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jon019

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Everything posted by jon019

  1. DD...thank you for your continued posting of these various studies...always fascinating reads and encouraging that there are folks out there like Dr. Schindler who are in the "give a damn" category...because it sure aint for the money....and makes me feel less like an orphan... ....also always cause for a rueful reflection on the short sighted, narrow minded, prejudices that cost us decades of research time, effort, and funding that would have saved a whole lotta folks a whole lotta agony.....
  2. ....agreed with everything Pebbles said...doubles or triples supply therefore lowering cost, side effects and rebounds. the tiny insulin needles are less scary (tho not to everybody) and painful compared to the stat dose....and if prefilled, just as convenient (i used to carry such in a stat dose sleeve). until i found zomig ns to be superior in all aspects (save price) this was my last resort abort... ....insurance companies should actually be pushing these for all the above reasons.... but seem ignorant of the product in multiple ways...which is bizarre since the money aspect alone seem
  3. .....30+ yrs here...hundreds of tanks used and thousands of hits aborted....and the ONLY negative was an occasional dry nose...
  4. ..hi Dogo..welcome! ....google an image for trigeminal nerve...any and all areas it serves may hurt before, during, and/or after...my oddest aftereffect was that my hair hurt....and i'm mostly bald... ...i'll second chfather's oxygen suggestion....and supplementing with energy drinks or a strong caffeine drink FAST at first sign of a hit helps many.. ...note that vasograin contains caffeine so that helps...but it may be affecting sleep and a need for sleep aid...have you and your physician discussed melatonin...many find it helps with night time hits... best jonathan
  5. ...hi Mezzo...welcome.... ....most find that 2-3 mg of suma is plenty to abort a hit so if you hack the stat dose you can double or triple the effectives doses and avoid the HAMMER that is 6 mg...not sure if available anymore but there used to be vials where you could draw up and inject with insulin needles the amt you need...ask your pharmacist if these can be obtained... ....at one time i obtained 18 doses/mo by way of a letter doc wrote to insurance company...called a "letter of medical necessity" ...the phrase "intractable cluster headaches" was advised by an insurance broker as
  6. Wow...yes! ...for many years now... from many sources I've seen that meditation (and other "mind tools") is useless for ch. sometimes the dismissal is aggressive. I find this to be short of sight and narrow of mind. meditated every day for every year I've had ch... didn't reduce or alleviate one single hit... but instrumental in maintaining my sanity and will to carry on between the hits...
  7. ....been both episodic and chronic.....the fear of changing from one to the other was constant and oppressive...then it happened and i learned it's really the same beast in different form... and strategies must and can be adjusted. there is ongoing discussion on which is "better"...i could make arguments on either side...but it really doesn't matter cuz ya don't get to choose. personally, upon reflection, i think the basis of the fear was "change". had a similar gut wrenching fear of hits changing side...why would that be "worse"?..dunno and never found out. ...the beast is hard enough to
  8. Tony...Amazon and others have at home vit d tests for about $50 (US)....and there are sample at home and send to lab versions also....are these restricted in Finland?
  9. ....you're doing the right thing by having it checked....it does seem odd that one of the usually transient symptoms of a beast visit would remain...but myself and others have reported a permanent constriction of the hit side pupil...multiple eye docs/neuros just look at it and shrug so i've stopped worrying about it.... best jonathan
  10. @Pebblesthecorgi....interesting question that "success" definition...methinks it's all relative and highly individualistic.... ...for decades i never thought that completely PF was realistic....while it happened for some, it seemed so rare that my goal was that which enabled the closest to a "normal" life......and i do not consider that life and career to have been possible (and therefore successful) w/o O2 and caffeine.... ...yet, that was only a ca 80% proposition...leaving 20% to deal with "by any means necessary". that included D3, all the weird stuff like diet and cayenne powd
  11. .....re D3 regimen i am of the flock...Batch (xxx) is the good shepherd...he will more than likely be along shortly, you can start with the first (has been updated) post by CHfather in this thread:
