Bejeeber

At the conference there was mention of a CH study coming up where CH'er volunteers who are in cycle will have an attack induced with nitroglycerine. Then half of them will be given a placebo. I don't know that I could bring myself to volunteer for a study like that, but whoever does oughta be awarded several dozen congressional medals of honor IMO. Â

Hi Ted, glad to see you've been well advised. OK so your cycles are lengthening and so are your remissions. That is actually a fairly common pattern that can develop over the decades - many here (including myself) have reported the same phenomenon. If I were you I would consider busting in order to prevent future cycles altogether, plus for the remainder of this cycle go for that aforementioned high flow 100% welding O2 as a replacement abortive for the imitrex. Not that I'm as down as some are on imitrex when needed in a pinch for relatively short cycles such as yours. I too get zero side effects from imitrex, but that's certainly not the case with everyone. I personally feel it's unlikely your imitrex usage has caused you permanent harm or serious danger. For those "too late" wake up hits, one strategy is to have a forceful "I WILL wake up at the onset of any attack!" talk with yourself before bed, have a solid plan to bolt out of bed immediately upon awakening and hit the ground running, then have your most powerful abortive - a 3 mg injection - set up and ready to go for immediate use. Yes. Cold air therapy as an abortive can work for headbangers with your sort of profile. You have to catch it at onset though. RUN to the car, turn the car on and BLAST the air conditioner, put your nose right up to the super cold air coming out of the vent and breathe deeply, hyperventilate even. An abort can potentially be had in 10 min. or so. 8-) For some exercise is a trigger (and actually so is cold air, dangit). For the rest of us though, it can be an abortive. I'm talking a blast of super vigorous sprint 'til you drop exercise (if this type of exertion isn''t a health threat for the particular individual). Texas huh? Have you seen the internationally airing National Geographic segment about cluster busting featuring our Texan forum member Dan? here it is: https://www.youtube.com/watch?v=qFuL7pcShDk

Well it's a bit complex and multi-facted for my pea brain - I'm glad people are trying to figure out the "why" of CH, as I go into overload just with the "how" to snuff it (realizing though that why and how can be related!). So I'll just say that while there can appear to be a real correlation between meds and increasing severity/going chronic etc., I personally retain a wee bit of reservation there, especially when headbangers (understandably) suspect imitrex for worsening their CH. Ya see I go back to before the stone age, and had 13 or so years of episodic CH experience when there was no imitrex to be had. And danged if my cycles weren't getting longer and more severe during that pre-imitrex era. So far I also fit a certain, not uncommon CH profile where yes, over the decades cycles do extend and severity ramps up, but remissions also lengthen, despite pharmaceutical use, and eventual complete CH burnout is a real possibility. Remission times can expand exponentially, as mine have since having adopted heavy imitrex usage (prior to my successful busting). Granted, this is not the most common profile among members here, as there is a disproportionatley high percentage of chronics here compared to the general CH population, but I still have seen many members report this type of experience. Also, regarding stress and emotions as a cause for CH, yes penty of CH'ers have been afflicted since they were babies. Sleep: Man I was a good sleeper - I was like a pro! - up until around the time my CH started, approx. age 22.

Below is a most recent quote from Hollywood Dan Hipshot on the subject - I think it's highly pertinent, and if I was considering a nerve block I know I'd be looking into the facet thing: "Occipital Facet Blocks DO work for me 100%. Months of relief. This is NOT a run of the mill occipital nerve block. I am sedated, strapped down and the shot is done under fleuroscopy. It is actually in the lower part of the neck. I highly recommend it. I can't explain it any other way, IT WORKS FOR ME" It came from this thread: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1405482794/11

I'm liking this infusion of new blood/new contributors we're seeing here post CB conference. 8-)

Hey Tim, I was there, didn't get a chance to meet you, but enjoyed your talk. [smiley=thumbup.gif]

Well John BeBee is a hero in so many ways to us clusterheads, so it's not exactly a surprise at all to hear how he rushed to your aid! AGREED. From what I've observed and experienced bumping up to higher flow can make the big 'ol difference. With 15 working for you sometimes, I bet the higher flow will REALLY work. 15 LPM, and even 25 LPM in high cycle, doesn't do jack for me, but 45 LPM does, so especially after seeing BB's O2 demo and talking to Dr McGeeney on the high flow subject, I'm thinking you'll be a prime candidate for the high stuff, you may want to consider a regulator that goes to 45 or so. 8-) That whole driving home experience sounds like something out of a movie - a very disturbing movie - between the 4 hits and the mind blowing close car crash encounter. Man it's great to have you on this forum now Michael. This is a genuine boon for us. I was glad big time to get a chance to talk to both you and your ma , and get some some of your insight on the hemp oil CBD subject.

