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jon019

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Everything posted by jon019

  1. ...HA...you've got it already...that there is funny!
  2. ...nope...no emojis....short msg, long msg, any msg!....all pms's, many regular posts, tho i don't post anymore. it is exhausting/frustrating/depressing to type a msg that cannot be sent...
  3. ...help....unable to send PM's....this is all i get every time.
  4. ....DON'T...doesn't work....all you end up with is a droopy face with the same pain...or a droopy face, with the pain on the OTHER side. if you find a doc who is willing to do it...it's the WRONG doc...RUN!
  5. OXYGEN....OXYGEN.....OXYGEN!!!! allowed me ...with an energy drink starter and D3 regimen on-board near complete reprieve.....with a Zomig NS in reserve and very rarely used but damn glad to have...... .....have always thought clusterheads have an elite ability along those lines...forget what's gone...we are sorta like Tiger the next hole after a bogey, Goose Gossage with bases jammed after a third strike the ump missed...or Adam Vinatieri from 49 in OT after missing the previous kick....
  6. ...YUP, job stress and the anguish of CH nearly took my mind....mostly by accident discovered that 20 mins of meditation EVERY day at lunchtime was incredibly refreshing, restorative, and instrumental in "maintaining". no training, no "method" just cleared my mind by concentrating on breathing only. a trained, directed version probably even better....
  7. ....for me when episodic they all started that way...i suppose it's better than BAM... and you are in a cycle. ...get yur ducks in a row. ...OXYGEN? energy drinks? if used: prevent scripts updated? triptan scripts? busting supplies? headache specialist appt/call in? D3 regimen?
  8. ...old stupid joke: Doctor, Doctor, it hurts when i do THIS! Doctor: Don't do THIS! ....the only way to tell is to stop/change....i used to get hit a couple hours after breakfast no matter what i ate. correlation aint causation....ya gonna have to drill down further...
  9. ....all this talk about being sick is making me kind of woozy....
  10. yup OXYGEN! 5-8 mins typical abort with an energy drink/heavy caffeine dose "helper". i second the life changer comments.....30 mins is a brutal long time, especially for multi hit days. Zomig nasal spray as last resort abort only...i preferred to ride out the occasional hit(s) when O2 didn't work rather than risk the rebounds from oversue of triptans. ....read the oxygen use files here...important to do it right from the start so you do not get discouraged and figure the very saddest and frequently incorrect phrase in clusterville "O2 doesn't work for me". the basics are: 12-15 lpm flow, a non-rebreather mask, proper technique (hyperventilation reported as most successful, breathe and hold or slow breath worth trying), starting IMMEDIATELY when a hit felt and staying on for 5-10 min after abort, an energy drink/caffeine on way to tank. i kept e tanks at work and in car, m-60 at home. don't let them give you a concentrator... Basic non-busting information - ClusterBuster Files - ClusterBusters 10. - OXYGEN INFORMATION - ClusterBuster Files - ClusterBusters
  11. ...these are ducks of questionable character.. ...see them see them beady EYES
  12. .....translate...no cheating! .... or asking Dallas Denny....apologies for the thread jack.... MRDUX MRNOT OSAR CMBDII LIB! MRDUX
  13. Hi Billy...welcome.. ....certainly sounds like your triggers are visual....i wonder if there is such a thing as an Optha-neurologist you could consult? Any thoughts from your current neuro? ....there has been discussion lately re tinted lenses of various hues as a CH treatment. if you pursue the blue screen blockers please be sure to check back in and tell us how well or if that worked. might want to try various settings on your phone...i know my PC has them as they advise "night time" setting so as not to effect sleep. best jonathan
  14. ummm.....or coffee enemas, but that's a whole different forum...or so i've heard.... ...and now that i'm thinking about it, ice cubes in mouth....or shoved somewhere else? i expect Heebie Jeebie will keep us apprised...
  15. ......screaming hot shower on the pain point took it down a couple notches....came right back when i stopped. never tried the hot soak as i'm a big guy and had a tiny apt tub..... wouldn't have thought of it anyway. did usta walk into the -20 F freezer at work with high expectation and low result. felt good cuz i sweated a lot, but no change in pain level. lotsa folks helped by a bag o' frozen peas. have always wondered if these temp gyrations we do help by distraction, blood flow, blood pressure, fooling the hypothalamus, or something else??? xB ...OXYGEN brother!! way faster and drier than filling up that tub....literally life changing for me. when it worked (usually but not always) the pain drained away like water down a pipe....it was a weird and awesome feeling at the same time...
