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Everything posted by CHfather

  1. CHfather


    The "redneck" method that I mentioned and linked to above involves filling a kitchen garbage bag with O2 and using that along with room-air hyperventilation. If your oxygen supplier is going to honor a sensibly-written prescription, which should have specified that it's for CH and that the flow rate should be at least 12 lpm and you should get a nonrebreather mask, then they ought to supply you with a larger tank. TBH, I seriously doubt that that is all they have (not doubting that they told you that), but if it is, they are required to either replace your tanks as often as necessary or get you a larger tank. If your doctor is sympathetic, get him/her involved. O2 suppliers are regulated by most states, and I believe they are breaching their responsibility to you. You might not want to go there (larger tank(s)/reliable refills) because the cost might be too high.
  2. CHfather


    Living with CH - 8.5x11 - 9-8-14.pdf
  3. CHfather

    Energy drinks

    Since I asked you all those questions and you answered them, I feel compelled to respond. First, to say I'm really sorry for all you have been through and are going through. Beyond that, I have very little to offer. I'd say that trying indomethacin seems to make sense. As you probably know, it does effectively treat hemicrania headaches that are CH "lookalikes" (but hemicranias are typically (though not always) unresponsive to oxygen). I assume you mentioned that you have to lay still during an attack because you know that is contrary to a CH diagnosis. I'm not saying it rules out that diagnosis, although you would be the first person with CH that I've seen in ten years at this board who can (or must) do that. 15lpm is fine as long as the bag on your mask is full whenever you're ready to inhale using the most effective method. If the bag isn't full at that point, a higher lpm will lead to better aborts. When you say "D3 does nothing," I'm just making sure that you mean you have tried the full D3 regimen that I linked you to. You could have your D level checked with a standard blood panel at your next appointment. I hope you get more help, or at least sensible prescriptions, from your appointment this month.
  4. CHfather


    I'm surprised you can abort at all with a flow if 8 or less. You can buy a higher-lpm regulator, but of course you'll go through the tanks faster. O2 supplier should supply reg and mask. I assume you'll call them today and see what's involved in getting bigger tanks, but with self paying, I think it is probably going to be less costly for you to go the welding route. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ You could try Batch's redneck method, which I linked you to above, which will use a lot less O2. I feel compelled to mention again that there are people who assert that having a bag of combustible O2 around is not a safe practice.
  5. CHfather

    Energy drinks

    I don't know what this means. Are you saying that you feel an attack coming, take the pill, and then you don't get an attack for 6 to 12 hours? So maybe you're thinking that the pill acts as some kind of a short-lasting preventive? I'm not asking these things to critique your clarity -- I'm just trying to figure out what's going on. Apparently O2 + Red Bull sometimes works and sometimes doesn't. And it's mysterious to me that your attacks come back two hours after a full 6mg injection of sumatriptan. It is possible to split those injections, and those who do find that 2-3mg is sufficient, but if 6mg is so inadequate, maybe you don't want to. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ A few thoughts: Have you looked into the D3 regimen that has helped hundreds of people? http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Is your O2 system optimized (flow rate of at least 25lpm; high quality mask)? While Ajovy doesn't work for CH, Emgality might. Have you tried getting that prescribed? Were you doing MM without the recommended five prior days off of triptans? (Could be that your dose is so low that it doesn't matter as much, but the full 5-day detox is recommended.) You might give an energy shot like 5-Hour Energy a try instead of the RedBull. The shots actually have considerably more caffeine and taurine (considered to be the effective agents) than the full-size can of RedBull, and they're easier to get down faster. Of course, considering what you have said, my big question is whether you actually have CH, or whether you have been misdiagnosed. Have you taken indomethacin? If so (and if you remember), at what dosage and for how long?
  6. CHfather


    This is a little confusing to me, for a lot of reasons that I guess I should mention. The principal one is a question about the size of the tanks. If they're D size tanks, you'll get about one or maybe two aborts per tank at a flow rate of 15 liters per minute. If they're E tanks, you'll get about two or maybe three aborts per tank. (You could use Batch's redneck method to get more, maybe. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ (Some people have expressed safety concerns about this method.)) So many questions . . . Does this include regulator of at least 15lpm and mask . . . Would they deliver at the frequency you'll probably need . . . Some people have found that suppliers won't provide O2 even with a prescription if you don't have insurance . . . . I hope it might all work out for you. I think many people would say that a better bet over the long run is to get welding tanks.
  7. CHfather

