Bejeeber

Super glad to hear you have a good UK pal personally coming to your assistance now. [smiley=thumbup.gif]

I think that actually should've been a major CH indicator for any doc with a passing familiarity with CH. Speaking of which: I'm going to try to go one further here and suggest you specifically seek out a headache specialist type neuro, since garden variety neuros often don't know enough at all about treating CH. Kudos to your second doc for doing homework enough to make the CH diagnosis. Sounds that way to me too, and I think you'd be hard pressed to find any headache specialist prescribing it that low. This could be an instance where an injection form triptan (imigran/imitrex) would likely trump the nasal spray and be able to abort the attack. Another advantage to injectors with an accessible syringe is that you can stretch your doses out and make them last, which is critical for so many CH'ers, and I see it is for you too. I guess you'd want a combo of imigran inhalers and injections so you could still inhale while teaching....? Here are details on how to stretch injection doses: http://www.clusterheadaches.com/imitrex.html I believe your research results there are spot on. You may also want to look into the vitamin D3 regimen which many CH'ers believe has helped them with prevention, and IMO you'll DEFINITELY want to learn about "busting", which is a much more effective preventative than any prescription RX, and is something many of us CH vets who have tried and eventually sworn at every med, now swear by. Here are what I consider very important (and also very engaging) links for an easy overview of busting (OK you're a teacher and you don't need easy, but with CH attacks tearing through your grey matter, maybe even you could use a break from the researchy technical stuff). 8-) A Newsweek (major mainstream US news magazine) article about busting and CH: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html A National Geographic episode on CH and busting, profiling one of our forum members, the now movie star "Hipshot" who regularly interacts with us here (you'll meet him and LeeAnn when you come to the Clusterbusters convention in Chicago in September. Hey MG from the UK is attending ). Dan's feature begins in this video at around 30:50.: http://www.youtube.com/watch?v=LjteSZu_JqM A video talk by the founder of this site, Bob Wold, on busting and his long experience with prescriptions vs busting: http://vimeo.com/10918637

That's just un-fecking-believable. Now I REALLY can't imagine... :'(

I can't imagine anyone going through about 35 years (after subtracting your PF interludes) of being chronic, and how on earth you were able to withstand that. So sorry that had to be you C59, but dam happy that you have a remission in the works again. PHEW. Now down to details:

Those moments are so special!! Reminds me of when I had to ask to use the bathroom in a small pharmacy so I could quickly jab meself in the leg with freshly purchased trex after having completely run out. The unique part was that this was not so much a pharmacy, but a farmacia, in TIJUANA. (I lived in san Diego at the time, and it was more economical to pop over the border for med$). Oh well at least that bathroom was actually clean, so you still got me beat b.g.Â

Hate it when the beast returneth like that. > I bet you'll shut him up with the next bust or 2.

Well I know from your previous experience that it can take a few bustings to completely snuff a cycle that's already gained a foothold, but it sure would be simply lovely if your bust last sunday was all ya needed for a good long while! I suppose if I were you, I'd be starting in on the contingency planning for a repeat detox/bust - just in case it becomes necessary. Here's hoping these shadows fizzle out and you do actually find yourself completely scott free!

Well the pred sure does kick your brand of journalism right into the gonzo category, and I have to say it is hyper-engaging. ;D This is entirely classic and should be enshrined somewhere ;D: Sorry to hear that it ain't working out so great in the CH dept. though. The chronic guy I know who had the recent success with pred? Years back he had pretty much sworn it off after he says he went cuckoo on it, and didn't sleep at all. The crazed insomnia is definitely known to happen to to some people, some of the time.

Sigh, I was hoping someone else might take on this elephant in the busting room. I don't have personal experience with busting in close proximity to a pred burst, but I've seen some o' the most credible CH folk warn that pred is a busting blocker that should be detoxed from. :'( Maybe CHfather will chime in on that issue. On the more positive side, chrisw's post reminded me that there have been occasions when my CH has simply returned at it's original intensity after a pred taper, so hey maybe that's reasonable to expect. Sorry about all the possibly overdone "returns with a vengeance" alarm bells. :-?

Woot, woot is right! [smiley=vrolijk_1.gif] [smiley=thumbup.gif]

May your beast rest in peace! Heavy shadow lifting right away does seem like a good sign alright. That is interesting that last time the score was RC: 0, paper: 0, Mushrooms: jackpot! Especially since paper is considered by some to be the most likely to succeed. Hey maybe the RC and/or paper weakened the beast enough that the vit M finished him off for the year...?! I dunno, maybe not, this process can be kinda cuckoo and mysterious, can't it? Well thank gosh you were so tenacious and determined.

Hey Ricardo - I can tell ya I've done the spaced intervals of pred like that without encountering any issues with effectiveness. Issues with attacks coming back with a vengeance after the taper, yes, but as common as that unfortunate phenomenon is, it is fortunately not 100% assured that it will occur. I know a chronic headbanger who recently resorted to a pred burst in a desperate bid to get a break from being hammered. It worked. The huge surprise was that after the taper he still wasn't getting hit. And He's STILL not getting hit several months later (????!!!!). Man that sort of thing is SOOOooo rare, and he had done pred bursts before without lasting results. Here's hoping you could be the next one in a million who somehow gets lasting relief. For others reading this - beware, the "CH hits return with a vengeance " is a MUCH more common after effect of pred. Also Ricardo, be aware that flashes of personality changes can absolutely result while on the high dose. For me and some others an uncharacteristic mercurial hot tempered-ness can manifest. Not quite 'roid rage, but a hot button that can be easily pushed, causing you to tell the wife off replete with expletives, then a few seconds later feel perfectly calm, happy go lucky, wondering why the wife is acting so offended.

