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jon019

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Everything posted by jon019

  1. ....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...
  2. ...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.
  3. ...old ch.com JOKE..."wimmins don't get CH"...it's kinda funny in a morbid way, when talking about clueless medicos quotes...
  4. 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...
  5. ....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...
  6. .....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!
  7. ...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....
  8. ....Trailer Park round please....
  9. ...my first question, before "where can i get a pair?" would be "ONE patient?"...
  10. ...great title for "The Twilight Zone" CH episode.... ...
  11. ....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...
  12. ....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.
  13. ....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.....
  14. ...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....
  15. ....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....
  16. ...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......
  17. ...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.
  18. ...to me a backward question....rather than "does smoking cause/contibute to/have an effect on CH".....it seems more likely that having CH, or the genetics/predilection/predisposition to CH, leads to a higher incidence of smokers in that population. IOW: smoking doesn't cause CH > CH causes smoking. ...i have no supporting documentation, research or texts on the subject....just totally unscientific observations and reading over the years that clusterheads, as a group, tend to be more impulsive, OCD, with addictive personality traits (smoking, alcohol abuse, etc). possible contributing factors include dopamine, serotonin, hypothalamic or other neurological anomalies, pain, anxiety or ?. ....no offense intended, this is complete and total speculation on my part and may just be a repeat of old theory from an old guy...you may return to your regular programming now....
  19. ...no truer words!... .....made my living as a "professional observer". one of my heroes is Yogi Berra: "you can observe a lot by watching". nuance and complexity, a twinkle or a frown, are all lost with only pixels on a screen...
  20. ...so was i and your narrative is incorrect. started/maintained in the 90's by DJ, a guy with clusters and NO resources to know what the f'k it was and how to deal with it. the archives there are chock full of incredible information that was unavailable ANYWHERE else. he and it literally saved lives and is the farthest thing from a "pharmaceutical front" imaginable. meds were talked about, OXYGEN and later D3 regimen emphasized, tough love on occasion....and always family......
  21. ....naw, that's the other forum... .....nope, and i got proof: "jon's a smart-ass" ...yup! ....."we don't know a millionth of one percent about anything" T. Edison but if ya wanna talk about mooshies, yur in the right place ...used to volunteer for Lifelong....among other things they feed folks shunned by society. their motto: "food is medicine"...i like that, i believe that... MERRY CHRISTMAS ! Juss
  22. Decades-Long Delays in Cluster Headache Diagnosis Common (medscape.com)
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