jon019

...hi Jost...it ain't glib when we suggest/push/cajole/beg a fellow cluster head to try O2..tis the #1 primary MEDICALLY acknowledged abortive for a cluster hit. Has SAVED LIVES and sanity (like mine)and it's a crime when one of us runs into a med professional who can't or won't prescribe it...or ins that won't cover. A few yrs ago on another forum it would be referred to in almost every thread....it's that important. Some folks don't know about it...I always presume NOT until I know for sure. And I will continue to risk pissing someone off because I can STILL feel the tears from 35 yrs ago when I aborted a hit "like water down a drain"...and I KNEW I just got my life back.....YMMV... but it's damn important to try. I learned about it pre any forum...then the job was to find a doc who would work with me (critical)...and fights with 7 insurance companies. The alternative of untreated CH was sufficient motivation for the battle... Others can detail welding setups way better than I..but yur already 90% there ...and you are gonna be able just shake your head at the failings of some in the med/med insurance community... PFDAN Jonathan

Welcome..glad ya found us... OXYGEN!!!???.....

Hi CI...welcome...you provide a very interesting read! ...a couple of unsolicited thoughts...cuz...why not? ...you're scaring me with all that Suma...maybe I missed it but are you splitting doses or using vials so you can titrate just the right amount? I could get by with 2 mg per hit...6 mg was way too big a hammer!. There are no absolutes in clusterville... but general thought is that Suma can cause rebounds or negatively affect cycle...and the side effects can be significant. Sounds like you know all this but.... ...a little puzzled by the reluctance to try the D3 regimen...I won't try to sell it, perhaps Batch will stop by with THE word...but with your current regimen of what sounds like to me a bucketful has got you at a stasis that is only somewhat acceptable... so you are looking for more. If you were to try the D3 I don't think it would be unknown if it is efficacious or not...either you improve or not. If ya do...you can start eliminating the other meds and all their side effects for a much safer supplement centric regimen... best jonathan

...yes...thanks DD..a little chagrinned I had no idea this existed...very interested in exploring... ...for a non scientific but high number fascinating survey (12,000 responses) check out this on our sister site (clusterheadaches.com): http://www.clusterheadaches.com/survey/index.html ...there's also a cluster quiz which is helpful for folks new to clusterville... http://www.clusterheadaches.com/quiz.html

....hmmmm....that darn anecdotal evidence.....results in insufferable forums like CLUSTERBUSTERS.org....beware...

Hi... welcome...nice summary! Best Jonathan

...dunno about the lead time but Lilly Jung Henson at Swedish (usta be at Issaquah branch...not sure now)...MS specialist but she knows CH...delightful person too...

same as Pebbles....24/7...strapped my e in a cart with a seat belt...regulator and mask ready...could walk that puppy like a dog right into the office....buy online the O2 shop will charge you WAY too much......

.....bell curve....slow ramp up/down # and intensity....one MASSIVE hit at end which signaled end of cycle.....

....have never noticed any connection over the years but did develop a turkey allergy following chemo...allergies create inflammation which is the enemy of stasis...upping the D3 sounds like a good plan...along with some Benadryl...Batch speaks eloquently about this...seems yur already on the regimen so check his advice on dosage..... best jonathan

...oh yeah...forgot about that....was walking 5-12+ miles/dy at work..

OXYGEN !!!! ....at one time verapamil at 480 -1040 mg/dy .......stayed ahead of the concrete by LOTS of water (some swear by this alone for CH) and fiber (especially fruit)....

......and when it comes to CH .....I am INCLINED to absolutely believe exactly this...well said!

DUCKS! BoF...best/funnest pets I ever had...they'd follow me around and I'd point out slugs (like they really needed the help...not!)...line 'em up with their beaks and slurp 'em down like spaghetti.... after a while I'd have to bring water to wash off the slime so they could open their mouths...the whole enterprise was hilarious....

..yeah that does sound familiar...but if intractable I would want to at least try before they drill a hole in my head (been there) ...any chronics out there who have?

...so how are folks with chronic CH supposed to even try it.. as there is no apparent end of cycle?...and I certainly wouldn't expect any insurance to approve indefinite usage....nor would that be medically wise anyway....

.....dunno if I'd call it a "lie" spiny...suspect it's more "anecdotal" from the medical profession who think they've noticed fewer 'old" clusterheads (or indeed WERE lying to us to shut us up cuz they couldn't help!). ... ....just theorizing, IF true, it could be for a number of reasons.....it has always been a fervent hope of mine...kinda a "bonus" of aging to look forward to...and I've wondered if it would be related to "hardening of the arteries" or other infirmities/changes of aging that alter the hypothalamus ....and/or the ways our bodies react to potentiators.... ....only a study that no one is going to do (batch's survey may be the closest, but I've never seen him discuss age distribution results) would answer this...in my case, went from crushing episodic for decades to chronic that was much lesser in intensity and easier to manage that was possibly due to aging or, my opinion, verapamil related (another anecdotal based thot ( episodic>chronic) that we've discussed frequently on another forum)....to an even lesser chronic that I attribute to chemo (or, again, maybe aging).... ..I do agree with Moxie...and I think it will be related to D3 and busting in some way(s)......

...hi d-rock...glad ya found what works...this is such an odd affliction that while many have found your same success with vigorous exercise (at least aborting a hit) for some the same is a trigger...go figure! have you tried oxygen?... it's way more convenient... best jonathan

...I share CHf's consternation...been hearing same for decades...which is why you need a HEADACHE SPECIALIST....most neuros are clueless (his O2 comment proving same)...in my experience, a specialist knows exactly what a cluster headache patient is going thru and will FIGHT for you with insurance droids...this includes O2 and triptans. I had to fight 7 health ins companies for one or both... and won every time...it actually helped the battle with the beast in giving me a dragon to slay.... ....and BTW, an Indo trial is not a bad idea IF the diagnosis for CH is only a maybe.....give it a good shot tho....

Welcome ff, ...it's a short needle...I'm skinny and went for the thigh....mostly used insulin hypos and drew 2 mg from vials...switched to Zomig NS 5 mg as it was as effective w/o the ooky side effects and no jab...suggest you ask your pharmacist (they have Doctorates now btw)... best jonathan

....geeez....cut the drama and insults...put.up.or.shut.up...we will listen to anything...

redneck bag.....see Batch's post in this thread... https://clusterbusters.org/forums/topic/6632-demand-valve-o2/?tab=comments#comment-65652

...hmmm...well OK....but I just watched Auburn beat Alabama 48-45....and I could watch 'bama lose every day of the week.....bless me father for I have sinned?

fwiw...if you can get e and/or m-60 tanks (or something like them) the whole world opens up...I worked/travelled for over 30 yrs with CH cuz I had to...tank in the car, tank in the office, tanks at home and a couple of clustermasks from ch.com. once my employer and colleagues understood what they were for it was accepted that Jon would disappear for a while occasionally....no big deal. sorry for any presumptions...and all situations are different...but taking the mystery out of my condition and needs relieved THEIR anxiety....and made my career possible... ... D3 or busting may make this all moot....