jon019

...i was allergic to toothpaste for a long period,... and triggered by "something" in a multivitamin (never figured out which ingredient).. anything is possible. clusterheads seem to have a good read on their bodies...trust your observations and use your gut instinct....

....we did....saw her like her Dad still does....

....first the tube, then..... ....let's blow this popsicle stand Pop....

...yur stirring a semantics pot Jeebs....3 kinds of lies, ea progressively worse: lies, damn lies, and statistics. for me i was 1 out of 3 with a methylprednisolone iv/taper...so 33%. but the first time, it stopped a cycle MID FREAKING cycle. it was a miracle!!!!....and 100%. i'm guessing.... with COMPLETE confidence.... that the actual number is somewhere between 0 and 100%.....

...spiny is entirely right that O2 suppliers must follow the script, BUT, it's important to note that YOU don't have to. get the script (hardest part) then crank that regulator (you bought your own on amazon to save on leasing, right?) to whatever works....key being reservoir bag full enough for full breath each time. for many that's 15-25+ lpm...some even higher. no one knows or cares what that is, find the flow that works for you. some find that starting high then lowering as the hit subsides an effective strategy and saves O2..... ...one of the saddest phrases in clusterville is "oxygen doesn't work for me"...when, in fact, it doesn't work at that pathetic flow....turn that baby up!! and experiment with various breathing techniques too. hyperventilation most frequently reported successful, but also slow breathe and breathe and hold...or a combo of all, can be the bliss.....

...all our eyes over your shoulder mate....

....before switching an O2 provider that is at least somewhat cool with a CH patient, ask for more tanks. i kept 6 e's on hand at all times for a decade+ before my provider (Lincare) finally got m-60's.....yee-haw! also a good opportunity to educate them on the needs of a clusterhead....paying it forward for the next 'head that wanders in. if at all possible, pick up and deliver your own tanks.....they loved that even WAY before the current labor/supply shortage. a personal relationship with shop mgr and backroom tech goes a long way too....then you are a person instead of a file number. delivery drivers can be your best friend, treat 'em like the gold they are....sometimes they can find you a tank or 2 when "none exist"....or even a few extra.....

...thank you @Tim Hogge ...ALWAYS worth mentioning (and rarely is), as dehydration is endemic and a facilitator of all kinds of bad issues. at one time in clusterville there was even enthusiasm for a "water therapy" treatment of CH. Worked for some! but not well enough for enough clusterheads to gain much traction. worth a try and hydration is important for everything anyway......

.....don't give up on the O2....when episodic there would be occasional cycles where i would get the wakeups like that. i suspect it was due to an inflammation/allergy that was "firing" things up....and that my vitamin D level was below optimal. get your levels checked and try the D3 regimen. Diphenhydramine (Benadryl) may be helpful, with added benefit of drowsiness at an appropriate time...

...it's a long, windy road.....but there's sun at the end Shaun.....

...whose form Spiny? did you have to contact Medicare or was that Lincare?

...and my favorite m-60's too!!.....yee-haw!!! this makes my day for YOU!!. i used Lincare starting in '85....were always completely reliable once i got to know shop manager. ...these forms you speak of....Lincare, Medicare, or Medicare Advantage generated. never had to do any "special" forms for any care so that's a puzzler...

....that is flipping awesome!!!

...sorry, that musta been a one off article, pre hit o2 breathing is not recognized in clusterville as a successful practice ('81 on my case). O2 is an abortive (along with injectable triptans, THE most effective of the traditional aborts. DMT and, for some, ketamine the newer and less studied but reportedly effective). O2 inhalation effects are transitory in nature..... the effects do not accumulate. it is not a preventive. no harm in trying, if for no other reason than to prove to yourself what effect it does (or sadly, doesn't have). i've always figured there is only one way to find out for yourself for any method discussed here...try it...in this case ya got nothing to lose but a little gas..... ...if the melatonin does not work (and you should experiment with dosage) diphenhydramine (Benadryl in USA) is worth a try...was my go to for allergy flare ups (which i suppose might have been cause for 1 hr wake ups, (discussed below)...but i didn't realize at the time)...Quercitin is another option others are more familiar with so i defer... ...for these nightly wake ups, which were only an occasional odd cycle for me when ECH....i sorta quote myself from previous, mostly applies "... staying on for a few mins after the hit aborted is frequently helpful. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 3- 5+)...but back again in an hour. What I did was: learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breathe-breathe-breathe-breathe (almost like a mantra). Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life."

