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Everything posted by Bejeeber
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I've done a heckuva lot of doctor bashing on the forums, but I'd like to officially pause and vigorously salute your childhood doc and your 1982 "O2" neuro, DM! Ow, I just jabbed myself in the eye when I was vigorously saluting - I hope that's not a CH trigger dammit.Â
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From what I've seen it's not just here - that's just a pretty common profile for CH'ers period.
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That was an entertaining story Purp (albeit all too often riveting in a horror story sort of fashion ). And now we have another CH veteran officially inducted into the 1980 club. Hey maybe we can have a dedicated 1980 table at the CB conference and have a special 1980 logo printed for our T Shirts.Â
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NEW TREATMENT FOR CLUSTER HEADACHES
Bejeeber replied to Brackeen2's topic in Research & Scientific News
Because of it's GMO-ness? Oops I wasn't supposed to get you started. -
never had opportunity for clusterbuster, until now
Bejeeber replied to donkeytaco's topic in General Board
Well that truly was an excellent rundown on RC from CHf. [smiley=thumbup.gif] CHf is livin' proof indeed of how nice'n good human folk can actually be. And understood about the sore-head shadowed CH brain burn factor. Here's to a really successful next bust for you donkeytaco. Donkeytaco. Donkeytaco. Man I love that. And I'm vegetarian. -
I had my remaining ones yanked when I was around 23, thinking my cuckoo attacks (CH but I didn't know it yet) could be caused by them. I was wrong, as have been a LOT LOT LOT of other CH'ers who've gone on fruitless tooth pulling quests.
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never had opportunity for clusterbuster, until now
Bejeeber replied to donkeytaco's topic in General Board
Agreed with CHf. In fact there are those who find paper to be even more effective, and consider it the ultimate currently available busting material. Donkeytaco. Donkeytaco. That has a nice ring to it. Coolest name ever. 8-) -
I like the sounda that!!  [smiley=thumbup.gif]
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You are one intuitive SOB. Â [smiley=thumbup.gif]
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Dammit. I wouldn't be surprised if that is the case indeed. I hope you can dig up some good info on how to tamper with it (remove syringe) anyway. I guess that shouldn't be too surprising since a dropped O2 cylinder can apparently be quite the missile, and they're probably on guard against the old boaty McSinky routine. I remember one O2 delivery guy telling me he thought nurses were generally lax in their handling of the cylinders, and he knew of one who had dropped one. The valve got knocked off and the cylinder shot all the way down the corridor, punched through the wall, then continued flying outside.Â
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Some CH busters have reported success while remaining on their SSRI, so you may want to look into that a bit further...? Some do! Fingers crossed that your dad could be one of 'em.Â
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PHEW. Thank gosh you made it through in style. [smiley=thumbup.gif] 8-)
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Hi SJ, Not to my way of thinking, no. I think you're advising your dad well. A lot of us here who've been prescribed copious quantities of the usual drugs - with their notorious side effects and/or ineffectiveness - wish we would've known about busting during our first CH cycle and could've just gone a bustin' right from the get go. So my attitude is there's no time to bust like the present. Well in most cases that is - if someone believes they're in the last stages of an episodic cycle and the drugs and O2 are reasonably effective, that's not a great time to detox for busting IMO. Detoxing does tend to be one of the main hurdles, since many of the prescriptions (including Depakote I believe) will block the effects of busting, and need to be detoxed from for about 5 days or so before busting. Glad your dad has the O2 now, that's good stuff.Â
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Hi MEA, I've viewed a lot of first hand reports and discussions on O2, but I'm afraid I still can't claim to be an absolute expert. That won't stop me from giving you my impressions though. When I've aborted wake up hits in high cycle only to have them keep coming back every hour, I've felt it's just more a case of the O2 continually "postponing" a hit until I stop trying to sleep, at which point the abort may hold. GOOD QUESTION. All I can tell you is that I've been there too with the 20-30 minute abort times, and hanging on the O2 after the abort at a lower LPM setting for about 10 min would probably be all I'd be up for doing. Not to mention I don't tend to exactly have an infinite O2 supply! Haven't tried it personally, but yep, some folks do report success with coffee plus taurine pill(s) or powder. I suppose it goes without saying you'd want the coffee pre-made and instantly ready to drink. If you're not already hitting up the O2 gurus for their input at at the sister site, I bet that could be worthwhile: http://www.clusterheadaches.com/wwwboard2/index.html Really hoping you can get better sleep/less hits tonight by hook or by crook! Speaking of which, are you hyperventilating high flow 100% O2, or using the most effective delivery method, a demand valve system? When aborts are taking a long while to kick in, I figure bumping up the LPM is worth a try - that is if you're currently at 25 LPM or below.
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Hi MEA! A couple ways some CH'ers have been able to avoid the O2 rebounds are: 1) Stay on the O2 for a good awhile after the abort is complete. Some say 5 minutes, I've seen others recommend staying on it as long again as it took to abort. 2) Gulp an energy drink or shot right before hitting the O2. OK there appears to be an obvious conflict with actual SLEEPING there, but many a headbanger has reported somehow easily being able to go back to sleep afterwards. And here's a good guide to the D3 protocol (which has also been claimed to help the O2 work better through improved arterial PH): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
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Agreed, that definitely is a helpful site. I'll just try'n interject some second hand info that I've heard from BB, a resident medical marijuana expert here: Ingesting as opposed to smoking it is considered by many to be more effective for migraines. Please correct me if I'm wrong BB.Â
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Ah yes, the Walking Bean Pole Society. ;D [smiley=thumbup.gif]
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Extremely frustrating ups and downs indeed, and who could be blamed for some jaded cynicism at this point? BUT I still think you're right CHfather - long shot or not, I think we do gotta keep trying. It wouldn't be the first time a phoenix has risen from the ashes despite any odds. I'll do my contributing and liking, and I hope lots of us will swallow our (legit) reservations and give this a good shot, since the payoff of a successful effort would likely be mind bogglingly revolutionary for CH'ers young, old, fat, skinny, and BB.
