jon019

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.....

...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...

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?

...I've wondered too...maybe it's just that Aussies speak their mind....

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...……………..

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

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)...

…..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

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

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

….it won't kill you...no matter how many times you wish it would....

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

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

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

….a clusterhead's gut is better than many a doctor's head....and CERTAINLY better informed...….

Hi Left....welcome....YES! …..ya got yourself a wonky hypothalamus like the rest of us clusterheads.....and as if the cluster hits ain't enough it messes with body temp control too...and a buncha other stuff. tis a remarkable little powerhouse.... ...have no explanation for why hot or cold or alternation of each has such beneficial effect...but lotsa folks report same. mebbe partly a distraction and/or redirection or increase/decrease in specific areas of blood flow just enough to (somewhat) get the pressure off the trigeminal nerve (like strenuous exercise works for some)….or you're "tricking' the body. myself, the hottest shower on my head I could stand helped...but couldn't handle ANY cold.... which was really too bad because I worked in a cold storage where a -20 degree F cold room was available any time.... ...just remembered someone recently posted re bare feet on a cold floor being helpful..... Best Jon

Yo Daniel, ....no intent to rag on you for what works for you....but I believe in informed decisions and cost:benefit calculations....only you can do that for you... ...one of the soul crushing aspects of CH is that what works today may not work tomorrow...for no discernible reason.....so: …"to ensure peace one must prepare for war"....now...not after Pearl Harbor.... Best Jon PS: to be clear...caffeine is good...and a lot of it at the right time is better...for clusterheads anyway...

Hi Daniel...welcome.. Looked it up.....Grandpa powder = caffeine+aspirin+paracetamol. Caffeine is our friend...the powder gets it there quicker....but careful re longterm use...the aspirin and paracetamol in there can have significant negative side effects... What is the availability of energy drinks in SA? Anything with at least 100 mg caffeine and 1000 mg taurine (caffeine booster among other things) taken quickly and in my case, super cold, will get ya the needed effect (blood vessel constriction) quickly as you crank open the OXYGEN tank. Speaking of OXYGEN....if your CH progresses (likely but let's hope not!) you're gonna want an effective, quick, cheap, safe, medically acknowledged, side effect free, front line BEST abortive. That would be O2! Dunno what your med system is.... but you might wanna start now looking into how to get the right script and the logistics of obtaining. High flow (15 LPM) or a demand valve type, proper non rebreather mask, and proper technique.... has saved the life and/or sanity of many a clusterhead.... In the meantime.... look into the vitamin D3 regimen...also quite effective for a high percentage of clusterheads... Best Jon

Trader Joe's has several types of ginger in candied and dried forms...sourced from Thailand. Alas...the exquisite Australian version they USED to carry no longer available. Never did squat for me re CH.... but dang good spicy eatin'....perhaps related in effect to capsaicin containing foods/treatments helping some folks with some types of headaches/shadows....

Hiya plhbn...sorry the beast found your address....but welcome aboard sleep, stress, food, barometer, activity CHANGES (like vacations) were ALL triggers for me...I stopped trying to figure out which one(s) because it basically came down to ANY changes in routine. Makes for a restricted life...yet another present from the beast. Depressing way to live...which is why forums like this to help figure a path out of the darkness.... triptans in various forms have been reported to cause rebounds and/or lose effectiveness...the goal is to make them a last resort abortive. I had my best luck with Zoming nasal spray (5 mg)...oral tabs were worthless to me....too slow. injectables effective but felt like killing a flea with a hammer and SO DAMN expensive.... OXYGEN OXYGEN OXYGEN...saved my sanity...perhaps my life. best reported success with high flow (>15 LPM) or demand system, the proper non rebreather mask (one such priceless gem available at clusterheadaches.com), and proper technique (there are several.... including breath and hold, hyperventilation)….if no medical available welding O2 is the same stuff in a different labelled tank...quite safe and usually cheaper.... energy drinks at first sign of hit and while racing for the o2 proved quite effective for me....triple strength coffee early in career, then the energy drinks came out. all taste like ass soes yur looking for content first: at least 100 mg caffeine per serving and at least 1000 mg taurine (caffeine booster). Buy by content and price...I get mine at outlet stores for $1 per 16 oz can (good for 2 hits). Red Bull too expensive and lower in the ingredients you need.... I have not heard this from others... but my first thought was perhaps you've developed a tolerance for diphenhydramine or there is some kind of rebound effect going on like with triptans. I'd try weaning off for a while and/or trying melatonin for sleep. many a clusterhead finds it helps with nocturnal hits.... interesting comment re reasoning and memory....I had quite the opposite. used to do a lot of critical writing at work and would almost wish for a cycle when I had an important project...seemed to sharpen and clarify my thinking....out of cycle it got all muddy. similar to depression...in cycle no problem...too busy...out of cycle...DAMN! Best Jon

Welcome Hs...........what Batch said! .....there are clusterheads alive today because of DJ...and when ya get to (ch.com), poke around, won't find much re Moya Moya .....but there's 'bout 20 yrs worth of collected clusterheadache info unavailable anywhere else................. Best Jon

.... good reminder ff....I used Lincare for multiple CA and OK trips..took a major worry off the table...same prices as home...no hassles....nifty travel service form on their website. I'd specify no concentrator tho... doesn't work for most clusterheads... Best Jon

Wow....cool....cr and ch are so inextricably intertwined this makes complete sense....