-
Posts
1,309 -
Joined
-
Days Won
163
Everything posted by jon019
-
...sorry for the ads, this is a .com so be aware...a bit of confirmation for anti inflammatory we all know. i follow autoimmune info as i have several and believe there is a connection between CH and the immune system....the extent i know not Autoimmune diseases: Ginger supplements may help manage inflammation (medicalnewstoday.com)
-
Suggestions? Can't stop the pain the week pre surgery
jon019 replied to gegibsonjr's topic in General Board
-
New YouTube Channel all about Headaches/Migraines and Clusters
jon019 replied to MoxieGirl's topic in General Board
.....hiya Mox! -
Time Sensitive Action for Children with Headache Disorders
jon019 replied to MichelleC's topic in General Board
Hello. ...my mother was a Special Ed teacher, it is a subject dear to my heart...not the least of it being the times i saw her come home in tears...sometimes joy but usually frustration. no need to bore with details, but it is an underfunded, understaffed, underappreciated, under most everything but the front line folks who give their heart and life and mostly LOVE to the effort... ....i say this not in disagreement with this initiative at all, but to CAUTION to be VERY careful what is proposed/enacted. these kids absolutely need a type of care and instruction beyond what most "regular" classrooms can provide. i wonder if the experience of Covid has advised school districts on the needs of kids outside the "norm". i doubt it...but i don't know. what i do know is that regulating that these kids be classified as "special needs" w/o careful wording, will, in many cases, result in some districts dumping them into classes with developmentally disabled kids far below age normal. kids requiring one on one, sometimes very basic instruction, and frequently repeatedly. ...most anyone in the headache community realizes that it is not a cognitive issue we are dealing with, and placing these kids in the environment i describe will leave them with insufficient attention and instruction based on what is practical and possible. CAREFUL please...... best jon -
THIS! ^^^^^^^^^^
-
...OXYGEN!!?....dump the amitriptyline, worthless
-
…hiya….thanks for the shout… …dealing with multiple health issues that have put the fire out and i'm tired…as an opinionated know it all it has always been a struggle not to be obnoxious…not always successful, but now find that the effort is beyond my capabilities, and I really don’t want to say stupid stuff to folks that need sharpness of mind and thoughtful contributions. my heart is with you all and always will be… best jon
-
....i'd bang some Benadryl...even with the FM. sounds like a "histamine bomb" from an allergic reaction.....more likely leading to a CH vs the other way round. it is almost spring, pollen could be around, check for house mold, new carpet?, new whatever?.... and brush any pets outside before they come in....allergens on fur maybe....
-
...only a few cycles with the 1 hr wake ups for me..(O2 always worked better than day time hits!). never could figure what was different to cause this oddity ("normally" 3 daily hits) except sleep being a frequent trigger for most clusterheads (no blissful in cycle naps for 30 yrs for me)....and triggers can be transient. ...have you tried staying on O2 post abort for as long as it took to abort.. ...since CH is likely a wonky hypothalamus...which also controls sleep...a connection to CH is not surprising, and more than a few have found improvement of CH with sleep apnea treatment. worth a doc consult....it never occurred to me at the time...
-
....as the tank got below half full i used to stare at the flow gauge as a form of distraction.... so i could turn up the decreasing flow as the tank approached empty. there indeed was a point where the knob was at 10 (11 if you are a Spinal Tap fan) and flow just steadily decreased anyway...bears monitoring. sometimes when aborting a night time wake up, with no lights, the sound of the hiss was all that was needed. THAT'S too much experience....sigh
-
....an e tank would last me approx 2-3 hits and a m-60 approx 5-6. if it didn't work after 15 ins i'd quit to save O2 and ride it out (or spend a precious Zomig NS)...always worked better with an energy drink (never more than 2/dy)...
-
....the only thing i can add here is how CRITICAL it is to start oxygen at the FIRST sign of a hit. for me there was a very small window.... and if i missed it NO amount of O2 was gonna work. if you've ever had a cat that would suddenly and seemingly for no reason go tearing out of a room...that was me. it amused my colleagues.... ...there are various breathing techniques and different ones work for different folks. most successful reported to be hyperventilation...can/should be started on way to tank. slow,deep breathing in/out worked best for me, added benefit of being calming, breathe and hold another. try them all, try a combo...all the motivation i needed to find the "right" one was provided by CH itself........
-
...home again home again jiggedy jig!!!! ....i'm jelly of the "handles"....could use those myself.....
-
-
...no spit....there's a bug!!...i just lost another entire post here. ....and smartphone autocorrect comes from the devil's fingertips in my experience
-
...hmmm...well...if we are talking intractable CH then ya might hafta go there...but there are newer BETTER options like busting, D3....and as Bejeeber notes, ketamine....which is incredibly promising! all assuming that proper oxygen use with energy drinks is not an effective breakthrough of these measures abortive...please do read ....you would be wise to proceed cautiously with lithium. in my CH "career" of over 20 meds tried...it is the only one offered i refused outright. some few have indeed found effective, and perhaps infusion beats the old pill form. but, it is a med with scary potential and dialing in the right dose difficult and critical (too little and no effect, just a bit too much, and YIKES!). this dance requires extended/extensive blood work and monitoring which is intrusive on "normal" life ...
-
...my fingers are too >>>>>> to even try that ...but similar happens to me online.....tis a bitch when your msg disappears with one key press....one word from completion!!!!
-
....no regrets either way Jeebs....as usual we gotta find out for ourselves...share among ourselves....then bring the world into our reality. this one so promising it deserves repeated attention. the potentials for CH and mental health issues demand it....
-
hi Sam...welcome ...yes on RC... ....see the blue banner at top to start: "new users-please read here first" lotsa good stuff...feel free to ask any questions best jon
-
...same here....but that was because every cycle/triggers/pattern was same for 23 yrs when ECH. for me pointless, but still believe can be a valuable tool to detect subtleties of importance... ....seems we have discussed this a few times and i thought there was a newer version of journaling, but the search function fails me....perhaps someone recalls that thread(s)? ....one of my favorite diagnostic stories...and i believe from National Migraine (now Headache) Foundation newsletter... was the physician who noted, and used in diagnosis: "boy, you folks (clusterheads) sure do seem to all journal, i see it consistently". it was kinda implied as an OCD component of CH that i really don't know is valid or not ¯\_(ツ)_/¯. but i agree, we do seem to have the need.... ....the other favorite was the physician who asked, and considered a definitive diagnostic indicator of CH, a positive response to the question: " have you thought/considered/contemplated suicide?" is called suicide HA for a reason, and i firmly believe an absolutely essential question for any diagnostician....sorry for the thread divert...am easily distracted... "
-
.....yup, could be...the very first methylprednisolone IV and taper stopped a cycle mid cycle for me....it was miraculous and i thought i had found THE answer. sigh....never worked again (2 more trys) after which i avoided as there are potential serious consequences.....and other measures got dialed in. ...FOR SURE!....and provided blood levels in range is exceptionally safe and widely effective....