Bejeeber

Yep, youbetcha, so I wouldn't be surprised if the doc's diagnosis there is right on. Heck if anything could bring on ye olde panic attack, I would think it would be the CH ordeal you were experiencing! Well I and some others who've had 'em for 30+ years have noticed increased severity, plus longer lasting attacks and cycles, but some of us have been lucky enough to have also benefitted from longer remissions. This can become a moot point when the busting is preventing entire cycles (plus even those who haven't yet gone into full remission via their busting efforts tend to report lessened severity). 8-) Sounds like you just wrote yerself a prescription for an O2 rig at home, and toot sweet! 8-) (whether it be thru a doctor, or welding O2 without prescription). Regarding Argentine dosage: Let's let some more knowledgeable headbanger(s) around here answer that one definitively. I think, but am not positive, I've heard it said that the strain, whether it be Agentine or whatever doesn't make that much difference, in which case 1.5g to 2g powder dry per busting session could be your ticket. Someone in high cycle as you are now often needs to do multiple busts 5 days apart to completely extinguish our pesky McBeast O'Buddy.

Yeah thanks MG - I've saved that info and chart to my cluster files where I go first if I need to try something different.Â

It doesn't sound like CH to me either, but regardless, there's something valuable to be learned from veteran CH'ers here, and that is don't just see "a neurologist", as in a garden variety neurologist. Definitely hold out for a headache specialist type neurologist, as the garden variety sort typically have woefully inadequate training regarding headache disorders, and misdiagnosis sux.

I like what CHf has said - but hey I always like what CHF has said. 8-) Conversely I HATE hearing about your current O2 situation Vickie so I'll pipe in too. I'm afraid I have historically been the same way, 25 LPM isn't enough. I also learned that this need for flows above 25 LPM is fairly common. If I had my last cycle (back before I was busting) to do over O2-wise I would've gotten a demand valve system. When you get into the high flows, sucking the O2 tank dry can be a serious, recurring issue indeed, but the demand valve only releases the O2 on inhale, shuts completely off on exhale, conserving the O2 in a major way. Plus it'll simply supply as much O2 as you can inhale, period, with no need to mess around with LPM settings and krap. If for some reason you can't get the demand valve and have to keep investing in cruder regulator/mask systems, well with advice from other CH'ers I was able to cobble together a rig using a 60 LPM flotec regulator (which I would often set to 45 LPM), and I replaced the reservoir bag on my mask with (I'm not kidding here) a 32 gallon trash bag that could handle my intentional hyperventilation. Crude, a hassle, inefficient and unsightly as hell, yes, but it got me plenty of O2.

I think it's a little Cindy. Good to see ya back here Mr. McDanBerry USA. 8-)

Dammit. And to make things even more complicated, it is commonly recommended to wait 5 eternally long, frustrating, stinking lousy days between doses! Something about the doors to the receptors slamming shut and it takes time for them to reopen. But hey they say the only rule in biology is variation, so maybe in your particular case 3 or so days could be enough? I sure hope so – an occasional individual has reported successfully pulling off the short 3 day thingy.

All I can think to say about that is WTF??!!, you've just described the worst of the worst case scenarios that I didn't even know was possible (or maybe I've seen this reported before but blocked it out of my mind).Â

Yeah that's a familiar quandary - I know when I've been in an all out assault mode on a stubbornly behaving beast I've gone for a "throw everything at it and sort out what worked later" attitude. In your currently PF state though, I think I might want to stick to trying one thing at a time. Oh Lordy. That could be the MOTHERLODE alright. :o  [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=thumbup.gif] [smiley=thumbup.gif] [smiley=vrolijk_1.gif]

Whose baby are you burping in this photo??!!

Tryto, that's one cool story. 8-) Isn't this just pure societal lunacy that we typically endure decades of damaging and ultimately ineffective meds before learning that nature has supplied us with incredible healing plants, right under our noses, and sometimes right out in the yard (or neighbor's yard)??!! Healing plants that indigenous peoples have been aware of for millenia. One guy on here had cattle on his property and upon learning of psilocybin's busting capabilities for CH, was able to just get up from the computer, walk a few steps outside his door, and pick some mushrooms for busting his CH. 8-) Speaking of vit M, a hyper-vigilant, ultra prepared approach could be to acquire a back up for your back up by starting to grow some vit M now.

Hello Joe, What they said. 8-) Busting (with substances such as Psilocybin or Rivea Corymbosa) absolutely works and can be said to be the most effective long term preventive option currently out there bar none. From my own case and what I've observed our fellow headbangers report over the years, I think it's safe to say episodic CH'ers tend to have the highest success rate with it. In fact it is generally SUPER EFFECTIVE for episodics, with the knocking out of entire cycles being commonplace. It often takes more effort (meaning more busts) for an episodic who is right in the midst of a high cycle, or for a chronic. The chronics have it the roughest dammit, and while some get beautifully longggg extended remissions via busting, others here such as Moxy, Ricardo, et al haven't had that level of success so far. :'( My money is on you finding much better results with the natural treatments than with what the docs have on tap. That's an easy bet.Â

Thanks b.g.! Man it's great to see the photos (but NOT great to know you were having to hit the O2 tank). This group shot that appears to be an "everyone hug Bob!" event is FANTASTIC - what a moment in time captured - and I think it should seriously be considered for prominent display front and center right on the CB home page:

