Jump to content

jon019

Advanced Members
  • Posts

    1,298
  • Joined

  • Days Won

    157

Everything posted by jon019

  1. .....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......
  2. ...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...
  3. .....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....
  4. ...similar here...besides not helping the CH the main side effect for me was bizarre dreams...
  5. .....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....
  6. .....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
  7. ...i forget the name too....but here's his official portrait:
  8. ...shaun....easy-peasy...start with a joke, you cheeky devil...like: i picked this topic just for you!
  9. ....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)...
  10. ....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...
  11. ...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...
  12. ...brackets?....BRACKETS?.....brackets are like badges.....WE DON'T NEED NO STINKING BRACKETS!
  13. ...that was exactly my first thought...we will never know how MANY...even if it were just one, and it's you...that's pretty damn amazing! .....and a shout out and thank you to NHF for their perceptive recognition. they were formerly known as National Migraine Foundation and have been in the business of saving lives for decades. way back in the 80's they had a newsletter that ALWAYS included an article or forum response about CH. like water in the desert, seemingly the only source of CH widely available to the public. saved my sanity perhaps my life when they provided the blessed OXYGEN information ...and a discussion of the meds then available. i am forever grateful for them, Bob, DJ Johnson....and y'all... ...and oh....COOL tie Bob!!!
  14. ....got the occasional leaker myself over the years but always kept a tank in car....winter/summer. made for some interesting eyeballs from cops when using on the road (not recommended but sometimes ya just gotta do what ya just gotta do). keep the tank in car, strap it down, and check the pressure on a routine basis....i did every Monday.....
  15. ...i am fluent in...............................smart-ass
  16. ...ok...up The Reds.....but i couldn't find you in the crowd...and bollocks to those Everton tossers... Liverpool chants: Lyrics & videos to the most popular Anfield songs | Goal.com US
  17. .....yup....it took me a lotta yrs to figure out that: "relax and concentrate" was the only way i was gonna get through this CH sane. ya start by learning everything you possibly can (some of that from you ) which leads to the right attitude....... so that you can formulate a proper plan......with what you KNOW are the right tools. ...never had kids, but had a buncha lady techs work for me, every one of them repeated back to me at some point: "sign your damn work!". made my fricken day. different road to accountability, not as good as yours, but no made up stuff or useless crud on my desk. amazing how ownership of something engenders responsibility.....
  18. ...threadjack?,ok..... up Arsenal.....go The Gunners!!
  19. This encapsulation ^^^^ should be enshrined as a motto, or maybe as part of a cluster busting oath. Let us raise our right hands. ...spiny this is all time classic....i almost fell out of my chair!!!....been my goal for 40 years but didn't know how to say it. relax and CH at the same time? no way?...YES, way! ...like Yogi said..."in order to hit you have to relax and concentrate" or Reagan..."trust but verify".....
  20. ...well you figured a work around didnja BP!? ....have never seen that particular notice....or had a double post....you got yurself a special case...you running Windows or are you grape-kool aid "Apple"?
×
×
  • Create New...