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jon019

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Everything posted by jon019

  1. .....got pretty good at knowing when it was "safe" (no shadows, no symptoms of a hit w/o pain, gut feel).... but the few times i missed, O2/energy drink didn't work and i had to go to my abort of last resort: Zomig NS, which worked 99% of the time no matter the causation. no recollection of any one-off trigger kick starting a cycle.....
  2. @elSchreib...OXYGEN OXYGEN OXYGEN....from a tank, not a concentrator, with a non rebreather mask/mouthpiece/demand valve at minimum 15-25+ liters per minute. an energy drink/strong caffeine downed at the first sign of a hit increases effectiveness for many. stay on for 5-10 mins post hit. decades of success for me that saved sanity (perhaps life) with NO side effects, NO rebounds, mostly quick aborts, cheaper than Imitrex, way more portable than one would think..... ....have no experience with Wim Hof breathing...certainly worth a try. some aspects kinda what i did (personally I'd comb
  3. Location map (lincare.com) UTAH shops ...although mixed reviews for Lincare in the CH community ... they are ubiquitous and it all depends on the shop mgr you encounter anyway, no matter the supplier....overall they served me well (especially the techs and drivers)... .....even if you don't have insurance or ins balks....with a prescription in hand, from a headache specialist doc (or a PCP who is willing to learn/listen),..... sit down with the O2 shop manager with an offer to self pay. in some cases this is even cheaper than insurance. cheaper yet, a fallback plan of weldi
  4. .....i am of the firm belief that one should go with "gut feel", you know you best. even if things turn out unwanted or not as expected, the mental anguish "savings", in my experience, are worth it.... ....whether to bust or not with viral illness going on is a very good question that i don't recall seeing discussed here. there has been much discussion over the years, in various places, that illness/inflammation/allergies/trauma are fodder for the beast....so having covid is likely to make matters worse. hoping others can share actual experience...
  5. ....hi IFB...welcome....you've heard great stuff already...if i repeat, oh well... My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use. .....some go (much) higher to find relief...don't limit yourself ...the script is just the "ticket to ride"...we each find the best flow that works...nobody else knows or cares what that is. a non-rebreather type is vital...just make sure you are not out running the bag....better yet would be a demand valve or direct from a tube. there are various breathing techni
  6. .....yeah, an albuterol trigger wouldn't surprise......damn steroids are so active! if so, stinkin' thing is you did nothing wrong....an appropriate action to deal with your needs.......one that any NON clusterhead could do w/o a second thought or consequences......sheesh. ....try some antihistamines (old school work for me) for spits and giggles too...it IS springtime! ....may the "bust" abide j
  7. ....favored m60 and e tanks....found the the m's a workhorse, just crank and breath, thankfully no thinking involved... ....the e's took a bit more "finagling" (a word my dad favored). as the volume dropped (especially below half) the lpm's would follow...i was constantly adjusting the flow upward to maintain adequate lpm. got to where i went by sound, as reading a stinking dial when being hit was not user friendly. in my case, it meant volume left was not a consideration and i used to leave a little in several tanks as a "reserve".....like a scuba diver. the horror movie scenario of a f
  8. Hi Jonathan, thanks for your response. Yes I've tried energy drinks the past years but found it made it worse. I don't suspect the coffeine / taurine or else but rather the high amount of sugar being a problem for me. Sure there are zero/diet versions around but same here, maybe the artificial sweeter isn't well tolerated. ...since low blood sugar was a trigger, i relied on the hi sugar content (RIDICULOUSLY high, methinks to cover the disgusting flavor) for a bit....but it was just too much so moved to the sugar- free, except for aspartame versions (vasoactive and also a personal trigg
  9. .....are you using caffeine/energy drinks to aid the O2?....I found it improved effectiveness dramatically if powered down immediately when a hit felt.. ....i am also one of the advocates of hitting the oxygen immediately and paid the price often if i could not get to the tank soon enough....BUT, over the years there were cycles where i HAD to WAIT until the hit got to a Kip 2 (not 1, not 3+) for it to work...and it would. strangest damn thing that i found by accident, after much panic that the o2 wasn't working any more. I have absolutely no explanation for it, but I do know that cluste
  10. ...living between the hits has always been a goal....sometimes thought it actually harder (for me) than during a cycle.....as there is no enemy at the gates to motivate my anger/determination. when a cycle ended....chemically or naturally....depending on how soul sucking it had been, i would eventually do a "beer test". got pretty good at knowing when "all clear" even w/o that.... ....after that it was f**# minding the triggers...got a life to live. then one day, a trigger will indeed trigger....so it's wash-rinse-repeat..... ....but, i'll repeat...living between the hits and acting
  11. hi Leo...welcome to the boat.... ......aspartame is vasoactive and a distinct trigger for me... same as MSG in all its ubiquitous, mostly hidden forms.....none of the other artificial sweeteners, like sucralose, but folks with sensitivities to such would not surprise me..... ....have always believed a log of CH hits and cycles...recording timing, weather, location, and what you were doing and ingesting preceding same... can be determinative in narrowing down one's particular triggers. know of one doc who uses as a diagnostic tool the fact that cluster patients seem to do logging almo
  12. ...hi MF...welcome... ...oh absolutely....and combined with a ciggie post hit was the closest I could get to a buzz while in cycle. never knew if it was endorphins from pain, physical exertion (I was VERY active)....a reaction to excess adrenaline dump....or some kind of psychological relief high. what i did notice was that the longer my ch "career" went, and the lesser my anger, agitation, physical activity, overheating and stress became.... because i learned how to deal: (OXYGEN!!!, energy drinks, D3, meditation for mental health between cycles....and actually going from ECH to CCH) ...