    Do Cluster cause Physical Damage?

    bridge, In your two posts you haven't really mentioned what you do to treat your CH. Now that your cycle seems to have ended, it might be a good time for you to take a close look at that. This post includes the "New Users" info from the blue banner at the top of each page, along with some other non-"busting" information that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  8. CHfather

    Emgality for episodic

    Thanks, Freud! I feel like there ought to be a simple pinned post in the CB Files section about proper Emgality dosage. Fingers and toes crossed here that the D regimen is doing some magic for you. Anything else to report about your appointment with McGeeney?
  9. CHfather

    Energy drinks

    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her! She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it. The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else. It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through. For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack. I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them. I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there.
  10. CHfather

    Melatonin and clusters

    Agree with F'T'--it probably isn't worth it. But a few thoughts. You don't say how much you were taking. In the studies of melatonin for CH, dosages of 5mg were sometimes effective for treatment, and the treatment effects typically only showed up after 3-5 days. So you might consider trying a lower dose, and maybe taking it an hour or two before bedtime. Melatonin levels are typically low in people with CH, particularly nighttime levels during a cycle--but it also appears that they might be generally low in people with CH, even out of cycle--and melatonin is an important thing for regulating the hypothalamus. Since you mention looking into indomethacin in case you have another kind of TAC (very good idea, in my opinion), I'll just also mention that because melatonin has a very similar structure to indomethacin and fewer side effects (for most people), it has been tried as an alternative treatment for hemicrania continua. There was some success there, in doses as low as 3 mg, but overall many people with HC didn't respond to it. Just sayin' you might want to give a lower dose a try (depending on where you started), but I can see why you wouldn't want to. (In addition to all this, there's the question of the type of melatonin you're using. In straight pill form, it has very low bioavailability, so even higher doses have less impact than when it's taken under the tongue, or in chewable form, or as a spray.)
  11. CHfather

    Energy drinks

    Terri, there's a lot of advice here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I'd strongly suggest you read it through. It could be that he's not using oxygen at optimal efficiency. Yes, an energy beverage helps a lot of people -- as Pebbles' says, a lot of people prefer the "energy shots" such as 5-Hour Energy, which are actually more powerful than the larger drinks like Red Bull and can be drunk down quickly as he starts on the O2. You could also see a link there for how to split Imitrex injections, as Pebbles' suggests. Well, I'll put the link here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ D3 regimen is an essential part of what he needs to do. There's a link within the first link I gave you above. A competent doctor might give him a prescription for steroids, which might at least give him some pain-free time. Verapamil is another preventive that helps some people. (All covered in that first linked post.)
  12. CHfather

    Females and O2

    Not a woman here, but my daughter is, and O2 works great for her (thank God). Can you give a citation or link for that article?
  13. CHfather

    Dr Egilius Spierings

    If I can say so, those were some pretty fast jumps. Plenty of info about him here. Not an unimpressive resume. No mention of surgery. Work on CGRP; a developer of Imitrex. https://medvadis.com/our-team-2/ He co-wrote some articles with the "bad" Dr. Shevel about migraine patients with "extracranial" migraines and with cervical muscle issues, and those have turned out (from what I have read) to be useful for treating a subset of migraines.
  14. CHfather

    Open letter to major chemical companies (BOL-148)

    Well, of course they were looking for major investors (which we were often told were just about to sign on), but they also did a crowdfunding thing, which a few friends of mine contributed to. It did seem futile, even at the time. You might know that people have found unscheduled substances that could be purchased "legally" and used to treat CH as psychedelics would treat it, but without the trip. Perhaps not in the class of BOL in terms of efficacy, but very effective for a whole bunch of people (with the qualification that Denny mentioned -- a miracle for some; a bust for others). 5-MEO-Dalt was the big one, but the door got shut on that when companies stopped making/selling it. Just on a personal note, your work might have intersected with that of a friend of mine, Joe Moskal (of Naurex and Aptinyx), who has invented new compounds for treating brain and nervous system disorders, including rapastinel. I played golf regularly with Joe over many, many years as the new molecule he invented for treating depression (no side effects, instant results) went through tens of million dollars in clinical trials. Eventually sold to Allergan for a whole lot of money (which allowed Joe to join a country club and no longer have to play golf with a hacker like me), that substance "failed" some final trials and has been shelved. I'm directly aware of what it takes to bring pharma drugs to market. https://www.globenewswire.com/news-release/2019/07/12/1881976/0/en/Aptinyx-Salutes-Retiring-Chief-Scientific-Officer-and-NMDA-Receptor-Drug-Discovery-Pioneer-Joseph-Moskal.html
  15. CHfather

