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jon019

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Everything posted by jon019

  1. ...whose form Spiny? did you have to contact Medicare or was that Lincare?
  2. ...and my favorite m-60's too!!.....yee-haw!!! this makes my day for YOU!!. i used Lincare starting in '85....were always completely reliable once i got to know shop manager. ...these forms you speak of....Lincare, Medicare, or Medicare Advantage generated. never had to do any "special" forms for any care so that's a puzzler...
  3. ...sorry, that musta been a one off article, pre hit o2 breathing is not recognized in clusterville as a successful practice ('81 on my case). O2 is an abortive (along with injectable triptans, THE most effective of the traditional aborts. DMT and, for some, ketamine the newer and less studied but reportedly effective). O2 inhalation effects are transitory in nature..... the effects do not accumulate. it is not a preventive. no harm in trying, if for no other reason than to prove to yourself what effect it does (or sadly, doesn't have). i've always figured there is only one way to find out for yourself for any method discussed here...try it...in this case ya got nothing to lose but a little gas..... ...if the melatonin does not work (and you should experiment with dosage) diphenhydramine (Benadryl in USA) is worth a try...was my go to for allergy flare ups (which i suppose might have been cause for 1 hr wake ups, (discussed below)...but i didn't realize at the time)...Quercitin is another option others are more familiar with so i defer... ...for these nightly wake ups, which were only an occasional odd cycle for me when ECH....i sorta quote myself from previous, mostly applies "... staying on for a few mins after the hit aborted is frequently helpful. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 3- 5+)...but back again in an hour. What I did was: learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breathe-breathe-breathe-breathe (almost like a mantra). Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life."
  4. ...your other family is pulling for you and yours Shaun!
  5. .... a cool example of i betcha a game everyone of us have played in some form or fashion. am convinced that we resort to such because it also provides a distraction....something ELSE to do/think about....whether it saves anything or not. ...same here on the regulator/turn off the valve....fiddling with a regulator whilst being hit is beyond my patience/capabilities....
  6. ...this be the Cadillac version NRB.....beloved by many a clusterhead, found at a sister CH site run by a fellow clusterhead, and the proverbial steal at $25. i've had 2 that lasted many years.....plug those damn holes in the meantime. ...the replies above are absolutely priceless and practical.... and make me smile. you won't get better anywhere else, and sadly not even a doctor's office unless you can find the exceedingly rare headache specialist.... ClusterO2 Kit - Clusterheadaches.com - Online Store
  7. ..good catch @CHfather...i blew right by that....
  8. ...citizen science....whoot!! ....and every one of these busts ya learn a little more....thanks for the share
  9. Dang it Shaun...so sorry for this...know we are with you and yours!
  10. .....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).....
  11. ...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....
  12. ...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....
  13. ...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...
  14. ... 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...................................
  15. ...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
  16. ....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....
  17. ....appears like you done figured it out.....sounds like the burn down Batch occasionally describes as a "self test".
  18. ...summer bug out...but that CH monkey is a bitch....
  19. ...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...
  20. .....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....
  21. FDA Launches New Accelerating Rare disease Cures (ARC) Program – Drug Information Update (govdelivery.com)
  22. ...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"
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