jon019

...a few thoughts.... best, jon

...so glad Spiny is back peeking in....Hotel CB:" you can check out... but you can never leave"

.....wah-hoo...ride 'em cowboy! HBDDD!

....hi Daniel...glad you found us! sorry you have to be here...you communicate just fine... ...i have always had an aversion to sharp sounds, but it is quite transitory and non-CH related. however, during a hit i seek silence. not exactly "misofonia"... i've always considered it an inability to handle any more aural and sometimes visual input when fighting the beast.... ...re chronic. i was ECH for 23 yrs and feared...every day...going chronic. then it happened, turned out to be no better, or worse, than ECH...just a different version of CH that was still responsive to the same tools i had learned. my chronic was not daily HA but a non predictable hit sequence, no predictable cycle, BETTER abort efficacy with O2 (with a well earned breathing technique that saved my soul), D3, energy drink to improve O2 efficacy and sometimes effective on its own, less intensity of hits, different and/or reduced triggers. a whole 'nother version of a f'ckn nightmare, BUT not the horror i had feared. IF it happens, you already know how to treat...don't let the fear rule your life.... best jon

...me too

...yup, nothing is a given in this CH battle....energy drinks work for many but no guarantee...at least you tried! one note on sugar free versions....many contain aspartame as sweetener...its an amino acid like msg, which are vasoactive and if causing dilation exactly the opposite of what we need. trial and error got me to sucralose as the artificial sweetener which caused me no problems...

...i can't speak to the connection of these phantom odors to hits or cycle except to say that for years i experienced similar. mine were burnt toast, manure, electrical fire, and a few others. my cycles were very close apart and it never seemed connected to cycle position or hit prodrome. as i recall these were random and "interesting". is also a symptom of other scary neurological maladies like MS...which i have been tested for multiple times (negative). that its a "tell" is actually a good thing for you... ...rapid change in barometric pressure...like hi to lo pressure weather wave was a guaranteed trigger for me and many others. re "noon", guessing your particular circadian rhythm... ...that there is WAY typical of CH...it would surprise if only occurring during these... .....boy howdy, YES! and mega congrats on off loading the monkey...from contacts and research it seems clusterheads are more prone to addictive behavior than "regular" citizens... best jon

....one bit to consider, if even logistically possible for you, is to p/u and return tanks yourself. the O2 shop i used thought it amusing but appreciated. one phone call and i would have all my tanks in a rack waiting for me on arrival...quick switch out and on my way. this would also allow me to pop my head in the back room and chat/thank the techs. they usually don't see their clients, and i have always believed a face to the name is a game changer...once was handed an m60 regulator, no charge, with "use as long as you need" ...i still have it........

...that would be a double YUP!

...at one point (cannot enumerate) there was a reluctance(?) official or non by researchers to placebo arm studies with active HA patients. understandable, but obviously limiting. any thoughts? was this just an understanding or are there study protocols (besides life or death) concerning pain or perhaps intractable pain that have been superseded/modified?

....not aware if high or low estrogen is a CH trigger....my PERSONAL belief is that changes to routine or body chemistry CAN be. mayhaps a discussion with physician to ramp up the estrogen a bit more slowly. i also note that an amazingly high number of medication side effect warnings suggest the exact reason for taking the med (headache for example) as a potential side effect. a bit frightening until you consider you affecting the system or chemistry that is causing you problem. sorry if thats a little "what?...hard for me to explain things these days... best jon

...wow, that is an awesome summary @Craigo...much appreciated! ...personal experience with multiple autoimmune ailments, forum discussions, and an awakening in medicine growing over the years has advised my bias towards some connection with gut biome. one particular experience (chemo), which i'm speculating dramatically altered mine and "possibly" contributed to a significant reduction in my active CH. ...i must say, as a "grampa" clusterhead, another bias is the hypothalamus as mediator of CH....lightheartedly as much as a cluster patient can be, some called "a wonky hypothalamus". partially as an "easy" demon to point a finger at since we really had nothing better...but supported by the symptoms of CH being nearly all systems and particulars controlled by the hypothalamus. not to say the inflammation you discuss would not have an effect on the hypo...but it would seem outsized to this layman. ...i look forward to more of this wonderful reporting...

...AWE-SOME Racer!...and you put your $ where your mouth is THANK YOU... ...decades ago my dream was one day to be able to afford a demand valve...they were ridiculously high...this, just wow! ...Simon's then the optimask did serve well with the right regulator ...so i made do...

....well, it's a given Shaun is quite batty, but as for myself...i am perfectly normal since the transplant...

...ha!...plenty funny padre! you so far ahead of me i can't see your dust...i just throw some once in a while...