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CHfather

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Everything posted by CHfather

  1. Just to be clear, Ricardo, I wasn't passing any judgment on your experience -- just expressing my gladness that I haven't experienced anything more than a little testiness in the 6 months or so that I've been lucky enough to be hanging around here.
  2. Ricardo, thank you for this perspective. With only the tiniest of exceptions, I have noticed none of the rancor here that you describe. Sure would be hard for me to stay if it were like that. Regarding your ch.com thread. I admit that I didn't read the whole thing (I have to admit that as much as I admire Batch, his gigantic font and lengthy-though-often-amazing posts kind of wear me out), but I wonder whether you've seen these commentaries by Dr. Sewell about some animal studies investigating the mechanisms of O2. There are two of them; part 1 is here: http://www.clusterattack.com/b
  3. This is GREAT news -- thanks for the heartwarming story. Nice going.
  4. that was me. hoping. sorry.  Could happen, though!Â
  5. The oxygen and the mushrooms are in two entirely different categories, met la. As I just wrote in another place here, oxygen works, it's very safe for most people, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one). Again, let me suggest that you look at this file, which will tell you why O2 is so very important, and which has some suggestions for getting your doc to prescribe it: http://www.clusterheadaches
  6. I think you're asking about general info, Rob, not just RC info. There's a lot of info in the Clusterbuster files that you can access at the bottom right side of this page, under "File Jump." I'll give you some short cuts in a moment, but since you say you've never tried oxygen, I think that's where you ought to put your efforts first. It works, it's safe, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one).Â
  7. Bob, as I read met la's posts in another thread here (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052/18#17), I thought about the many eloquent ways that CH people have described the horror of these attacks, not just the physical pain but the emotional and psychological toll. And so I'm playing producer again, with the thought that if viewers are going to see people having attacks, they might also benefit from hearing in sufferers' own eloquent words--perhaps as narration while the attacks are being shown--what it really means to deal with this.
  8. met la, you've said it all here. it's heartbreaking for me to read it. for most people, oxygen is the beginning of the way out. can you tell us what you can do, or have done, about getting oxygen?
  9. met la, so sorry you're suffering. i can tell you that there are many people here who were in the same psychological state as you some time ago who are now enjoying their lives again. it is not hopeless -- far from it. i can't answer your specific questions about whether it's just a fluctuation that you're experiencing, but i can tell you what practically everyone else here would tell you, which is that oxygen must be part of your CH arsenal. it doesn't sound like you have it now. you can read more about oxygen here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=12999017
  10. Nancy, I'm glad that was helpful, and wishing you the best. Please let us know how things turn out. If you find the D3 to be helpful, maybe you could post a quick note at this thread -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052/13#13 -- since many of us are quite interested, and not all of us go regularly to the ch.com board.
  11. Nancy, have you read the post by Batch (the O2 guru) that is #10 in this thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1298840351/10#10 I just came across it. It seems like it would be helpful to you.
  12. Nancy, I wish I had some good advice for you, and I'm hoping others will. I've read you other thread (more about that in a second), and it seems like you're getting solid knowledge there (yes, use it when he wakes up with a full-blown attack--it's not too late, but it can take longer (or two 15-minute "sessions" with about 10 minutes in between); yes, breathe as deeply as possible and exhale thoroughly . . .etc.). Like I say, I hope others here can perhaps answer your other questions. It seems like your "when" question is the most pressing one, and I just don't have the experience to answer
  13. Thanks, Jeff. I've put warnings in about not doing O2 for more than 15 minutes straight, and a caveat about the "power user" method (which I'll look into more on ch.com, trying to find a thread that might give people a better sense of the fors and the againsts). The main thing I remain perplexed about is that I've read people saying that it's wise to keep on the O2 for 5-10 minutes after a headache has been aborted, to prevent other attacks in the short run (same night/same day). But if it were to take the full 15 minutes to abort the first attack, I wonder if it's wise to do the additio
  14. Thanks, Jeff and Bejeeber. Jeff, I'll strengthen the caution about not exceeding 15 minutes at a time. I did mention that some people remove the straps from their masks so the mask will fall off if they fall asleep. Did you try that? Bejeeber, I have a caution in there about possible danger for O2 "leakage." Maybe I should link to a ch.com thread on the subject. I'll check.
  15. Thanks again, Bejeeber! I've added Flotec to the sources, and put in a link to those welding-tank photos. I agree with you about how nice it would be to be able to provide a standard prescription wording. As I mention in the file, we basically had to dictate ours to my daughter's neurologist, but I don't know what she actually wrote. If you come across yours, or if anyone reading this has one, I'd be glad to insert it. One final thing, not to drag this out forever . . . I was PMed by someone saying that it might not be wise to recommend higher flow rates, because of a concern abou
  16. Davy, the "k" is a measurement of pain level, from 0 to 10, with 0 being pain free and 10 being the worst. It's the "kip scale." You can read more about this scale by clicking here: http://www.clusterbusters.com/tracker.htm Hey -- you gotta be careful with things like licorice root--with anything that's discussed here!!! I don't think you should be taking it while you're still jabbing. Please click on this link to read about cautions and side effects: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 It also tells you how to take it, when you're ready to.
  17. What your doctor is, is a cruel idiot. If you look at the first of the references I suggested, you will see that oxygen is the first-line abortive for CH in the European standards (I gather you're in London). To quote myself (with full credit to Bejeeber) from that document: "Note also that based on this research the European Federation of Neurological Societies lists inhalation of oxygen as the abortive of choice for cluster headaches in its official guidelines. The guidelines state: "The first option for the treatment of acute attacks of cluster headache should be the inhalation of 100
  18. Davyg, you really, really want to change that. May I suggest that you read sections 1, 7, and 9 here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790/ -- and ask questions.  And maybe you want to try licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Not ruling out other options you might find here -- just saying oxygen is a must and licorice root might be a good possibility. Some newer licorice root testimonials at the end of this long thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254
  19. Thanks, Arde! Wish I understood how to include images. When I click on the image icon I get the {img} {/img} html code, but I don't seem to get access to my files so I can actually insert an image. A Firefox issue, maybe.
  20. Nah, they're still down in the C'buster Files section. But I was thinking this might be a good place to continue that discussion (as you said you might), so the file area stays more self-contained(???).
  21. Wonderful news! And please do continue--I for one am very interested. Thank you.
  22. Yes, Mystina, I made that recommendation, and emphasized it -- in part because that's what my daughter got (a "concentrator"), and what her O2 supplier kept trying to give her no matter how often I explained to them that it wouldn't work for her. I can't figure out how to paste images here, but here's a taste treat for you to look forward to (or maybe you've already tried it): http://foodbeast.com/content/2009/07/09/cotton-candy-sandwich/Â
  23. Thanks, Ron. It's working now.
  24. MS -- First question; always the first question. You did not mention oxygen: Are you using it?  If not, maybe you can scan through this file -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790/0#0 -- to learn more about it. There's a lot of detail there, but the basics are quite simple. Sorry you are suffering so. You will be okay, though, and you'll get all the help here that people can give you. This page is a good place to start: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886 It's a lot, but it's stuff you need to know. I wo
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