Bejeeber

What they said!

Have you had the surgery Carol? if so, how'd it go?

Hi Christin, Being glad to see you're not alone is a common sentiment when folks first arrive here, then that often gives way to "glad I found out how to get some relief!". Please stay with us here and I'll be looking forward to reports of both your mom and yourself finding significant relief. In the meantime, today, assuming you don't immediately have your O2, you could always try the harmless "put your nose up to the blasting car air conditioner vent and deeply breathe the freezing air" trick at onset of an attack. This will abort an attack for some of us some of the time, as can extremely vigorous exercise - as in sprint all out 'til you drop. And feel free to bring your ice pack to the car with you. You could even have some ice cubes in your mouth onthe cluster side. 8-)

Just please don't overlook the good news about people that are avoiding cycles altogether with busting.

Hey Arcan - if you try imitrex injections, this link that describes how to stretch your doses is some genuinely critical info: http://www.clusterheadaches.com/imitrex.html

Well I think you're very smart to be researching your options Arcan, because you never know when this beast will stop responding to a treatment, and it can really save you to have a back up plan all ready to go in such a case.

Hey Arcan, Although 80% or so of CH'ers are episodic, I think you'll find a significantly higher percentage of chronics here at this site since this is where people often come as a last resort after meds have failed (only to find it should've been the first resort!). Personally, like you I'm a lucky episodic who started off with one month per year. Here's something I've noticed after reading many thousands of posts from CH'ers: It is common for remissions to become longer and longer as the years and decades pass. When you've had 'em for 30+ years like me, you can find yourself going many many years between episodes! Of course there's no guarantee of that good fortune befalling any of us, and hell I could go chronic myself any nanosecond now, but I've certainly been lucky with the ever extending remissions. There certainly have also been plenty of reports of CH burning out completely by the time we reach elderly status. Plus there's the chance you could knock out entire episodes with busting anyway, so basically the future looks pretty bright. About the imitrex - that's a tuffy IMO. If I were you, after reading the warnings, I'd bust as a preventative, and use O2 as a first choice abortive, only considering imitrex injections as a back up. Um, because that's what I do. I think it's possible imitrex can make attacks worse. Or was that just going to happen anyway? My attacks became worse after several years with CH, but that was before imitrex was even invented. I had been prescribed prednisone though, and that could've made mine worse (??)

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