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Everything posted by CHfather

  1. I hope this doesn't seem too arrogant. Recent experience with John, and with many others before him, convinced me that I needed to put down my thoughts about oxygen in one place that I could refer people to. Otherwise, I just keep typing the same things over and over, and leaving things out that I should be mentioning. The "arrogant" part is that of course there's already the ch.com oxygen page, to which we all are always referring people. But, truth be told, as very good at that resource is, my daughter (who is very smart) and I (not so much) both found it really kind of daunting when
  2. John, I'm once again not sure, but I don't think that's a regulator; I think it's a regulator gauge.  The item pictured next to it at that Harbor Freight site is a regulator: http://www.harborfreight.com/catalogsearch/result?category=&q=regulator Some people have that regulator. Keith and Ron do, I think. My recollection is that it works fine but does not have any actual lpm settings, so you have to do it by feel. Many folks get them (for about the same price) at eBay: http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1311&_nkw=oxygen+regulator&_sacat=See-All-Categ
  3. John, first of all, congratulations on persevering. You are close. Second, I'm really angry at myself for not urging you to be careful about getting a concentrator (a sadly typical idiot-doctor move), and to call your supplier before they came to make sure of what you were getting. Third, I recommend that you do try the concentrator, but recognize that it probably won't work, as the others have said. It should go up to 8 lpm, and in some rare cases that is enough to help (if the noise doesn't just make things worse). But they gave you an actual regulator . . . or was the regulator pr
  4. First of all, you might have noticed in one of the articles you printed out that something like 45% of cluster headache sufferers get their own oxygen outside the medical establishment. That's mostly through welding oxygen, and I suppose largely because of idiot, uncaring so-called "doctors" like yours. So you won't be doing anything unusual if you do it that way. Be aware that you only get the tank there; the regulator and mask you get separately. (Knowing nothing, I once walked into a welding place and asked for tank, regulator, and mask -- got turned down and sent away fast!!!) But, t
  5. First of all, to quote the two previous posters: WTF???? That's just disgraceful. Can you do welding O2 somehow? One of the things Les says in that summary in the Clusterbuster files is that he's not sure about combining licorice and seeds, at least not, as I take it, with both at full dosing strength (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068, under "Busting and Licorice'). As I recall it, he suggests trying the tincture first, and if it doesn't work, going with seeds the next day since the licorice is out of your system by then. (This itself is in
  6. John, I'm recalling from another thread that you were going to go to your doctor a while back, early in the year, for an O2 prescription . . . Or was that another John?? I'm only asking because I hate to give the same boring advice more than once, which is (1) Consider having someone come with you to your appointment, because for some people at least the pain can kind of weaken their advocacy skills; and (2) Bring copies of these articles with you, showing that high-flow, non-rebreather O2 is first-line practice for O2: “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the
  7. Welcome, Handy, as the one thousandth member of this great group! Since I'm just a relative newbie myself, I shouldn't really be doing the welcoming, but I couldn't resist. I believe you have won a free date (sharing a banana split, perhaps?) with your choice of either Lisa Kudrow or our own Hipshot, but we'll probably have to get back to you on the exact details of that in a year or two.
  8. Ting, my daughter had some of those kinds of symptoms in her visual field during her last cycle--flashes of bright light, something like aura, and some spatial disorientation that was not exactly dizziness but close to it. She also was extremely sensitive to light during her attacks: We had to make the room completely dark. We've been told by her neuro that she does not have migraines (not that any of us trusts diagnoses very far, but she has no migraine symptoms outside her CH attacks). She did not become green. She had come off of an antidepressant not long before that, and had done so w
  9. Thousandth person gets a date with Lisa Kudrow or another TV star, Hipshot. Of course, we know which one you would choose.
  10. Fascinating, Bejeeber -- great job. Sure looks like the higher lpm has a big payoff in speed of knocking out the HAs. Too bad you had to go and ruin it all with your reference to "hotrodders"
  11. My daughter also gets better results with a "wand" or "tube" (I haven't been able to find the right official name for it)--like the one shown in the photo at the ch.com oxygen page (http://www.clusterheadaches.com/O2/index.html) next to the heading bubbler/moisturizer--than with a mask. But she's never tried the Optimask, which so many people swear by as a "game-changer." And I assume you're read here about "power users" with 25-45 lpm flows and big bags.