  16. ...really good stuff! my favorites being:
  17. edit to add: posted before responses seen Read these: Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic) ...no real typical cost, vast differences in coverage. had various ins over the yrs, if no coverage i met and made agreement with O2 shop Mgr and self paid. $10-14/e-tank. if covered they billed $42/e-tank and my co-pay was $14 (you can pay me now or you can pay me later). i forget what the M-60, my favored tank, cost. supply chain stressed or broken right now due to Covid, call around for $ and availability. i picked up and returned my own tanks which helped my relationship with shop. if delivered, get to know your driver and treat them like the valued partner they are. frequently can and will do things for you the shop won't. a welding setup if med unavailable will cost you a few hundred to start and whatever the refill charge. MANY clusterheads go this route and save lots of $ and hassle. is the same O2 from same spigot so is safe.... When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?) ....you gotta hit the O2 fast and hard at the very first sign of a hit, any delay will slow the abort....too long and the abort will fail. i powered down a 2 oz 5-hr energy drink on way to tank. increased effectiveness dramatically. staying on 5-10 mins after abort to ensure hit aborted... Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) ....many docs don't have a clue and a disheartening number will not prescribe.....if you get one of those find a new one...preferably a headache specialist or one willing to learn what you need... ...i kept e-tanks at work and in car...allowed me to be out and about like a "normal" person. m-60 tanks at home because they lasted about 2-3 times longer. if welding tanks used, a compliment of small and large advised.. ...gotta be a non-rebreather mask..the best and a treasured possession of mine available here: ClusterO2 Kit - Clusterheadaches.com - Online Store and is a steal at $25. ...many will advise a hyperventilation breathing technique. definitely the favored and most successful but be aware other techniques also work...like slow breathing or breath and hold... or a combo. you need to try them all to find your bliss.. ...i'm sure to have forgotten something.... someone else will be along to add
  18. ...if not you should be....eliminates lotsa "regular" meds, no side effects, fast, easy, portable with some effort. cheap compared to triptans. of course, busting may just eliminate it all....and strong consideration of vitamin D3 regimen wise... ....that cyproheptidine (Periactin) mention was certainly a blast from the past....second med i ever tried way back in the 80's (no help). anti-histamine+ used when CH still referred to by some as "histamine headache". i suppose it might work for some few (some anti-histamines help some clusterheads) but none of the traction in the community one would expect if it worked for more than the few. still using? hope your current neuro is reading more recent lit.....and is therefore willing to script OXYGEN...life changing for many a clusterhead!
  19. ....it wasn't a choice, but you make a good point about predictability....and overall i "preferred" that part of ECH to CCH. always interesting to hear other clusterheads opinion on THAT discussion. have gone back and forth myself about which is "betta"...horrific but predictable Episodic or lesser but erratic Chronic.... ...really it's just the same beast in different guise. ya gotta adapt and adjust the strategies learned and the tools collected...
  20. ...or BOTH. 23 yrs of clockwork regularity here, cycles and hit times...then cycles and hits became (thankfully) less and generally erratic for years more. my personal belief, backed by nary a whit of scientific support so wild-ass speculation, that the "aging out" of CH that every one of us has been "promised" (and some achieve) may be due to aging changes in our circadian rhythms...or, more likely, the CONTROLLER of same...the hypothalamus.
  21. ...old ch.com JOKE..."wimmins don't get CH"...it's kinda funny in a morbid way, when talking about clueless medicos quotes...
  22. hi @Sue mcdonald...do you have a current source for #1? way back in the 80's the listed characteristics in the majority of lit i could find (hard slog) for CH patients was: male, smoker, hard drinker, leonine features, orange peel skin, ocd, several more i forget.....and hazel eyes. ...i believed it then because i happen to have hazel eyes....all the surveys since (and most clusterheads i've known thru online forums) do not support this characterization as accurate....including eye color. it never really mattered to me either way, since eye color is immutable, so would only be valuable as a tool in diagnosing (if true)... ....assuming #2 refers to vitamin D, the rest of your list looks fine...
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