Yeah thanks for the pics and captions Racer1, I just love the way Joe says hello, especially when it's posted on the internet. ;D Supporters tend to accompany their CH'ers to these conferences, so that can account for some of the boozin'.Â

That sort of thing does prove to be very difficult and expensive when trying to do larger scale trials to get a drug approved, with BOL-148 being a major case in point. This Bromo-LSD has been shown in small trials to be much more effective than the already very powerful regular old LSD for CH. Doses an order of magnitude higher can be administered, due to it's non-hallucinogenic nature. Nobody here has ever reported being able to actually get their hands on some for private use though as far as I know. I guess there'd be no reason for it to be on the RC market since there is no high associated with it..... In fact, I think any MINUTE now the latest updates on the so far frustrating attempts to get BOL-148 FDA approved are being delivered at the CB conference, which is underway this weekend in Chicago. The many million$ required for funding have been a real obstacle.

That sounds like a good new abortive plan C-Town, and if you can't get it prescribed for some reason, in the USA at least you can just get the same stuff from a welding supply without prescription. I think it'd be worth your while to get a high flow 100% O2 set up - I know that's what I need when I get to the point where the "weaker" abortives like Red Bulls plus vigorous exercise such as push ups aren't working. Also agreed with CHF's ideas for preventatives such as busting and D3.

Ooh super interesting stuff Libertas - to think these are currently legal in the UK (!!). AL-LAD and LSM-775 sure got my attention, especially this bit about LSM-775:

Y'all are absolutely going to be glad ya went. I just had to cancel my fights and hotel reservation for this conference - dumb things came up that prevent my attendance - but I sure was glad I was able to make it last year.

That jumps right out at me as something that could make for a particularly snazzy full on slogan.;D 8-) It at least makes for a great quote. [smiley=vrolijk_1.gif]

That's what I'm seeing too! YAY. Doug you are a total wizard of cyberspace. 8-) ;D

Interesting stuff, thanks Jorge. I found some of the statistics such as these pretty encouraging:

Alternatives To Drugs And Surgery "R" Us! OK I don't actually speak for the website or anyone else on the message board here, but I thought that would sound like a snappy slogan, because last time I checked, it is the primary focus of this message board indeed. 8-) Regarding the non invasive device - I imagine you've seen something about Gammacore. There is a ClusterBusters conference coming up real soon, would be so cool if you could attend, check this part of the agenda out: "Clusterbusters is pleased to announce the participation of ElectroCore Medical, the manufacturers of GammaCore. GammaCore is a non-invasive treatment therapy of vagus nerve stimulation. This treatment shows considerable promise for those with primary headaches such migraines or CH. Trials are currently underway in other countries and will be starting in the USA shortly. Mr. Eric Liebler and Ms. Jennifer Berman of ElectroCore Medical will make a presentation at the conference. Their web site is http://www.electrocoremedical.com" More conference details: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1377961953 This forum is also highly populated with folks such as myself who have gained tremendous CH relief from "busting", which involves ingesting plants well known to indigenous peoples for their therapeutic properties for thousands of years. These plants are easily more effective preventatives than any synthetic drug, as shown in research at Harvard Medical, et al, and have been tried and tested by a huge number of Ch'ers in recent years. Here's the catch: Some of them could induce a psychedelic trip. Certainly the ultra powerful CH killer psylocybin can, but the more recently adopted Rivea Corymbosa (RC) seeds do no such thing (well for me at least). Check out this Newsweek article on the subject for starters - I think it's a very good introduction, although it doesn't touch on the mild acting RC seeds: http://www.newsweek.com/2009/10/14/the-psychedelic-solution.html Also one of our members was featured in a National Geographic segment on this same busting subject. Unfortunately my link to a video of that is now broken, so maybe someone else will have a working link.

azzip, first and most importantly, sorry to hear you're a couple weeks into the dreaded CH cycle. I sure hope a beast crushing strategy will work for you really fast, or even has already. I'm not a moderator here or officially affiliated with ClusterBusters other than having been a long time active member on this message board, but I think I can say that the more someone hangs around here, the more they see how uncommonly civil and friendly of a place it is. One member ridiculing another's viewpoints is practically unheard of, which makes for a great environment for discussions and sharing of often critical info. Personally I wish I would've avoided getting involved in exchanging some flame posts (when I've been in cycle / on some sort of behavor modifying CH med) on a couple other forums. For one thing, it has become some kind of absolutely inviolable law of the universe for me that if I get in a hostile exchange with someone online, I WILL absolutely end up meeting them in person, and that can sometimes feel a lil' AWKWARD. (BTW - I've met the OP in person and he's a super good guy )

The original Dr. Kudrow, Lisa's dad, had CH himself (last I heard, he's retired now, and his CH has burnt out).

Good to have you bringing your expertise here Libby. OK maybe there's a better nickname for you than that, but it's I was coming up with at the moment. ;D Hmmmmm...maybe Libster or Libsky....... ;D

Ha! Double whammy with the ice cream mushroom bars! ;D Would that really be an enjoyable flavor though??!! As someone who has had success aborting non high cycle CH attacks by breathing freezing air through the nose (with nose up to a blasting car air conditioner vent, or just outdoors in winter freezing air), I can imagine the new medical contraption covered in that first link working for some CH'ers - if the attack is caught at onset.