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jon019

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Everything posted by jon019

  1. ...yeah...what Freud said...persistence PAYS...I used Lincare (self pay/ins pay/no pay (long story)) and have heard EVERYTHING you describe...so it's really an individual manager thing...go over their head as diplomatically as possible...and get to know the driver/delivery person/back room techs REAL well...not always, but the farther (further?) you get from mgmt. the BETTER chance for care/concern/compassion/SERVICE....…………..
  2. ...umm......well...I kinda thought that's what CLUSTERBUSTERS.org was all about...………………...
  3. jon019

    24hrs in

    great...thanks for the update... ...caffeine can be a trigger....for myself if taken outside of normal hit times it caused more frequent hits.....but if eliminated until needed it proved to be an excellent adjunct or abortive....I believe the body adjusts to regular caffeine consumption but lags at a high dose...hence the effect we need (vaso-constriction)….
  4. jon019

    24hrs in

    ...first things....do you have a CH diagnosis? ...do you have a headache SPECIALIST doc? ( this can be CRITICAL)...who prescribed the Imitrex? did he/she discuss Oxygen or preventatives or a prednisone taper to break the cycle? we need some history here to help you better...…... …."getting one" ain't gonna work.... and you'll need a prescription unless you go the welding O2 route....and a combination of highly portable e-tanks and M-60's is good plan...I used 6 and 2 of ea... ...caffeine is a vasoconstrictor...all by itself is helpful for head pains of various kinds and is frequently combined with aspirin for superior effect (see Excedrin...which ain't much use for CH hits beyond a shadow)……,.anyway, the caffeine in HIGH doses taken IMMEDIATELY at first sign of a CH hit can be helpful or even abortive for some folks... ….energy drinks have a high level of caffeine (you want 100+ mg/serving) combined with various other ingredients the most helpful for us being taurine (minimum 1500 mg/serving) which seems to turbo boost the caffeine...sometimes were all I needed...other times made the O2 much more effective. buy by price not brand name, COLD and fast better, there are sugar free versions as the regulars have ridiculous amounts of sugar...beware artificial sweetener aspartame as it is a trigger like MSG for some....
  5. jon019

    24hrs in

    ...not if used with proper technique (can be different for individuals...but easily learned what works for YOU)....enough flow (15-25+ LPM)...and the correct mask (NON- rebreather)..….saved my sanity, perhaps my life...………….. ...WAY cheaper than triptans...fast, easy, NO side effects...portable with planning ………..
  6. jon019

    24hrs in

    OXYGEN!!!!???? ...............w/an energy drink back...…………..
  7. ...having witnessed a cluster attack where every fiber of my being wanted to call 911 despite what I know....and having been witnessed having a cluster attack where I had to BEG them not to call 911 because of exactly what you say (plus no insurance)....I don't think it's practical to expect perhaps a complete stranger to witness what a cluster attack looks like ….and believe a piece of paper that says basically "nevermind"..... ...that said, I do believe it would be a good idea to carry some kind of "medic alert" type indicator for when they DO haul you to an ER...………...
  8. Holy f'ing shit.....how could I have been so stupid to miss this for 38 years??????!!!!
  9. ^^^^^^^everything CHf said!...so I'll repeat for emphasis... ….that is a weird and potent mix yur on....if the Indo works it changes your diagnosis and you can drop 2 of those right away....be aware of potential stomach issues and talk to your Doc about remediation measures...problem now being you won't know which of the 3 is effective. normal practice is to try the Indo first and alone to RULE OUT hemicania continua.... ...if truly CH....GET OXYGEN (the BEST abortive)….it has changed/saved many a clusterhead's life and sanity (decades ago for me)...add an energy drink (minimum 100 mg caffeine/1000 mg taurine) at the first sign of a hit improves efficacy for me and many... NOTHING to lose with the D3 regimen (except possibly ALL other measures )...and its good for ya CH or not.... ...totally understand the fear of 'chronic'...I was same..... but having been both, the difference was just attitude...once ya got a plan and the tools it's just different forms of the same beast to manage...was episodic for 23 yrs, it helped me to think of episodic as just being "chronically periodic"....perhaps just a semantics game, but "it's all in yur head" anyway, right? Best Jon
  10. ...since I no longer use I don't pursue local access.....internet searches show these below...which I do NOT endorse or know if valid...only link... ...the number of people who report difficulty finding, if at all, tells me it may be a fruitless search....which is really too bad....and puzzling ..if I was a conspiracy theorist I might think the drug companies would rather sell the DAMN expensive statdoses over the more efficient vials... https://mms.mckesson.com/product/467246/Glaxo-Smith-Kline-00173044902 https://www.healthwarehouse.com/sumatriptan-succinate-6mg-0-5ml-vial-5-pack.html https://www.txvendordrug.com/formulary/search/drugs/imitrex-6-mg05-ml-vial
  11. Voc...have you looked into getting suma in vials (6 x 0.5 mg)? No tear downs required and you can inject exactly what you need with diabetes needles. Used to cost me the same ridiculous price as the statdoses…. but with MANY more aborts. avoided the HAMMER of a full dose (which I believe is side effect heavy and contributes to rebounds)... …..eventually found my way to Zomig 5 mg NS....all the benefits with nuna the side effects for me....added bene of 18 hr 'free " time...…..
  12. Hi Stuart…..with a reference that old and minimal, if any, reported efficacy (saw discussed years ago) this sounds like "let's throw a really powerful drug at a problem we don't know what else to do with".....I'd do oxygen, energy drinks, D3, busting and/or perhaps a prednisolone taper and verapamil before I even thought about this stuff.... ….side note...I know a old pharmacist who worked in a mental hospital...he and his colleagues used to joke that the only folks who could handle thorazine were the ones crazy enough to need it...…………...
  13. ….Henry Ford used to say " whether you think you can...or you think you can't...you're right"....always a good idea to solicit opinion...but there is only ONE way to truly know....every med and every strategy I ever tried I went in believing "THIS is the one"....that way I knew if it didn't work it wasn't because I didn't give it a FAIR shot....
  14. OXYGEN....………………………….
  15. jon019

