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jon019

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Everything posted by jon019

  1. jon019

    Good Neuro in Dayton OH Area

    .....fixed it for you..........................
  2. Yes...proceed with caution...had an ENT (accomplished surgeon) STRONGLY advise me (and only slightly facetiously) to "NEVER trust a surgeon... we think we can fix EVERYTHING by cutting".....
  3. FT...thank you...very interesting! Not quite understanding usage procedure...one patch per hit?....or constant admin at low dosage as a prophylactic?...or ability to selectively admin for a hit?...dosage? Why do you think it would be a cheaper option? I paid basically the same amt for Imi and Zomig NS (after insurance)...with Medicare Adv now $125 copay per script.... Best J
  4. jon019

    UK Cluster Buster Testimonials

    hey timmy….please tell us a little about yourself, your organization, your education/experience.....it's nice to know who we we are talking to... best jonathan
  5. jon019

    Lithium or Occipital nerve block

    FT...totally get your reluctance with a physician unknown to you...if you can find one you know/trust I'd give it a shot. Didn't work for me but any side effects are transitory.....and the potential is enticing....
  6. jon019

    I'm finally here.

    Welcome aboard! Jonathan
  7. jon019

    Newly diagnosed CH

    ...remarkable post Chris!
  8. jon019

    Newly diagnosed CH

    ...if it is....it's an odd form..but we are an odd bunch..... everyone the same yet different... .... typically the need to move is nearly uncontrollable..moving doesn't make a hit directly worse....or better (except for distraction....)... ....sleep!!!???.... can't see how...many a clusterhead has prayed to just pass out from the pain w/o success... .... what sounds like many hrs long is unusual (for me only with a very rare 10....)....not at all unusual to wake up with a new hit tho (and some experience what could be described as wax/wane of same unresolved hit).... ....if yur Doc knows about Oxygen it should have been #1 priority ...with Imitrex back as last resort abortive....NOT meant to be a preventative.... Best Jonathan
  9. jon019

    Just to put it in perspective

    ....very interesting, thank you.... ....I never fully comprehended subjectivity until my sister-in-law eschewed ketchup on her fries as " too SPICY!!!!".... .... remarkably (to me) I've experienced 8 of the 20....the only one that even approached CH was gout.....and I mean DAYUM!!!! ... surprised not to see burns on the list....most of us know how bad even a small one is......
  10. Tim.... that's sobering...no migraines here....but I've seen 'em...and want no part of THAT! Sorry you've had to be a double warrior....one down, right?....let us know when you get this one... Best, Jonathan
  11. jon019

    Weak background pain after end of cycle?

    ....hi Edgar....how long have you had clusters? I ask because maybe the long remission has "reset" your perceptions...meaning what you didn't notice before you now do... .....in my case, when episodic, a hard or long cycle would result in what you describe...sometimes right up to the next cycle... ....as a now low level chronic... while still cycling at small amplitudes...if I think about it's still there in the background....I've adapted to ignore it...same way I deal with tinnitus.... ... another thot is that having the shit aggravated out of a huge nerve like he Trigem....maybe it just stays aggravated (or, ok, more properly, inflamed...) ....when it becomes annoying I've found success with Naproxen and/or caffeine....oddly, O2 ineffective.... Best Jonathan
  12. jon019

    Zomig question about cost

    ...be sure to check the web for manufacturer (AstraZeneca) coupons...saved me $35-40/mo on the copay w/insurance ...which was still $30....note there are hoops you may need jump through. Total naked OOP would have been over $323 (6 by 5 mg)...
  13. jon019

    o2 noob help please

    ..dang...I hate it when the beast finds our address again.... ... don't get too hung up on the "right" technique...we all kinda figure out what works best for us...try different styles.... ...in my case hyperventilation not usually possible and my best success was a slow in-out (hold in every few) with an attempt to clear my mind of EVERYTHING except "breath" (hard to do... GOOD distraction!)...and calmed me the f@#* down....which was near as critical as the O2... Best Jonathan
  14. jon019

