jon019

.....this is a wonderful gift for ALL of us.....and the timing is exquisite!!

...wow...if Racer couldn't get this to work w/o hassle, i despair!!. we got enough to deal with w/o well intentioned ignorance depriving us of a remarkably effective abortive, that for many makes possible a job, career, even sane life.... ...one other thought besides state employment agencies...i cannot imagine that the major O2 suppliers (like Lincare, Air Gas, etc) do not have some sort of insight, advice, procedure to assist their customers out in the real world. i know the advent of the incredibly compact concentrators now make this kind of problem nearly moot.....but for most of us with CH that's not an option. i'd call around ...starting at corporate level....

.....there's no telling Shaun...i always carried a script just in case. injectables never got a glance, regulator and mask got a "what's these?" like spiny...but my explanation accepted. my only hassle was from a can of salmon!...which got a supervisor and 4 agents in deep discussion. it was hilarious but i stifled so as not to appear crazier than the cracked head clusterhead i am. they let me go when i offered to eat it in front of them....

.....never had to use on flight....but is very unobtrusive and much less of a show than an inject, if that's what worries you. TSA never even blinked, tho to me the injector looks bullet like. ...zomig became my abort of last resort quite early. imitrex hits like a sledge hammer...the 6 mg stat dose is WAY too high. the side effects almost as scary as a hit...it sure worked...but dang! anyway, the zomig (prescribed at same time as imi by a neuro who knew how to play the insurance game of not approving enough triptans) had minor, if any side effects, worked within 5-8 mins and gave me an 18 hour PF window. despite all this i greatly feared rebounds and sometimes rode out a hit rather than chance over use. it did become a rare need after i dialed in oxygen, energy drink and vit D3 regimen. surprised your cost is less...for me was nearly exact same price as Imitrex per script....tho using vials of imi and insulin needles i could get 15 aborts out of one script vs 2 per stat dose script (unhacked).... and with lesser side effects. ...i should mention that getting busting dialed in will make all jon's dinosaur knowledge obsolete....and no one will be happier than me that clusterheads in the future will be saying ....you did WHAT?!

.....oh yeah....scary stuff since rapid barometric pressure changes were usually a trigger. i carried imi shots or zomig sprays plus energy drinks (and increased verapamil for the period i used it). my "theory" on why i wasn't hit in air is that travel is STRESSFUL and stress has always been a preventive for me (e.g. 20 mins home AFTER work stress a regular trigger). once i arrived, if in cycle, the cycle continued....which is why i usually arranged for O2 at destination thru Lincare travel program. CH takes enough...don't let it get your joy...be prepared, then deal with it where you want to be rather than where you are, and wishing you were there.... ...edit to add....never triggered a cycle....if i was in, it continued, if i was out,it did not start one...

.....more than 20 trips for me w/o in air or immediate post trip hit.....usually while n cycle

... took an e-tank to work in a cart for 25 yrs.... colleagues considered it "jon's dog". private office so none of the issues you are dealing with. also had tank in car... so that sounds like YOUR best option. doubt anybody is gonna write you an approval letter.... everybody is concerned with liability and lawsuits. however, an approach that is not personally confrontational may be through your state Labor and Industries (or similar) who can describe the "reasonable accommodations" an employer must make for worker with "disabilities" (may need docs letter for that). i'm thinking of how an employee with COPD or other lung issue must be accommodated w/o isolation in a "special room". the safety issue could be valid depending on type of business... but i really doubt would be in most cases. heck, our engineers had oxygen, acetylene, and tons of ammonia to deal with... one more tiny tank was just amusing. a retail or non industrial setting, or even segregated industrial void of open flame is incredibly safe (especially in a specifically designed holding cart). part of the argument i would have made but didn't need to was "i perform all my duties and more... if you just allow me an occasional few minutes to deal with this you will be retaining a valuable employee"... or something similar.... .... so glad you at least HAVE the O2, that is a BIG deal for some..... sorry for the hassle in using....

....half dozen times from Reno over 8700' Ebbetts Pass to 7000' cabin in Sierras....NO problems!!! just freakin' fun.....

no

.....i'll chime in too....same fears but dang it, there was stuff to do! more than 20 trips and never hit once in air or just after. carried imi or zomig and energy drink on plane just in case, oxygen at the destination usually through Lincare travel program. you adapt, clusterheads are good at that! get your well prepared first one out of the way....it gets less anxiety inducing every time after that......

