Bejeeber

Well big 'ol kudos to the NP for going the extra mile like that! [smiley=thumbup.gif] It would be great if we saw more of that sort of thing happening - there certainly would be a fewer misdiagnosed CH'ers out there.

I figure the NP is giving you critically important instructions for maintaining your general health, which you should definitely follow, but I think a lot of us haven't really seen too much of a correlation between that stuff and CH (disclaimer: every once in a blue moon we do hear from a CH'er though who feels a better diet/lifestyle/exercise has helped them). Some of us find that an especially stressful event can trigger an attack, but as you've found, relaxing times in general often coincide with a higher CH cycle. :-/ My guess is that the rank and file CH'er and CH supporter vets on this message board (like Bonkers/Ron) actually have more of a handle on these things than your NP does, since this isn't exactly her specialty.

Wouldn't THAT be fantastic!? And please keep in mind that the very most effective time to bust is when you're NOT in cycle, or are at least in a low part of a cycle.

Those look fecking cuckoo and I bet they taste fecking great! Astounding that they grow wild right in your very own private woods! You need to let some cows walk through there. ;D

YEAH!! That's fantastic news LJ! Grams. 8-)

From observing the posts of other CH'ers it appears to me that there's an occasional individual who can get some benefit from it, but more often it's an actual trigger to be avoided.

Yes, that was my experience with Blue Cross at least - I was flatly denied - and I've seen others report trouble there. I've also seen others report that welding O2 is kinda cheap. They certainly can, yep. Do the CH attacks make your droop? Absolutely, it's a common hallmark symptom in fact. Yay Crystal! And you've hopefully seen the bit about the advisability of being detoxed from the meds for 5 days before busting?

Either via a Dr. prescription, which you may have to "beef up" by acquiring your own high flow regulator and non-rebreather mask (or ideally a demand valve system), or by just bypassing the Dr. and getting the same O2 from a welding supply place without prescription as many CH'ers do. They're Rivea Corymbosa seeds, known for their healing properties for millenia by indigenous peoples. You can legally order them online and possess them, but if you yell to a cop "hey I'm ingesting RC right now!" there's a technical illegality there. The cop might think you're just drinking RC Cola though. ;D Many CH'ers use them with success, some don't get relief 'til they try mushrooms. RC is milder acting - if you take it before bed you'll likely only experience the side effect of improved sleep. Iamshamn.com is one of the popular sources. More info here, but the suggested first dose of 8 to 10 is way too low IMO - I'm more about 25-50 for the first dose: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 I guess if it doesn't explicitly say headache specialist when you look 'em up then they're not. The C word! I think plenty of episodic CH'ers have gone into a potentially "permanent" remission with regular maintenance busting every 2-6 months or so. No actual cure is known. Chronics certainly have it tougher, with a more likely busting scenario having them going into extended remissions and reducing severity, but there may still be high cycles where attacks that need to be put down with O2 can break through.

Smart smart smart you are Crystal for seeking out info on your own - and you came to the right place! 1) High flow, 100% oxygen (not low flow rebreather O2 as still commonly, erroneously prescribed by doctors) is an effective, non toxic abortive for the vast majority of us CH'ers. Info here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 2) If you're going to take toxic drugs, then yep, vicodin's a joke, and Maxalt tends to be too slow for CH. Imitrex injections (and inhaler) are a much more effective abortive, but O2 is a much healthier way to go and it will allow you to detox from the drugs so you can (hopefully) prevent your CH with what nature has provided us, literally growing right at some of our feet, and more effective than any prescription: 3) Of course I'm talking mushrooms and/or RC seeds here, and so many of us long time CH'ers (30 + years for me) who have tried every drug and then some, have gotten their lives back with busting and concluded this is the best way to go. 4) If that neurologist you see this week isn't a bonafide headache specialist, proceed with extreme caution, as garden variety neurologists often, notoriously, know nothing about treating CH, but in their arrogance pretend as if they do, and proceed to unleash all manner of harm. Lots of good stuff to learn about, and a much brighter looking future for you now that you're taking matters into your own hands.Â

Why is it that sometimes it's the most horribly inappropriate comments that cause me to burst into the loudest genuine LOL'ing??!!  ;D ;D They say laughter is good for yer health, so thanks Ron for today's health booster. ;D

EXCELLENT. I can only think up 2 ideas for possible additions: 1) If there's away to mention Harvard Medical's involvement in the research of hallucinogens for CH, I figure that association can lend an extra instant helping of credibility (well for Americans anyway - if this is strictly a UK publication, not sure?) 2) The opening Samantha story really grabs the reader - if there's a way to close the article with a final thingy about Samantha, for me that would put a nice button on it. Of course Samantha is YOU, and since you haven't just yet had the extended complete remission success that luckier others have, I suppose it could be tricky....

