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jon019

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Everything posted by jon019

  1. ....you want anything with minimum 100-120 mg caffeine and 1000 mg taurine (thought to boost caffeine, some are intolerant). do a google search of ingredients. red bull was the first and is highly advertised (so is expensive) and actually lower levels of energy ingredients than most. i haunt the grocery outlet stores and get brand name product for less than $1 ea. the 2 oz varieties way portable, easily/quickly downed, minimal sugar (reg versions have OUNCES), less of the typical gacky taste... ...totally agree with CHfather re O2 concentrator...not pure O2, not enough flow, EXPENSIVE (usually a lease), suspect older versions even less efficient as they heated up with use....
  2. Hi AC...welcome... ...i know it's counterintuitive, but 3 lpm (especially mixed with room air) can and does use more oxygen (with lower success rate) than much higher flows (recommended 15-25 lpm). i could kill a hit in 5-15 minutes at 8-12 lpm provided i started at the first sign of a hit ...preceded with a quick downing of an energy drink on the way to the tank. with a non-rebreather mask got 2-3 aborts per e-tank... best jonathan
  3. Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan
  4. ....and one day Tonto said kemo sabe well, kiss my ass, I bought a boat....
  5. ...they gave Dylan a well-deserved Pulitzer ....and for my money, there has never been a lyric written that's more evocative, gut wrenching, and affecting than this. In Japan, they declare artists like these National Treasures ....JP, oh my....
  6. ...welcome....glad yur here, sorry you have to be....now, ...where's the OXYGEN?
  7. ....a) oxygen can have such dramatic and positive effects for CH treatment that you really should go all out to get it....which may include some shoving of the civilians who just don't get the URGENCY CH hits cause. quick, easy once dialed in, nunna the nasty side effects of some of the meds we use...life changer for some of us. ....b) i TOTALLY get wanting to stick to the hard earned strategies that one uses to deal.....been there, done that. but, there just might be another way that works, might even be better......and it's always nice to have alternatives. clusterheads sharing about beast wrangling is why we're here.....that and a cool family that happen to understand and care... .....there are countless clusterheads who would be doing a happy dance for access to the vials. BIG score! Nothing to add to @Bejeeber concise and vital primer. above...agree with everything he said! Note from experience re self injecting. The only ooky part is the first time or 2....after that it's no big deal no more.... PS....26 D reading is NOTHING. the lowest level i've ever heard of lowering CH hits is in the 60's....i believe batch @xxx would say 80's or even higher. ...hope he comes along to comment. benefits beyond CH for your overall health too.....
  8. jon019

    Intensity

    .....^^^^^^^^^this is very good advice....i wish it wasn't so but i've lost count of how many times i've seen that hyperventilation is THE way to use O2. it MAY be the best (probably but not universally)... but it sure as hell aint the ONLY. i personally can't hyperventilate, but thru hard earned experience found that very slow deep in/out was extremely effective. may not get the max O2 in circulation in the minimal time, but it worked...it DID calm me the f down, and eliminated the adrenaline, overheating, agitation, anger, spastic movement, stress hormone reaction that are the hallmarks of a killer hit. mixed in, or after, i progressed to a very similar technique as described by Freud. my fear is the seemingly never ending reports from newer clusterheads that "oxygen doesn't work for me". well....maybe....and maybe it's just a particular technique that doesn't..... and you.need.to.keep.trying the various methods. ....there...rant over (afterall, aint that part of what CB is for?)...this ones a pet peeve...oxygen made all the difference in giving me a life....
  9. jon019

