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Posts
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Joined
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Days Won
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Everything posted by jon019
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...very FEW reports of success for clusterheads....not pure O2 and lower flow than necessary....
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...carry a 2 oz 5 hr energy type drink...
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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
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...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...……..
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...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..............
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...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 ???
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This from National Headache Foundation provider locator for Ohio...no personal experience there... https://headaches.org/resources/healthcare-provider-finder/
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...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...……..
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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.....
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...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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Hi Greg...can you tell us why they are denying service even with a script...is it ignorance of CH needs by insurance or O2 shop?
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...I've wondered too...maybe it's just that Aussies speak their mind....
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Anxious Supporter (Husband) Here - Are my views on CH Skewed?
jon019 replied to Mjedwards409's topic in General Board
Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing: https://clusterbusters.org/forums/topic/4983-episodic-to-chronic-advice/ Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips". I realized it wasn't gonna kill me, why should it disable me? My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………... -
...e-tanks may have saved my life...YMMV...…due caution for any pressurized gas is called for....never had one single issue with a e in what is a very stable cart....I love me some m tanks.... but am no longer able to carry around...……………..
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Yup...e-tank...the question was how I handled o2 at work...took ona these EVERY day for 20+ YRS...super easy to transport in car and roll around. used M-60 tanks at home...see below...the e lasted for 2-4 aborts....the M at least 3X that.... Oxygen Cylinder Sizes and Info
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you got LUCKY...ea vial is 6 mg suma in 0.5 ml solution....potential for 15 aborts vs 1 or 2 for a statdose (as many get by with 2-3 mg of suma) ...so just draw up partial amount (found by trial and error) and save the rest for "next time". I used 1/2 ml 30 gauge insulin syringes....BUT much prefer 5 mg Zomig nasal spray...as it had nunna the ooky side effects of suma (for me)...
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…..don't get used to the good feel of Valium....won't do squat for CH and can set up a whole nother problem down the line. it twere the methylpred...keep working on the O2
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Hiya CB...welcome...glad ya found us...and glad you found something that works for you. ...if you're interested in anecdotal evidence from a buncha clusterheads like yourself... check out our sister site below. type in: "capsaicin" or "hot sauce" or "cayenne pepper" or similar in the search function....then follow the threads. be prepared for an entertaining, colorful and lengthy read...no membership required tho it would be a good idea....there's decades of shared experience available. The saying there goes "take what ya need and leave the rest"....next to "shit happens" that's my favorite admonition…. ….you may even find a post or two by me on this subject...short version: snorted powdered cayenne powder for a while...and it sorta worked for a while... then it didn't...but that's me. also tried lidocaine in the nose ona cotton swab...damned tough to "hit the spot" during a hit...and one of the FEW times I ever found CH funny as I pictured myself in tears while doing yoga poses trying to get the "right angle". never could get it to work but I still got TWO 13 yr old bottles of lidocaine sol...just in case... http://www.clusterheadaches.com/wwwboard2/index.html Best Jon
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Hiya big j...I like the handle...it's what the warehouse guys called me except when they were pissed.....then it was "management f**k". I cop to one of those two...but opinion was divided... OXYGEN changed my life and at least saved my sanity.....but you're scaring me with that torch technique....a mistake on pressure or direction (both easily affected by a hit) and you're in a world of hurt . The proper mask, flow (15-25 LPM) or some form of demand delivery, and technique (several kinds) and lives have been saved... Best Jon
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….it won't kill you...no matter how many times you wish it would....
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Hiya Fun.... ...the eye part is really puzzling but it sounds like an entrapped/inflamed nerve. might try a capsaicin crème like Salonpas or a lidocaine/prilocaine crème...needless to say don't get either in your eye! the big hammer would be Botox injection if this becomes ongoing....probably good idea to check with a dermatologist... ...the other thing...and I forget the name but Batch explains it quite nicely....my hair hurts after a bad hit(s) (and I'm mostly bald)….weirdest damn thing and actually one of the few things that got thru to folks I was trying to explain CH to...."wow, that must really be a bad headache if even your hair hurts" (figured they were relating it to a bad hangover)....quite long lasting but eventually faded... Best Jon
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Yo CHf, I don't think that's a CB.org issue....been same for me anytime/anywhere I cut and paste for at least a year now. Got so used to it that I stopped thinking about it but it did steer me away from link inserts (as you've seen and helped with). Was an older PC (2013) so I figured some kind of corrupted file or Windows update glitch (nearly EVERY update for me). Then I got a new Thinkpad and same damn thing...making your question intriguing. Moxie...thank you...I started playing around with clipboard...and while I am so far unable to get it to work as you described (and I'm sure that's on me)…. once I toggled "enable clipboard history" in settings/clipboard, all of a sudden I can highlight/cut and paste the FIRST time....YEE-HAW! Really want to be able to access clipboard history so I can summon links I've used in the past w/o having to search all over again. Best Jon
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Yo DM, ...gotta love them M tanks...you date an E-tank but ya marry an M..... ...I put away all thoughts of what my life would have been like without OXYGEN for aborts as too scary to imagine. mostly worked great for hits but nothing for "shadows" of a hit...for that, energy drinks and/or naproxen helped...or just a grim determination that "this too shall pass".... ….have seen multiple reports of folks trying O2 as a preventive...usually at night to prevent nocturnals...do not recall hearing of success... but dang it's worth a try... best jon
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….a clusterhead's gut is better than many a doctor's head....and CERTAINLY better informed...….