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jon019

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Everything posted by jon019

  1. ...i think Charlie ("Sir Charles") made it that long....gave a lot of folks hope and help....
  2. ....sorry that i can't answer your first question...it's the quest for the holy grail..... ...re "last ha in cycle".....absolutely could.....it was the worst of the cycle.... not a 10 but a pointed pain i can only describe as "exquisite" and unique. i actually prayed for that hit as i knew what it meant. depending on how thrashed i was i would wait 2-3 days for the beer test...2 weeks if my resolve had been too hammered........................
  3. ...yeah, i know, it aint gonna happen officially. we've pretty much always been on our own...or what's a Clusterbusters for? citizen science that DECADES down the line might get a mention like "yeah those alt medicine cluster folks were onto something".....................
  4. ...thank you...fascinating....can see as an important tool in psychotherapy... but begs the question, and another study....does it also block the beneficial effects for CH? ....still, without availability of bol-148, a potential option....
  5. ...yeah, would seem any placebo in this type of study would have to have some kind of psychoactive effect...and recruitment would have to defer to "inexperienced users" who would not be able to discern "type". have experienced the niacin effect...rather unpleasant but no psychoactivity....
  6. .....clusterheads who have not developed a healthy dose of skepticism are doomed to spend years (decades?) sitting in a dark room with blue cheese lined tin foil on their head, a shot of cider vinegar by their side, with a nostril full of cayenne pepper, a hand searching for the carotid to press, regrets over the perfectly good teeth pulled, in a Topomax daze and unable to THINK away the pain, while dialing the chiropractor whose office is next door to the acupuncturist...... both with promises of immediate relief........................
  7. jon019

    Amovig

    ...hi Kat...can't speak to the effectiveness of amovig or it's effect on busting, but have been in clinical trials for another condition .. ....if you can work it around a busting schedule, or are willing to pause busting if need be, i would strongly encourage participation for the following reasons: ....#1...with a bullet...it might work! ...if it doesn't work, you have identified yourself as a potentially willing trial participant, for a defined condition, and they already have all of your pertinent personal data. recruiting for trials is a tedious, difficult, expensive under
  8. ...point taken devonrex..... your situation breaks my heart and i mean no disrespect.....there are no absolutes for clusterheads.... ....sometimes the decades of frustration with the medical community and insurance companies that have failed us through indifference and ignorance gets to me.... i find it especially hurtful when some of the tools that help so many are unknown, misused.... or thrown at us in a useless manner.....and an opportunity to save so much anguish is lost...
  9. ...good morning Erica...welcome! ...yeah, thanks Ma for sure...diagnosing CH in an adult is a crap shoot..it would seem to be even moreso for a child.... ....you don't mention OXYGEN.....considered the best abortive and NO side effects, especially heart wise. any experience there? wouldn't need the other meds.... ...careful with the Excedrin....some folks find it helps with shadows (naproxen does for me) but is useless for a regular hit, nasty potential stomach side effects and additive to any blood thinners you may be on. methinks the caffeine is the key ..... best jo
  10. ......been doing some form of this dance for near 40 yrs now, and it continues to break my fricken heart that the absolutely true above has changed so little....especially so for O2 ...the best, highest success rate, safest, cheapest abortive.... ...it is to sigh.... and one of the many reasons for ch.com, cb.org, et al. i am forever grateful for the clusterheads and their supporters who DO understand.... and reach out to others in the "family".....if we aren't our own best advocates sometimes it seems we got nothing.....
  11. ...dang drewbie...this sounds like a mess...sorry to hear...just a few thoughts... ....O2 worked for me "most" of the time... and while there were times when i felt like i was experiencing an O2 rebound, it was thankfully rare. my hindsight belief it was having to do with an allergic reaction or system inflammation of some kind... which precipitated the hit and remained active irrespective of the O2 working on the hit at hand.... ...if this is an allergy mediated...a course of benadryl (diphenhydamine) might be in order ...somewhere between 25-100 mg/dy for 7-10 days...worth a try, j
  12. hi Amos...welcome! ...well...yikes...i can't imagine you DON'T have rebounds...so i'll ask first: have you tried/considered alternating different triptan like Zomig nasal spray (separated by 24 hrs)....effective for some.. ....OXYGEN ??!!...if you've tried we need to know how (source/flow/mask/technique)?...life changing in my case.... ....how about the D3 regimen.....cheap, easy, beneficial beyond ch, high success rate...eliminates the other meds... ...then, of course, there is busting..... best jonathan
  13. Episodic ch......Chronic ch....
  14. ......seeds, spores, grow kits....not L or M....
  15. ....took me 8.....keep looking....they be out there......
  16. ...it was the rare cycle when i DID have night/sleep hits...enough of an anomaly that in hindsight there must have been something else going on...like allergies, illness, inflammation.... ...a doc who would say night hits are a determinative symptom in ch diagnosis would also say "women don't get ch".... ...find a new doc.....
  17. ...when i was young and poor and tormented by the fools at the so called health insurance companies, i dreamed of one day being able to afford a "demand valve" which were (and are?) hundreds of dollars...i got along without....but this woulda been nice..... .....am reminded of the $500 Texas Instrument scientific calculator, big and heavy as a brick, i used to make special trips to the store to drool over with the same "some day" thoughts....now they give those away.. ....nicely done Snowflake...a very practical real world solution.....
  18. ...hi Snowflake.... ....many meds have completely different effects the first time (few times/weeks?) compared to what is achieved ongoing. or, once efficacy achieved, there may still be the "slap backs" we are all familiar with. i would caution not to make a final decision on ketamine based on one experience...especially one where you were prepared and able to abort so quickly (in my mind, what's one more hit aborted out of thousands)... ...you know your body best so these are just thoughts....but i would consider myself fortunate to have the option of trying ketamine in what sound
  19. ...i feel like me and my boy Sherman have entered the "wayback machine"....since i thought this has been general knowledge for decades!? nothing new but a short read. liking the part where they say will spur additional research (ANY research into ch is good research)....but more specifically, if lesser dosages are of sufficient efficacy so as to minimize the well known negative and severe potential side effects of over and/or extended use.... mr. peabody 'Clear Evidence' Oral Steroid Effective for 'Suicide Headache' (medscape.com)
  20. hi...welcome... ...not necessarily to defend "old man doctors", but i am part of that phrase and i feel like pointing out that MIS-diagnosing young/female clusterheads is just a quick and easy out for them on a LONG list of reasons for missed diagnoses ....all ages, genders and types of docs. few are trained/ know/learn squat about CH. i present as a classic case of CH...both symptom and stereotype.... and still went undiagnosed for years...most of us, sadly, have the same story (i think it's an avg of 3-5 yrs)..... ...be your own best advocate, if you can't find the right ha doc, a
  21. ...hi Jennifer....welcome...glad ya found us... ....frequent inexplicable metallic taste in or out of cycle that seemed unconnected to anything (except possibly teeth grinding)..never concerned me, just figured "part of the deal"... ...also...phantom odors....locker room, mold, toast, manure, several more....and an overall enhanced odor detecting facility....since i made my living with my nose it was one of the very few non negative aspects of CH for me. of course, like many other clusterheads, certain odors were a surefire trigger...like zinc welding fumes, some perfumes, and some o
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