jon019

...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.....

...old saying...Dr B i believe: if you are not sure a med is working...it's not! but, when you say "cans" it sounds like that faddish and worthless "Boost". you need at least 15 lpm, a proper non rebreather mask, and a breathing technique that works for you. at best an O2 abort takes 5-8 mins...a boost can gives less than 1. you ALREADY got the breathing technique which is a highly effective one for many and the type advocated by the expert on O2. get thee some tanks (not a concentrator) for pure oxygen. and to paraphrase @CHfather, if the O2 doesnt work its one more diagnostic clue to rule out CH. it sounds to me that either you have a very odd type of CH or one of the others he mentions.. best jon

..LC...as the saying goes...we hate the reason you are here but glad you found us...welcome. best jon

...the inject into another container then draw from that is what i would call a hack of desperation...like when folks run into issues hacking the statpens (seems its harder than it used to be with new design). what you REALLY need (besides OXYGEN) is the 6 x 0.5 vials of Sumatex/Imitrex. using insulin needles you withdraw 1/3 of vial which is 2 mg med....this works for most of us. you can always up the dose as needed. i could get 15 aborts per script with a much lower chance of rebounds. since you are already getting the auto injectors its just a script change. periodically this med in this form has shortages...i just checked and its available in half a dozen pharms in my area. call around ...last time i checked Amazon Pharm did not carry...but that was a while ago.... ...the D3 regimen is a near must...us seniors are low in D and it is critical for many health functions besides CH... ...now then, ALL THIS (except d3) CAN BE MOOT once you get OXYGEN. saved my sanity, perhaps my life starting decades ago. absolutely the best abort for most clusterheads when used at the right flow (15 lpm to start), right non rebreather mask, and a breathing technique best suited for you....and don't let 'em pawn off a concentrator on you...gotta have pure O2 and enough flow which they don't. ...get thee OXYGEN brother!! best jon

...i find it def sleep related...but kinda opposite here....which tells me same ballpark! ungoverned would sleep 16-20 hrs straight....always a fight not to exceed 10-12 (especially escaping pain) now. CH was a literal nightmare screwing endlessly with sleep. wonky hypothalamus fer sure.... ...thank you...i second "Fascinating"!