Jump to content
ClusterBusters

CHfather

Advanced Members
  • Content count

    4,927
  • Joined

  • Last visited

  • Days Won

    181

Everything posted by CHfather

  1. Si, maria', es radiofrecuencia en el esfenopalatino. Siento mucho que su experiencia era tan mala. Ojala que aqui encontraras otros metodos que seran efectivos. My Spanish isn't as good as your English (and I have no idea how to put accent marks in the necessary places). I hope that you'll find treatments here that help you, and I believe that you will.
  2. About to start in China. (Like I said, it's just FYI. I'm always happy to see that anything is happening anywhere that might turn out to be helpful.) https://www.docguide.com/multicentre-prospective-randomised-controlled-blinded-endpoint-study-evaluate-efficacy-and-safety-pt?tsid=5
  3. CHfather

    strange changes to my clusters

    mark, I wish I had something valuable to add, but just a few thoughts after having read this thread: 1. Your oxygen seems to be varying it its effectiveness. A weird thing that some people have found is that when the O2 in a tank gets low, using O2 is less effective. "Low" can mean a third of a tank left, or even more than that in some cases. If you have a full tank, I'd consider switching to that one. Also, are you downing some caffeine as you get on the O2 -- for example, an "energy shot" such as Five-Hour Energy, or you could even try straight strong coffee. You mentioned going up to 15 lpm -- at that flow rate, is the bag always full when you want to inhale, or are you having to wait, or to breathe more shallowly, and therefore less effectively, than you could/should be? If so, you want to get a higher-flow regulator. 2. Same variability of effectiveness seems to be true of your Imitrex injections. I'm a little confused because you talk in one recent post about Imitrex pills. You also mention that you ran out of trex. Most people with CH can split their trex injections and still have them be effective. Given your mixed success, I can't say if this would work for you, but the info is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 3. If O2 and trex are generally not fully effective and high-dose verapamil didn't work, it's possible that you might have a CH "lookalike" condition, such as paroxysmal hemicrania. That condition responds to a medicine called indomethacin but is generally not responsive to CH treatments. There are some other headaches for which people have reported some CH-like symptoms (cervicogenic headaches, for example), and I did read once that there are some traumatic-brain-injury related headaches the look like CH but are not. 4. Batch made some suggestions that you would want to consider: the ketogenic diet; Benadryl 25mg every four hours and at bedtime; and restarting the Vitamin B 100 complex. Those all seem worth trying. Batch is also big on drinking 2.5 liters of water every day. If Batch says it, I think it's worth trying.
  4. CHfather

    Short window and mild symptoms

    Yep. Oral triptan is almost certain not to help. Some people with predictable attacks seem to find that if they take them a couple of hours before an attack they can help some. At the least, try an energy shot, such as 5-Hour Energy, at the first sign of an attack. For some, just a strong cup of coffee will do. As a former med student, you will know how to look up the standard medical treatments. Oxygen is a no-side-effect godsend. Your cycles are so short that a typical preventive probably won't help (I think). Doing D3 year-round gives you good protection. Maybe a course of steroids, which typically stops the pain while one is on it but doesn't end a cycle, could help to get you through most of your cycle. (I would personally be reluctant to mess with steroids or triptans any more than necessary, since anecdotally they seem to have bad long-term effects related to making cycles longer. Not to mention the just generally bad effects.) Some people's CH flares up during allergy seasons. Benadryl is recommended and helps some people quite a bit -- you can go up to 25mg 3/day and 50mg/bedtime, or what you can tolerate. But maybe you already did this as part of the "allergy stuff" you mention. Misdiagnosis and mistreatment are common with CH, and sinus things are a common misdiagnosis. I guess I would mention, however, that the primary CH pain is typically at the eye. There are possible effective pharma preventives expected to come out soon. Whether they will be superior to the D3 regimen, I can't say. I bring that up as preface to the hard fact that for most people CH doesn't get less bad with time, it gets worse. So action now might help you later on. This site is based on the idea of "busting" -- taking psychedelics to prevent and/or stop cycles. If you're interested in exploring that more, look at Dallas Denny's post in the ClusterBuster Files section for links to information.
  5. CHfather

    Short window and mild symptoms

    jt, How long do your attacks last? How long have you had CH? Do you use nothing at all to stop them -- no energy shot/drink or caffeine, no oxygen, no triptans? And aside from what you have listed, no other preventive(s)? Virtually everyone is a good candidate for the D3 regimen (the whole thing: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708). It seems to be good for you no matter what (don't sue me if that somehow turns out not to be true).
  6. CHfather

