jon019

....nope...impossible to say enough.....OXYGEN should be highlighted in every CH forum. may not work for all, but is among the rarest of the effectives: works bestest for the mostest! i am sad when a fellow clusterhead has exhausted, w/o success, all the critical variations of use (flow, mask/valve/tube, technique or timing)....SADDER STILL when they don't or won't exhaust every attempt due to lack of information, misinformation, bad luck, unavailability, frustration, or just frigging despair... ....starting in 1985 and on, there was nothing comparable for me. i KNOW O2 saved my sanity, pretty sure it probably saved my life. have seen SO MANY reports of same, with the tears of gratitude nearly leaking from the text, that i will never not be a fervent supporter... ....the success rate now only recently rivalled by the D3 regimen and busting.....COMBINE the 3 and you really got somethin'....

...hmmm...thinking partial for blood flow diversion. i had access to a walk-in -20 F cold storage... and it always pissed me off that it never stopped a hit, just cooled off the hot flash that always came along....

OXYGEN!!!...your best bet non-medication (traditional or alternative) hit killer. no side effects, no baby harm or medication pass thru, quick, easy, relatively cheap in my experience...tho i would have freely gone into debt for the sanity, perhaps life, saving benefit. when insurance didn't pay for me i made a self pay deal with the O2 shop. welding O2 will bypass all the hassle.... except for the logistics. is too bad, but it won't change cycle length. proper flow, mask, and technique all critical.

...yeah...it was a worry, but after a number of real bad hits early on....and even w/o a diagnosis...there didn't seem to be residual physical damage so i started worrying/concentrating on the mental health aspects. hard work...nothing physical to grab on to...i constantly wonder how folks maintain in the face of CH. my admiration for the perseverance of clusterheads is endlessly deep... ....what became near incomprehensible for me was "how is it even possible to SURVIVE a pain so incredible it defies description?". there were 10's (thankfully very rare) where it hurt so bad i actually forgot to breathe......yet here i am....

.....fixed it for you...

...is ever thus the ongoing frustration across multiple healthcare systems....my insurance would cover triptans at $600/script/mo, yet deny the oxygen that would have eliminated 90% of that cost......

...intriguing indeed....thought about it a lot as the hits were inevitable and predictable damn near to the minute. excuse me mr. beast, i don't have time to screw around with you right now...but perhaps we could reschedule? ....played around with energy drink/caffeine and verapamil dose timing and seemed could shift timing a little bit....never enough to make it a worthwhile effort... ....brief flirtation with "stress mgmt" as stress was a prevent for me. nevermind the insanity it takes to actually even consider finding stressful situations as a "therapy"....sheesh....silly me, the job was stressful enough... ....there were a few occasions over the yrs where a beer and its consequences were intentional...whether is was simply because i could not, at the moment, handle the dread of an upcoming hit.....or getting it over with as there would be a "free" time post. alas, the next hit became unpredictable....

...see PM

....Brian, my admiration for you and what you go through, your support of this family, and your ability to come on here with personality is immense..... just not quite as immense as the frustration with my own inability to offer anything other than vibes, prayers, thoughts and pleas to the universe..... ....have always thought maintaining my sanity thru this whole ride has been my best achievement…clusterheads in general, we gotta be some strong freaking people. you got this, and we are here even if you just need someone to listen....

...and FWIW, in case it helps.....when this happened with my posting a month or several ago: changing the font (pasting into word and changing font there, then pasting here) of my msg allowed posting. lately, that didn't work, so tried the spiny "split the msg"....that worked...go figure (please!)

Hi Kimbers....golly we love our supporters....you are ON this! Thank you from the clusterhead family.... ....yup the above....pred buys time for the prevent to start working. typical time for a verapamil ramp up is 7-14 days. sometimes the initial dosage needs to be increased so not to give up too soon going this route. most common reported maintenance dosage is 480+/- mg/day in divided doses of immediate release (favored over sustained release version)... ....OXYGEN (will be interested to hear your setup...proper flow, mask/technique is VITAL) plus energy drinks were my eventual go to along with the D3 regimen. then, of course, you are on a BUSTING site which may make all this moot... best jonathan

...yeah, great ask! i used Lincare (WA) for many years ....they initially did not carry M tanks and were none too interested in doing so (my guess that the cost of inventory, storage space, supply of tanks/regs, training, and just plain ignorance of need all potential reasons...they never would say). But, i asked so many times that the need was known, and one time they surprised on arrival at the O2 shop with a couple just for me....and the tech "loaned" me the proper regulator. Took a while, no guarantees ....but for the sake of clusterheads down the line, asking for M's can help spur motivation to supply. Econ 101 (the last one i ever took) "supply evolves to meet demand"....

...i hear something like this or a Southern street fruit seller in your "lyrics"...

....WOW...that is way cool...it's lyrical, i was singing it!

....demon theme...

...yup, gimme shelter!

...i get it...there were times when an attack/cycle seemed so malevolent, intentional, designed and implacable that the thought of the beast as "entity" was nearly overwhelming. didn't wanna go there, but it served as a convenient anger sponge. eventually learned to direct the anger toward collecting the knowledge, tools and strategies for battling "the beast".....

Hi Gemma.. welcome.. ....that is beyond CH scary and not one i've heard of in clusterville...do you have a neuro? what is your diagnosis? i'm liking Spiny's question on meds...are you taking any of the anti-epileptics /anti seizures (gabapentin, topiramate, sodium valproate...) or such? maybe a side effect?. sorry, i'm grasping, this is a puzzler...

...my favorite online clusterhead sayings: ..."take what ya need and leave the rest"... ...."if you're not sure if the med is working...it's NOT!" ...."fuckit".....

...ditto...for me 70 percent reduction in hits and intensity (of some hits)... Oxygen/energy drinks for the blow bys. Zomig ns absolute last resort. Weened off when I got tired of always being tired

...to second what Spiny said. ER verap was totally useless for me at any dosage. many report similar. the pharmacy subbed it in for SA one time and panic ensued as "it doesn't work any more!". my dosage needed for low cycle was 480, 960+ for high cycle. found that timing doses to expected hit times was somewhat helpful. ...Topamax was useless and just made me dumb......some folks have reported that taking before bed reduces side effects during day and side effects lessen over time.

...ima big guy and all those ear-hook styles hurt...any reason ya can't do one of these vincent?

...no personal knowledge of SB. tried lidocaine up the nose, which was an hilarious failure, but that was mostly trying to hit certain spot while writhing with a hit. a quick google search indicates minimal side effects....find someone with experience and give 'er a try!