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jon019

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Everything posted by jon019

  1. ....worth noting that a 2 oz 5 hr energy type drink has MORE than RB of the caffeine/taurine we need.....and is TSA friendly!
  2. .....the vitamin D3 regimen has a far, FAR, FAR better success rate than any of these expensive proprietary supplements...careful not to throw so much stuff at the beast that when you tame it, and you will....ya don't know what did it! leaving you at ground zero for next cycle and the same dance starts all over again... ...really, do everything you can to get OXYGEN ...is life changing for so so many....then strongly consider busting!
  3. ...hi be23...welcome....i make no assumptions so some of this may not apply... .....get yourself an Optimask from ClusterO2 Kit - Clusterheadaches.com - Online Store the shop masks are crap... ....your e cart and a 15-25+ lpm regulator from Amazon/Ebay....shop will want to lease at ridiculous prices ...rethink buying "a" tank....you are gonna need at least 3 e's or 2 m-60's. tho tanks don't really expire they do have "expiration dates" that O2 companies have to comply with. testing/recert required periodically..... and they may refuse to refill an uncertified tank and/or private. if you buy ask ahead if they will... ...it may be different now but i refused to monthly lease tanks from Lincare....just did an exchange as needed....worked great. running it by your insurance company may help....your argument being lower cost....the shop more likely to listen to them than you...
  4. ...just a different game x...more like chess than checkers...
  5. .....sorry, this is a further thread jack...and liable to be missed by folks who should see it....but, sigh..i need to say..... ....adding a little bit to my "regular" and playing the "game" comments above. it happened to be convenient so i picked up and delivered my own O2 tanks...they loved it, saving them money and hassles.... AND, for me, keeping a face to the "file". also, lugging your own tank(s) with their frigging name on it makes it REALY hard to deny that they "carry tanks". the downside here is that developing a relationship with the delivery drivers can be immensely beneficial. those folks see and hear and "get" the patients at the other end of these tanks. there is many a clusterhead who can attest to delivery drivers going far above and beyond for them. also, never hurts to poke your head into the back room and introduce yourself to the techs who fill tanks and prep equipment..a thank you goes a long ways with folks who rarely see YOU.....
  6. ...woo-hoo kat...good for you....clusterheads kick ass!! ...your experience is so NOT uncommon that it boggles the mind. a business whose express purpose is to provide oxygen to scripted patients yet acting like ..."well, but not YOU"....SMFH.... ....ya gotta look at it as a "game"...i guess i learned it from negotiating business contracts, but it is a lot harder to blow off an anonymous caller or paper requestor than a real live (in our case incredibly HURTING) person. made it a point to meet and engage with a seemingly endless treadmill of O2 shop managers..... so they knew me as a person and not a "file". i aint charming, but the consequences of failure were so high i did my damndest.... with pleasant discussions and reams of medical citation documents. not saying this will always work, sometimes the corporate walls are impregnable....but it worked for me more times than not. ESPECIALLY important, just like getting that first HA specialist neuro appointment, is becoming a "regular". once achieved the hurdles can just magically melt away. and if they don't....clusterheads don't give up....the stakes are just too high......
  7. .....did this with Lincare in CA, OK, NV, WA many times with no hassle or extra charge...just remember the mask and regulator.....
  8. .....yup, i'd call ahead...note that it is unlikely the flow will be higher than 3-5 lpm....so that's the first question....
  9. ...i'm settling down for a long winter's nap....
  10. .....this is a wonderful gift for ALL of us.....and the timing is exquisite!!
  11. ...wow...if Racer couldn't get this to work w/o hassle, i despair!!. we got enough to deal with w/o well intentioned ignorance depriving us of a remarkably effective abortive, that for many makes possible a job, career, even sane life.... ...one other thought besides state employment agencies...i cannot imagine that the major O2 suppliers (like Lincare, Air Gas, etc) do not have some sort of insight, advice, procedure to assist their customers out in the real world. i know the advent of the incredibly compact concentrators now make this kind of problem nearly moot.....but for most of us with CH that's not an option. i'd call around ...starting at corporate level....
  12. .....there's no telling Shaun...i always carried a script just in case. injectables never got a glance, regulator and mask got a "what's these?" like spiny...but my explanation accepted. my only hassle was from a can of salmon!...which got a supervisor and 4 agents in deep discussion. it was hilarious but i stifled so as not to appear crazier than the cracked head clusterhead i am. they let me go when i offered to eat it in front of them....
  13. .....never had to use on flight....but is very unobtrusive and much less of a show than an inject, if that's what worries you. TSA never even blinked, tho to me the injector looks bullet like. ...zomig became my abort of last resort quite early. imitrex hits like a sledge hammer...the 6 mg stat dose is WAY too high. the side effects almost as scary as a hit...it sure worked...but dang! anyway, the zomig (prescribed at same time as imi by a neuro who knew how to play the insurance game of not approving enough triptans) had minor, if any side effects, worked within 5-8 mins and gave me an 18 hour PF window. despite all this i greatly feared rebounds and sometimes rode out a hit rather than chance over use. it did become a rare need after i dialed in oxygen, energy drink and vit D3 regimen. surprised your cost is less...for me was nearly exact same price as Imitrex per script....tho using vials of imi and insulin needles i could get 15 aborts out of one script vs 2 per stat dose script (unhacked).... and with lesser side effects. ...i should mention that getting busting dialed in will make all jon's dinosaur knowledge obsolete....and no one will be happier than me that clusterheads in the future will be saying ....you did WHAT?!
