Bejeeber

What they said Michael! You've got people quitting all kinda bad stuff. The snowballing is picking up steam! Wait a minute if a snowball picked up steam it would start melting - that was a bad expression to use there.

Well yay for Goadsby then Now regretting I was gettin' on his case for outdated remarks.

Here it is - from the ch.com archives: Mark Honigsbaum The Guardian, Tuesday August 2 2005 . “Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy. He argues that the relief reported by some patients may be a placebo effect or owing to natural remission. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=print;num=1212882305

I would imagine that coordinating with OUCH could be fruitful, since it turns out that OUCH is really a good organization - the American wing at least - and on their site they even list busting as the most effective preventative out there. To give an idea of what OUCH has been doing, they also have a "family services" division that comes to the direct, concrete aid of CH'ers who are in crisis with limited or no funds/insurance, which is an incredible service, one that very well may have prevented some suicides. I had been afraid that the American OUCH might shun the busting concept, as I heard the UK version of OUCH was doing at one point, but the fact that they're featuring Bob alongside Goadsby says a LOT, and I salute (and am a member of) OUCH! <insert vigorous saluting emoticon here> I hope Dr. Goadsby - the supposed world's foremost authority on CH -Â who I'd earlier seen quoted as believing relief from psilocybin was likely a 'placebo' effect, will learn something at the OUCH conference if he still hasn't done his research. Actually, if that quote was accurate, I'm pretty much taken aback that he could even believe a placebo effect is possible with CH.

Please money fairy, do poop a HUGE pile of money into Mystina's hands.Â

Ha - I just saw this now. Kaboom you may have to step in and defend my honor here LOL. And if I can make it to the cornvention, yep I will actually find a photo o' meself to post here beforehand (brace yerselves! ) so folks'll recognize me in person. 8-) Would that be the cooooolest if both Ron'n Michael could both get to Chicago or what?

Michael look what you inspired Dan to do - this thing is snowballing. In a good snowballing kind of way. Dan I would imagine it'll be reasonable for you to hope for improved busting results too after getting all 'withdrawed' and such, which sounds like a ginormous bonus indeed. 8-) (and I figured I should start signing off with my real name at least occasionally here, because I hope to attend the clusterbuster conference and meet you buncha nut jobs in person).

Well put Matty.

Something's gotta work - please let it be Warfarin.Â

Michael I've been following your case since back when your dad first posted some background over at the CH message board, and I was stunned right then and there by the worst case of CH I'd ever heard of. I know it's been a rollercoaster with the incredibly extreme chronic CH you've had - induced coma even - followed by some relief with busting, and now back to square one. This transition you're having to make to be off of pain relievers right when the CH has come roaring back, well there's no candy coating it - it sounds like just a horrible trial to have to go through, we know you're running the gauntlet from hell, and it really concerns your family here who are reading about it. We do have a lot of hope though that you will break through the other side with the busting really unhampered and able to do it's thing 100% for you. Please try to keep your eye on the prize if you can (the other eye, not the one with the nuclear pinging behind it! :'(), and see yourself PF and back to your cool job (how COOL are they for holding it for you??!!). We're all pulling for you Michael, we're here for you as much as we can be in cyberspace during this trial of all trials, and we'll also be ready to celebrate when you come through the other side. -Matt

Hi Booj's mom, I don't have super informative, definitive answers for you, but I'll mention what I know about neurontin (AKA gabapentin). I've taken neurontin and at various times, many other boatloads of prescribed drugs for CH. From what I've seen, some CH'ers swear by it, some swear at it. I've seen some report complete prevention success with it, but probably a higher percentage who've tried it without success. I basically assume it will interfere with busting, although I'm not seeing it specifically in the med interactions list found here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 The last time I was on prescriptions for CH, I tried neurontin for the preventative, and thanked my lucky stars that it kicked in (it can take a couple weeks) just as my episode was about to spiral out of control with too many high kip hits to keep up with just using O2 and partial dose imitrex injections for aborts. It basically cut the amount of attacks down by around 50%, which brought the remaining couple months of the episode down to a manageable level. I felt a bit pleasantly drugged on it at first, but even on a high dose I found that side effect eventually went away. Sorry to hear of the struggles with getting Booj's Ch under control - here's hoping you find a breakthrough soon. :'( -Jeebs

Oh nonsense - you're only as old as you look! Wait a minute...is that how that expression goes? I hope not, because if so, I'm hosed!

Yes, the awesome best most! HAPPY B DAY!!!

It's extremely fecking cool!Â

Sounds like you're about to slam this beast with a crushing wallop that'll likely make him start thinking twice before he comes to visit again. And that's a good thing! Best of luck with the BRF! Will you be pretty much detoxed from the drugs for 5 days or more before you take your vitamin M?

After experiencing a concert with these guys in ideal surroundings last summer where they played a couple of these new songs ('Livin' In a World Gone Mad' and 'Meanwhile') I'm a genuine fan. http://www.myspace.com/dumpstaphunk So funky it may be illegal. Something unusual about their instrumentation: TWO bass players (!)

Well Kaboom, if anyone hands out any bonker awards at a conference, I think we should clearly rule this option out for the manner of presentation - even if some would find it could bring a temporary, welcome distraction from a CH attack:

Is my link to the Bomba Shack on Little Apple Bay topic not werkin? Bomba Shack link: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426

Thanks Ron! I shan't be including myself on the list until I meet the stringent criteria though - otherwise everyone would receive a bonker, and then how special would a bonker be??!! Consider your suggested inclusion of the notorious gang of 3 a dun deal though. Maybe the rank and file soldiers such as myself can be peresented with a purple heart (or droopy eye?) award. And a reminder to all regarding bonker nominations: These are reserved for just 2 categories of folk who exemplify altruism and/or bravery:

Each medal of honor awarded is known as a "bonker", for reasons soon to unfold: These are reserved for just 2 categories of folk who exemplify altruism and/or bravery: .Â

Meet us at the Bomba shack: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426

Just when I was trying to tame my doctor bashing tendencies you go and provoke me! Insert some good ol' fashioned doctor bashin' here: I find it incredible that headache specialists (in the US at least) routinely require CH patients in crisis to wait months for an appointment. There's just no imaginable no excuse for that whatsoever (they could reserve an appointment slot each week for an emergency CH patient, or there would be many other ways to make an opening). I still think it would be good to have a very public list of these doctors where they could be called out by name, detailing the repercussions of their negligence, callousness, greed and blatant violation of the hippocratic oath in a way that would come up whenever someone looks them up online.

Count me in.

The term 'YEEHAW!' immediately comes to mind. [smiley=2vrolijk_08.gif]

Wow what an inspiring post - thanks for that Mwib87! 8-)