  12. ...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums... ...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby.... ...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry w
  13. ...ask your pharmacist if they can get the Teva generic.. https://www.tevagenerics.com/product/sumatriptan-injection-usp-autoinjector ...if you are using the 6 pack vials their supply is sporadic vs the stat dose if available at all.. ...as an alternative the 5 mg nasal spray Zomig formerly from Astra Zeneca...now Amneal worked as well for me with lesser side effects https://zomig.com/?gclid=Cj0KCQjwtsv7BRCmARIsANu-CQcaW9Xpzm_hGTRHyo0ZTnAU2FsR35-Pg-Igc2wr2ZyEGVsiRDGUXZ4aAhhMEALw_wcB best jonathan
  14. .....sounds right...here's hoping so... ...Edvard painted it....
  15. .....mine a bell curve....slow ramp up of number and intensity...a plateau of soul crushing bangers....slow ramp down. i knew the cycle was over when i got one last screamer which was always worst of cycle (actually prayed for that one as i knew what it meant). when i collected my wits and nerve (sometimes several days, sometimes several weeks), did the beer test.....Heineken....surefire tell..................
  16. .........yes, fortunately rarely.....check your triggers.....several 6-8 hr bangers from anesthesia/alcohol for me....
  17. thanks for posting this DD.... ...does CB or anyone have thoughts on particular form and content of comments likely to be more effective than simply saying "O2 works for me"...or is it just number of affirmative commenters that's more important? jonathan
  18. OXYGEN...OXYGEN...OXYGEN.....life changing/sanity saving....and since she in a hospital setting the opportunity is there to try w/o going thru all the hoops most of us do... .....15-25+ lpm at first sign of hit, make sure only O2 (no room air, plug any mask holes), energy drink/caffeine first and quickly improves efficacy for many, stay on for 5-10 min after hit subsides, try various breathing techniques: hyperventilation, breath and hold, slow deep breathing ...or a variation. we each find our own "style" that works best... ....and find a headache specialist....she is being poorly s
  19. @EggMan Before getting a neurologist, I was mistakenly prescribed 360 mg of Verapamil for a year for episodic cluster headaches. ...that's not necessarily a mistake..... just a little lower than most find effective...add in O2 and triptans and it's pretty standard practice (with maybe a steroid taper/IV to break/interrupt a cycle)....anything below 480 mg/dy and extended release were worthless to me..... but depending on cycle 480-1040/dy was the only prevent med that ever worked for me (both ECH and CCH). those familiar with treating CH are aware of the need to go high dosage (it sc
  20. ...get yourself a hobby...we'll call it "welding"...you can get a whole lot of welding O2 for 78 bucks.....and you can turn the dang flow to hurricane level if ya want...they really don't care what you are gonna do with it.... just DON'T say yur gonna breath it...if you feel more comfortable with a cover story tell 'em you need it for your dad, brother, mom, sister, S.O...whoever....as they are indisposed right now. this has the benefit of allowing any and all neophyte questions..... in bocca al lupo, jonathan
  21. kat...I'm not following....changing the script will have no effect on usage...you determine the flow that works for you...nobody else will know or care....
  22. ...fixed it for ya...............
  23. .....thank you for the share.....it's delightful to hear when a clusterhead (so their family too!) finds success..... ....always breaks my heart when folks say "O2 doesn't work" when it might be, just might be, a matter of mask +/or flow +/or technique.....and some of them will miss the life changing miracle I know oxygen to be.....because they didn't pursue it..... ....good onya for keeping at it til ya found what works for you.....truly one of the problems with oxygen therapy is that there is no "right" way...beyond the basics, ya gotta find out some stuff on your own (incl right h
  24. jon019

    Diagnosis

    ...boy that's an old one I haven't thought about for a long time...tried in the 80's to no effect.....relative of lsd so in theory effective...."supposed" to only be used in intractable cases (as a prevent) where other meds fail, as it has potential very bad side effects (note, with EXTENDED use).....requiring a periodic drug holiday.. ....having not seen any significant reported success with this over the years, I am initially inclined to be dismissive.....but it all depends on where you are on the spectrum that only you know....as Chfather recently pointed out....we are far more likely
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