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jon019

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Everything posted by jon019

  1. .....ummmm....yeah.... ...ummm....yeah ^^^^^^^^ .....out of hundreds of cycles when ECH, there were a handful of the "one hour wakies" type for me (handled differently, see prev "wake up"posts). no changes in nothing before or after. while there are always tweaks you can make to O2 usage, i know i never varied far enough to prevent oxygen from being its typical sanity/life saver. something else happened (physiological?) ....and just like ALL our other tools "sometimes", for some, it just stops working/works differently....hopefully only for a while. ....O2 never has been, don't see how it would ever be, anything but a most effective abortive (don't forget the caffeine/taurine). it is transitory, not a prevent, not a trigger..... ....as an ultimate believer in O2 i must add: before any clusterhead gives up on O2, they would be WELL served to insure: a non rebreather mask, lpm 12-15+, and a practiced breathing technique(slow breathe, breathe/hold, hyperventilation, combo).....
  2. ...first drug ever prescribed for me for me way back in '85 (seem to recall 40 mg?)....after doc scurried back to office to look up migraine. boy was i motivated for it to work, and took for at least a year. did squat all for CH (positive OR negative), had minimal effect on BP, but produced some truly bizarre dreams.....not frightening just strange. so, in my case, psychoactive properties but anxiety was not on my radar at the time so did not notice either way. haven't seen this as a current use...10 mg sounds too low to effect BP, which some ascribe lowering of to be "calming", seems pretty safe to try and see....
  3. ...no truer words! 20 years ago, in the depths of intense CH, i had access to pure morphine. it didn't even TOUCH the pain of CH, but twice, and twice only, i took enough to knock me out because i was f'ing desperate. it was a wake up call to get this shit under control. morphine is definitely NOT the kind of drug to be self medicating with, especially under duress and w/o full mental faculties. thereafter got a number of years of good success with verapamil and oxygen, until ultimately dialing in the O2, energy drinks, D3 regimen....and a zomig ns in pocket as pacifier....
  4. ...as bad as it sounds, i always shout a YEAH! when the rare clusterhead reports being hit IN the doc office. this is an illness whose effects must truly be witnessed to be believed....otherwise they think you are exaggerating/drug seeking/crazy...... as we are left to describe the indescribable to the unbelieving...
  5. ... CH used to be known as "histamine headache" and some of the standard treatments were heavy duty antihistamines... they don't work as an effective prevent so the usage has fallen by the wayside of medical thought re treatment of CH. not to say they are not effective for allergies and illnesses that cause inflammation and chemical cascades..... which may trigger/enable/worsen CH....either directly or perhaps by burning down your D3 levels. ....Benadryl has always been a go to for me.....it just works better than the new line versions...and i could always work around the sleepiness it can cause (and which some folks treasure)... ....Batch has a new version of antihistamines to add to the D3 regimen if need be....hope someone will give you a link as it's too late for poking around for me...................................
  6. ...hi SF... ...i see no reason not to try the ap-loratodine....have not seen reported as a trigger. i've tried for multiple allergies with minimal effect on same (sigh) but no effect on CH in or out of cycle.... ....the US version of Benadryl is a favorite for effectiveness for me and many due to excellent anti-histamine effects.....and sleep aid for clusterheads in cycle. i believe nytol original and nytol one-a-night are available SA (??)....these are marketed as sleep aids and contain the same diphenhydramine as US Benadryl (25/50 mg respectively). Perhaps other sleep aid brands with same ingredient. am sure you already know the European brand of Benadryl does not have diphenhydramine... j
  7. ....need.new.doc... ...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....
  8. ....appears like you done figured it out.....sounds like the burn down Batch occasionally describes as a "self test".
  9. ...summer bug out...but that CH monkey is a bitch....
  10. ...can relate...i carried a pillow to scream into, took my shoes off and stayed on the carpet.... ....might wanna try a HOT shower on hit spot...cold always made it worse for me, tho breathing cold air just feels damn good. some sit in a hot bath or use hot foot bath...others alternate hot/cold. ya gotta fool that wonky hypothalamus... ...i second the energy drink, powered down fast...need at least 120 mg caffeine and 1000 mg taurine...
  11. .....take up welding "hobby"...many do! i worked 31 yrs in a production facility with an O2 tank in my office, and one in the car. an energy drink on the way to the tank and only gone for as long as a typical "break". depending on the job of course, you maybe could even drag a tank around with you....mine became nearly unnoticed. might have to discuss with HR re "reasonable accommodation"...dunno how that works in CA....
  12. FDA Launches New Accelerating Rare disease Cures (ARC) Program – Drug Information Update (govdelivery.com)
  13. ...ah, what an appropriate date for our own merry prankster...CHfather, to start the silly ...in honor of the trend, i submit 2 pre-jon generations: ......the clue is "pockets"
  14. ...HA...you've got it already...that there is funny!
  15. ...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...
  16. ...help....unable to send PM's....this is all i get every time.
  17. ....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!
  18. 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....
  19. ...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....
  20. ....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?
  21. ...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...
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