  14. .....oh yeah....scary stuff since rapid barometric pressure changes were usually a trigger. i carried imi shots or zomig sprays plus energy drinks (and increased verapamil for the period i used it). my "theory" on why i wasn't hit in air is that travel is STRESSFUL and stress has always been a preventive for me (e.g. 20 mins home AFTER work stress a regular trigger). once i arrived, if in cycle, the cycle continued....which is why i usually arranged for O2 at destination thru Lincare travel program. CH takes enough...don't let it get your joy...be prepared, then deal with it where you want to be rather than where you are, and wishing you were there.... ...edit to add....never triggered a cycle....if i was in, it continued, if i was out,it did not start one...
  15. .....more than 20 trips for me w/o in air or immediate post trip hit.....usually while n cycle
  16. ... took an e-tank to work in a cart for 25 yrs.... colleagues considered it "jon's dog". private office so none of the issues you are dealing with. also had tank in car... so that sounds like YOUR best option. doubt anybody is gonna write you an approval letter.... everybody is concerned with liability and lawsuits. however, an approach that is not personally confrontational may be through your state Labor and Industries (or similar) who can describe the "reasonable accommodations" an employer must make for worker with "disabilities" (may need docs letter for that). i'm thinking of how an employee with COPD or other lung issue must be accommodated w/o isolation in a "special room". the safety issue could be valid depending on type of business... but i really doubt would be in most cases. heck, our engineers had oxygen, acetylene, and tons of ammonia to deal with... one more tiny tank was just amusing. a retail or non industrial setting, or even segregated industrial void of open flame is incredibly safe (especially in a specifically designed holding cart). part of the argument i would have made but didn't need to was "i perform all my duties and more... if you just allow me an occasional few minutes to deal with this you will be retaining a valuable employee"... or something similar.... .... so glad you at least HAVE the O2, that is a BIG deal for some..... sorry for the hassle in using....
  17. ....half dozen times from Reno over 8700' Ebbetts Pass to 7000' cabin in Sierras....NO problems!!! just freakin' fun.....
  18. .....i'll chime in too....same fears but dang it, there was stuff to do! more than 20 trips and never hit once in air or just after. carried imi or zomig and energy drink on plane just in case, oxygen at the destination usually through Lincare travel program. you adapt, clusterheads are good at that! get your well prepared first one out of the way....it gets less anxiety inducing every time after that......
  19. ...hi Snowflake....good to hear from you but sorry it's because the beast is screwing with you... ...i don't know how common this is with CH, but have seen it mentioned several times, mostly as a side note in research and medical articles/papers....and on occasion in discussion by clusterheads.....you aint any more cracked than the rest of us! it's a thing, but apparently moreso with migraineurs. not reported to be harmful beyond annoyance in anything i've read... ...i made my living with my nose so it was more intriguing than alarming for me...tho i must admit it pissed me off and i used to hunt down the source until i finally figured out "And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it." thankfully transient, so never interfered with the job. multiple variations but burnt plastic, manure, and sewage were the most common and yuckiest. it IS the weirdest damn thing..... ...never could associate with any particular med and not recalling at what point in cycle it was prevalent...or even when ECH, if only during cycle...
  20. .....well for sure...depends...i could get about 2- 3 aborts per e-tank (typical 5-8 min ea) and around 6+ per m-60. gotta hit the O2 immediately, and i used a 2 oz energy drink on the way...which increases effectiveness immensely. note with the e's you are WAY more portable than a concentrator....had in car and office for 25 yrs...m's at home. ....$ cost can be a consideration if you are renting the concentrator.....will need to do some number crunching as appears you are doing.... ...if the concentrator works for you great....not many clusterheads find so. is not 100% O2 and does it take a while to "warm up" to effectiveness? they didn't used to get up to 10 lpm so looks improved, but 15-25 with a tank is easy and effective.... ...once i got the breathing technique down, plus energy drinks and D3 i would rarely need the triptans (zomig ns (10 mg) my last resort abort....
  21. ...similar here...besides not helping the CH the main side effect for me was bizarre dreams...
  22. .....so what was the diagnosis? if it's CH, the propranolol is not likely to help at all....old line migraine med that would make me wonder about the prescriber's knowledge of CH....
  23. .....hi Nick, welcome....sorry you need to be here but we can help. ...diagnosis the first step and important for eliminating other issues, and then for insurance purposes. most primary care docs know little to nothing about CH so you may have to educate yours. best to find a headache specialist if possible...note that even most neuros are little versed. ...read everything you can find here, especially starting with the banner link Rod pointed you to..... then ask away best jon
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