Bejeeber

I would like to express the following sentiment: Yay. Now it's time to comeback down to earth Dan and start preparing your Emmy acceptance speech.

LOL y'all are killing me here! ;D I know you hate bustin', Dan, so I can't say "I hope it went well", but I hope it didn't go too bad, that good PF results will be obtained, and that NatGeo uses the video effectively.

Shoot I forgot to tell Dan "break a leg". Or maybe in this case "break a trigeminal"

Your results at the doctors and at Tricare are nothing short of incredible - that has to be the most successful medical O2 procurement story I've ever seen. Good work and congrats!!Â

Thanks for that port port and report dereksgirl, glad to hear that Derek is keeping 'em under control. I guess I may not have to change the name of this topic just yet.Â

Dog DANGIT! > Well if somebody here doesn't start getting a good result I might have to change the reference to vitamin D3 in the title of this topic to vitamin BS. :'(

GOD LUCK DAN - and thanks a bill-yun for doing this!

Sorry to hear that Nancy. That blows.Â

That's a perfect idea. Hmmm - you might have to produce an indy film about CH.

Hi met la, Agreed with F-123 and CHfather about the advantages of starting a new topic with this question so that you can reach the maximum audience. For now you're doing good to just have made it here and gotten a post in though. And yep, there sure are a lot of CH folk here who know all too well your concerns and where you're coming from. I'm personally familiar with the phenomenon of the long sustained attacks you describe. THEY SUCK. > The good thing about the fact that your current meds aren't bringing you dramatic relief is that there are still MUCH better things to try! Fiorinol/codeine in particular is something that I've never heard of any headache specialist prescribing for CH. If they can dull dull the pain a little I totally understand why anyone would take them, but really we need to get you on some very effective prevents/aborts. Gabapentin is one of the zillions of meds that I've taken in my pre-busting days, and I know that for me it could lessen the frequency of hits by up to 50% or so. Glad to see you're getting on the right track already - thinking about O2! Administered properly, it will likely bring a genuine new ray of hope into your CH experience. If I were you I'd certainly be seriously considering busting with mushrooms after any detoxing you can do from meds. Just make sure and check the warnings in the link Chfather supplied first. Some people have success with the much milder (side effect wise) and legal to order/possess RC seeds too, I'm just not sure if they would be the ticket considering your chronic status. Others will probably pipe in on that subject. HANG IN THERE met la - things could be very much better for you very soon.Â

5-7 a day. Aughhhhhh that BLOWS. > Frust123, Here's really hoping you get a positive D3 surprise 8-) ( but never actually counting on it, or anything else for that matter). :-/

Yeah Dan you might wanna treat yourself to a big 'ol 15,000 per day or so blast and besides being an official NatGeo Clusterbuster representative, you could be an official, um.....vit D3 guinea pig here too.... Man wouldn't that be cool if it actually worked. Hopefully your new vit. D stash is the D3 type? [Edit: whoa John you beat me to the post. Looks like you've also beaten Dan to the Guinea pigliness. Sorry that no miracle has occurred yet. Dang. Are you taking a high dose?]

So that's what the slogan "Fill It To The Rim With Brim" was all about.

This thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416 Is getting hard for me to ignore over at the ch.com message board. I wasn't paying too much attention because it just seemed unlikely to be a major help (and wouldn't this have already been discovered?), but people are starting to pile on (check the last couple pages), saying they get relief in 2 days (???) Vit D3 15,000 a day looks to me to be the main player - I've seen some CH'ers report using only it, skipping the fish oil, and getting the same sort of results. I'm prejudiced though (vegetarian). [Edit 8/23/11: the more reports I've read since originally posting this, the more I'm realizing that following the entire regimen including cal/mag citrate, zinc, etc. is actually important and worth trying]

I've seen the health and fire dangers of high flow rate O2 hotly contested at ch.com. I wish I had more time right now to look up more detail on this, but I think that a few viewpoints from those who've studied this and those in the trenches should probably be sought out before deciding how to treat the subject.

Hey Davy, I've only heard of RC seeds being available to order online - here's one UK place I know of where they can be ordered: http://www.allsalvia.co.uk/cluster_headaches.htm Please keep in mind now that the best results from RC, mushrooms or LSD are obtained when when you are detoxed from the meds, especially imitrex, for 5 days or so. That is one tremendously unfortunate reality I know >, and it's one of the reasons why O2 is touted, because it is hoped that it can cover you while you're detoxing and preparing to bust most effectively.

OK, a few more things'n stufff I have to throw out there: 1) There's this pictorial site put together by a ch.com member regarding welding O2 and regulators that might be a helpful link to include? http://morrobayphotos.com/ch/o2/ 2) I ordered my regulator from Flotec http://www.floteco2.com/htm/Products/Regulator_Page_&_Images/B-Regulators.htm. They have ones that go way high (I think mine goes to 60 LPM) and last time I checked they will overnight ship. I had to call them to figure out what would be the best choice of their regulators to order for my O2 tanks though - it wasn't clear to me online. 3) I've been seeing people report that their doctor doesn't know exactly how to word an O2 prescription. I know that happened when I went to see a physician's assistant. I anticipated this and brought my previous expired prescription and she just copied it. So an exact prescription wording example that can be taken to the doctor and shown to him or her if he/she has never written one before could be handy (sorry, I don't have mine on me).