  12. I realized after I posted this, Bob, that it might seem like I was somehow dissing my much-beloved Clusterbusters, which wasn't my intention. I know, of course, about the important research Clusterbusters has funded, and your big role (personally and through things like the NatGeo programs) in spreading awareness, but I don't know anything about whether there's a larger "umbrella organization" for CH with some kind of unified approach to fundraising, research, and advocacy, as there is for so many other conditions.
  13. My problem always is . . . now what??? I'd be willing to try to participate in finding her, or imploring her . . . but what would be asked of her? (Pretty sure she wouldn't endorse busting, of course (though I guess you never know), but as spokesperson for some campaign for research or awareness or whatever . . . it does seem like an absolute natural. Also seems like maybe NatGEo could use her as some kind of spokesperson/narrator and get more attention . . . but then again, there's the "illicit" connection. I don't know anything about the rest of the CH world; for example, I've only bee
  14. Yes, it's pretty much like clockwork for my daughter -- seasonal change = CH, twice a year, like you. I had thought that was a pretty common thing.
  15. So is Ms. Kudrow potentially the CH spokesperson we've been looking for???
  16. Thanks so much for letting us know what's going on! Good luck with the verap (I'm not saying that sarcastically -- I really hope it works out for you.) One last trivial piece of advice: Be sure that the folks who deliver your oxygen set it up for you and show you how to use it. Yes, it's pretty simple, but you want to know it's set up right when you need it. Stuff happens, and this is definitely a time when you don't want it to. There's more useful advice at http://www.clusterheadaches.com/O2/index.html Best wishes!
  17. Harbor Freight: http://www.harborfreight.com/catalogsearch/result?category=&q=regulator They have regulators, but I don't think they have masks. As I recall, Keith got his regulator at a Harbor Freight, and it didn't have any lpm settings, but he (and I think Ron, too) was able to adjust it to an appropriate flow just by "feel" of what kept the bag full.
  18. shahooty, oxygen is probably your most urgent requirement right now. I know exactly what you mean about having a heard time thinking -- that beset my daughter, too, and she's a darn smart gal. With many curses hurled toward your idiot doctor who won't bother learning about oxygen, I'm going to assume that you'll get a welding tank. You need a large one, or two, and you might want a smaller one for portability. Then you'll need a regulator that allows a flow rate of at least a maximum of 15 lpm (liters per minute). Many people are now using 25 lpm and higher. And you'll need a non-rebre
  19. Some people react quite severely to cortisone (I'm one of them; my daughter is another), often with intense muscle tightness and deep joint pain; some people have lesser reactions along the same lines. Once again, I've only had one doctor who actually accepted that this could happen, even after it happened, and that includes many who administered cortisone on a nearly daily basis. Drinking a lot-- lots and lots -- of water has helped me, but I never knew if I was actually washing the cortisone out of my system (didn't care, either: in my case, the treatment was worse than the condition, but
  20. TTT, you might want to look over the "Licorice Root Summary" in the Clusterbuster files (accessed from the "Forum Jump" menu at the bottom of the page). http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
  21. Thank you! I agree with all thatÂ’s been said here that amounts to, Why take a risk? My biggest concern from what youÂ’ve said, Dan, is about risks you would be taking. (I also figure that Bob W and the producers have already thought of everything IÂ’ve thought of, and will not put you at risk, so in large part what IÂ’m saying here seems like itÂ’s likely to turn out to be unnecessary.) The post office processes almost 600 million pieces of mail every single day. I strongly doubt that itÂ’s going to start screening anything in any new or more diligent way for a few shipments of mushrooms
  22. You sure come up with a lot of great stuff, shocked. Thanks.
  23. ClusterFields, I remember a heart-rending post recently from another military guy, Stevil, who had never been prescribed oxygen. Many, many folks "route around" their civilian doctors by getting welding oxygen and then buying a mask and a regulator to create their own O2 system. If you want advice about that, just ask (or start at the ch.com "oxygen page" at the "Menu" tab on the left of this page). I did read this at the ch.com board: >>>Yes, Tricare Prime does cover O2. Find a med equipment supply company and they should be able to do the paperwork. No referral required. Pr
  24. The correct url for this is actually www.organic-herbal-remedies.co.uk
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