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jon019

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jon019 last won the day on October 9

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About jon019

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  1. ....check your journal...you know, the one you keep on when, where, how hard, how long, activities, eats, stress, weather, etc..... soes you (and maybe a good doc) can figure this out (and then stop journaling)....cuz it sounds like maybe there's "something" happening one day but not the next (like weekend headaches from no caffeine)....we call 'em "triggers"... ....another thought......if yur fairly new to CH it could be your "pattern" has not settled in yet...for some it takes a while (1 yr for me)................
  2. jon019

    New - Looking for Support

    ...oh...dang...forgot to mention energy drinks.....minimum 100 mg caffeine/1000 mg taurine at first sign of hit or on the way to O2 tank...great for shadows (small hits) and aborts for some folks...made O2 better for me....
  3. jon019

    New - Looking for Support

    Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it. If your doc hasn't suggested/INSISTED the "standard of care/#1 abortive"...which is O2... time for a new doc....preferably a headache specialist....O2 has saved lives and sanity in clusterville.... It sounds like it gives moderately faster relief, which would be a godsend. .....how's 5-10 mins 90% of the time for me.....without ANY of those nasty side effects you mention...relatively inexpensive.... easy to use...way more portable than non clusterheads will tell you...can be obtainable by self pay if the insurance won't cover....from welding supply shop if not.......... I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. ...a "typical" protocol would be prednisone to break a cycle while the prevent kicks in (10-14 days)...doubling up with two preventives (Verap and Depo) is unusual and I would say lazy...but then I do not know your med history so there could be valid reasons for that (he says doubtfully).... .....what is the verap dose (6 x 80 mg = 480?).....that would be a recognized 'sweet spot" amount...many require much higher (I used over 1000 mg/dy in hi cycle)....if you ever figure a pattern try timing the doses just prior to expected hits... ...if ya gonna use a triptan you'll want injectable or nasal (i use Zomig nasal spray 5 mg) as a last line of defense when all else fails...in my case, the Zomig has few, if any, side effects, no rebounds, and a long half life compared to sumatriptan....pills are worthless as an abortive and require exquisite timing to be at all useful as a prevent.... ...you are in the right place to learn about busting..... ....the D3 regimen could make all of this moot...do it now...it's good for ya anyway.... best jonathan sorry to step on Bof post...typed this before saw that.... totally agree........
  4. jon019

    New - Looking for Support

    Hi Blair, ...where's the OXYGEN!?........... ...that's a lot of rocks being thrown at the beast...careful that when you succeed...and you will...ya won't know which one hit...
  5. jon019

    Cluster location in your head?

    ...follow the trigeminal nerve pathway....folks have pain in all or some areas....it can and does occur on either side. cannot speak to the pain with pulse....mine and most report unilateral steady piercing/pointed/ burning/pressured... but we all be different....
  6. jon019

    Risk / Dangers of Oxygen?

    .....for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now...... au contraire mon frere.....the scariest is "we gotta stop dickin' around with this!"....actual quote to me, and it wasn't about CH. gimme a doc who knows his/her limits any day over some version of "I'm God...lissen up!". Now then, what ya wanna hear next is : 'but we're gonna figure it out".....find ona them..... My immediate goal is to get O2 as fast as I possibly can. More questions will come soon I'm sure... ...and we await a report on the first time an O2 abort drains away the pain like water...and it will.....and you find yourself in tears of gratitude, relief, and God knows what other feelings.....cuz we have been there............ best jonathan (3 decade O2 huffer.....) P.S. welcome to the board!
  7. jon019

    Another score

    ......cool! ...the senior bus I ride has a sign: "We stop for garage sales".....I do Sally's and Will's on my own.....
  8. WOW...exactly!!!....used to almost wish for a cycle when I had to write for work....lots of us get the euphoria....but this I've never seen before... wish it was harnessable w/o the CH.....
  9. jon019

    Migraine vs Cluster headaches?

    Welcome!....try this "cluster quiz" from our sister site first.... http://www.clusterheadaches.com/quiz.html best jonathan
  10. jon019

    Boost Oxygen on Shark Tank

    ...just do the math....one hit at a typical 10-15 LPM for 10-15 min would be 16 cans (plus no mask and <100% O2)....at $15 ea that's ca $240....makes the drive down to the welding shop with a box of donuts for the boys a worthwhile trip...
  11. jon019

    After 3 1/2 years the Deamon is back...arrrgh

    ...hey art...why no O2 in SK?....can you not take up a new welding "hobby"?
  12. jon019

    Well they can now produce psilocybin in large quanity

    ….have always been a fan of bacteria/yeast/mold poop.....beer, wine, cheese, sauerkraut....pepperoni!......
  13. jon019

    Question about oxygen!! South Florida area!

    ..."Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this." ...consider yourself fortunate...a clusterhead NEEDS a diagnosis (for MANY reasons and most wait years) AND an O2 script (many ignorant physicians won't even write)...it don't matter a damn what the script says....it is the "ticket to ride"... "If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? " ...YUP...nobody cares what flow you actually use...regulators go from 0 up... "I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated" ...don't focus too much on using the "right" flow...it's different for different folks.....you'll figure it out...start high and go lower til it don't work...then go back up... ….just generally, for budgeting purposes, an e-tank lasted me 2-3 hits and an m tank 5-6 hits... YMMV... Best Jonathan .
  14. ...sorry if I missed this.... have you tried asking an O2 shop to accept self pay? Did that for many yrs....unknown if they are still willing, I'd try multiple outlets...this is dated but I paid $10/e-tank to start and eventually $14...
  15. jon019

    Shame?

    ...nope...CH is not a choice....guilt/shame is...I got pissed and made a plan and followed through.....sometimes it even worked...and when it didn't...NEW plan....
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