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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

    Oxygen ROCKS

    ...fixed it for ya...............
  2. 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).....
  3. 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....
  4. 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
  5. 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!!!!
  6. 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....
  7. ....the ending about using as a prevent is definitely a "yeah right" moment... ...most of it looks like stuff I've done...tho a LOT more violently and near involuntarily.... ....what does intrigue me is the possibility that a regimented plan involves a thought process and distraction that most definitely could be helpful...the few times I was able to put my mind somewheres else were remarkably successful........it was too hard to replicate consistently
  8. jon019

    Diagnosis

    ...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV best jonathan
  9. jon019

    cluster headaches and exercise

    @Tomas.....get caught w/o tools....you could try hyperventilating (with INTENT)....actually worked for me......once or twice...
  10. @kat_92 hmmmm I've had similar taking verap (or not)....bad combo and docs couldn't figure.....but when taking verapamil (which is really concrete mix) LOTSA water and fiber (metamucil if diet deficient) very helpful.............
  11. ...very nice post...thank you for sharing.....attitude, plan, TOOLS! ....my neuro had same thoughts on verapamil...was over 1000 mg at times.... ....have you considered continuing at a lower dose in between cycles or a ramp up for expected cycle start (if you know your cycles well)... it is possible to titrate dosage in between so you don't have the yoyo of stop and start and the need for prednisolone (IV/taper?) is reduced. you really want to avoid the steroids as much as possible.... as even 1-2 tapers/yr can have significant negative effects (and sometimes don't even work in my experience)... ....Zomig NS as effective for me as Imi with far fewer negatives....abort of last resort if energy drinks + O2 didna work... ...OXYGEN ........... best jonathan
  12. jon019

    cluster headaches and exercise

    Cluster headache survey....x/clusterheadaches.com....also you can search "triggers" at that site and here http://www.clusterheadaches.com/survey/index.html
  13. jon019

    Oxygen from Primary Care?

    ...yeah....what Pebbles' said...appears something else is going on here....the scripts for Imitrex, prednisone and verapamil all indicative that "standard of care" was referenced as you don't just pull those out of thin air if ya don't know CH... ...a headache specialist now your best bet from the med profession...but these folks are booked for months so BE SURE to indicate you are a cluster headache patient currently IN CYCLE...if they know their stuff and are truly patient advocates they will work you in quickly...also be ADAMANTLY willing to fill in for any cancelled appointments. You shouldn't have to convey desperation....but it won't hurt..........
  14. jon019

    Prednisone

    Me too! .....and we won't stop "nagging" you until you find a doc who will prescribe... or you "take up" welding.... It cannot be emphasized enough...it is a LIFE CHANGER...those meds you hate taking are likely to dust in a drawer...I KNOW it saved my sanity and perhaps my life.... and countless others. I can STILL tear up recalling the first time 35 years ago when OXYGEN caused a hit to drain away like water down a tube...and I KNEW I had my life back..........................
  15. jon019

    Benadryl

    ...............advising 4-8 X typical dosage of ANY med is irresponsible.........
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