Forgive me if we talked about this as part of your strategy last year and I've now forgotten, but some headbangers who drink the strong coffee when trying to abort an attack are also popping a taurine pill at the same time so they'll get that caffeine/taurine combo that's considered to be the thingamajig that makes energy drinks effective.

Now that you mention it, it would be tuff to find any WORSE place for head swappin'.Â

Insane indeed. Jeez Donnie, you must really be asking the big WTF???!!! To have the attacks intensify right at the time your valve/regulator goes on the blink, that's un-freaking-believable. > It definitely sounds to me like time to graduate to a higher LPM regulator or demand valve system anyway (if you're still on a 15 LPM), since your results at that relatively low flow are waning, but to have yours actually not working now is thoroughly un-thinkable. 15 LPM doesn't do jack for me and some of our other head banging compadres BTW. Hang in there somehow , very sorry to hear of this journey through hell, and best of luck getting to a higher O2 flow really quickly.

YAY!! [smiley=vrolijk_1.gif] [smiley=vrolijk_26.gif] [smiley=thumbup.gif] [smiley=2vrolijk_08.gif] BOO!! > :'( :-? That's pretty incredible that a chronic could get over a year remission Green Eyes (!!!). Um not that that will do you any good tonight though dammit. Ya been maintenance busting? I imagine you're preparing to really go at it and seriously bust like a fuster clucker once again?

UGH, really sorry to hear that. :'( Understood where you're coming from there, as a whole bunch of us busting folk (I'm guessing most of us) kinda ran the gamut of conventional meds before getting down to the busting. Here's to some serious beast busting for you!

Wow, Darby, well I think you've you've come to the right place! If living deep in the forest means you're more inclined towards natural treatments, then this is a good era in which to be seeking info, because it's been shown that "busting" is the most effective long term CH preventative bar none, and a HUGE number of us who have tried every prescription drug out there, then tried busting, have found this to be true. I'm talking about powerful natural substances such as Rivea Corymbosa seeds (which are legal to purchase in most countries), psilocybin mushrooms, and psilocybin truffles (the truffles are legal in the Netherlands - and probably shippable to Sweden..?). For all I know you may have some psilocybin containing something or other growing right at your feet there (of course extreme caution and expertise would be required to identify it). This busting thing has actually gone mainstream to an inspiring degree, with some top researchers all over it. Don't take my word for it though! Here are links to prominent articles and videos on the subject of busting for CH, if you can load any of them: Newsweek (USA) article: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html National Geographic episode (the CH feature starts at around 30:50): http://www.youtube.com/watch?v=LjteSZu_JqM A talk on busting and CH by the founder of this site Bob Wold: http://vimeo.com/10918637 Chronic CH is of course the toughest to beat, but we've seen some chronics go into some really long remissions. And BTW busting can be extremely effective at knocking out migraines.

Thanks Ricardo - interesting about the Aztec connection, and the references to stuff like it's use as a topical "benumbing" agent. Benumbing. Benumbing. Also weird to see talk of a dose in the range of 13 seeds inducing hallucinations..??!! Were those seeds back in the good 'ol days more potent due to soil and/or climate conditions or other factors, or is the reporting just skewed and inaccurate? This I ponder.Â

I hesitate to continue to reply here Donnie, since I haven't been offering any actual useful info in this thread lately, but my impression from what I've read and seen reported is that unfortunately opiates can at least be partial busting blockers. :-?

Ack! That elicits a high decibel WTFeck??!! Dam. Sorry to hear about all that but glad you saved her life (!!). :o And sheesh at 10k a day those hospitals can be a helluva high rent di$trict.Â

Well OK my concerns were entirely unfounded about whether caffeine was being included with the taurine (color me a worry wart ), but I'll lay just one more on ya - from what I've read, taurine is very heat sensitive, often destroyed when cooking, and might be destroyed if added to real hot coffee.

Understood about the funds. Imitrex for instance can be insanely expensive for those in the US without good insurance (hopefully that ain't you!). Thank gosh the 'ol busting, besides being super effective, tends to be cheep cheep cheap, and the same can be true for O2 on a $$ per attack aborted basis. 8-)

Hey Donnie, hopefully you're keeping in mind that it's the taurine/caffeine combo that's widely considered to be the ticket, hence CHf's mention of stirring the taurine into coffee. And my expounding here by mentioning other options like pre-prepared iced coffee or strong ice tea or other cheap caffeine drinks. 8-) SUPER GLAD TO HEAR THINGS ARE IMPROVING BIG TIME!! [smiley=thumbup.gif]

I'd like to echo what CHf said and the exact way he said it. [Edit: oh and Ajax too - I now see he slipped his post in before mine] Good attitude. A bit naive perhaps, but nice'n positive at least. Now I'd suggest arming yourself to the teeth in preparation for fierce battle - just in case. Personally, I'd be stockpiling the imitrex injections, assembling a high flow, 100% O2 rig today, and considering leaving the verap on the shelf while charging full steam ahead with the busting, which tends to be more effective, with less dangerous side effects (if there's no history of schizophrenia, etc.) than the verap. If it seems like some of us are panicky reactionary paranoid alarmists - well in this case at least, we aren't. We're just highly aware of the extremely typical CH scenario, not just from our own experiences (30+ years for me), but from poring over thousands of reports from CH'ers. And we've had some great successes by way of very aggressive proactive beast fighting strategies and contingency planning. I know Ajax has become a master of the CH contingency planning, and like most of us has had to put it all to use in full force when hell has broken loose and the fit has hit the shan ;D, as it typically does.Â