jon019

...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!

To quote myself, cuz i'm tired and it's easier than rewriting: "My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were generally lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's manageable." now....re meds: ...this is an alternative medicine site, so i always think long and hard before sharing my experiences with western pharma....but it's what i know...and frankly, i'm an opinionated sumburger.... ...no personal experience with the alternative methods and substances discussed here...only that i whole heartedly endorse, follow with passion and glee the success stories, applaud the ongoing research, and am delighted by the increasing societal acceptance. were i just starting out on this journey today, i would bag all the 20+ meds tried (except for OXYGEN!!!) .... avoid all the woeful lack of western medical knowledge re headache ...and CH especially... and go the Clusterbusters route! it's too late for me, but i would encourage you to explore.... ...interesting...one of the most frequently reported and distressing side effects of verapamil in males is impotence. same area of "action" ...so consider yourself fortunate....

Sorry..I'm smiling and laughing, ...oh we get that, no problem......sometimes ya just have to. there are so few times in life when you can laugh and cry at the same time. still vivid memories of catching my bawling self in the mirror a couple times during a real bad cruncher, and bursting out laughing: hair askew, eye closed, face crooked, snot/spit/god know what else smeared all over....who IS that guy!?.... I think, because misery loves company. It's so nice to have people that understand this "thing" ....ask, share, support, make shit up, vent, whatever...we care! clusterheads/supporters are our own best, frequently only, advocates and company...we have to be.... This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. ....oh, i thought you had more experience with it. my experience and observations of most frequently reported over the yrs: takes a 10-14 days to work (which is why a concurrent prednisone/methylprednisolone iv/taper is standard western med treatment), takes a while to dial in, just when ya got it figured stuff changes. 240 mg is a low dose, many go higher (some much higher) so best to start low and build to higher levels if needed. more reported success with immediate release vs extended. lotsa water/fiber to keep things moving along. timing doses to expected hits sometimes helpful. highly recommended to do baseline ecg and repeat as dosage increased significantly due to possible heart rhythm effects (reversible upon discontinuation). a headache specialist neuro (regular neuros can be and usually are as ignorant of CH as regular Dr's) is familiar with high dosage tolerance in cluster patients and can guide you through up/down tapers as well as other control measures. there are those who believe extended use causes ECH to turn CCH. again, an experienced HA specialist would have thoughts on this. i used verap for 7 yrs before dialing in the OXYGEN, energy/drink, D3 and zomig ns. turned chronic 2 yrs after...so never felt a connection. chronics will tell you they'd rather be episodic, episodics just the opposite. having been both, to me it's all the same shitshow, just a different channel. most all tools work, just in different ways....only you can figure your best path. Also worth noting--- I took melatonin last night, 1st night in 4 ....good on ya for finding that, many find help there, be willing to adjust dosage. Benadryl (diphenhydramine) also helps with sleep and allergies that may trigger hits... I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." ...a log is a great idea, if you are organized about it there is lotsa great info to be gleaned.... ...i used to PRAY for that last screamer...knowing a) this is gonna be bad!! b) yee-haw, it's gonna be beer-thirty in a few days!! it's all relative... I'm going to try the Vitamin D3. ... do all the regimen...no dabbling.. Have not tried O2 yet, ...YESTERDAY!...there are countless clusterheads who can testify to OXYGEN as a LIFE CHANGER! 15-25 lpm, non-rebreather mask/demand valve/direct from hose, and dialed in (for you) breathing technique all vital... and definitely I normally stay away from energy drinks.....but perhaps not anymore. ...totally understandable...i've never touched one outside of CH need myself....but, incredible difference maker used judiciously. some prefer just a high dose caffeine beverage...really hot or really cold for whatever you use can help... But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball .....nothing regular or planned, but i could pound caffeine and be asleep in minutes....many others report same.... I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend ...if ya want a chuckle check out this link: New CH.com Forum - Dopiest responses to CH (clusterheadaches.com) ....poke around the rest of the ch.com site too...priceless info therein....

Hi Spida....sorry ya had to find us...excellent first post ....any experience with OXYGEN?....saved my sanity perhaps my life. advantage of being quick, side effect free, relatively inexpensive (compared to triptans), and more portable than many think. using an energy drink with 120 mg caffeine minimum and 1000 mg taurine minimum was especially helpful in making O2 more effective...sometimes on it's own. both O2 and energy drink used at first sign of a hit is critical.....the 2 oz 5-hr energy type very portable, quick to down and nunna the gross amount of sugar they put in these drinks to make palatable... ....verapamil was an extremely helpful med for me for many years until i too got tired of the side effects you describe. only the immediate release kind worked for me. 480 mg/day in divided doses for low cycle, 960+ in high cycle. tapering on and off is important but i never experienced any rebound effect either way. since my cycles were so frequent i just stayed on full time, tho i would have preferred to use only as needed. if you know when a cycle is over (experience and one ultimate blaster at the end told me) you can do the taper. ...pill form triptans were of no use to me and most clusterheads (unless you know your cycle well and can time use). for breakthroughs , zomig nasal spray (5 mg) worked better (minimal side effects, long term action) than Imitrex injections...tho i could get by with 2 mg drawn from vials (the 6 mg statdose typically prescribed is way too big a hammer)... ...many clusterheads have found relief with the vitamin D3 regimen....definitely look into that... best jonathan

....not to mention the f'n horse it rode in on.....

..nope...mebbe a personal google file....or mebbe i just don't know how to set up this pc thing....i will imagine DD singing it, but i aint hearing artie garfunkel ....

....oh i would love to see this but i keep getting a google 404 error (multiple pc).....is it available anywhere else @spiny?

.....yeah!.....the guy oughta be a writer or somethin'...