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YAY for Walgreen's pharmacist. Between your beefed up arsenal and the fact that your cycle is likely in it's last throes anyway, it's starting to look to me like you're going to have one great vacation. 8-) Bon Voyage Ripper. Â
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Hey Rip, here's a link to the instructions for partial dose injections with an imitrex syringe: http://www.clusterheadaches.com/imitrex.html This has been a good tried and true method, widely used by CH'ers for 14 (!!) years now. I recommend printing it out immediately, and like I did, keep the printout in your wallet so you'll have it with you wherever you go, until you have the procedure memorized. Self injection is surprisingly easy and often practically painless if you pinch some abdomen skin/fat to the side of the navel and inject there. You very well may cringe and flinch mightily like I did the first time I self injected, but then it's like "WTF?! Why was I frightened of this like a little cry baby!?" This really truly is nothing compared to the beastly alternative. The needle doesn't have to go deep BTW, just "under the skin" is how I've seen it described, so I got in the habit of putting it about half way in. Try not to hesitate when you're in position, just frikkin' go for it immediately, and realize how easy breezy it actually is (this is the kind of pep talk I gave myself ;D). 6 mg syringes have been standard forever, but in recent years there's been talk about 4 mg versions hitting the market. I would specify 6 mg, and you want the "kits" where they give you the syringes that are meant for loading into an auto-injector contraption (screw that mechanical auto-injector though - it may come as part of the package, but it's dead weight when using partial doses - you'll be tossing it over board ). After several injections, chances are you may at one point hit some little capillary just under the skin that can leak for a couple seconds. It's meaningless and inconsequential - it just manifests as what looks like a dark bruise, and it could make for a nifty tummy tattoo during your sun bathing cruise. I love your doctor :-* ;D. While you may need a super expert headache specialist neuro at one point, it sounds like she's the type who, just because she didn't receive decent training regarding CH, she isn't letting that stop her from researching it on her own, and that makes her a voonderbar doc indeed. [smiley=thumbup.gif] Here's hoping the beast will have completely finished his going out like a lion antics before your vacation launch. 8-)
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I remember seeing a thread on the sister site started by a guy who was in cycle and was wondering whether to go on a planned fishing trip anyway, knowing he'd likely be hit more due to not having many CH fighting options at his disposal. I think EVERYONE except for me advised him to definitely go. Yep, except for me. But that's because I'm episodic, I can reschedule trips for when I'm not in cycle, and pre-busting I was able to make it through an 11 week cycle either aborting or preventing every single hit with meds, O2, etc. No trip is worth being hit to me. Everyone may still disagree, but if it was me I'd bail on the cruise, and focus instead on going completely hog freaking wild strategizing and building up contingency arsenals for beast counter-bashing (that preparedness to be able to dodge and weave when the beast shifted his tactics is how I beat him last time). I can see you're taking serious steps to be as prepared as possible with the prescriptions requests so that's good IMO. I think you should demand INJECTIONS come hell or high cruise water - you can potentially get 3 aborts from just one injector (!!), which means 6 aborts a day without even coming close to an OD level of dosage. That completely beats the ever living hell out of the inhaler scenario if you're getting hit often, and could make or break you right there. I'd go for the sputs too (I haven't actually tried 'em, but am impressed with what others have reported). As far as the plane rides are concerned, besides the imitrex and sputs, loading the pockets with energy shots can be a good thing! I'd also buzz the cruise peeps and make sure they'll have suitable energy drinks / shots on board. If not, or if you'd like to save $, you could pack a buncha energy shots in the luggage. One good thing about an imitrex inhaler: it can be used on the plane right during take off or landing etc. when the lavatory isn't available for that injecting we tend to find ourselves doing at 30,000 feet. I know some headbangers will call in the really big guns and go for a prednisone burst for a vacation trip - especially if it's a shorter trip, but that of course carries some definite risks of it's own, and it's a strategy that backfired pretty badly recently on poor Ricardo during his recent vacation. :-/ The fishing guy? I think he came back and reported he was glad he went on the trip. That was one time I was very glad not to be able to say "I told you so".
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Yes No. I attribute the onset of mine to too many nights a week sitting next to a drummer who was bashing his crash cymbal about a foot from my ear, as my ears would ring afterwards, and eventually they never stopped ringing (this was about 14 years after the onset of my CH). Sorry, I haven't paid attention to that. It sure seems more severe when I'm having an unpleasant busting trip though! FWIW (which is likely NOTHING) I've always had ears that are over sensitive to damage from loud noise - my ears would be ringing after loud music when my friend's wouldn't.
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Elly, thinking positive here, cautiously optimistic, and SUPER RELIEVED to hear about not even a shadow so far.Â
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I'm not going to claim I have the definitive answer for you, but I can say that if it was me, I'd be prioritizing getting set up with high flow 100% O2 of the welding variety. Even if you were to stick with the meds, you'd want to still abort as many attacks as possible with the O2. And the O2 is what has helped so many headbangers get through their detox before busting.
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Fingers crossed so vigorously for Jan that I think I almost just broke a couple of them!