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Everything posted by Bejeeber
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Ooh - OBE! Now THOSE sound like some serious adventures, I'll take 2 pleasant ones to go please. 8-)
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Whoa J, that is seriously disturbing about Lariam. Me: Right handed, right clustered, haven't noticed a pattern of vivid dreams prior to CH cycle onset (just because I didn't pay attention doesn't mean it didn't happen though).
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what do you do when you're struck down at work??
Bejeeber replied to ToniEvo's topic in General Board
I've been concerned for a long time now about how many females I've seen report difficulty getting a CH diagnosis simply because they are female, revealing the old guard medical establishment's claim that female CH patients are rare to be a self fulfilling prophesy, rife with MBOBS. (Misdiagnosis based on BS). -
The way I remember it is she is the daughter of (retired) Dr. Kudrow, who has CH, and she is the sister of the currently practicing Dr. Kudrow, who doesn't have CH.
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Quick answer: It plays well. Last time I checked anyway.
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Botox has been tried and discussed. Generally dismal, disappointing results for CH, but I don't know if that may have been due to it being used in the standard migraine (wrong) spots? Dan/Hipshot tried the standard Botox treatment with no success. Then he got the doctor to try something different and give him "a BIG shot of Botox in EXACTLY the same spot in my neck where he gives me the nerve block" .....at which point he got relief for 3 weeks. That discussion thread is here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1380388743/3 I know a very hard case chronic CH gal who also suffers from migraines. Botox has helped with her migraines aplenty but hasn't helped with her CH.
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I'll give it an A for raising awareness of CH, and that aspect is a major part of my grading system. Grade C for therapies discussed. It's certainly nice they focus on O2, and flashed ClusterBusters on that laptop. They went and consulted neurologists in order to find out about the the latest treatments, which would make sense you'd think - heck that's what I woulda done if I was them and knew nothing about CH, but CH is an odd case where that is not the best place to find out about the most effective preventative at this time. So they missed a little something (OK a big something), but aside from that, well done IMO.
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I would proceed VERY cautiously and first check into whether it's effects could be similar to nitro glycerin (a quick Googling shows them to be compared in some medical contexts or other). My concern about any similarity between these two could be completely unwarranted and way outa left field, it's just that nitro glycerin is considered the most foolproof trigger known for a major CH attack, and it will even be used for inducing attacks in upcoming Yale studies on psilocybin for CH. J makes a good point though that you'd think we would've heard about it one way or the other if it had any significant effect.
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Happy Thanksgiving to all of you and your famiies
Bejeeber replied to didgens's topic in General Board
We missed ya Fabac. Condolences to you and the hub for that holiday computer downtime experience. At least it wasn't the situation that allegedly can occur in Gnashville.... -
Happy Thanksgiving to all of you and your famiies
Bejeeber replied to didgens's topic in General Board
Tell ya what, I'm beyond thankful for the buncha nutcases here putting our clusterheads together and helping each other out. Would it be rude to take a moment to single out one of our inmates as a prime example of someone whose tireless rescue work I'm thankful in triplicate for - namely CHfather? If so, I guess we'll just have to color me rude today. Heck you're all indispensable as far as I'm concerned, and when I start trying to name folks like DiamondMaker, Spiny, Jeff, DD in Okieland, Aleyoop, MG, Didgens, Ricardo, Fabac, K-Girl and her jumping jacks...oh the sentimental list just goes on and on, this was just for starters, I probably shouldn't have even attempted to go there. -
Funny, I never see the show Jeopardy, but this evening it was on, the subject was "continents", and the question was something like "what continent has a population smaller than that of the state of Texas?" Answer: Australia
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Man, Texas is like the CH Capital of the World.....not that that would exactly make for a great tourism marketing slogan or anything.Â
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1st Post - Landed here looking for help - Please
Bejeeber replied to Phreon's topic in General Board
Yes, Fabac's words of caution bring us back to DM's question about whether you've tried high flow 100% O2? It has become the preferred abortive over imitrex for a really high percentage of those CH'ers who've tried it, it allows us to detox from imitrex prior to busting, and is a good side effect free replacement in general. Check out the info CHfather has put together on it: https://clusterbusters.org/oxygen-information/ -
1st Post - Landed here looking for help - Please
Bejeeber replied to Phreon's topic in General Board
Yes the cost of the injections is ridiculously high, there's just no denying it. Since 1999 countless CH'ers have been employing a supply conservation method that does cut the cost, supply issues and side effect risk by 1/2 to 2/3, while the doses remain highly effective. This is it: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 -
OOH Spiny is going all citizen scientist guinea pig with this! It's OK to change your mind and back out though if you reconsider, Spiny. I'd say probably/hopefully so, it sure is encouraging. Wow that's one of the more highly personalized things about CH behavior, and I don't know that anyone's nailed down a one size fits all answer, but if I was experiencing attacks daily, then found myself going a whole week without an attack, I'd be feeling pretty confident that the episode was kaputsky.
