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jon019 last won the day on July 18

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About jon019

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  • Cluster Headache Community
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  1. ...hi TH...welcome aboard... ....couldn't answer how "common" it is... but definitely a known that some folks have permanent/semi-permanent after effects....including droops, sags, redness, puffiness...and/or, as in my case, miosis of hit side eye. no discernible vision issues for me, and several eye docs have noted it and shrugged... ....i would be concerned enough about this showing up so far after a cycle that i would consult a doc. there are other conditions that could cause this and it bears getting out in front of... best, jonathan
  2. ....careful with the OTC...will tear up your stomach w/o touching the CH (well, maybe helpful for shadows) ....a journal is a most excellent tool for determining triggers, and most helpful for a headaches specialist in confirming diagnosis. know of one who considers journalling itself as an indicator of CH. note that many neuros are as clueless re CH as most PCP...ya need a specialist. at the bare minimum ask the neuros office if the doc is familiar with treatment of CH... ...an energy drink with at least 120 mg caffeine and 1000 mg taurine is especially helpful for many clusterheads
  3. ....ooops....sorry. Benadryl just a brand name...is totally different compound outside US/Can.... .....what i refer to is diphenhydramine.....which in Britain (EU?)is available OTC (i think)as a "sleeping aid".....perhaps Nytol or Unisom...or something called Dimedrol (help! UK folks). Old time med that i have found personal success with..... and many others report same. batch describes partly as a blood brain barrier transit issue. could always deal with the drowsiness for the definitively beneficial effect.... ....away from home PF surely indicative....but involves too much to be s
  4. ....wow....that's a tough one. Any thoughts or consideration to allergy mediated (molds,chemical) in his home environment? Has Benadryl or similar been tried? A food log with selective deletions in diet?
  5. ....i can still get teary recalling the first time (1985) OXYGEN caused the pain to drain.like.water.... and i just KNEW i had my life back. may you continue to say "it worked"....
  6. ....ask away...this is family... ...i did a slight lift of the lower part of mask to forcefully exhale....then back tight quick...
  7. ...be sure to tape over any vent holes that would allow ANY outside air in. some masks have exhale vent holes with latex washers that are supposedly vents to allow exhale. i found them to be PITA leaky and just closed those bad boys off.....did a little lift to exhale. it gets to be a routine that you don't even think about after a while.... ...this was funny...i was typing the above as your ? came...
  8. .....you could breathe straight from the tube. i find a little awkward but many folks prefer...make sure you are not also inhaling thru nose at same time... ....tape over any and all vent holes...you GOTTA have pure oxygen.... ....stick the mask in a bag big enough to hold it and allow some "fillage"....squeeze closed with just a corner open to mash yur face into...breathe then exhale outside the bag... ...experiment with various breathing techniques...many find hyperventilation with intense inhale and crunch (sit up like) exhale to be most effective (start even before the O2) .
  9. ...the "war on drugs" has made for some very odd laws...have seen countless times the illegality of certain items in certain countries...like frigging flower seeds. makes me ponder what the conversation is like in a horticultural club of a Thursday evening in York? are plum trees allowed...you know them pits got cyanide in 'em.... ...Drewbie...check and double check that those seeds have not been "treated"... to make 'em "safe", of course...
  10. jon019


    .....a full but DUSTY O2 tank being among the most beautiful sights ever.. I liked to keep one around.....ya never know...
  11. .....mit...i've always used the 5 mg zomig ns, but there is a 2.5 mg version......at least as seen online. never used more than one per hit/dy, but they worked nearly every time, and better all ways around than suma. also used very judiciously as i was petrified of rebounds, and the thought of my "last resort abort" causing MORE hits was too much to contemplate... ....interesting your methodology.....i found that a certain tilt back of the head, plug opposite nostril and with just the right amount of inhale (less than a snort) was ideal. not enough and it dripped out, too much and the awf
  12. jon019


    typo....meant NON-rebreather mask.....the optimask at clusterheadaches.com is a cadillac version....
  13. jon019


    NOPE! .... i was 26 when it started for me (most start around that age)....retired senior now.....life, job, career. it was OXYGEN (mostly), energy drinks, D3, verapamil for a while, zomig nasal spray as abort of last resort....maybe even age and chemo got me through. Busting remains in the tool belt if need be... ...find the right tools (we'll help) and note that they may change, make a plan (scripts, meds, providers), and keep a good attitude (i always thought, screw it, aint gonna kill me, aint gonna quit).............. best jonsthan
  14. jon019


    Brad....not sure your experience with OXYGEN...changed my life...do your best to get and use appropriately: min 15-25 lpm, non- rebreather mask/direct/demand valve, proper technique (hyperventilation most popular, also breath and hold, slow breath, combo)...
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