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CHfather

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Everything posted by CHfather

  1. 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/
  2. 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.
  3. 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.)
  4. https://clusterbusters.org/forums/topic/4568-triggers/
  5. 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.
  6. 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.
  7. 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.
  8. 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.)
  9. 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.
  10. CHfather

    Nausea with D3 Regimen & Cofactors

    Actually, my PM got to him!
  11. CHfather

    New poster - please help

    Sounds like hemicrania continua to me. https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page
  12. CHfather

    Nausea with D3 Regimen & Cofactors

    Hmmm. I also just sent him a message, but didn't receive that error message. I'll PM you his email address. I hope you will reach him -- and I hope he's okay.
  13. CHfather

    Nausea with D3 Regimen & Cofactors

    Send him a PM. Click on the envelope icon at the top right of any page, and type Batch into the To line. If he doesn't respond here, he will surely get back to you. The pinned post is outdated, and now even the link to more recent information is out of date. This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  14. There's a lot of crazy, lazy doctoring in here, and plenty of excellent comments and advice from your CB friends. As others have said (and I said at a different post of yours from today), sumatriptan pills are useless. Indomethacin, just to repeat, is used to treat the CH "lookalike," hemicrania (continua/paroxysmal). For all practical purposes, your doctor doesn't know which you have, CH or a hemicrania, so it's not theoretically unwise to prescribe indomethacin, which is a strong nonsteroidal anti-inflammatory. Beyond the advice that kat' got, it should be taken with something that protects the stomach lining, typically a proton pump inhibitor such as Prevacid or Prilosec. I haven't heard of headache as a common side effect of Indo, but it's a potent medicine so it's entirely possible that it afflicted kat' in that way. Have only read of a few people who didn't find it hard to tolerate for the gut issues. 100mg/day of Indo is a pretty big initial dose, particularly in 50mg increments. https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf I can't say what I would do if I were in your situation, but I'm pretty sure I'd hold off on the Indo since you have that neuro appointment tomorrow.. If you get O2 fairly quickly, maybe you want to see how that helps, but I'd imagine Monday might be the soonest you'll get it if the neuro prescribes it. Pray that the neuro knows what s/he is doing and gives a s**t, and ask for at least a triptan nasal spray in addition to the O2. If you get injections, you can split them from the 6mg injector to 2 or 3 mg doses (just ask and we'll tell you how). That's a lot less toxic and a lot less likely to cause significant rebounds. Maybe you can get a prednisone taper (I don't fully remember your current status) to possibly hold off the pain for at least a few days until you get the O2. Have you read the suggestions in here for dealing with CH without the proper pharma prescriptions? https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Caffeine/energy shots usually help. Ice water to the palate sometimes helps. In one study, inhaling cold air from an air conditioning vent (home or car) was as effective as using a rudimentary O2 system.
  15. CHfather

    Cluster location in your head?

    I'm gathering (as Trent suggested) that you might have triptan pills. Those really don't help, unless maybe your attacks are predictable enough that you can take the pills an hour or so before your attack. Nasal spray might work, injections are pretty invariably effective. Side effects vary. As Trent is also indicating, oxygen is what you want.
  16. Some more info about melatonin (more than I knew, anyway), and more thinking about understanding the brain processes involved in CH. Current understanding of pineal gland structure and function in headache; Peres M, Valença M, Amaral F, Cipolla-Neto J; Cephalalgia 333102419868187 (Aug 2019) PURPOSE The pineal gland plays an important role in biological rhythms, circadian and circannual variations, which are key aspects in several headache disorders. OVERVIEW Melatonin, the main pineal secreting hormone, has been extensively studied in primary and secondary headache disorders. Altered melatonin secretion occurs in many headache syndromes. Experimental data show pineal gland and melatonin both interfere in headache animal models, decreasing trigeminal activation. Melatonin has been shown to regulate CGRP and control its release. DISCUSSION Melatonin has been used successfully as a treatment for migraine, cluster headaches and other headaches. There is a rationale for including the pineal gland as a relevant brain structure in the mechanisms of headache pathophysiology, and melatonin as a treatment option in primary headache. https://clusterbusters.org/forums/forum/13-research-scientific-news/?do=add
  17. CHfather

    Risk / Dangers of Oxygen?

    It's not uncommon that a PA is more helpful than the doc. This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035 It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better. All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1). A commonly used app is UpToDate. You can ask the PA to look up CH. An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask." There are abbreviations in there when it's formally written, but that's the content. You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too). So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania. You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them. As BOF says, oxygen is generally not effective against hemicranias. There is, however, a pharma drug, Indomethacin, that is effective. Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment. (Indo is very hard on the gut, for most people.)
  18. CHfather

    New sufferer with questions about O2

    Exi', you might find some of this helpful: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  19. CHfather

    Open letter to major chemical companies (BOL-148)

    Thank you again, Jack, for following up. Your diligence is much appreciated. I know nothing about patents. As I've said, I have thought that some part of Harvard holds the BOL patent. Wouldn't Dr. Halpern or someone else associated with Entheogen know the answer to this? I see that there's a 2017 patent application for a method of creating 2-Bromo-LSD that doesn't involve using LSD to make the 2-Bromo. http://appft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PG01&p=1&u=/netahtml/PTO/srchnum.html&r=1&f=G&l=50&s1=20180354940.PGNR.&OS=DN/20180354940&RS=DN/20180354940 But I have no idea whether the molecule itself is patented, or whether making it in this way circumvents the patent.
  20. CHfather

    Thank you

    Cycles seem to end differently for everyone. For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering. Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event). I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH. Wonderful that you have such a capable and caring neuro!
  21. CHfather

    Thank you

    Newbie13, from your reading you probably understand that the #1 thing you want from your neurologist is oxygen -- and you probably also have read about what a challenge it can sometimes (or often) be to get that prescription. So you might do all you can before the appointment to make sure that will happen. To me that would mean at least printing out the major research showing the effectiveness of oxygen so you can bring it with you, maybe calling the office to ask whether this doctor prescribes O2 for CH, and getting yourself psychologically ready to advocate for O2. Maybe have someone come with you. You can get a sense of the landscape of pharma and non-pharma options from this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  22. CHfather

    New to Clusters

    The information here might help you get a sense of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  23. CHfather

    Success with different breathing techniques

    If your face is small, you might require a pediatric size mask. Or it's possible that it's the other way around, and you received pediatric masks instead of adult ones. The ClusterO2 Kit that you will be ordering can be used as a breathing tube with no mask. Preferences about mask/tube vary.
  24. CHfather

    Success with different breathing techniques

    Be sure the open holes in the front of your mask are covered when you inhale. With your thumb or with tape. Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2. I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out. The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs. Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2. You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help. As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically. Once you can tell that the O2 is taking effect, you might dial it all down a bit. Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks.
  25. CHfather

    Question about oxygen!! South Florida area!

    kat', closer to four hours, I would think. An M tank holds about 3500 liters. 3500/15 = ~230 minutes of O2. But some people do find that when the tank gets lower in O2, the abort is less effective. I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2. You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).
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