CHfather
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Posts posted by CHfather
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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 we turned to it in the early days.Â
So, at least for my own use, I decided to make my own, which I have posted down in the Clusterbuster files, at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- with frequent references and links to the ch.com one.
It won't hurt my feelings if people think the ch.com one is better and keep referring people to that one. If anyone has suggestions about how to make mine better, I would welcome them. For instance, I don't know enough about the "power user" strategy (where to get a 45 lpm regulator, for example, and all that retrofitting with garbage bags and all). And I would love it if someone knew where a person could order a "mouthpiece" or "breathing tube," which I have been unable to discover.
And it could be that mine just gets in the way, in which case I will gladly take it down and just use it as something I can post in individual threads, or cut and paste as needed.
Thanks, friends.
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What about this regulator? Up to 40 LPM...
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-Categories, and I think in a previous message I gave you another website that sells them (for quite a bit more, I think).
Just be sure, as I have said, that you are getting the right kind for your tank(s).
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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 prescription met (in their view) by the regulator in the concentrator? If you have a separate regulator, does it go up to 15 lpm (the knob on the end)? If you have a regulator and a mask, then you should be set to get tanks and be set up. But of course if you don't have a proper regulator, you'll need to be sure that gets brought to you, too. Since this whole thing has been a very, very unfunny comedy of errors, when they bring you the right stuff, please have them set it up for you and show you how to use it.Â
Here's another thing I'm worried about. There are two kinds of valves on tanks, and therefore two different kinds of regulators. So, even though (if) you have a regulator, it might not work with the tanks they bring. You should insist that they bring a regulator that will work with the tank(s), or at the very least that they guarantee you that the one you have will work with the tank(s).
My daughter went through all the same crazy crap you're going through, and it was very hard on her (and me). But when she finally got the right stuff and we got it set up right (no thanks to the supplier), it was like a miracle. So hang in there, John, hang in there. And again, my apologies for not "being there" for you as I should have been.
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And it ended with her telling me that she doubted my insurance would cover it.
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, trying to piece this all together, maybe the insurance issue is one reason why the idiot didn't prescribe O2? If so, have you called your insurance company to check? It's definitely my impression that many, if not most, insurance companies do cover O2. It's the front-line, medically-proven technique for aborting CH HAs. If you found that your insurance company did cover it, is there any chance that if you called back the idiot, told her how terribly the current meds are working, asked again for O2 and told her that your insurance company will cover it, that she'd let you have it?
I'm asking this because things can happen quicker with a prescription for O2, and a 15-lpm regulator and a non-rebreather mask, than if you're putting it together by purchasing all the parts. But whatever way you go, do not waste time. As so many others have said, O2 will change your life, or even save it.
If you go with welding O2, I -- and many others here -- can give you advice about the mask and regulator, if you don't feel you're getting clear enough information here: http://www.clusterheadaches.com/O2/index.html
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First of all, to quote the two previous posters: WTF???? That's just disgraceful. Can you do welding O2 somehow?
Ordered 200 RC seeds from iamshaman.com, and licorice root tincture/vit d3 from hannasherbs.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 interesting to me and not entirely clear, because it suggests that the licorice root would act almost instantly and you'd know that quickly whether you wanted to keep taking it, whereas RC takes multiple doses and often results in severe post-dose hits.) Maybe that's what you intend--having two options; or maybe using RC to bust and licorice to abort--but I thought I'd mention this. On the other hand, it seems that at least one person (dblu) had good success combining RC and licorice root (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1296960364/0#0)
Or maybe, since I only know what I read and am only trying to alert you to what might be a potential "misuse," you might post a question to Les at his thread if you're uncertain: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254/150
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Dr appt Monday @ 4 to ask for o2 and referral.
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 American Medical Association http://jama.ama-assn.org/content/302/22/2451.full
“Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE
Other advice available upon request.
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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.
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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 with no tapering--she just quit one day and started taking St. John's Wort instead--so we decided to attribute her symptoms to SSRI Discontinuation Syndrome and to the sensitivity to light that is a side effect of St. John's Wort. The symptoms have not returned since her cycle ended, so we don't know if they were related to her CH or not, but I'd say the timing of starting when her cycle began and ending when her cycle ended suggests that they were.
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I just checked and it looks like we're 1 away from having 1000 members. Shouldn't that be cause for some kinda celebration or recognition or sumptin'?
Thousandth person gets a date with Lisa Kudrow or another TV star, Hipshot. Of course, we know which one you would choose.
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Fascinating, Bejeeber -- great job. Sure looks like the higher lpm has a big payoff in speed of knocking out the HAs.Â
Too bad you had to go and ruin it all with your reference to "hotrodders"
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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.
