jon019

....well, it's a given Shaun is quite batty, but as for myself...i am perfectly normal since the transplant...

...ha!...plenty funny padre! you so far ahead of me i can't see your dust...i just throw some once in a while...

...ok, speaking for myself, not the "good father", but...1) cost, they lease it to you at ridiculous price, and its an ongoing scam 2) it aint pure O2, something like maybe 85-90+%, we desperately need PURE O2 3) warm up time!? golly that's a killer...every minute you delay oxygen reduces the effectiveness hugely...if it even works at all after any delay. 3) flow rate!?...if it aint enough to keep the bag filled for next breath it's nearly useless...to get more than 10 lpm ya need TWO of them linked....sheesh, try paying/travelling with THAT! 4) speaking of travel, i went EVERYWHERE with e tanks, including a job for 30+ yrs...ya gonna have severe limits with a concentrator. m60 for home, e for travel and backup. 5) they run hot...over heating is a CH symptom, why add it to your room? 6) can ya tell how i feel? it saddens me that some clusterheads have no option thru insurance or an ignorant/greedyO2 shop. if its all ya can get...God bless, and i hope it works for you...it does for some. the likely failure sadly also convinces some WRONGLY to claim the WORST comment a clusterhead can make w/o ABSOLUTE certainty..."oxygen doesn't work for me!" saved my sanity, perhaps life...starting in 1985... ...as for verapamil...i used successfully for 7 yrs...only stopping when i dialed in the oxygen and energy drink and a form of the vit D regimen. nothing less than480 mg/dy of immediate release was effective...over the yrs it seems to be the reported sweet spot for many clusterheads. in high cycle i went to 1000+. as chF said...80 is pointless... j

...if ya want a direct tube to breathe through, any mask will do by just pulling tube connector off mask...cutting off if ya hafto. i couldn't do because it was uncomfortable and the pressure of the mask, CRAMMED into my face, actually helped. just be sure to plug/squeeze nose so you are getting pure O2 only...which is critical.... ...btw...if you got a typical nonrebreather be sure to tape shut those dang holes on the side...a slight lift off the chin to exhale worked best for me... j

...hola!...welcome... jonathan

....OXYGEN, an opti-mask nonrebreather mask or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination.... ...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train... best jon

...NOBODY who hasn't been "hit" understands...it's just not possible...and not something i ever held against.. ....the best HA specialist i ever had listened to my description: "pain so bad you can't believe its possible to survive, the worst ones...forgetting to breathe, i can't count the times i just wanted to die". she sucked in her breath like at least she partly understood. then said, which made me cry..."i treat this VERY aggressively, which she did!..probably too aggressively. but we figured out OXYGEN, Zomig ns as last resort, and (personally) energy drinks which she forbid because "we just don't know enough about taurine" (i did anyway, just had to).... ...but YES!...we are our own best, and frequently only advocates. what i've learned here and ch dot com have been life savers... best jon

...yow!!...citizen science meets Yale....that's so cool i got frostbite....

...an oxygen tank w/o a regulator is just a chunk of metal. for me an e tank lasted about 2 aborts and maybe part of a third, so yes, ya need more than 1. before m60's were available i always had 6 e's. get yurself a regulator (Amazon, or O2 shop, but that'll cost too much to lease or buy from them) and a deal with an O2 shop to swap out empties. an ABSOLUTE necessity is a non-rebreather mask, the best is from the catalog link at clusterheadaches.com. ask us more details please, i'm not quite sure where you are in this journey... best jon

....i always had 4-6 e tanks in house...used mostly for travel and work...for home it was 1-2 m60 which lasted at least twice as long as an e. regulators for each (different) can be purchased on Amazon and i bought 25 lpm versions tho i usually only needed 12-15....

....good news and bad news...the worst hit i ever had (an 8 for 6 hrs that scared ICU nurses) was because a f*****g anesthesiologist blew me off when i begged him not to use epi. the good news: it did NOT trigger a cycle....