    Prescription Frustrations - long rant

    ...hi Jost...it ain't glib when we suggest/push/cajole/beg a fellow cluster head to try O2..tis the #1 primary MEDICALLY acknowledged abortive for a cluster hit. Has SAVED LIVES and sanity (like mine)and it's a crime when one of us runs into a med professional who can't or won't prescribe it...or ins that won't cover. A few yrs ago on another forum it would be referred to in almost every thread....it's that important. Some folks don't know about it...I always presume NOT until I know for sure. And I will continue to risk pissing someone off because I can STILL feel the tears from 35 yrs ago when I aborted a hit "like water down a drain"...and I KNEW I just got my life back.....YMMV... but it's damn important to try. I learned about it pre any forum...then the job was to find a doc who would work with me (critical)...and fights with 7 insurance companies. The alternative of untreated CH was sufficient motivation for the battle... Others can detail welding setups way better than I..but yur already 90% there ...and you are gonna be able just shake your head at the failings of some in the med/med insurance community... PFDAN Jonathan
  15. jon019

    Sumatriptan where has this been all my life

    Welcome..glad ya found us... OXYGEN!!!???.....
  16. jon019

    New to this forum – Cast Iron until hit by CH

    Hi CI...welcome...you provide a very interesting read! ...a couple of unsolicited thoughts...cuz...why not? ...you're scaring me with all that Suma...maybe I missed it but are you splitting doses or using vials so you can titrate just the right amount? I could get by with 2 mg per hit...6 mg was way too big a hammer!. There are no absolutes in clusterville... but general thought is that Suma can cause rebounds or negatively affect cycle...and the side effects can be significant. Sounds like you know all this but.... ...a little puzzled by the reluctance to try the D3 regimen...I won't try to sell it, perhaps Batch will stop by with THE word...but with your current regimen of what sounds like to me a bucketful has got you at a stasis that is only somewhat acceptable... so you are looking for more. If you were to try the D3 I don't think it would be unknown if it is efficacious or not...either you improve or not. If ya do...you can start eliminating the other meds and all their side effects for a much safer supplement centric regimen... best jonathan
  17. jon019

    spread sheet

    ...yes...thanks DD..a little chagrinned I had no idea this existed...very interested in exploring... ...for a non scientific but high number fascinating survey (12,000 responses) check out this on our sister site (clusterheadaches.com): http://www.clusterheadaches.com/survey/index.html ...there's also a cluster quiz which is helpful for folks new to clusterville... http://www.clusterheadaches.com/quiz.html
  18. jon019

    New to the group

    ....hmmmm....that darn anecdotal evidence.....results in insufferable forums like CLUSTERBUSTERS.org....beware...
  19. jon019

    New to the group

    Hi... welcome...nice summary! Best Jonathan
  20. jon019

    recommended doctor list

    ...dunno about the lead time but Lilly Jung Henson at Swedish (usta be at Issaquah branch...not sure now)...MS specialist but she knows CH...delightful person too...
  21. jon019

    Great news about my O2!

    same as Pebbles....24/7...strapped my e in a cart with a seat belt...regulator and mask ready...could walk that puppy like a dog right into the office....buy online the O2 shop will charge you WAY too much......
  22. jon019

    Beginning/End of a Cycle

    .....bell curve....slow ramp up/down # and intensity....one MASSIVE hit at end which signaled end of cycle.....
  23. jon019

    Turkey Dinner Remission Thinner?

    ....have never noticed any connection over the years but did develop a turkey allergy following chemo...allergies create inflammation which is the enemy of stasis...upping the D3 sounds like a good plan...along with some Benadryl...Batch speaks eloquently about this...seems yur already on the regimen so check his advice on dosage..... best jonathan
  24. jon019

    Verapamil and stomach upset

    ...oh yeah...forgot about that....was walking 5-12+ miles/dy at work..
  25. jon019

    Verapamil and stomach upset

    OXYGEN !!!! ....at one time verapamil at 480 -1040 mg/dy .......stayed ahead of the concrete by LOTS of water (some swear by this alone for CH) and fiber (especially fruit)....
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