jon019

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....

hi csa...welcome, ...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro).... ...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapacitated by a hit... ....my idea of beauty is an O2 tank with layers of dust...the peace of mind of availability is priceless (what would you pay to stop something a million times worse than child birth?).... and you already know it works... ....somewhat typical to get worse over time from initial onset...but that is NOT a given... .....CH is only going to increase your anxiety/depression...but also could be unrelated...get that treated regardless of headache diagnosis.. best jonathan

...and once you learn the side effects for a med, if any, you can adjust accordingly. I know one clusterhead who was able to find some success with Topamax (topiramate)...aka dopeymax ....by taking at night before bed...thus avoiding the majority of debilitating side effects most report... ...let us know how Emgality goes for you!....

......actually an excellent question...it CAN be VERY specific and important to the med in use ....best bet to ask your Pharmacist (or any pharm, seems they're in every grocery store). they get doctorates (about 8 yrs of school) these days.... and (unless it's Costco and they can't be bothered) are more capable than most docs providing just how much detail you want/need..... ...if you get your meds mail order, they have pharms on staff specifically for patient consult...besides a good practice...it's the law!

...typed before I saw Pebbles post...don't have the energy to revise...1000% right , as usual...the first thing out of her mouth should have been OXYGEN! (yes?)....headache docs divided on verapamil...many have been helped tremendously but high doses usually required, which can lead to unpleasant and/or dangerous side effects (me, none).... .....don't it feel good to have headache specialist doc?....for CH most regular docs (and most neuros) are only good for the scripts we need (VERY important as it's hard to get into specialists)...that is, if they are willing to LISTEN to what we need... ...methylprednisolone explained to me as prednisone on steroids...did an IV plus a taper twice...miraculously (it seemed) the first time it actually broke a cycle MID cycle...the next time nada....moved on to safer alternatives afterwards... ...Meloxicam a strong NSAID...those help some with shadows, but rarely help for 'regular" hits....perhaps the combo more effective (I'm doubtful)...the makers of Imitrex combined it with naproxen (another NSAID) to make a "new" product.... and delay generic competition for Trex..."lovely" folks, those.....