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jon019

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jon019 last won the day on March 14

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About jon019

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  1. jon019

    Coronavirus PSA

    ...for reasons unimportant I am in several local drugstores frequently, and finding them to be remarkably well stocked ..far beyond what I expected ...which is actually a little comforting...there are 3 exceptions: ....toilet paper....not a single sheet on an entire aisle...reminds me of one of those going out of business stores with bare shelves...panic buying of course, unsupported by reality or need...presently a logistics problem that will resolve... ....hand sanitizer...nothing but a sign in 3-4 ' space....totally understandable.... ....vitamin C and D sections of the supplement aisle...typically among the largest sections (4-5')...now just random bottles of odd amounts remaining...evident to me that whatever the secret is regarding these particular supplements...it doesn't extend to the buying public...I look forward to the results of clinical trials on IV bolus treatment for COVID19... FWIW... I am up to date on all my vaccinations...being an old guy I am unwilling to suffer the fate of friends and family who succumbed to pneumonia or suffered from shingles or the flu....YMMV... best jonathan
  2. jon019

    Permanent cure

  3. jon019

    Influenza and CH

    ...very valid question...and I wouldn't limit it to physiological...there are probably elements of emotional, mental and spiritual involved also... ....I was the caregiver for my Mother in the last 3 1/2 months of her life...it occurred right in the MIDDLE of a regular/reoccurring cycle....and I remember saying "Lord, please...I can't handle BOTH of these at the same time!"....then making plans for TRYING to do exactly that.... ...whether attributable to spiritual faith, emotional self preservation, stress hormones (def a preventive but minimally sustainable) or something else didn't matter then, but has intrigued me ever since. The cycle stopped IMMEDIATELY... and failed to reappear the expected and "normal" 2 or 3 more times for the next 6+ mos.... until I was finished with her estate. slap me for stupid, but after 20 yrs I thought they were gone forever...nope....but what a remarkable and timely window I am forever grateful for... ...there is way more to dealing with this ailment than just treating a wonky hypothalamus...we haven't even begun to tap the potential of the human mind......and I continue to believe that much of the battle simply involves the "attitude" we approach with... best jonathan
  4. jon019

    Emgality and BC/BS FEP

    ....I figured the bc/bs.....but what is fep? ....thank you...this is most excellent reporting...and a good reminder NOT to give up with insurance...they COUNT on folks walking away...I did battle with 7 different companies re coverage for O2 and/or Triptans...always won, because I NEVER gave up....but they made it as hard as possible...
  5. ...I like spiny's pro-active educational approach.....I didn't have the energy to do that with 4 of the 6 I've seen (neuros seem to be higher on the arrogance spectrum in my experience)….one of other 2 recognized that I knew more about CH than her and just gave me what I wanted (O2 and triptans)….and the one headache specialist I found (at a closed now HA clinic) made me cry (in a good way) when she physically flinched at my telling of history and said "I treat CH very aggressively"...she was and is a HA researcher at Stanford (some of which CHfather has posted here)... ...long way to say ya GOTTA find a HA specialist.... ...interesting re the pupil constriction...no one has ever commented on my permanent hit side constriction...other than to shrug with indifference (eye docs). Seems to me would be one piece of the diagnostic puzzle pieces....
  6. FWIW….CCH here (have never had a migraine)….rare hits but near daily shadows with no other symptoms (for years now post ECH)...non distinct does not mean unique....just a more difficult diagnosis...
  7. jon019

    Energy drinks

    welcome spaceman...glad ya found us...sorry ya gotta be here, ….in my case low blood sugar a trigger...so got additional benefit from the combo of caffeine and taurine and sugar....but there is a ridiculous amount of sugar in most (have always thought to cover the disgusting taste of most of these) so eventually shifted to the sugar free, which worked fine....just be aware of what type of sweetener is used as aspartame acted same as msg and was major trigger for me..... best jonathan edit to add: just looked at a 5 hr energy bottle...2 oz, 4 cal, no aspartame, easy carry and drink (my go to on a plane)
  8. jon019

    Good Neuro in Dayton OH Area

    .....fixed it for you..........................
  9. 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".....
  10. 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
  11. 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
  12. 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....
  13. jon019

    I'm finally here.

    Welcome aboard! Jonathan
  14. jon019

    Newly diagnosed CH

    ...remarkable post Chris!
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