...i was also lucky in having an understanding employer who recognized i needed some accommodation. i also recognized that my situation might cause added burden to colleagues.... so to "compensate" their wonderful understanding, i made myself as indispensable as possible. crap project? i'm there, OT or holiday work?, got it. extra "jobs" beyond normal responsibilities? yup. no one, and i mean no one, ever heard me whine or complain. tough job made tougher...but that's what CH does. totally upfront with direct supervisor, theirs, and HR so if you are not as lucky as me they cannot say: we didn't know when they (try to) fire you......

...i have no comment on vit C for any claims made...just don't know! i will say, as a former microbiologist, that i've been sick (flu/cold/virus) only a couple of times over 45 adult yrs. it's not complicated....wash your hands frequently (at least thoroughly once/dy), DON'T touch your face, if you touch public elements (door handles, elevator buttons, railings, etc) sanitize your hands, avoid as much as possible obviously ill folks, be aware public gatherings in enclosed spaces require diligence to above (go, enjoy, just take precautions), cover YOUR mouth/nose when someone sneezes, refrigerate foods before 2 hrs exposure to room temp ( thats a food safety deal). i'll stop now...no need for paranoia...just remember: wash/sanitize hands, don't touch yur face....

....re disability, vet or not, it is critical to list any comorbidities...the award decisions can be so arbitrary that one seemingly insignificant one may be the key to success. i got disability for a serious but non fatal illness partly because my doctor listed the potential mental health issues caused by the disease that we had discussed. the SS approval letter specifically noted these potential effects as having significant weight in determining qualification. i will be forever grateful that my PCP had documented EVERYTHING...and was willing to sign off on the need for disability. find an advocate doc....its JUST like we need for CH.....

...my favorite O2 shop tech gave me a bag of these and said "don't be afraid to change frequently, you don't want failure at the worst possible time". same dude "loaned" me (wink wink) an m60 tank reg (different than e-tank) which i still have..."return when you don't need anymore" he said. for a clusterhead that meant never. also have several spare e-tank regs bought from Amazon...Medline i think...never had a single problem. ALWAYS have a spare...it's really cheap insurance that you won't need until you REALLY do.

...the first question i'd ask is: what funding? cancer research, among others, has already been cut. we have never experienced funding for CH anything besides minimal...now?

....if you're taking a statin (e.g. Atorvastatin) for cholesterol control a typical side effect can be leg cramps. boy-howdy those 200AM cramp-athons will get your attn. yes, i take Mg, but find that skipping a statin dose now and then is muy bueno. your doc may disagree...so discuss it....

...i waver between thinking these are caused by CH vs being part of the whole package of a "wonky hypothalamus"....

...cool beans Craigo! ...as CHfathers's citation(s) demonstrates, don't be leery of older studies(not that i doubt you!). i distinctly recall discussions and papers demonstrating higher incidence among clusterheads of OCD, smoking, alcohol abuse, and mental health issues, etc...and i'm talking 20+ yrs ago. ..will certainly take this test but just by subhead alone, i know i'll score off the board

....alive but active as a see-ment garden (or pond)

...personal experience for me was 1500 mg taurine minimum to be effective (as energy drink ingredient...never tried as a supplement) best jon

...this is one of those "it seems like it should work" deals. ...the old CH board (clusterheadaches dot com) sadly nearly forgotten and increasingly hard to navigate (a cursory search found nothing) ...used to have a discussion on this on occasion. nobody ever reported success, and the consensus was "it doesn't work". it always seemed a bit of a knee jerk "no" to something different to me when brought up.... and perhaps some were disinclined because of that... ....we really don't know enough about how O2 works for us to dismiss out of hand any method. whether this could work or not i know not...certainly worth the try. i'm guessing...just like adding caffeine/energy drink to O2 usage enhances effectiveness for aborting a hit for many, perhaps some adjunct like that would be effectiveness enhancer/enabler for continuous low flow prevent.....dunno, but carry on..

...just remember, one must ask politely

...OXYGEN.....