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jon019

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Everything posted by jon019

  1. .....are there any holes in the mask? tape 'em/plug 'em....you want pure O2 with no room air mix... ....make sure flow is high enough for bag to refill for next breath....you don't want to be waiting... ...some find breathing directly from tube better...just be sure no nose breathing while using mouth tube... ....downing an energy shot (2 oz/5-hr energy type quick, easy, no sugar) on the way to tank enhanced effectiveness immensely for me.... ...absolutely critical to start O2 immediately upon perception of hit...stay on after for as long as it took to abort...if i waited or could not get to tank quick enough there was a point where no amount of O2 would work. since it is best to avoid triptans as only a last resort abort, learning your hit "tells" is vital. is not always obvious to the clusterhead as many report that others around them can see a hit coming before they do....weird but true. ....hyperventilation (some start even before getting to O2 tank) is reported best method....others (me) find slow DEEP breaths just as effective with added benefit of calming effect....another is breathe and hold. try various methods to see which works best....a combination worked best for me (slow/deep/hold..repeat), sometimes within same hits.. ...no, reliable sources of medical/welding O2 will not give you "bad oxygen"....note that scuba tanks are compressed air, not O2 on the off chance this is what you're using... ...schedule changes are poison to clusterheads....a sadly limiting factor for many....i had to maintain very specific routines...especially sleep and eating (low blood sugar a trigger)...
  2. ...hi ft...welcome! very interesting post...thanks, herein my comments... Cluster Headaches has no triggers. ...gonna have to disagree....aint no absolutes with CH except the pain. lotsa triggers for me...., but, like you say...when IN cycle They attack in regular intervals. ....definition of CH....then it changes... Certain foods and alcoholic drinks will make the attack periods last longer and the headaches much more intense. .....naw, not for me.... 35 yrs....a hit was a hit no matter the cause... A headache that last 10 to 15 minutes with a beer in your system might last a few hours. ...if my hits hits were 10-15 mins i wouldn't even be posting....90 mins every damn time....tho several cycles the hits were 0-10-0 in 2-3 mins, i was very willing to accept that over unaborted 90 mins.... Alcohol and chocolate for me can trigger an attack while in a cluster period - i got ralnot while I am in remission. Alcohol is the worst. Avoid it at all cost while going through a cluster period. All kinds. Alcohol will only make things worst. YUP! Eats dry soups and teas often. Stay hydrated. ...absolutely but watch them dry soup mixes.....lots with msg (massive trigger for many) in various hidden forms. hydration is critical for CH and many other issues.... Responsibly consume caffeine such as hot coffee. It helps; each individual might have to figure out how to use coffee for their own selves. ....caffeine at the wrong time for me was a trigger.....as an abort ONLY, in the form of 2 oz energy drink, vital. folks really do need to figure this.... A warm shower during an attack can help.LY, i ...hottest setting i could stand on hit spot helped as long as i could stand....hit was back full force when stopped... Relaxation is also needed. ....a trigger for me....20 yrs of hits 20 mins AFTER work stress stopped nearly every day. relaxation in the form of deep/slow breathing of oxygen at first sign of hit, enhanced with energy drink was my salvation... Stress does not cause clusters; stress causes the attacks to last longer and makes it take longer for us to return to remission. ...different strokes for different folks...stress was ALWAYS a prevent for me.....cortisol/adrenaline? dunno. my longest remission was while caring for Ma her last days...and will executor. days after that 5-6 months....BLAM! hits were back to "normal" If you are an anxious person pre- and post cluster periods you may be subject to panicky feelings; panic attacks. This is part it this disease. The pain is intense and during periods you had then will executorve to take time to deal with your feelings so that you can expedite a return to remission. ...the mental aspects of dealing with CH are incredibly important. i considered maintaining sanity thru this nightmare as a lifetime achievement.... You have to remain active and have a regular sleep pattern and wind down after activities slowly - never to fast. ...ok...i walked 5-16 mi/dy on the job, which felt great, but not any effect on CH. maintaining a consistent sleep routine, actually any routine, was very important for me.... I had not had an attack since Oct. 2021 until a little before Christmas Day 2022. I am about three weeks into a cluster period now. Sometimes I get about 8 - 10 attacks a day imainly at night and some early in morning around 9:00 am. Most lasting about 30 minutes and some lasting longer up to 3 hours. I have had these a long time, about 20 years and can share remedies that might helpful to people. Thanks for listening and have a wonderful day. ....do you use oxygen? life changing abortive for me. please do share, we depend on it... best jon
  3. ...look up OXYGEN and/or Durable Medical Equipment for your area. Lincare and Apria are several of the major players....some pharmacies carry O2 but the options are limited and prices higher. don't let anyone talk you into a concentrator...not pure O2 and not enough flow for most...
  4. Cause= wonky hypothalamus, ain't no fixing a deep brain issue...yet. but we can manage the effects....
  5. ...too bad...like Jeebs said...an old one with limited success. gets tried when "nothing else works". some success with infusions that they do in a hospital setting for intractable and constant hits. overuse has such nasty side effects that it has fallen WAY out of favor. your neuro seems so enlightened that this is surprising...
  6. ...dang it, bad berries when one of the kids is down...glad you shared so we can send vibes...
  7. ....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!
  8. .....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!
  9. ...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...
  10. ...just a different game x...more like chess than checkers...
  11. .....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.....
  12. ...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......
  13. .....did this with Lincare in CA, OK, NV, WA many times with no hassle or extra charge...just remember the mask and regulator.....
  14. .....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....
  15. ...i'm settling down for a long winter's nap....
  16. .....this is a wonderful gift for ALL of us.....and the timing is exquisite!!
  17. ...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....
  18. .....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....
  19. .....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?!
  20. .....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...
  21. .....more than 20 trips for me w/o in air or immediate post trip hit.....usually while n cycle
  22. ... 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....
  23. ....half dozen times from Reno over 8700' Ebbetts Pass to 7000' cabin in Sierras....NO problems!!! just freakin' fun.....
  24. .....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......
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