    Sumatripton help

    I agree that this is very important, and appreciate your making this point. My anecdotal observation suggests that particularly for people using O2 for the first time, "lower" flow rates often work out okay. I don't know about 6-12 lpm, but the major study by Goadsby et al (double-blind, placebo, etc.) used only 12 lpm. And the results of that were important and good, but "only" 78% of the participants were pain-free after 15 minutes. I might have severe confirmation bias, but I think that's a lower percentage than we see with higher flows. There's nothing in that study about speed to abort below 15 min, so we don't know whether higher flow rates are faster, but again my possibly bias-infected observations say they are. Is there some kind of cart-and-horse thing here, where higher flow rates don't just support the more effective breathing that you suggest but actually induce it? No idea, and as you say, if the bag is full when you're ready to inhale using effective breathing techniques, then you have a proper flow rate. Is this related to the general presumption (in the absence of a definitive explanation for the effectiveness of O2) that O2 works by dilating blood vessels? Or is "dilating blood vessels" just some kind of conventional wisdom that is widely stated without any foundation? Does expelling CO2 dilate blood vessels, or are you suggesting that it affects CH in another way? Why the heck can't it be figured out why O2 works? Why did Kudrow think it would work? These are just curiosities I have -- I'm not challenging you at all, just wondering.
  7. CHfather

    Oxygen Mask question

    Thanks, zgreek!
  8. CHfather

    Oxygen Mask question

    Thanks, zgreek, Was there anything special involved in setting this up? For example, it doesn't seem to come with a mask -- does a regular NRB or ClusterO2 mask fit on it??
  9. CHfather

    Oxygen Mask question

    bb', I should leave this to the experts, but I believe it will fit on any regulator that has a DISS fitting. Looking forward to being corrected if I'm wrong (see next post).
  10. CHfather

    Sumatripton help

    VocTeacher, you want to move this question to a different board here: "Share Your Busting Stories" is good.
  11. CHfather

    Oxygen Mask question

    zgreek, I can't get that link to work, even by copying it and pasting it.
  12. CHfather

    Sumatripton help

    If by "O2 machine" you mean a concentrator that makes O2 from room air, the answer is generally no, it won't work as well, for two reasons: (1) there is a some room air in what it creates, so you are not getting O2 that is as "pure" as what you get from a tank, and that seems to affect the speed of aborts, and (2) I suppose there must be concentrators that go up to 25lpm, but most of them don't, so you probably wouldn't get a best-quality abort.
  13. CHfather

    Sumatripton help

    Just something to think about regarding the M tank (large tank) regulator. . . . The one FunTimes thoughtfully linked to is a medical O2 regulator. A welding regulator will work fine with that tank, and it has the advantage of potentially going higher than 25 lpm should you be someone who will benefit from that, and it's likely to be less expensive, like this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_2_sspa?keywords=540+CGA+oxygen+regulator&qid=1554386813&s=gateway&sr=8-2-spons&psc=1 Disadvantage of the welding reg is that it does not have LPM settings as the O2 reg has, so you have to get where you want to be by feel. I don't think that's a very big deal, but it is a difference. The other thing is that not all welding regs come with the barbed fitting you can see on the one at the link I just gave. The barbed fitting is what is wanted for connecting the mask tubing. There are fixes for the absence of that fitting, but it's best to be sure you're getting one with that adapter.
  14. CHfather

    Oxygen Mask question

    I have always liked this video about assembly and use of the O2ptimask, the predecessor to the "ClusterO2 Kit" (I have no idea whether there's any substantial difference between the two, or just renaming: https://www.youtube.com/watch?v=eX76JrEvNxE&t=65s.
  15. CHfather

    New to this site. Help needed.

