CHfather

I'm very glad your cycle seems to be ending, Austin. That's the important thing for now. I don't know whether you intend to return the tank and the concentrator to Lincare or hold on to them, but I think that if you educate them they will understand that a concentrator is nearly useless to you. (We went through the same thing with a Lincare office -- they sent a concentrator and said it was the best they could do, but after I insisted they found a nice big tank and a 15 lpm regulator.) You're wasting $ big time on the concentrator -- heck, you could buy a big tank from a welding supply place, and get your own regulator and mask, for far, far less than you're paying them over time. If you want to be persistent with Lincare, I'd start by sending them this article about high-flow O2 for CH: '>http://jama.jamanetwork.com/article.aspx?articleid=185035 You might want to ask to talk to the respiratory therapist at Lincare; you'd probably get a more empathetic ear there. Also, if it's taking 15-20 minutes to abort, maybe you'll find some useful tips at the CB Oxygen Page that is underneath the MENU tab on the left side of the page. Most people find, for example, that the O2ptimask that's discussed there cuts their abort time significantly. Anyway, here are PF wishes to you!

Austin, what do you do with the concentrator? Most people have very little success with them as a primary O2 source, and as I read about this one, it seems like it only produces 5lpm. Glad something's working for you, but if this plus the small tank is your whole setup, I think most everyone here would suggest that you talk to Lincare about getting rid of the concentrator and getting a big ("M") tank instead. Am I missing something?

Infinite number of :)s here.

Hoping for the best for you, Whooli.

jms, I don't want to push unpleasantly about this, but just want to be sure you've looked at the oxygen page (under the MENU tab on the left) and you're sure you're doing all you can to make oxygen effective. And I guess we don't know whether you son has tried busting, which has been the answer for many people after all the meds they tried had come up short. Beyond that, there was considerable discussion at the conference about intranasal ketamine as something resembling a last resort for some people. There's some discussion of it in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1374121712/3#3 One won't get that in an ER (maybe one could get some form of ketamine, but I don't know whether that's true or even whether it's advisable). All I can tell you about intranasal ketamine is what I heard at the conference. If you're interested, I'm sure the conversation can be continued. You'll see a post in that thread from the very wonderful Boston Headache Doctor. He has prescribed ket for some people and, as I understand it, helped others get it through their own doctors. Maybe his advice would be helpful to you.

b.g., the published results are here: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCwQFjAA&url=http%3A%2F%2Fwww.clusterheadaches.com%2Fcb%2Fyabbfiles%2FAttachments%2FCephalgia_article_on_Bromo-LSD.PDF&ei=Ti1GUtunCJLI2wWh4IFg&usg=AFQjCNEQA_GTFiQZknJ_DNK431-EwTN5og&sig2=UW6P9QdNbvz8O1Tvx5gOmw&bvm=bv.53217764,d.b2I  You'll see that four of the subjects had chronic CH and one was episodic. All I know is what I read here, and what I remember from Dr. Halpern's talks. Happy to discuss it more; not sure what to say that you can't see for yourself here. I do remember (and you probably do, too) Dr. Halpern suggesting that it might be extremely difficult to find a German doctor who would actually prescribe BOL. I wondered then whether if there were a group of US patients interested in finding such a doctor they might be able to find someone who would scout around in Germany on their behalf. No idea how any of that might work -- just wondering.

Funny, I was wondering yesterday whether when you dropped those meds you'd get some PF time. It happens so often. Not always, maybe not even most of the time, but often.

I'm just passing on what the others here have taught me. Thankful every day for all the folks who make the time to share their knowledge and support. (Since you like the mask now, this is probably unimportant, and you probably know it anyway, but the O2ptimask does come with a breathing tube attachment, too.)

Just keep in mind that many people see no major change from the first dose or two (or even three or more). In fact, it's not uncommon for people to experience "post-dose hits," or "slapbacks," in which attacks after dosing are more severe than usual, and/or at unusual times. So it's good to at least have that O2 in place for the days between dosing.

I think you might be able to get by while continuing on the verap. Good to get off it, but not necessary (I don't think) at the level you're taking. Setting up an O2 system using welding oxygen seems like it should be a top priority, and you can probably get that done pretty quickly. We can walk you through it. If you live anywhere near a supplier of welding O2 (and particularly a Harbor Freight store), you might be able to get the core elements, a tank and a regulator, pretty quickly, but you'll need a mask. Folks here will tell you that the O2ptimask is worth the extra cost: '>http://www.clusterheadaches.com/khxc You don't have to stop the melatonin. You might want to consider the "vitamin d3" approach that has helped a lot of people. You might or might not want to hold off on that until you've seen the results of your mushroom "busting," so you're trying only one new thing at a time. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Welcome, 'Scratcher. Glad you found this site. The folks here are great. What is the rest of your CH reg? Some things can block busting, and you have to "detox" from them for five days before the psychedelics can be effective. Imitrex is one of those things. Read the files in the "ClusterBusters Files" section of this board (the numbered ones by TommyD, particularly) -- they'll give you a rundown on all the basics. But also be sure to let us know how you're doing, and what you're doing -- there's a lot of practical advice to be gained from the folks here. It might be good if you mentioned the size of your mushroom dose -- 1 - 1.5 grams of dried shrooms is the most commonly suggested first dose. Are you using oxygen? You can set up a system without insurance. See the "Oxygen Page" under the MENU tab at the left for more info, and then . . . you know . . . ask questions if there's more you want to know. Also -- though maybe you won't need this -- there are some tricks for extending imitrex. Here's a link to one of them: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 (Imitrex does definitely block busting, though, as I mentioned.) Stay in touch.

Right. Thanks to all of you for your input.

Thanks, guys.

Jeff, can you say more about that special regulator? What it's called; where to get one; etc? Thanks.

Ah, yes. I didn't see that wording. And you're right about the Harbor Freight one, and right about the adapter being easy to purchase if you know what you're looking for and know that such a thing exists (I just bought two for .99 each). I was reacting to the "standard oxygen regulator" wording because when I first set up welding O2, the process was quite unsettling (we needed it, and I wasn't sure I was going to do the right things to get it), and coming home with an expensive regulator from a welding supply store and then finding that the fitting wasn't right for the tubing was very distressing. Once you've done it all, it's a piece of cake, but in the midst of doing it for the first time, every step was freakin' me out.

Thanks. I'm glad to have that confirmed by an actual expert. Do you have an opinion about the lpm that is available from that Harbor Freight regulator you mentioned? I know it doesn't have a gauge, but if it's opened up all the way, do you figure you're getting as much as 50-60lpm?

Nice. The only thing I would say is that I think it's inaccurate to say that the regulator pictured is "a standard oxygen regulator for welding tanks." In my experience, most standard welding regulators do not have the barbed connector that this one has (which is needed to attach a mask and tubing). The one shown here is the one that Racer mentioned in his post to Vickle today; it can be ordered from Harbor Freight. In order to use a standard welding oxygen regulator, you need to get an adapter that turns the DISS fitting into a barbed fitting. These are pretty easy to buy online, but they don't come with most standard regulators (as far as I know), and I wasn't able to buy one at a welding O2 store.

Something that might help in the short run . . . I remember that when the bb was doing his part of the O2 demo at the conference, he suggested that if you have to wait for the bag to refill, hold the O2 in your lungs while the bag is refilling (rather than exhaling and then waiting). Pretty sure I'm remembering that correctly.

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.