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jon019

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jon019 last won the day on March 4

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About jon019

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  1. .....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
  2. ....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
  3. 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
  4. .....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
  5. ...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
  6. 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
  7. ...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) ...
  8. ...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
  9. ...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
  10. ...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?
  11. ...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!
  12. ......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
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