    Here is a link to the D3 regimen, which you should seriously consider starting right away: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Your doctor is, like so many, either stupid, lazy, or uncaring. Or all of the above. All s/he had to do was look up the standard treatments for CH and see that injectable sumatriptan and O2 are the recommended abortives. Did you get no preventive? Verapamil is usually the one given. Also, a course of steroids can sometimes stop the pain for a while as the preventives kick in. My daughter (the person in my family with CH) had a bad doctor, and she called around to walk-in clinics to ask whether they would prescribe injectable triptans (Imitrex) and O2 for CH. Found one, and got the prescriptions she needed. She did have a letter from a neurologist saying she had CH, so she didn't have to go through a diagnosis process, but triptans and oxygen aren't "drug-seeking behavior," so it might not have been that hard to have her diagnosis trusted. You could set up your own O2 system in a couple of days using welding oxygen, as a significant percentage of people with CH do. See the file in the ClusterBusters Files section called "Notes on Welding Oxygen." As Moxie has suggested, there are a lot of potentially valuable things to read in that section. Pharma things can be okay to get you through a cycle, but busting, O2, and D3 are a lot less toxic. (My daughter found, very interestingly, that she had been overusing energy shots, which seemed to be making this worse after having worked well for a long time, and got good aborts with just strong coffee.) Other possible helps for aborting. Breathe cold air from an air conditioning vent. Stand in a tub with water as hot as you can bear. Take Benadryl (3 times at 25mg during the day and 50mg at night, or whatever you can handle). Wish I could think of more.
  16. Nice post, Milelli. Thanks. I'm not saying it will or won't work; I'm saying your post is thoughtful and reasonable, and appreciated.
  17. Medicare doesn't cover O2 for people with CH. No government program does. It's an outrage. Don't know if your supplemental will pick it up. Welding O2 works. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Just one note that doesn't seem to apply to your situation but might: Some people find that when the O2 in their tank gets low, it is less effective (or even ineffective) at stopping attacks. "Low" can vary from maybe a quarter of a tank up to as much as half a tank in some cases.
  18. Completely agree with THMH's conclusions. However, rebounds have been noted in the past, particularly among people who did not have optimized O2 systems:. Kudrow (the father of oxygen therapy) said 25% of his patients had rebound attacks. https://www.ncbi.nlm.nih.gov/pubmed/21700644. So, if you're experiencing actual rebounds and staying on the O2 longer doesn't reduce or eliminate them, then you might want to look at your system: at least 25 lpm, right mask, breathing strategy.
  19. CHfather

    Advice ?

    Yes to the Benadryl, I would say. For in cycle and in allergy season, the recommended is 3 25mg doses during the day and 50mg at bedtime. That's a lot for someone trying to go to school (or pretty much anyone). I guess see what level works, if it does work. It's my understanding that it's very important for him to be taking the whole D3 regimen. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  20. jh, I feel like a very small number of people have complained about a rebound effect from O2. It is definitely not a common thing. Many people find that if they stay on the O2 for 5-10 minutes after an attack has been aborted, it seems to prevent subsequent attacks. It's kind of annoying to do that when you just want to go back to sleep, but it does help many people. I don't think that anyone believes that using O2 extends cycles, but again, there might be a few people who think that.
  21. CHfather

    Verapamil ER Discontinued by Manufacturer

    Generally, verap ER is considered to be less effective for CH than the immediate release type. I have looked for medical citations about that (I know I've seen one), but it is "common wisdom" here, often discussed. So I'd urge you to give that a try. Looking around the internet, it seems that there are online pharmacies selling verap er at increased prices because of the shortage: e.g., https://www.healthwarehouse.com/verapamil-240mg-er-capsules.html
  22. You can't get medical O2 without a prescription. But as the Boatman said to the Eggman, welding O2 is an alternative that many use, and no prescriptions are required to set up a welding-O2-based system. Info here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/. I know many people who use welding O2, and who prefer to use it for many reasons. But I would at least follow up on your doctor's offer and see where it leads, unless you are certain that in fact there are no oxygen suppliers to service you.
  23. EggMan, you need to do the whole D3 regimen. Read this: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You don't have oxygen??? You really should. The more you use triptans, the more it makes your attacks worse and is likely to extend your cycle, not to mention just being bad for you. At least, consider splitting your injections if you aren't already: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Verap and Topamax aren't great for you, either. If you do the D3 regimen right, you will probably be able to stop taking them.
  24. CHfather

    Verapamil

    Gail', Batch is very insistent that if the full D3 regimen is followed strictly, there are no calcium-related issues. I can see why you might not want to test that regimen again, but if you do, you can and should contact Batch directly for more information. (Open the "envelope" icon at the top of the page and type Batch in the "To" line.) This file discusses welding O2 in some detail: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  25. CHfather

    Memantine / Namenda??

    Has anyone taken this medication for CH? (Namenda is the brand name.) I've seen some suggestions in literature that it might help for migraine. http://journals.sagepub.com/doi/abs/10.1177/1060028014548872 My daughter can't take verapamil for her CH, so I was thinking this might help as a preventive. Thanks.
×