Jump to content


Advanced Members
  • Posts

  • Joined

  • Days Won


jon019 last won the day on September 27

jon019 had the most liked content!


Profile Information

  • Gender
  • Location

Profile Fields

  • Cluster Headache Community
  • Migraine Community

Recent Profile Visitors

4,301 profile views

jon019's Achievements


Collaborator (7/14)

  • Conversation Starter Rare
  • Dedicated Rare
  • Very Popular Rare
  • Reacting Well Rare
  • First Post Rare

Recent Badges



  1. ...yeah...it was a worry, but after a number of real bad hits early on....and even w/o a diagnosis...there didn't seem to be residual physical damage so i started worrying/concentrating on the mental health aspects. hard work...nothing physical to grab on to...i constantly wonder how folks maintain in the face of CH. my admiration for the perseverance of clusterheads is endlessly deep... ....what became near incomprehensible for me was "how is it even possible to SURVIVE a pain so incredible it defies description?". there were 10's (thankfully very rare) where it hurt so bad i actually forgot to breathe......yet here i am....
  2. ...is ever thus the ongoing frustration across multiple healthcare systems....my insurance would cover triptans at $600/script/mo, yet deny the oxygen that would have eliminated 90% of that cost......
  3. ...intriguing indeed....thought about it a lot as the hits were inevitable and predictable damn near to the minute. excuse me mr. beast, i don't have time to screw around with you right now...but perhaps we could reschedule? ....played around with energy drink/caffeine and verapamil dose timing and seemed could shift timing a little bit....never enough to make it a worthwhile effort... ....brief flirtation with "stress mgmt" as stress was a prevent for me. nevermind the insanity it takes to actually even consider finding stressful situations as a "therapy"....sheesh....silly me, the job was stressful enough... ....there were a few occasions over the yrs where a beer and its consequences were intentional...whether is was simply because i could not, at the moment, handle the dread of an upcoming hit.....or getting it over with as there would be a "free" time post. alas, the next hit became unpredictable....
  4. ....Brian, my admiration for you and what you go through, your support of this family, and your ability to come on here with personality is immense..... just not quite as immense as the frustration with my own inability to offer anything other than vibes, prayers, thoughts and pleas to the universe..... ....have always thought maintaining my sanity thru this whole ride has been my best achievement…clusterheads in general, we gotta be some strong freaking people. you got this, and we are here even if you just need someone to listen....
  5. ...and FWIW, in case it helps.....when this happened with my posting a month or several ago: changing the font (pasting into word and changing font there, then pasting here) of my msg allowed posting. lately, that didn't work, so tried the spiny "split the msg"....that worked...go figure (please!)
  6. Hi Kimbers....golly we love our supporters....you are ON this! Thank you from the clusterhead family.... ....yup the above....pred buys time for the prevent to start working. typical time for a verapamil ramp up is 7-14 days. sometimes the initial dosage needs to be increased so not to give up too soon going this route. most common reported maintenance dosage is 480+/- mg/day in divided doses of immediate release (favored over sustained release version)... ....OXYGEN (will be interested to hear your setup...proper flow, mask/technique is VITAL) plus energy drinks were my eventual go to along with the D3 regimen. then, of course, you are on a BUSTING site which may make all this moot... best jonathan
  7. ...yeah, great ask! i used Lincare (WA) for many years ....they initially did not carry M tanks and were none too interested in doing so (my guess that the cost of inventory, storage space, supply of tanks/regs, training, and just plain ignorance of need all potential reasons...they never would say). But, i asked so many times that the need was known, and one time they surprised on arrival at the O2 shop with a couple just for me....and the tech "loaned" me the proper regulator. Took a while, no guarantees ....but for the sake of clusterheads down the line, asking for M's can help spur motivation to supply. Econ 101 (the last one i ever took) "supply evolves to meet demand"....
  8. ...i hear something like this or a Southern street fruit seller in your "lyrics"...
  9. ....WOW...that is way cool...it's lyrical, i was singing it!
  10. ...yup, gimme shelter!
  11. ...i get it...there were times when an attack/cycle seemed so malevolent, intentional, designed and implacable that the thought of the beast as "entity" was nearly overwhelming. didn't wanna go there, but it served as a convenient anger sponge. eventually learned to direct the anger toward collecting the knowledge, tools and strategies for battling "the beast".....
  • Create New...