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jon019

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jon019 last won the day on July 2

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About jon019

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  1. jon019

    Imigran Injections Discontinued?

    ...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
  2. jon019

    When do you consider your cycle over?

    .....sounds right...here's hoping so... ...Edvard painted it....
  3. jon019

    When do you consider your cycle over?

    .....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..................
  4. jon019

    Question about D3 + other

    .........yes, fortunately rarely.....check your triggers.....several 6-8 hr bangers from anesthesia/alcohol for me....
  5. jon019

    IMPORTANT CMS O2 SURVEY!!

    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
  6. jon019

    My sister, I"m helpless

    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 served best jonathan
  7. jon019

    Verapamil helping, hurting, or doing nothing?

    @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 scares most PCP's)....note that heart rhythm must be monitored... Usually I continue taking whatever combination I’m on through a cycle; for fear of things getting worse. .....that's good...once a treatment protocol is agreed on with your provider it is pointless not to give it a fair chance....of course, common sense should prevail should side effects become a problem.....tho it should be noted that side effects frequently subside with continued use.... Oxygen (either prescribed or welding) and sumatriptan injections are my lifelines. ......and nice to have on hand for any breakthroughs post D3 or alternatives....one of my favorite sights in life is a DUSTY O2 tank..... I’m going to add Benadryl to my list of preventatives though. ....as needed to deal with allergy mediated hits or sleep issues, I hope....not an automatic prevent protocol...
  8. jon019

    Oxygen ROCKS

    ...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
  9. jon019

    Oxygen ROCKS

    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....
  10. jon019

    Oxygen ROCKS

    ...fixed it for ya...............
  11. jon019

    Best breathing techniques with O2

    .....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 here).....
  12. 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 to see failure stories than success....still, it's a long shot....
  13. jon019

    Vitamin d regime - side effects?

    ...when episodic most of my cycles were eerily consistent...same number, intensity and timing. but on occasion, would get the "one hour wake-ups" all night long ...very odd change in a remarkably consistent pattern. it had to be an outside influence that i only figured out yrs later (greatly influenced by Batch's thoughts)...musta been allergies... ...would suggest a trial of Benadryl (diphenhydramine)....an old style anti histamine that works much better for clusterheads than the newer versions...do a search here for Batch and benadryl for dosage advice and a way better explanation.... ....for reasons i am unaware of O2 worked every time within mins for these wake ups...wasn't always the case "normally" ...where O2 was 75-90% effective.. best jonathan
  14. jon019

    Best breathing techniques with O2

    WOW!...what spiny says!...feels like we been peeking at each others homework! ...the only thing I would add to try is a technique a respiratory therapist (thanks Judy-Bob) once advised that has served me well....called pursed lip breathing...you make your lips real small and forcibly "puff" out air causing back pressure...opens airways, improves oxygenation and CO2 expulsion....google it for a better explanation .... OXYGEN ROCKS!!!!
  15. jon019

    Please help with verapamil quetions

    ...be aware of and prepared for the beast to reappear post steroid taper...while it can break a cycle, the usual purpose is to buy a temporary( 10-14 day) reprieve until a prevent (like verapamil and others) kicks in....
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