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jon019

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Everything posted by jon019

  1. ....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...
  2. .....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!
  3. ...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....
  4. ....Trailer Park round please....
  5. ...my first question, before "where can i get a pair?" would be "ONE patient?"...
  6. ...great title for "The Twilight Zone" CH episode.... ...
  7. ....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...
  8. ....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.
  9. ....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.....
  10. ...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....
  11. ....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....
  12. ...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......
  13. ...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.
  14. ...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....
  15. ...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...
  16. ...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......
  17. ....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
  18. Decades-Long Delays in Cluster Headache Diagnosis Common (medscape.com)
  19. ....before i knew a single thing about CH...including the long delayed diagnosis... it was my belief that there was (and is) a connection between these damn headaches and my decidedly compromised immune system. these included multiple autoimmune ailments along with constantly evolving food and environmental allergies/intolerances.. .... and though formerly known as "histamine headache", i think CH it has got to be far beyond just histamine etiology...this proven to me in my own treatment over the years where the most powerful antihistamines (script and otc) had virtually zero effect on my CH. seems there is far more going on than a direct relationship between the two. that said, diphenhydramine has been most helpful for a number of clusterheads....but then, it has effects beyond antihistamine including sleep and probably anti inflammatory, et al... ....measures like the D3 regimen, that have a direct effect on the immune system as a whole, are helpful for many.... .... the keto diet and probiotics may be helpful in similar ways. i do not know enough about either, other than anecdotal reports of benefits...
  20. jon019

    Nurtec

    ....yeah, it's one of those annoying electives you blow off...like "Headache 101"....
  21. Hi UR...welcome... ...it is by far weird the relationship between smoking and CH. .. ...trigger for some, relief (tho very unusually reported) for others. i could smoke w/o effect on CH before or after a hit ....during a hit a cig would massively ramp it UP. most unaborted hits were survived with little more than desperation and the reward i knew i was gonna get of having a smoke AFTERWARDS. ....in cycle second hand smoke was a frequent trigger....both when an active smoker and not... ....many many reports of quitting having no effect on CH (same here)....but it's such a nasty, harmful habit that quitting should be a priority w/o regard CH anyway.... best j
  22. .....APAP, as the saying goes "don't do squat" for me much to the consternation of my back doc....careful of the NSAIDs if you are on blood thinners. Naproxen was the only thing that helped me with shadows (nothing for a full hit), when not even O2 or triptans worked for what i called "ha bruises"....
  23. .....i remember the first Texas Instrument handheld calculator i saw in the university bookstore....musta been 5 - $600 and weighed as much as a brick. figured some day i might be able to afford one (now they're givin them away like business cards). until this completely hypothetical "rig" came along i felt the same way about demand valves........thank you B, a fun and practical "build a model" project...
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