CHfather

I just posted this in a message to Vickle, but just in case . . . I see that there are 9 used demand valves for sale at ebay. It looks sketchy -- sold as is, no returns. $100 plus $10 for regular shipping. Can't say if it's a worthwhile risk or not. (If you go this way, you'll need to have a DISS fitting on your regulator. See below) http://www.ebay.com/itm/Used-LIFE-SUPPORT-PRODUCTS-INC-DEMAND-VALVE-SWITCH-L063-05R-WITH-HOSE-AND-MASK/161085791809?_trksid=p2045573.m2042&_trkparms=aid%3D111000%26algo%3DREC.CURRENT%26ao%3D1%26asc%3D27%26meid%3D1468536138082648837%26pid%3D100033%26prg%3D1011%26rk%3D2%26rkt%3D3%26sd%3D300946941177%26

Vickle, here are a bunch of thoughts, all iffy, all of which would benefit from input from others. Do you have an O2ptimask -- more capacity in the bag. I see that there are 9 used demand valves for sale at ebay. It looks sketchy -- sold as is, no returns. $100 plus $10 for regular shipping. Can't say if it's a worthwhile risk or not. (If you go this way, you'll need to have a DISS fitting on your regulator. See below) http://www.ebay.com/itm/Used-LIFE-SUPPORT-PRODUCTS-INC-DEMAND-VALVE-SWITCH-L063-05R-WITH-HOSE-AND-MASK/161085791809?_trksid=p2045573.m2042&_trkparms=aid%3D111000%26algo%3DREC.CURRENT%26ao%3D1%26asc%3D27%26meid%3D1468536138082648837%26pid%3D100033%26prg%3D1011%26rk%3D2%26rkt%3D3%26sd%3D300946941177%26 I think I remember that Flotec sells a regulator that goes up to 60 lpm. You could call them: Telephone: (317) 273-6960 This I am also not positive about, but the welding oxygen regulator sold through Harbor Freight (www.harborfreight.com) has no lpm settings. It will go up pretty high in lpms, although I don't know whether that's higher than 25. Hopefully, some others who use that regulator can tell you that. (Any welding O2 regulator would probably work, but the Harbor Freight one is the only one I know of that comes with a barbed fitting adapter. I was told at the conference that you can buy the adapter separately, maybe even at a standard hardware store, but I have never tried to do that.) DISS fitting (the connection in front on this photo, in addition to the usual barbed fitting for the mask tubing)

Amen. Amen Amen and  Amen and Amen

I'm going to contradict myself here, and suggest that maybe you want to hold off on the D3 regimen for a while. You'll decide for yourself, of course, but here's my thinking. A very small number of people have felt that D3 made them worse. They were all, as best as I remember, pretty severely chronic (as you have been). Given the percentages of good results vs. bad ones, I doubt that D3 would make things worse for you. But if you start having attacks again--praying that you won't, of course--you won't know whether the D3 caused them or the effect of the seeds just wore off. It's important to know something like that. That's why I'd suggest maybe holding off on the D3 for a while.

Maybe it's also worth mentioning what was discussed here some time ago (and confirmed, I think), that nitrous oxide can work well as an abortive.

Do you have any idea how many MG seeds you took? Not many people here are using MG, and your info would help. It's hard for me to see what harm it would do you to whack it again in a few days. If you're still PF in the five days, maybe give it another dose in seven.  Speaking of vigilance and preparation, you might also want to try (if you haven't) the vitamin D3-based approach that many people credit for substantially extending their PF time. '>https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 And also in the interest of full preparedness, what's your relationship with oxygen? If it hasn't worked for you lately (or never did work), you might want to consider some system upgrades. See the oxygen page under the MENU tab on the left of the page for more information. Hoping along with you and your family and everyone here that these preparedness questions are unimportant to you for a long, long time. Â

Big, big smile here reading this. Nice going.

