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jon019

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Everything posted by jon019

  1. jon019

    Urgent Request regarding Oxygen & Medicare

    ...got a link?
  2. 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
  3. jon019

    Permanent cure

  4. 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
  5. 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...
  6. ...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....
  7. 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...
  8. 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)
  9. jon019

    Good Neuro in Dayton OH Area

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

    I'm finally here.

    Welcome aboard! Jonathan
  15. jon019

    Newly diagnosed CH

    ...remarkable post Chris!
  16. 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
  17. 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......
  18. 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
  19. 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
  20. 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)...
  21. 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
  22. 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
  23. jon019

    Sumatriptan where has this been all my life

    Welcome..glad ya found us... OXYGEN!!!???.....
  24. 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
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