HATE the thought of you being hit while driving home LadyLÂ , but agreed with all your sentiments about the conference.Â

Well she sure sounds like someone who is really nice, concerned and well intientioned, that's for sure. If she can go ahead and order some spores, then next time she brings over some cookies, also drop off a dozen grams of cracker dry mm, that would be a super sweet gesture. ;D Or best yet, she could ask around among friends and locate some pre-grown mm right away.Â

Color my previous "no" as definitely 100% WRONG now, thank gawsh. There is forward motion again with BOL-148, as revealed on 9/20/2014 at the clusterbusters conference. There will be the formality of toxicity tests, then a plan for initial trials in Europe. My impression was that "if lucky" the program to bring it to market it could take 5 years or so. No ironclad guarantees were issued regarding whether the efforts would ultimately be fruitful. Sorry I didn't retain more info about it, but I believe there is to be an announcement this monday 9/22/14 at http://www.savanthwp.com// The same company is working on a non-hallucinogenic version of ibogaine: http://www.savanthwp.com/SFBusinessTimes_Jan2013.pdf The only downside to me about any of this is that animal trials will be involved. Sorry, but IMO that is completely unnecessary and uncalled for with BOL-148 (it may be required by the FDA though....?)

Day 2: LORDY, 'twas as inspiring as all git out! Bob Wold mentioned in closing 4 of his favorite things that had transpired. 2 of those that I remember are these announcements: Personal note: I was fortunate to connect with a whole lotta CH'ers and supporters and am beyond grateful for that experience. Undoubtedly there are rowdy headbanging conference folk doing it up with some saturday night revelry as I type this. 8-)

OK, well let's add Racer1 onto the long list of luminaries who've had to cancel at the last minute, DANG. Fortunately it's still record attendance, and day 1 has been great and energizing. Well it was for those not on the receiving end of some CH hits, as THREE people in close proximity to me were as I sat during presentations. Dr. McGeeney says the potential new treatment for CH he's most excited about is the anti-CGRP antibodies that pharma is racing to develop. Well that's the way I remember that part anyway - anyone please correct anything I may have mangled there. BB subbed for Bill on the O2 breakout and did a fantastic job. Here's one idea I got from it - staying on 4-6 LPM with a nasal canula, and sleeping with it on, after a high flow abort of a high cycle wakeup hit, can potentially keep that next hit from coming back an hour or so later. I didn't notice anyone stepping in for Racer1 in the photo snapping dept. This up to the minute update from your conference correspondent BloggerMcJeebs.Â

Hi Formby, I just have a couple quick thoughts as I'm at my iPad before I have to bolt out the door here: RC (rivea corymbosa) seeds can potentially bust CH but without the kind of psychedelic tripping concerns associated with mushrooms. When o2 stops working, upgrading to higher flow, 100% O2 usually gets it working again! There's a specific vit D3 regimen that even skeptical ol me has to admit can be surprisingly effective for some. Are the attacks coming on both sides, but trading off, one side at a time? If they hit both sides at one time, well there are other conditions with a CH like intensity (and as far as I know, may be concurrent with CH) that may respond to other treatments. Hang in here, you've come to the right place.

Oh OK little pocket pal yorkies - I bet they're good for helping keep your spirits up. Plus you probably don't have to walk very far with them to give them lots of running exercise. LOL about the plant seeds. If she has any cows in her backyard, maybe you can ask about picking some mushrooms back there. 8-) One guy on here did have cows in the yard and realized he only needed to step out there to snag some busting supplies. [smiley=vrolijk_1.gif]

OK, first of all, that was FUNNY Fabac. ;D I think the way you dealt was ingenious - hard to think of any way better'n that. She shouldn't be coming after you with a coke and some aspirin any more. Well I pray she doesn't while you're on your walk (vicious dogs ordered to ATTACK).

Thanks FG, I'm also interested in what a president's reception is, but knowing where and when is definitely good info too!Â

Ha, I thought I'd try my hand at some Potter style brevity in a reply there. That "no" is just as far as I've seen here or heard, but I'm not exactly 100% in the loop or a source of late breaking info for BOL-148 developments.

No. [Edited due to the fact that I was WRONG]

Can someone inform lil' 'ol ignoramio bumpkin me what exactly a president's reception is in the case of this conference?Â

Wow, that just rocks like no other - you made this, didn't you? [smiley=thumbup.gif]

Agreed, and in my opinion, none higher than CHfather, who I'm very glad to see just offered his typically super helpful info tailored to your specific situation Luigi. There are large numbers of members here who have adopted busting (and also the D3 regimen) with success when decades of pharmaceuticals have ceased to work for them, only to wish they'd known of these alternative approaches and been able to pursue them first. Welcome. Here's a Newsweek article on the subject of busting which I think is a good one: http://www.newsweek.com/treating-cluster-headaches-psychedelic-drugs-81473

Oh no no no no NOOOOOO! :o

I like that idea! Then there's Giuseppi who was extremely successful with carrying an E tank with a demand valve in his patrol car with him everywhere he ummm.....patrolled.....and would pull over real quick whenever a CH was about to hit. Of course if you're navigating winding mountain roads maybe pulling over real quick isn't always such a realistic option....

That sux. Ooh that sounds like it might not blow - thanks for the hedzup.Â

My experience with Stadol supports Potter's fairly brief commentary. This synthetic opioid didn't work for me, and when I've seen the subject come up I don't recall anyone reporting having a successful experience with it for CH. I think of it as being one of those buncha drugs that was being tried out for CH 20 + years ago, but has mostly fallen by the wayside now due to it's failure.. So I'm sorry Spiny, but this one sounds to me like a swing and a miss form your neuro. :'(