Folks here are all about that, Joe. You can start by reading the overview of the ClusterBusters method here -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then reading the other pertinent files in the "ClusterBuster Files" section of this board (the files that are numbered), including "Playing Well with Others" and the "Warnings."  Ask questions -- you'll get answers. Another "natural" approach (by which I'm assuming you mean non-pharmaceutical) is the vitamin D3-based regimen that has helped a whole lot of people. Read about it here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. Some people have also found good results with licorice root (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068). There's also kudzu root, which you'll have to ask about if you're particularly interested (no file that I know of). I suppose you'd have to consider oxygen "natural," too. Do you have oxygen (your doctor should have prescribed it)?  Most folks here will tell you it's the #1 abortive that anyone with CH must have. Are you drinking an energy drink or energy shot, or a strong cup of coffee, at the first sign of an attack? That can help abort an attack, or reduce its severity. There's more, but I'll leave it at that for now, and we'll look forward to hearing more from you! Â

CT, keep us informed about what happens with getting oxygen. I also think Brew was suggesting, and Purp was talking about, busting, which you seem to be in a good position to try. Clearly, you now need some other strategies -- oxygen, busting, other alternatives (D3, for example), or conventional meds. Let us know what you're doing about all that, too.

You might look at the oxygen file under the MENU tab on the left side of the page to see whether there's something you could do to make your O2 more effective. A lot of possibilities: O2ptimask, higher flow rate, different breathing strategy, energy drinks . . . All have benefited many folks. Very glad your cycle seems to be ending!!!

Welcome! In terms of technical support, look at the numbered files in the "ClusterBuster Files" section of this board--particularly #1 ("The ClusterBuster Method"), #4, and #6. Here's a link to #4: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128444 Of course, ask any questions you have -- you'll get help. But the files are a very good place to start. You'll have to be "detoxed" from the imitrex for at least five days before you bust. Many people have some success with busting while still taking verapamil. What's your current dosage? Also, be sure you are not taking any other meds that might block busting (that's all in file #6). Does oxygen not work for you? (Our general assumption here is that oxygen works for virtually anyone, and that those who think it doesn't work for them probably aren't using it right.) It's very valuable while you're "detoxing" from other meds.  And have you tried the vitamin D3 program? It has helped a whole lot of people: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

I failed to mention that a good place to start your research is in the "ClusterBuster Files" section of this board, where you want to read the numbered files by TommyD. Here's a link to the introductory one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 (Also, just to mention that where d'maker says "a bag and no holes" up above, most standard-issue non-rebreather masks have a couple of vent holes in them (each consisting of a bunch of smaller holes), usually one with a gasket in it that lets air out but not in, and often the other one being completely open. Folks with CH typically block off that "open" hole when they are inhaling, so that no room air gets in -- they're breathing all O2 from the tank. It's also important to make sure that the gasketed hole is working properly, so no room air gets in through it. The O2 mask that he mentions and links to (formerly called the O2ptimask), has no holes in it, which is one of many features that make it easier to use and more effective.)

If you have a humidifier for your oxygen setup, you can put ice cubes in it to cool the O2. If you don't have a humidifier, here's a tip from our "sister" site about how to make one (that you can add ice cubes to): >>If you can’t get a moisturizer Make your own. Take an empty (and cleaned) mayonnaise jar (or something like that), drill two small holes in the lid, the size of the O2 air line. Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar. Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid. Seal around both hoses with a silicon type sealant. Put an inch or two of water into the jar. No more than ¼ full! I attached mine to the tank with a bungee cord. BTW, if you put ice cubes into the water, it will cool the O2 somewhat. Many feel this helps it to work.<< You can buy a humidifier (a "bubbler") here, among other places: https://www.mooremedical.com/index.cfm?/Disposable-Humidifier/&PG=CTL&CS=HOM&FN=ProductDetail&PID=676&spx=1 If he's using medical oxygen, your O2 supplier might provide a humidifier. For other ideas about getting the most from O2, you might read the oxygen file that's under the "MENU" tab on each page here. I am also the parent of someone with CH. It's tough. I'm glad you came here. Please stick around. There's a lot to learn. Does your son drink an energy drink, or a strong cup of coffee, as soon as he feels an attack coming on? That can help. Has he tried the vitamin D3 regimen that has helped a whole lot of people? http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Melatonin at night? Maybe you'll tell us more about him. The folks here are great, and ready to help -- and like Jeebs said, if you/he can make it to the conference, that could be a very good thing.

