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Everything posted by CHfather

  1. The "basic non-busting info" file has updated info about where to see the D3 file. But the blue "New Users ..." banner that you referred to has only basic busting info. No D3 info; no "non-busting info."
  2. The link to the D3 regimen is here: https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people. You won't find it at the blue"New Users..." banner, but you should read the info at that banner in any event. Batch will reply to you, I'm sure, but (a) no matter how much sun you get, your D level is almost certainly low -- if not low by medical standards (which it probably is), surely low by the standard of what is needed to combat CH. I'd urge you to take the 10,000IU. You'll probably be taking more than that soon. You have to take
  3. Because this subject appears in another post from today, I took the liberty of pasting the post above onto that thread, so that everything is in the same place. The longer thread is here: https://clusterbusters.org/forums/topic/5829-does-nasal-spray-work-for-you/
  4. I have taken the liberty of pasting Matt's original, longer post here. Quite a coincidence that two people show up on the same day with this idea that is new to me (but maybe not to people who have been around longer than I have been), but I'm anxious to see where it goes. >>>>>BEFORE YOU READ I AM NOT A MEDICAL PROFESSIONAL PLEASE SPEAK WITH YOUR GP BEFORE TRYING ANY TREATMENT OR MEDICATION!!! Hi everyone I have had cluster headaches for more than a decade. And for all of this time I have been searching for new drugs to abort my cluster headaches. The drug has
  5. I'm kinda ignorant about the variables on the financial side here. When we had medical O2 (before switching to welding), we paid a flat monthly fee. Is your cost $78/month, or $78 for each full tank? Or was there a higher charge for the tank initially and the $78 is for refills (replacement)? You got only the tank and bought your own regulator and mask? Do you get the same service as a customer gets who goes through insurance--prompt deliveries on request? Thank you!`
  6. If they just look in whatever resource they use for prescribing, they will see that oxygen is listed as the #1 abortive (along with injectable sumatriptan). So either they don't care enough to look, or if they do look, their squeamishness is probably the result of not having CH patients and therefore either (a) not knowing how to prescribe it, and/or (b) never having had a patient who used high-flow O2 and not having any idea about how it is used, what could go wrong, etc. That is, either they don't really care or they are protecting their own ignorance at your expense. Maybe there are other
  7. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  8. You understand of course that I'm not a doctor, so this is just my two cents. It does make the heart race. What I've read is pretty consistent with this quote: "If hyperventilation persists for a long enough period of time, the affected person can develop a temporary tetany, secondary to the changes in calcium. This state is manifested first by tingling in the fingers and lips and then by contractions of the hands and wrists. Finally, a wobbly feeling may appear. This complicated phenomenon is scary, but is reversible and not dangerous." (https://www.psychologytoday.com/us/blog/fighting-fear/
  9. Review of what the others said and some additional thoughts here. Hyperventilating is actually good when you're trying to do it. In general, you will get good results if you exhale deeply before your first inhale of O2 (having drank down an energy shot or some caffeine before you begin), then inhale as deep as you can, hold it for a few beats, and then fully exhale, forcefully, with a "crunch" if you can to get as much as possible out of your lungs. You can stay on it as long as you need to, plus 5-10 minutes after the attack has been aborted to hold off future attacks). You'll get the
  10. As I understand it, Ubrelvy is being marketed as a migraine abortive. I might have missed it, but I haven't seen anything about Ubrelvy for CH. It seems to slow-acting to me (it's a pill). The others are preventives. They all address calcitonin gene-related peptides (CGRP), but in different ways. As I understand it, for example, the abortives are going to be small-molecule concoctions, whereas the preventives are large molecules. Also, they are administered in different ways. Most are injected, but Ubrelvy is a tablet. This article covers the bases: https://www.practicalpainmanagement.
  11. Thank you very much for this thorough update, Siegfried!! And I am so happy that the Indo seems to have helped you!!!
  12. I'm sorry I don't have more to offer you. It sounds like you have been sensible about what you have chosen, given all the factors you have described. I'm going to quibble with you about two things, if only for future reference in case the dike springs a leak. If you do the D3 regimen while everything else you're doing to treat your CH is the same, and you feel that your situation has improved, you can at least tentatively attribute the improvement to the D3, and begin seeing what happens if you reduce some of the other meds. It's not the best situation to be in to play with something that i
  13. Splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Bunch of things you might want to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ oxygen oxygen oxygen oxygen. Can't stress that enough.
  14. As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true. Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about. Psilo will be an official "med" within a few years, you can bet on it. The D3 regimen, which is supplements but not "meds," has helped people who are
  15. I'm sorry the Indomethacin didn't work for you. Regarding SIBO, all I can say is yikes, and if that also happened to you, I'm sorry to hear that, too. https://www.ncbi.nlm.nih.gov/pubmed/28770351
  16. Well, I don't know what your high standards would call for regarding melatonin, but here's report of a randomized placebo-controlled study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012937/: "In a randomized placebo-controlled trial consisting predominantly of episodic cluster headache patients (18/20 with episodic, 2/20 with chronic), melatonin 10 mg orally, when introduced early in a cluster period, i.e. 2nd to 10th day, was superior to placebo at decreasing cluster attack frequency." Some other references in there as well. No adverse side effects reported. Worth trying? Up to you.
  17. Yes, although there can be an initial loading period when the D3 amounts are much higher. The other assorted vitamins/minerals are important. You are correct. No formal control group, placebo, etc. The anecdotal evidence from more than a hundred users is, however, extremely compelling, and what research there is is very nicely done. Maybe this file might be worth reading in that regard (or maybe not). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  18. CHfather


    When the great tommyd created the first Clusterbuster Files entries back in 2010, he wrote that there was an "ongoing debate" about whether the taurine has an effect, or whether it's just the caffeine that is impacting the attacks (or shadows). I don't think that debate has been resolved, since some people get good results from caffeine alone, and I'm pretty sure that the V-8 energy drinks that some people prefer don't have taurine in them. Some people even think it's the niacin in those drinks that helps, more than the taurine. So if by "just a taurine supplement" you mean taurine alone, wi
  19. Scott -- Sorry that's happening and really unable to answer you main question. I did want to mention that when oxygen level in a tank gets lower, it can become ineffective unless you increase the flow rate (or change to a new tank). Just thinking that might be a reason why your O2 isn't helping you right now. Hope it might help.
  20. B'T', I will recommend that you look this over. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It has some links (such as to the D3 regimen) and some ideas about things you can do (such as energy shots and Benadryl) while you're acquiring what you need -- oxygen being, indeed, as kat' said. foremost among those things. The basic info about busting is also there (same as what you would see under the blue "New Users ..." banner at the top of each page). The new medication, Emgality, has helped some people, so when you get a doctor appointment, you might ask t
  21. M-60 takes a 540 regulator. It's a fairly big tank, weighing more than 20 pounds empty (an E weighs about 7 pounds empty).
  22. Short answer to your question is probably not, since it's pretty much a myth that turkey is full of tryptophan. There's just as much in chicken or beef, and more in nuts and cheeses. However, tryptophan is much studied in relationship to CH, in part because tryptophan levels are higher than normal with people who have CH. You can find lots of studies by googling [tryptophan cluster headache]. Here's a recent one: https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-016-0620-2 Most of them are way too complex for me. For some reason (I think because tryptophan
  23. nate, No time like the present to get things lined up and in gear. D3 regimen, oxygen, etc. Busting (see blue "New Users" banner).
  24. CHfather


    ddove, of course, as FT says, you'd be a lot better off with oxygen as an abortive, but at least please consider splitting your sumatriptan injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/
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