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Clusterbusters?
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.
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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 been to ch.com once or twice. Is there some organization that has any kind of act together in terms of research and advocacy??????
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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.
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So is Ms. Kudrow potentially the CH spokesperson we've been looking for???
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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!
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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.
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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-rebreather mask. Because there are two different kinds of regulators, you'll need to know what kind your tank requires before ordering it. You can generally find regulators at eBay. We got ours here: http://www.tinashomecare.com/oxygen_therapy_oxygen_regulators.htm?gclid=CMP24tObqacCFRVx5Qod_wypDw. In my experience, the eBay shipping took about 5 days, which is a long time to wait. If you're anxious and willing/able to pay more, the folks at that link I gave you will overnight it.
The Optimask is the preferred mask. You can order it at http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas. I don't know how fast they'll ship.
While you're waiting for all that, a few suggestions (which I should say I've only read about): Have you tried chugging RedBull to abort? Here's a testimonial about red pepper: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297394064/0#0 . Some people suggest going to a fire station and asking for oxygen treatment, since EMTs there can administer it. Some suggest inhaling very cold air forcefully through your nose (I've read about some who do that through their car's air conditioning vents if they don't live in cold climates). Intense physical exercise helps some people abort or reduce the severity of an attack.
I think many people would advise that you might want to continue any meds that work for you if your attacks are severe, nothing else helps, and you don't yet have your oxygen set up, and then you can detox once you have the oxygen. But that's a judgment call for you.
You might look at licorice root as a "busting" option, but again that's your call, eventually: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
I'd like to return to the subject of your heartless idiot doctor with some suggestions, but that also seems like a subject for another time.
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Ron just said it all
He sure did. Beautifully.
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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 I'm not talking about CH).
This may be completely trivial and unresponsive to anyone's situation here, but I also have restless leg, and I do find that dedicated stretching, particularly of hamstrings, gives me a lot of relief. I never go to bed without a good half-hour of leg stretches, and I try to do them every morning, too.
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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
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Mostly I want to pay it forward and enlighten the ignorant.
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 or LSD. So I donÂ’t feel very worried about that general issue, even though I agree (a) why take the risk and (
you going to your mailbox doesnÂ’t sound like must-see tv. I guess it also seems to me that even if they donÂ’t show you checking your mail, if they just say that some CH people are fortunate enough to get gifts in the mail when they need them, it will likely have the same effect on USPS policies as actually showing it—whatever that effect may be, which I would predict to be close to zero unless some radio or tv nutjob (donÂ’t make me name names) decides to make a few more million dollars by persecuting someone else.But how are they gonna do all this so you are protected? I mean, being on camera taking illegal drugs (or admitting to taking them) does not seem wise. I was figuring they were going to blur out your face—but how would they show you having a CH attack if they did that?Â
Just from a curiosity standpoint, I wonder how effective that having-an-attack scene would be, anyway. Won’t people who are watching, who don’t know what it’s like, just figure you’re exaggerating it for the cameras? Why wouldn’t they have some “hidden-camera” footage of someone else, like what’s already on yotube—seems more convincing. But like I say, I’m not the expert. My concern is for you. And like I also said, I trust that some rational person involved in the production is helping you look out for your interests.
I also presume that they will be talking about the ineffectiveness/downright backfiring effects of typical CH "medications," so that the need for the shrooms/acid/LSA is clear to viewers. Part of your story, I'm assuming.
All that said, it does seem that putting a human face (which Bonkers assures me is a more-or-less accurate description of yours) on CH could make a big, big difference for a whole lot of people, and—if the risks are properly managed—would be so very much worth it. Thanks for doing it.
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You sure come up with a lot of great stuff, shocked. Thanks.
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The Docs seem unwilling to prescribe O2 or anything else. Does anyone know how to route around the Army for second opinions, outlying civilian docs, etc etc etc? Thanks much!
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).Â
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. Probably need a written script. Co-pay has been $5 a month for me. Don't accept the standard 8 LPM regulator like I did. O2 has never worked for me because of this. You need a non rebreather mask and whatever flow rate it takes to breathe freely. I need at least 13 lpm, some on this board say they need up to 20.<<<Â You can see the whole thread at http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=print;num=1196877119Â and if you go to the main board and type "tricare" into the search bar you'll find a lot more.
Updated versions of the article about O2 mentioned in the thread that the link above leads you to can be found here: “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full
“Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE
Hope this helps.
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Posted
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 would also look over the licorice root summary, since it might be something that could help you pretty quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068