a link to info about the D3 regimen. I'd urge you to read that post and get back to us.
  4. start with a big exhale, so your lungs are as receptive to your first inhale of o2 as possible.
  5. FWIW, methylprednisolone is only slightly stronger than prednisone, about a 5/4 ratio. Otherwise, it's the same thing. So depending on the dosage, you might not be taking any more corticosteroid, or the same, or less than if you were prescribed plain old prednisone. There was a time when there was some research on injections of methylprednisolone for CH, and that seemed to help, but the general conclusion was that it reduced attacks but wouldn't break a cycle in most cases. As the previous posters have said, a doctor that doesn't prescribe O2 just doesn't seem like a CH expert. I hope you're doing the D3 regimen and taking steps to get O2.
  6. nick, I don't know whether there's anyone from Scotland here. I think I vaguely remember a woman from Scotland at the Facebook page that is called "Cluster Headaches (Trigeminal Autonomic Cephalagia)." There are some people here who are active at that FB page who might be able to tell you more. I remember the name of the person I'm thinking of as something like Ainslie Course. You should also look up the website for OUCH-UK. It's my understanding that they can be very helpful, particularly for obtaining oxygen. [I see jon' just posted about that.]
  7. 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)
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. Do you know what your D level is, from a blood test?
  17. To be clear, I'm not saying you should try them, just that some people have used old (but less old) ones with success.
  18. 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
  19. 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.
  20. 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
  21. 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/
  22. No. It's a concentrator, and those are generally no good (the O2 is not pure enough), and 5 lpm is not nearly enough.
  23. 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?
  24. 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).
  25. 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.
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