...your other family is pulling for you and yours Shaun!

.... a cool example of i betcha a game everyone of us have played in some form or fashion. am convinced that we resort to such because it also provides a distraction....something ELSE to do/think about....whether it saves anything or not. ...same here on the regulator/turn off the valve....fiddling with a regulator whilst being hit is beyond my patience/capabilities....

...this be the Cadillac version NRB.....beloved by many a clusterhead, found at a sister CH site run by a fellow clusterhead, and the proverbial steal at $25. i've had 2 that lasted many years.....plug those damn holes in the meantime. ...the replies above are absolutely priceless and practical.... and make me smile. you won't get better anywhere else, and sadly not even a doctor's office unless you can find the exceedingly rare headache specialist.... ClusterO2 Kit - Clusterheadaches.com - Online Store

..good catch @CHfather...i blew right by that....

...citizen science....whoot!! ....and every one of these busts ya learn a little more....thanks for the share

Dang it Shaun...so sorry for this...know we are with you and yours!

.....ummmm....yeah.... ...ummm....yeah ^^^^^^^^ .....out of hundreds of cycles when ECH, there were a handful of the "one hour wakies" type for me (handled differently, see prev "wake up"posts). no changes in nothing before or after. while there are always tweaks you can make to O2 usage, i know i never varied far enough to prevent oxygen from being its typical sanity/life saver. something else happened (physiological?) ....and just like ALL our other tools "sometimes", for some, it just stops working/works differently....hopefully only for a while. ....O2 never has been, don't see how it would ever be, anything but a most effective abortive (don't forget the caffeine/taurine). it is transitory, not a prevent, not a trigger..... ....as an ultimate believer in O2 i must add: before any clusterhead gives up on O2, they would be WELL served to insure: a non rebreather mask, lpm 12-15+, and a practiced breathing technique(slow breathe, breathe/hold, hyperventilation, combo).....

...first drug ever prescribed for me for me way back in '85 (seem to recall 40 mg?)....after doc scurried back to office to look up migraine. boy was i motivated for it to work, and took for at least a year. did squat all for CH (positive OR negative), had minimal effect on BP, but produced some truly bizarre dreams.....not frightening just strange. so, in my case, psychoactive properties but anxiety was not on my radar at the time so did not notice either way. haven't seen this as a current use...10 mg sounds too low to effect BP, which some ascribe lowering of to be "calming", seems pretty safe to try and see....

...no truer words! 20 years ago, in the depths of intense CH, i had access to pure morphine. it didn't even TOUCH the pain of CH, but twice, and twice only, i took enough to knock me out because i was f'ing desperate. it was a wake up call to get this shit under control. morphine is definitely NOT the kind of drug to be self medicating with, especially under duress and w/o full mental faculties. thereafter got a number of years of good success with verapamil and oxygen, until ultimately dialing in the O2, energy drinks, D3 regimen....and a zomig ns in pocket as pacifier....

...as bad as it sounds, i always shout a YEAH! when the rare clusterhead reports being hit IN the doc office. this is an illness whose effects must truly be witnessed to be believed....otherwise they think you are exaggerating/drug seeking/crazy...... as we are left to describe the indescribable to the unbelieving...

... CH used to be known as "histamine headache" and some of the standard treatments were heavy duty antihistamines... they don't work as an effective prevent so the usage has fallen by the wayside of medical thought re treatment of CH. not to say they are not effective for allergies and illnesses that cause inflammation and chemical cascades..... which may trigger/enable/worsen CH....either directly or perhaps by burning down your D3 levels. ....Benadryl has always been a go to for me.....it just works better than the new line versions...and i could always work around the sleepiness it can cause (and which some folks treasure)... ....Batch has a new version of antihistamines to add to the D3 regimen if need be....hope someone will give you a link as it's too late for poking around for me...................................