    Taurine! WOW!

    ...very FEW reports of success for clusterheads....not pure O2 and lower flow than necessary....
  16. jon019

    flying on CH

    ...carry a 2 oz 5 hr energy type drink...
  17. Hiya Horton....welcome....dunno if yur handle was intentional but I can't resist: "Horton's Syndrome" is an old time name for....cluster headache! It's not amusing... but definitely a boy howdy..... Denny did a beautiful post in the CB FILES section re O2, busting, plus...a great list of links! https://clusterbusters.org/forums/topic/5997-under-construction-welcome-newcomers/ OXYGEN may change yur life. Short take away....ya need 100% O2 with a flow of at least 15 LPM (some go higher: 25-40), the proper mask, and the right technique (best determined through trial and effort)...ya need tanks large enough for 10-20 min usage minimum, multiple times...those emergency oxygen cannisters are a joke... Can't answer whether any of the medications you list interfere with busting, but if you are concerned with rebound headaches...those are as bad or worse than Imi...or don't work for anything beyond a shadow (except for the B12, Mg and tiger balm)..as an old engineer used to tell me of a useless effort..."I'd drop that like a shitty diaper".... The D3 regimen has saved many a clusterhead too....and it's good fer ya anyway...……. Best Jon
  18. ...real interesting topic!....I've seen numerous clusterheads say they don't come to the forums when in remission because of fear of triggering....never heard that it actually happened...for me it made no difference... whether episodic, chronic or shadowy (now)….but I totally understand..... ….twice in my 38 YR CH career I was actually able to think away a hit...it was during a period where no meds were working and I was just so pissed and frustrated that I needed SOMETHING else....the effort was so exhausting and required such determined concentration that it was impractical for the 3-8 hits a day I was having...but I've always wondered...……..
  19. jon019

    oxygen

    ...now I'm flabbergasted for a completely different reason...mayhaps a new strategy for us "older" folks?..... ...for those unable to get med O2…..and there be many clusterheads using welding O2....well, sometimes a fella/gal has got to do what a fella/gal has got to do....and I'm reminded of what most any clusterhead has said at one time or another: "I'd do ANYTHING to stop these hits"...the tiny chance of impurities in welding O2 pales in comparison to the sometimes life altering meds that get thrown at us.......worth it if it stops ONE hit, let alone years' worth..............
  20. jon019

    oxygen

    ...sorry...I'm lost again....sounds like you are saying that Medicare is telling you they will cover...for CH? I don't think so ???
  21. This from National Headache Foundation provider locator for Ohio...no personal experience there... https://headaches.org/resources/healthcare-provider-finder/
  22. jon019

    oxygen

    ...ok, making a little more sense now (the supplier denial part...NOT the horrendous ridiculousness of Medicare not covering)...but the flat out "NO" from supplier is still puzzling if you are willing to self pay...sounds like they just hear 'Medicare" and don't want to mess with that in any way...because any competent national supplier would certainly know about O2 use for CH...it's in the medical lit as THE first line abortive... ...re welding O2...as related many times over the years on this and the ch.com site....contaminated O2 makes for shitty welds...welders and their customers DON'T put up with that...no way, no how....bad welds are dangerous and legally actionable. don't let the banged up, dull paint tank fool ya...it's the same O2 from the same "spigot"....just don't tell 'em you're gonna breath it...makes 'em all squiggly...……..
  23. jon019

    oxygen

    WOW...I'm flabbergasted...been an O2 user since 1985 when I USED to hear this....what has happened!!?? ...I'd go welding O2 if I was you folks.....
  24. jon019

    oxygen

    ...sorry...not quite following...who is saying you have to be a COPD type patient...that is ANCIENT ignorance I haven't seen recently? I used Lincare both ins and self pay with no problem once I educated them on CH (some mgrs, other already knew)...even used their travel service where I had E tanks delivered to a hotel room (no extra charge!...it was awesome)…..one office located in Lakeport...dunno how close that is to you...others farther away ….for problems with insurance company I got my HEADACHE SPECIALIST (critical component of your CH battle plan) to write a letter of necessity for O2 and triptans at various times...makes it tough for insurance to deny as then they are practicing medicine w/o a license and w/o having seen you....at other times got the HR Mgr of my company AND the insurance broker who sold the health insurance to my company to intervene...that last one worked wonderfully as you aren't the customer, they are and get an ear.... ...you GOTTA get O2...it will change your life....if this all gets too complicated go the welding O2 route...cheaper and easier...folks here can help with the details...
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