...hi Snowflake....good to hear from you but sorry it's because the beast is screwing with you... ...i don't know how common this is with CH, but have seen it mentioned several times, mostly as a side note in research and medical articles/papers....and on occasion in discussion by clusterheads.....you aint any more cracked than the rest of us! it's a thing, but apparently moreso with migraineurs. not reported to be harmful beyond annoyance in anything i've read... ...i made my living with my nose so it was more intriguing than alarming for me...tho i must admit it pissed me off and i used to hunt down the source until i finally figured out "And no one else can smell it. It feels like it is coming from within myself even exhaling through the nose senses it." thankfully transient, so never interfered with the job. multiple variations but burnt plastic, manure, and sewage were the most common and yuckiest. it IS the weirdest damn thing..... ...never could associate with any particular med and not recalling at what point in cycle it was prevalent...or even when ECH, if only during cycle...

.....well for sure...depends...i could get about 2- 3 aborts per e-tank (typical 5-8 min ea) and around 6+ per m-60. gotta hit the O2 immediately, and i used a 2 oz energy drink on the way...which increases effectiveness immensely. note with the e's you are WAY more portable than a concentrator....had in car and office for 25 yrs...m's at home. ....$ cost can be a consideration if you are renting the concentrator.....will need to do some number crunching as appears you are doing.... ...if the concentrator works for you great....not many clusterheads find so. is not 100% O2 and does it take a while to "warm up" to effectiveness? they didn't used to get up to 10 lpm so looks improved, but 15-25 with a tank is easy and effective.... ...once i got the breathing technique down, plus energy drinks and D3 i would rarely need the triptans (zomig ns (10 mg) my last resort abort....

...similar here...besides not helping the CH the main side effect for me was bizarre dreams...

.....so what was the diagnosis? if it's CH, the propranolol is not likely to help at all....old line migraine med that would make me wonder about the prescriber's knowledge of CH....

.....hi Nick, welcome....sorry you need to be here but we can help. ...diagnosis the first step and important for eliminating other issues, and then for insurance purposes. most primary care docs know little to nothing about CH so you may have to educate yours. best to find a headache specialist if possible...note that even most neuros are little versed. ...read everything you can find here, especially starting with the banner link Rod pointed you to..... then ask away best jon

...kinda like?

...nice hat..

...i forget the name too....but here's his official portrait:

...what? this?

...shaun....easy-peasy...start with a joke, you cheeky devil...like: i picked this topic just for you!

....yup, sometimes successful migraine med...... old, with poor results for CH. first med ever for me....1980"s.. ....there are folks with both migraine and CH, it happens. sometimes, we can hope here, getting one under control helped with the other. if not, ya keep building your tool belt .... ...double bonus: BP down and migraines too, if you feel right on the edge discuss with Doc, there are alterations in dosage that may help. (most meds, especially HA meds, are quite dosage dependent, methinks)...

....i'm saying i have never seen it reported...but absolutes re CH do not exist...if there are fixed/visible physical manifestations, it would seem they are rare...i would not take that to mean there is no evidence. mostly talking the dreaded brain scan, while also noting that the pupil of my affected side eye is permanently constricted. eye docs/neuros just shrug... ....since it was well known at work that "jon has CH"....i was approached by folks suffering from "headaches" of various kinds on a fairly regular basis. one friend of a friend had many of the classic symptoms of CH (unilateral, excruciating, autonomic symptoms, same daily timing. etc) and i was asked "is this cluster headache?". sure sounded like it, but i am NOT a physician, refused to say, and strongly urged a visit to a neuro and "a scan to rule out potential underlying causes". a careful diagnostician would consider this routine (and one of the reasons to find a HA specialist). he took that advice and it turned out to be a rapidly growing tumor that was life threatening...found/removed in time. i do not know the details of location....and i do not wish to alarm....so you are on the right path to eliminating other cause with the neuro visit...

...yeah...THIS! ...for reasons other than CH i've had multiple scans of various kinds.....nearly every one shows "something" that draws comments re potential causes. it's radiologist CYA and always scared the spit out of me until i came across a urologist who bemoaned that....and another physician who said "we ALL have "anomalies" ...you are more likely to die with than from....a scan in and of itself is rarely determinative of anything". ...do your research, i did, but use it to ask questions rather than come to scary conclusions... ...fwiw...and this is a personal observation based on years of being in the clusterhead community. there are conditions that mimic CH symptoms...and which makes a diagnostic scan worthwhile, but, i've never seen any lit that describes CH being a causative factor in scan anomalies...

...brackets?....BRACKETS?.....brackets are like badges.....WE DON'T NEED NO STINKING BRACKETS!