Jump to content
ClusterBusters

jon019

Advanced Members
  • Content count

    360
  • Joined

  • Last visited

  • Days Won

    44

Everything posted by jon019

  1. jon019

    Chlorpromazine/Thorazine for CH?

    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...…………...
  2. jon019

    Just diagnosed

    YUP!
  3. ...nothing to add to that...…………...
  4. jon019

    Emgality Shot for Episodic Clusters

    ….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....
  5. jon019

    New need info

    OXYGEN....………………………….
  6. jon019

    Taurine! WOW!

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

    flying on CH

    ...carry a 2 oz 5 hr energy type drink...
  8. jon019

    Busters Unite! Newbie needs help

    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
  9. jon019

    How powerful is the mind??

    ...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...……..
  10. 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..............
  11. 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 ???
  12. jon019

    Doctor list

    This from National Headache Foundation provider locator for Ohio...no personal experience there... https://headaches.org/resources/healthcare-provider-finder/
  13. 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...……..
  14. 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.....
  15. 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...
  16. jon019

    oxygen

    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?
  17. jon019

    Shadows back from pizza

    ...some of us sensitive to nitrates (pepperoni, sausage, Canadian bacon, bacon), mushrooms, tomatoes (high glutamic acid), added(?) MSG....didja add a diet drink to that?.....aspartame vasoactive too......
  18. jon019

    Is there something about Australia?

    ...I've wondered too...maybe it's just that Aussies speak their mind....
  19. 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)………...
  20. jon019

    Work and CH

    ...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...……………..
  21. jon019

    Work and CH

    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
  22. jon019

    Tubing and syringe sizes

    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)...
  23. jon019

    Work and CH

  24. jon019

    Looking for advice

    …..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
  25. jon019

    CH related to tumor

    ...yup...true...but I personally know a fella who presented with classic CH...I refused to confirm for him.... so he went to a real doc...it WAS a tumor, they took it out and saved his life.....
×