    Open letter to major chemical companies (BOL-148)

    Denny, did you follow the Sewell vs. Halpern vs. Rick Doblin vs. bunches of other people saga that ensued when Halpern patented the application of BOL for CH? Man, that was a juicy bunch of recriminations. You almost had to pick sides, and I picked Sewell. You can still find it on the internet, but I won't link to it.
  16. CHfather

    Open letter to major chemical companies (BOL-148)

    Bob is a hero to many of us. And everyone who keeps it together while coping with CH is a hero to me, too. There's no reason for me to be chiming in here, and absolutely no need for you to respond. I had a strong psychic investment in this (my daughter has CH) back then, and a financial investment in Entheogen (in the form of donations) that was not insignificant for me. It's my understanding -- which could well be wrong in many places -- that there are two patents at issue. One is the patent for BOL-148 (2-bromo-LSD) itself, and one is the patent for using 2-bromo to treat CH. I know that John Halpern and Torsten Passie patented the latter around 2010, though I think maybe the patent holders are the institutions where they worked, Halpern at MacLean Hospital and Passie at a German hospital. I think Harvard holds the BOL-148 patent because Albert Hoffman invented it there in the 1940s (but I know the patent for plain LSD was "assigned" to Sandoz). I have attached a little booklet that ClusterBusters put together a few years back. Living with CH - 8.5x11 - 9-15-14.docx
  17. CHfather

    Open letter to major chemical companies (BOL-148)

    I'm sure we all wish you the best, and appreciate that someone with your drive might be taking on the challenge. Bob W is the right guy to be talking to about the background and realistic prospects. Thank you.
  18. CHfather

    Open letter to major chemical companies (BOL-148)

    Jack, As Denny says, a lot of us got our hopes way up for the availability of BOL through the company called Entheogen, which we were told year after year was on the verge of success, until it collapsed. I won't do that again, but will wish you well if you want to give it a shot. You expressions -- "quick, safe, reliable, affordable," etc. -- seem vastly optimistic to me, but maybe a smart, young, innovative, entrepreneurial fellow like yourself can make it happen.
  19. 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
  20. CHfather

    CH without pain?

    This is the article that I remembered having read: https://www.ncbi.nlm.nih.gov/pubmed/17367596 Aside from oxygen (which works for CH but generally doesn't for migraine), there's a lot of overlap in the treatments for both conditions: pharmaceutically, that would be verapamil as a preventive and a triptan as an abortive. Non-pharmaceutically, the D3 regimen and busting are both effective for migraine.
  21. CHfather

    Question about prednisone

    Yes, but I believe Batch still recommends (he used to recommend it) that you take the calcium supplement at least 8 hours apart from the verapamil, because verapamil is a calcium channel blocker.
  22. CHfather

    CH without pain?

    The term "cluster migraine" is sometimes thrown around by doctors with the wrong meaning, but there is apparently a very, very small segment of people who have symptoms of both at essentially the same time. (This is different from the group that has both migraines and CH, but can tell when each is occurring.) The sharp decline in cognitive ability is also often experienced by many people with CH (but I don't know if that is also true sometimes of people with migraine). As you can see, I have quickly reached the end of my potential usefulness. Maybe someone else here will have more useful insights. Is your neuro a headache specialist, perhaps at a headache center? It might take that level of expertise, not just the expertise of a general neuro, to help you sort this out.
  23. CHfather

    Finally a diagnosis and D3 update

    Nice remembering, Freud! Looking back over these threads, I see that HC has been discussed. Easy to forget key things when under the pressure of talking to a doctor. A "required" aspect of a hemicrania diagnosis is the eye or nose symptoms that are also typical of CH, which kat' doesn't have, but your suggestion is very important to follow up. Maybe it's "atypical" HC!
  24. CHfather

    Finally a diagnosis and D3 update

    Atypical means that it doesn't have all the symptoms of the "typical" cluster headaches that most people have. What that article says is that atypical CH often comes from causes such as pituitary gland issues that are not the causes of "typical" CH. There is no identifiable cause of typical CH.
  25. CHfather

    Finally a diagnosis and D3 update

    A week generally isn't enough for the D3 to be effective, or at least not fully effective. Your blood test will tell you what your D level is. It has to be pretty high for the D3 regimen to be most effective.