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jon019

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Everything posted by jon019

  1. .....translate...no cheating! .... or asking Dallas Denny....apologies for the thread jack.... MRDUX MRNOT OSAR CMBDII LIB! MRDUX
  2. 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
  3. 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...
  4. ......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...
  5. ...really good stuff! my favorites being:
  6. 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
  7. ...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!
  8. ....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...
  9. ...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.
  10. ...old ch.com JOKE..."wimmins don't get CH"...it's kinda funny in a morbid way, when talking about clueless medicos quotes...
  11. 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...
  12. ....cuz it probably doesn't...old line migraine med with minimal effect on CH for most folks.... ...many are on D3 regimen yr round w/o consideration of CH. we are nearly universally vit D deficient. is safe but nice to know if your other measures worked w/o....can always add later...
  13. .....ha Jeebs, ALL so true....and when i find myself saying "only a clusterhead would understand", i end up realizing: "well, whadda bout CHf !?" and then i weasel word it. actually, i'm gonna take this as permission not to have to do that anymore....because, there is no one more eminently qualified to be a "Clusterhead" than @CHfather.... ...also, my thanks to Bob and all the other clusterheads who came together for the being of this site in the first place....and for the admins, mods, board and others who toil on or behind the scenes...and, of course, for my fellow clusterheads who make this journey through the quicksand more bearable ...THANK YOU!
  14. ...if you want or need the protein powder consider different brands and formulations....me i wouldn't touch 'em w/o a lot of research. a single like the whey protein spiny used seems best. the lower the number of ingredients the better chance of narrowing down your trigger(s). many have aspartame to "sweeten" as the powder itself is pretty yucky...known trigger for many. hydrolyzed protein is another name for MSG another known trigger, glutamic acid converts to glutamate in the body, migraineurs are advised to avoid. basically amino acids and their various forms can be or are "vasoactive" so potential triggers. the taurine in energy drinks being one....my neuro forbade it's use as being TOO vasoactive and "we don't know enough about"... ...i tried a google search...there's lots of info out there....consider reliable sources (.orgs and Mayo clinic types) for discussion....
  15. ....Trailer Park round please....
  16. ...my first question, before "where can i get a pair?" would be "ONE patient?"...
  17. ...great title for "The Twilight Zone" CH episode.... ...
  18. ....worth having at the ready if a hit interferes with communication, especially something from a recognizable source (e.g. Mayo Clinic). no telling how or what resonates with folks. used to give Simon's Employers & Colleagues letter but stopped from frustration that some didn't even bother to read...
  19. ....the only question i ever got was for an oxygen regulator/mask (they do look kinda strange off the tank)....they obvioulsy didn't know what it was but i also got the feeling they wanted to know if I knew. good idea to have a short, practiced blurb of CH (incredibly painful, debilitating neurological attack that may look bad but is not life threatening, yadda yadda) at the ready for this and other similar occasions. they aint gonna fully understand but it might come in handy... i bet Shaun had a good one.
  20. ....good point by Bejeeber on the nasal spray option....multiple trips here...aways with several Zomig NS on my person. TSA never even paused when looking at them, even tho they look a little like bullets.....
  21. ...it IS a remarkable feeling....nothing else matches it my experience. mine was mood altering for several weeks, probably chemical but perhaps partly as reaction to simple relief from the ominous/dread during a cycle. almost wished for a cycle when i had an important writing assignment for work, as there WAS a "clarity" of thought, and a skill in writing beyond my actual ability....
  22. ....Lincare had a great travel O2 program that made O2 (delivery or self pu) available at multiple locations. never an issue and became a reliable travel anxiety relief. bet most major O2 shops have same. good idea to call ahead (public or private) wherever you are staying so a tank delivery not rejected....
  23. ...i wonder what the % is in non CH.....would seem most folks have had some kind of head trauma... tho there may well be a threshold level for expression. i was run over by a car at 4 yrs old...direct hit middle of forehead....CH start at 26. seems too far apart but dunno......
  24. ...as an avid smoker i would have fully embraced that abort method....only for me, smoking during a hit was guaranteed to turn a shadow into a hit and a hit into a screamer. the help i derived from smoking was looking forward to the "reward" of a post hit smoke.... always the best of the day. i do wonder if the vasoconstriction during the day reduces frequency of hits for some. i tested the hell out of that by altering/quitting numerous occasions....but in my case, a cycle was a cycle with the same damn number of hits at the same damn time... every day.
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