I've never had a problem turning them into a pretty fine powder using a mortar and pestle. Takes some work. In her advice in the CB Files section, MoxieGirl suggests doing it in batches of ten or so. If you're asking what you can do right now . . . you can put them in baggies (multiple layers) and use a small hammer or mallet on them. I try to do that slowly and somewhat gently to avoid creating heat. The powder won't be as fine, but it can be fine enough (I guess you could add a few more if you think you're losing LSA because the powder isn't fine enough). Some people use an electric coffee grinder, and insist that it works fine for them. For me, that would be a last resort (because of the heat), and I'd do it with very short pulses, spaced some time apart.

Believe me, that will get you nowhere. (Inside joke--sorry.)

Or . . . head for the Bomba Shack: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426/22  (I suppose that if they're legally serving shroom drinks, maybe shrooms are legal in the British Virgin Islands in general?) Hey Minnie, what else are you doing for CH? Tried the D3 approach? Got oxygen? Also, as Ricardo suggests, you have very close to a zero percent chance of getting in trouble with LSA. As I remember it, Louisiana is the only state where it's illegal to possess rivea corymbosa seeds.

Thanks, Cindy. Jerry

Yes, Wow.

i agree with what jeff advised, didg. the best way to keep from falling asleep with the mask on is to cut off the strap. there's absolutely no reason to set the flow rate at 8. your son is only going to inhale what he inhales (it's not like it comes rushing into his lungs on its own); the higher flow rate just makes sure the bag is full when he's ready to inhale. as for hyperventilating, etc., he'll find what works for him. most folks here would say you should order the o2ptimask. look at the oxygen file under the MENU tab on the left for tips that will make his use better. i would strongly recommend that he do a few inhales right now, so he's comfortable when the time comes. also, you can make sure the mask fits properly and that he gets a good seal. many people prefer a breathing tube (one comes with the o2ptimask) to a mask.

Cindy, I don't know whether others have a similar issue, but I'm not comfortable giving "Causes" (or anyone) access to what they're asking for here -- "your public profile, friend list, email address, birthday, hometown, current city and your friends' current cities." Am I doing this wrong? Or is there another way to donate? Jerry

What they said, Elly. What a joy to read this!!!!!!!!!!!

well, jgb, you can see you've come to the right place. the people here are so great that i am touched every time -- whenever someone needs help, they're right there. read the advice you've received, and ask questions. get the seeds. get the oxygen if he doesn't have it (or upgrade his system if it's not working as well as it once did -- see the oxygen page under the MENU tab on the left side of the page). use the energy drinks (or strong coffee). start the D3 regimen (see http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804). read what's in the "clusterbuster files" section of the board. only general thing i can think of that hasn't been mentioned is melatonin at night, starting with maybe 6-9 mg and working up to where it's helping (some people go as high as 20-30 mg). i don't happen to be a big melatonin fan, but there are folks here who swear by it. ask, ask, ask. these great folks will be right there for you, and it will get better for your husband (and you). he's lucky he has you.

Ann -- they prescribed nothing??? First thing you want is oxygen (read the file under the MENU tab on the left side of the page). You should demand that, immediately. Once you've looked at some of the files Bob mentions, particularly the numbered ones about the ClusterBusters method, let us know whether you're interested in busting. (You don't have to be to stay here and get great advice, but if you are, we can advise you). You're probably right at some level that "no doctor can fix this," at least not right now, but there are treatments, pharmaceutical and alternative, that can help. I'd suggest that you read about the "vitamin D3" regimen that has helped a lot of people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804)

She's in her thirties. They started when she was in college, or maybe sooner, but she didn't seek treatment for them until considerably later (and then had a misdiagnosis for several years). They have some patterns that seem related to the time of year, but they're not "like clockwork" in that regard.

glad you've got kudrow on your side. my daughter's okay, thanks . . . but it's been a rough cycle. jerry