  13. ...sorry you need to be back....but we all appreciate check ins to let us all know how family is, motivation to maintain vigilance, and reports on methods of dealing... ....could very well be that chill (ill?) winds a trigger.....could be the weather changes that bring those winds. noticed one time that nearly every time i was driving to the O2 shop i was wearing sunglasses. initially thought it was the bright light causing hits or the cycle....turned out, it was the RAPID change in barometric pressure (Pacific NW) that brought that sunshine. Lo pressure or Hi pressure no problem.....it w
  14. ...i think that's still the case....although we hear of occasional work arounds or different interpretations by different offices....hoping someone else can comment more positively... ...still, that's pretty damn rude of Apria to just drop a patient like a poopy diaper....ask them about self pay, if ya got a script there should be no reason for them not to accept. cost of course would be determinative. i did this for many years when my ins company did not cover O2...turned out the out of pocket cost to me was exactly the same either way. made sure to maintain a face to face relationship w
  15. ...absolutely @Chris Moore!...and MANY thanks to @Bejeeber for pointing out the tele-med possibilities....i smack my head, well, more than usual, that it never occurred to me... ...these are the states Dr Ravitz covers: California, Colorado, Florida, Georgia, Michigan, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Texas. ...she's in Manhattan....do you know of any local clusterhead patients of hers.... and their thoughts?
  16. ...i am gobsmacked...for yrs we here on the cluster farm have bemoaned the lack of access to such.....WOW this never occurred to me either....this might be a game changer!
  17. ......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off..... ...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think
  18. ...see the attached Kip scale...a beloved fellow clusterheads interpretation. it doesn't fit mine, but bear in mind the typical pain scale you'll get at the doc shop doesn't represent us either. it's importance is as a reference...kind of an "in reference" that clusterheads of an era used (use) to talk to each other in the same language.... The Kip Scale (clusterheadaches.com) ....there's really no way for us to gauge how O2 is going to work for you....timing/flowrate/breathing techniques/etc....took me hours of sometimes bitter experience to figure what works for me.....then
  19. ...food for thought....sorry for the hijack... ....if redbull works and he likes it, then fine...as the saying goes "don't mess with success"....just note it has lower levels of caffeine (less than strong coffee) and taurine than most other brands..... is WAY more expensive (you're paying for advertising)....and tastes like dirt...bleeech! ....do a google search for levels in all brands. my favorite large can was "Wired"....16 oz with 344 mg caffeine and 3200 taurine...half a can or less worked just fine. while low blood sugar a trigger for me, it proved to be just WAY too much (all
  20. ...ok now....yee-haw getting the good stuff in place.... ...oxygen saved my sanity...perhaps my life...used M60 tanks at home and e tanks in office/car. just saying so ya don't feel trapped at home...dunno sizes of welding tanks but there's lots of folks here can comment re availability of smaller sizes.... ....my best outcome was to hit the O2 at the FIRST sign of a hit....delaying even for a short time increases the chances it won't work and puts doubts in ones mind...we don't need that crap. a double/triple coffee or an energy drink with at least 100-120 mg caffeine and 1000-1500
  21. ....depends on the time frame.....first yr a slow ramp up (tooth pain only) , next few yrs peak ass kicking..... then slow ramp down next 20.....at which point went from ech to cch. chronic responded better to all aborts and hits at lower levels (still woulda killed a civilian, but i digress)....currently near daily shadows but only rare actual hit. get your plan of action and attitude in line, have the tools on hand or easily accessed, and be prepared to zig when the beast zags...you'll do fine.
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