    Intensity

    Hi Tamari...welcome... ...your best bet is to hit the oxygen at the first sign of a hit. i understand a desire to conserve O2...but in the end it aint worth it! ...some have found an energy drink/caffeine immediately before the O2 makes it more effective...for me sometimes it was all i needed.. ....staying on the oxygen for 5+ mins after a hit abort may help with the shadows. others find that ginger, caffeine, or regular pain relievers like aleve help with shadows (i'm sure you know these meds no help with an regular hit)....for me, nothing ever worked on shadows, i had to learn to just deal with it ....you should experiment with various types of O2 breathing, hyperventilation/slow breathe/breathe and hold...or a combo... all work for different folks. there is no right way.... best jonathan
  10. Hi K...welcome... ...agreeing with Denny....these dramatic symptoms are highly unusual. LOTSA folks have unpleasant/alarming reactions to the hammer that is suma (esp the dang 6mg stat)... but that is typically much more transitory. talk to your pharmacist...make sure they have time to listen/digest even if that means an appointment. those behind the counter are frequently overwhelmed. i'd try to find one connected with a health org or a large corporation....those have specialized pharms in supervisory positions they can refer you to..... or consult themselves. good luck...keep poking around....this sounds concerning and well worth pursuing... best jonathan
  11. ....bwaaa...CCR stuck in "Lodi" again always been one of my favorite Credence songs. for many years i never knew what the heck he was saying..." stuck in low-drive, lo SOMETHING"...and what's an "a-gin?". visiting my brother in CA one summer, we actually drove thru Lodi, and he asked me..."you see what he was talking about?". i said who? he looked at me like the younger brother moron i am and said "FOGERTY!" ....THAT'S when i got it..."oh yeah, i get it now".....
  12. ....dang it DD...sorry to hear this...prayers, vibes, good thoughts on the way. freakin scary now but look on down the road and be grateful it was found now and you avoided the coulda-shoulda-wouldas. been 11 yrs here for same damn thing...the scare goes away when you realize you're ok....and you will be! best jonathan
  13. .....my Grandpa was a carpenter (barns!).... he wore bib overalls and slip on boots, smoked Parodi cigars imported from Italy...... they looked like turds and smelled worse.....but i sure remember him and them. it was said of him in our tiny town "if Steve put it up aint never coming down" cuz he believed if one nail was good...5 were betta! JP just a magnificent story teller....
  14. ..."the saddest funny songs and the funniest sad songs"...and the charm of a favorite uncle who slipped you $5 for a 6-pack of cheap beer when you were 17... .....that's cool, aint no accounting for taste....i am just forever grateful for the Brit musicians like them, and too many others to name, who saved "the blues" for us Yanks...
  15. ...."How Blue Can You Get?" gets me every time...reminds of Prine for funny great music... ...2005 Texas tour...favor for the fans. Mick does country wonderfully, even tho a bit of a put-on...."Girl With Faraway Eyes" a fav. i thot so too....glad to hear the regard for Ronnie on steel from someone who would know....
  16. .....i'd pick B.B. ....but speaking of "kings", THE version belongs to Waylon, with a boy howdy delight that is this:
  17. ...just note that chronic does not necessarily mean constant or increased number of hits. my experience: 23 yrs ECH (5-8 wks on/off), then 12+ CCH with high and low cycles within that. hit times were unpredictable with 0-3/dy. intensity less, aborts (mainly O2/energy drinks) worked better. still "twilight zone" but different episode. use the same tools you are learning....be willing to adjust. ...to answer your original question. there were several of the past few yrs where the shadow was near constant, because a hit is rare i actually got almost used to it....no choice as caffeine/O2/ginger no help). i'd zoot a zomig ns every once in a while when it got tiring....
  18. ...oh wow....YES! i've run into that problem with other scripts....the droids working in insurance offices are all about the coding now... ....one other note. the word "intractable" can be powerful as if it makes CH more "real". when my neuro used that word (in a delightfully harsh and offended letter) for a previously denied triptan script, i all of a sudden got 18/mo approved....(no, i never used that much, but knowing i could get that many was a mental assist)....
  19. .... ...i open the youtube link...play the "song", go up to the address bar and highlight the address, copy, then paste here. a black bar pops up asking if i just want to post a link only....i do not click this, though i wonder if i'm using up my upload allotment this way. oddly, sometimes the opening ads play, sometimes not. unsure how that happens tho it might be by watching whole way thru before the copy/paste...
  20. ...this was great.... loved the lyrics ("explicit" per youtube, mature in my ears) and the music gave me a Marshall Tucker vibe..... ...post away...nice list...
  21. ...this is otherworldly in straight frame of mind....i always figured it would be awesome in an "altered reality"....
  22. ...i'd forgotten about this dude...saw it yrs ago....and howled with laughter. forget that "tap firmly" shit....i've done everything he showed thousands of times (he's seen hits is all).... at high speed and full force. it....ahhhh....ummm... does NOT work....bwaaaaaaaaaaaaaaaaa ....and dang it Brian....ya got me searching for that country song!
  23. ....aint no maybe about it....any physician can prescribe. all 7 or 8 PCP i had before a neuro were fully willing after LISTENING to me, and checking standard medical reference guides ...which list O2 as the #1 CH killer sans triptans. you got jackpot with an CH knowledgeable OB and i'm liking (tho surprised) the caffeine acceptance. an energy drink (2 oz 5-hr energy type) with minimum 120 mg caffeine and 1000 mg taurine downed quickly at first sign of a hit improved oxygen effectiveness greatly for me. some find just the caffeine sufficient....be sure to check with OB for acceptable levels of caffeine and certainly if taurine is ok during pregnancy.... ...see this link for guidance on script writing plus other good stuff... High-Flow Oxygen Therapy for Cluster Headaches | Treatments - Clusterbusters
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