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1st Post - Landed here looking for help - Please
Bejeeber replied to Phreon's topic in General Board
I'm going to re-ask CHf's question (below): ..since your neuro sounds so lousy. Usually when it is reported imitrex doesn't work for a CH attack we learn that the slow acting tablets have been prescribed, not the fast acting injections. -
Research on new tryptamine option
Bejeeber replied to Lieutenant2's topic in Research & Scientific News
I read the FAQs, and have downloaded them for future reference. Color me intrigued and appreciative. -
Just adding to Spiny's idea about caffeine pills - taurine pills are available also, and could be taken at the same time (I haven't tried this). I can imagine a CH'er holding some caffeine/taurine powder under the tongue for fastest absorption (I haven't tried that either, maybe I should only throw ideas out there that I or someone has actually tried. ) With your temperatures there, if you're inside when an attack hits, I would definitely be set up to be outside within seconds and hyperventilating that freezing air in through the nose, as DM has suggested. This cold air therapy has been shown to be an abortive for some of us some of the time.
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The beer test is when a daring CH'er will have some beer to confirm whether they've completely busted a cycle. If not they'll likely be in for a monster hit because alcohol is probably THE NUMBER 1 most common trigger. I learned this the hard and uninformed way. Doctors unfortunately generally don't know that they should prescribe high flow, 100% O2, which tends to be much more effective. My guess is that you received low flow, rebreather O2. Kudos to your doc though both for diagnosing and for whipping out the O2 right away. That reflects an uncommonly high level of competency. You're on the right track, absorbing the critical knowledge now, and you'll want to continue to hang around here aplenty, because there's plenty to learn.
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Hi Rudy - I know there are all manner of ins and outs of drug testing, such as what types of substances are tested for, which are not, strategies for timing a bust in order to have a substance cleared from the system, etc. I hope you can get some good info on that, maybe right here. Meantime I doubt (but don't know for sure) you'd be risking anything with a weekend Rivea Corymbosa (RC) seeds bust. Info on that can be found at the following link, although when a starting dose of as low as 8 seeds is mentioned, ignore it, 40 RC seeds would be a more reasonable, and IMO still conservative enough, starting dose: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974
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Cortical plasticity in episodic and chronic cluste
Bejeeber replied to cluster's topic in Research & Scientific News
Cool cool cool (and inspiring) CHF, thanks. 8-) -
I see you're keeping the link handy now DD. 8-) ;D
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Sorry to hear of your chronic headache gartozi, but glad to see you are able to still look on the positive sides in Bonnie Scotland. I'm just going to offer my personal interpretation of what constitutes a CH shadow: It is localized in the exact same spot as a full on CH attack would be (for me that is right behind the right eye), but is relatively low intensity and can linger for a long time. If I were to have pain in another area of the head I wouldn't consider it to be a CH shadow. But hey what does it matter what I call it when the only thing that really matters is just getting rid of it, and I hope you find an effective way to do so toot sweet. 8-)
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Hi ssi, Glad to hear your cycle is history, and I'm in agreement with the comments of CHf and DiamondM. For prevention of CH, this internationally airing National Geographic segment, featuring our friend Dan/Hipshot, gives insight into one treatment discussed here a lot ("busting"), which a large and constantly growing number of CH'ers have been successfully adopting: https://www.youtube.com/watch?v=qFuL7pcShDk
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You guys ROCK! Sorry. [smiley=happy.gif]