Hi Davy - welcome, and sorry to hear that you're a member of our special little club. Have you had Ch for 9 years continuous as a chronic, or in episodes that come and go? I understand why you use the jabs - they abort the attacks. I think I've jabbed myself with ohhh, a few metric tonloads of imitrex since it was introduced, lucky enough not to have experienced the complications that others have with it. That said, I'm really in the same camp with the other responders here so far, advocating O2. My last 2.5 month episode before I started clusterbusting I used O2 as my primary abortive, and imitrex jabs as a backup only if the O2 didn't work. Between that and some slightly effective Neurontin as a prevent I got through the episode without having to experience a single full blown / full length attack. That was cool with me! (there was some 20 minute long K8 action to enjoy at peak cycle before imitrex kicked in, but that sure beat the hell outa 3 hour long high kippers I would've otherwise been looking at). Despite that unusual level of success, I am also very convinced that busting is the best way to go, with the possibility of knocking cycles out altogether, and the goal of attaining zero pharmaceutical intake. RC seeds or mushrooms sound like they'd be candidates for you - please check out the busting instructions link that has all kinds of info on the subject, and continue to hit us up with any more questions : http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886

Worst sandwich ever. Hey CHfather I see that our posts back'n forth in this topic from last night are now missing (???). Oh well, no big earth shattering deal there I guess - maybe that's just the official punishment for anyone who's enough of a frikkin' LOSER to post on a saturday night. ;D

Hey Jeff - I figure you're talking about HBWR seeds, not RC, is that right? Just thought I'd bring that up in case anyone not familiar with your bustin' history might read this and get an inaccurate idea about RC seeds (which seem to be milder on the tummy) and their side effects. 8-)

I just want to give a shout out to Dan here because he's takin' a real hit for the team by doing this NatGeo thing despite the fact that he no lovee the camera. We appreciate this a very large amount Dan!! One more thing - I hope you're stocking up on skullcap and/or other relaxing herbs to take with the next bust, especially if it's going to be the long lasting tabs type of bust. Maybe try the herb(s) out before bed one night just to make sure they agree with you before combining with busting items...? I know I'm definitely planning on taking a good amount of skullcap with the next bust. I've tried it before bed and felt nothing except sleep. 8-)

Happy Bee Day to the McShagBerry USA who sports a parasol! ;D

If the warnings regarding existing psychosis, etc. (that I believe you've already reviewed at http://www.clusterbusters.com/warning.htm) don't apply, then I can't think of any reason to try the toxic drugs first. Especially since the drugs will really mess with the busting possibilities, but I haven't seen any concerns about CH drug effectiveness being hampered by busting first. As someone whose relationship with the beast began 30+ years ago, and who has tried everything from just gritting teeth and bearing it, to heavy drug cocktails, to more targeted use of meds plus O2, and now busting, I believe that this here is Derek's best bet: Bust with intent to quash the episodes before they happen. Prescription drugs = last resort, only to be used if busting has somehow patently failed. In my case, mushrooms appear to be a more effective busting agent than RC seeds, but RC seeds are really mild on the side effects, and Derek could try taking 50 or so before bed at the first warning sign of shadows, or whenever he feels a episode could be coming back. If he's like me he'll sleep through an RC dose (a better night's sleep than usual) and won't feel any sort of tripping effect. I think you'd be very wise to still have mushrooms on hand (in the freezer) and ready to go though, just in case the RC doesn't do it. I can tell from reading your posts that you really have it together Derek's Girl, and I'm glad to see in your post here that we can count on you to BE PREPARED, have your backups and contingency plans all in a row, and to not get caught off guard. That 'ol beast certainly loves it when a CH'er let's the guard down. I think that's a tough call about whether triptans, or just the virus, or whatever has caused this unusual extension to Derek's episode. I can tell you that I had episodes start going on way longer than expected before triptans were even invented. If it helps ease your current worry any, far from going chronic when I started in with major triptan use, my remissions actually continued to become much longer and longer, so triptans, while not to be toyed with lightly, don't always culminate in a chronic disaster for everyone.

A demand valve does sound like it would be SWEET. 8-) As far as I know, whether you're breathing thru mouth or nose isn't going to make as much difference as whether you are hyperventilating or not. I know at peak cycle I really need to huff the stuff vigorously and rapidly in order to get an abort. I took a sort of survey/poll over at ch.com at one point regarding who was hyperventilating, what results they were getting, etc. - here's the link in case it's of any help: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1251783456/2

Hey that could be another big anthem type song for the Fuster Cluckers! ;D