Well I think this guy on that board experienced CH for sure:Â "I had them for a 3 year span starting when I was 20. My grandpa attempted suicide twice from them(luckily was found both times) and my uncle was successful with killing himself. My mom feared I would do the same and kept a close watch on me. There were many times that if I had a gun available I would have killed myself to get away from them which is the complete opposite of my normal happy positive attitude/outlook on life. This isnt a crappity smacking migraine, its hell for hours at a time 3-5 times a day(for me at least). Im just happy they are gone but just typing this scares me."

AGREED, with several exclamation points!!!

Kudos for going whole hog with the demand valve! If you're thinking this is no time for screwin' around I can see your logic! I've seen the CH.com O2 guru Batch state that a bubbler shouldn't be used with anything over 15 LPM, and with a demand valve I imagine you'll be averaging more than 15 LPM, so I believe I would skip the bubblage festivity. I was all concerned about the bubbler routine at first too, but found (and read) that even at high LPMs the respiratory system just tends to just adapt and the nutty bubblin' ain't really necessary.Â

Both Bobs are the man in fact. Um, if 2 Bobs can be one man...dangit I cornfused myself again. I hope this doesn't freak Hipshot out.Â

Bob da man. 8-)

That's pretty much the same wavelength I've been on. Aw c'mon, guano is delicious! ;D

Hey DW, Good to have you here and you're certainly not the first one to have realized that youthful psychotropic use was inadvertantly a likely effective preventative for their CH. I hope you'll keep us apprised of how your upcoming busting goes.

Hi Larry, There's a fresh topic started here just today that I think goes a long way towards encapsulating what a lot of members here have experienced - I bet it would make for some good first reading for you: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1332352280

Some ideas for upping the O2 effectiveness: 1) jump to a higher liter flow, either with a demand valve system or a minimum 25 LPM regulator 2) drink a caffeine + taurine containing energy drink such as Monster or Red Bull right at onset 3) Consider the D3 regimen which is purported to, amongst other things, optimize arterial PH, enabling O2 to be more effective: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Wow Salander that is one huge indictment not just of the current state of the medical profession, but I think of modern civilization in general, the way we've bought into the technologies and the chemicals and lost sight of how nature is offering more effective treatments literally growing right at our feet. Treatments that the indigenous peoples knew all about. Others who are aware of the current best info for growing mushrooms will hopefully be along shortly to advise you. 8-) I hope you can grow mushrooms without too much fear of serious persecution (my guess is that here in the US, an otherwise law abiding citizen with a good lawyer and a reasonable judge would likely receive a suspended sentence and not do jail time for growing mushrooms for CH). If you feel mushrooms at home are too risky, I wonder if you could look into taking periodic trips to somewhere with low/no risk for busting as a less extreme alternative to actually relocating? At one time Tortola for example was mentioned as a legal place for mushroom busting (I don't know if the status there could've changed in the meantime). Here's a link to that topic: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426

Aughhh it's been for-fecking-ever now since we've seen CHf on here. The darkness, the interminable darkness. :'(

"Not an Advil situation" - good quote '61! Thanks for takin' it to TV and congress! [smiley=thumbup.gif]

Oh. Woopsy. I missed that part. :-[ Purple bowler hats for everyone!?Â

The purple thingy sounds well intentioned and all, but I'm with you Jeff, let it stand specifically for migraine, let's not go lumpin' the CH and the migraines together too much. Black arm bands are for general mourning, so that's already taken. Hey maybe we should go for black headbands. OK maybe this ain't the best time even for gallows humor, but they would look pretty cool - I would've liked to have seen Dan sportin' one on his Nat Geo show. OR you know what else is newly considered cool in the Jeebs universe? Black Bowler hats like ya see 'em donning in Downton Abbey, and in the René Magritte paintings with the dudes with apples in front of their faces. ;D Let's all wear those 24/7. Or at least to the Clusterbuster conference.Â