jon019

.....hmmm...never had nor heard of dizziness as a symptom of CH itself. possibly some of the meds we take? also might try upping your fluid intake, i had an embarrassing trip to the ER for dizziness and after many expensive tests, it turned out i was dehydrated....

....consider a welding hobby in your future if you get the boot....same stuff, different provider.... ....covid has messed with clusterheads O2 possibilities worldwide. besides the universal ignorance of CH already existing, it's a definite supply/regulatory issue in many places. in the US, it's likely not a supply issue. having difficulty believing it is unprofitable (a sale is a sale no matter what the use is for. whether insurance covered or self-pay (50/50 my "career") they made the exact same amount of money off me...shoot, i even picked up/returned tanks myself to save them $). more likely an excuse to avoid the hassles of dealing with folks who are not respiratory patients: we confuse them with our different needs, usage, erratic usage, and weird ailment in general. i don't know what the regs are for a valid script presented in an appropriate manner...but have seen the refusal so many times, in so many places, for so many reasons, that if present it doesn't seem to matter. if there is anyone out there who knows how to call bullshit on this, please share. rant over.... ....re the script for lpm....it really don't matter what the script says, BUY your own regulator (O2 shop leasing is exorbitant) and crank that puppy to exactly what you need. nobody else will know...or care! i wouldn't make a big deal about it with the O2 store if they are providing O2 with your current script....just make sure to keep a script up to date...one less reason to bump you (Lincare required yearly re-cert)... ...abso-friggin-lutely !.....the Clusterkit O2 mask is a Cadillac non-rebreather...which i whole heartedly endorse.... mine is a treasured possession. also have 3 or 4 Amazon purchased regulators of my own that cost less than $150 total. while we recommend 15-25+ lpm, and you might need even more, the specific number is less important than keeping the flow at whatever level keeps the bag full for the next breath... w/o wasted blow by....

.....any illness, infection, inflammation, allergy can trigger CH....especially chronic types. your immune system is whacked out and your Vit D level, among others, is probably low. would do the D3 regimen for sure. many find diphenhydramine (old school anti histamine) helpful for allergies and/or sleep....

....thanks...if you've helped even one clusterhead, you've helped us all... .....Apria one of the big boys, you should be able to find locations pretty near anywhere. i used another, Lincare (Apria probably also has a similar travel program i used successfully). never looked at any reviews...seemed kinda pointless. made sure to get to know store managers personally so i was a face/person, and not just a patient number. important, as for whatever reason they churned managers. mostly made a difference in working with insurance and/or self pay and/or stocking issues (e.g. some don't wanna handle M-60 tanks) and/or updating computer systems that purged accounts (frustrating) for us "inactives" (read that clusterheads OUT of cycle). many of us have found it immensely rewarding to get to know and *hint: reward (tips, cookies, thank yous!) the unsung heroes at these O2 shops...the back room techs and delivery drivers. salt of the earth folks, who care about their patients and WILL go out of their way for you..... best jonathan

"Soy sauce. Soy sauce also contains tyramine (migraine, sometimes CH trigger) and sometimes monosodium glutamate (MSG). MSG, which is used as an additive in many other foods, has been found to cause cramps, diarrhea and headaches. Additionally, soy has large amounts of salt, which can lead to dehydration – and, therefore, to headaches." (it aint the Na, its the dehy). Foods That Can Trigger Headaches - Penn Medicine

...great news...life changer for many like me... ....care to share supplier info for others in area?

...hi TH...welcome aboard... ....couldn't answer how "common" it is... but definitely a known that some folks have permanent/semi-permanent after effects....including droops, sags, redness, puffiness...and/or, as in my case, miosis of hit side eye. no discernible vision issues for me, and several eye docs have noted it and shrugged... ....i would be concerned enough about this showing up so far after a cycle that i would consult a doc. there are other conditions that could cause this and it bears getting out in front of... best, jonathan

....careful with the OTC...will tear up your stomach w/o touching the CH (well, maybe helpful for shadows) ....a journal is a most excellent tool for determining triggers, and most helpful for a headaches specialist in confirming diagnosis. know of one who considers journalling itself as an indicator of CH. note that many neuros are as clueless re CH as most PCP...ya need a specialist. at the bare minimum ask the neuros office if the doc is familiar with treatment of CH... ...an energy drink with at least 120 mg caffeine and 1000 mg taurine is especially helpful for many clusterheads....improved the effectiveness of oxygen greatly for me, sometimes all that was needed if used immediately upon feeling hit coming... ...agree with kat re D3....low risk option with high upside... ....and yeah...welcome! sorry you are in the club nobody wants to be in....

...OXYGEN!!!!

....ooops....sorry. Benadryl just a brand name...is totally different compound outside US/Can.... .....what i refer to is diphenhydramine.....which in Britain (EU?)is available OTC (i think)as a "sleeping aid".....perhaps Nytol or Unisom...or something called Dimedrol (help! UK folks). Old time med that i have found personal success with..... and many others report same. batch describes partly as a blood brain barrier transit issue. could always deal with the drowsiness for the definitively beneficial effect.... ....away from home PF surely indicative....but involves too much to be specifically helpful (diet, setting, lodgings, activities, etc all different). gonna have to drill down further... ....been chasing diet alterations my entire CH "career".....never amounted to much but i was able to narrow down to several triggers: aspartame (one of the artificial sweeteners), msg (ubiquitous under various names in most prepared foods), allergens specific to me (tomato), and, of course, alcohol. drastic changes do not narrow it down, would suggest taking out specific groups at a time. read your labels..tis unfortunately shocking how many psychoactive ingredients are in the prepared foods we eat...and some of the supposedly "natural"...

....wow....that's a tough one. Any thoughts or consideration to allergy mediated (molds,chemical) in his home environment? Has Benadryl or similar been tried? A food log with selective deletions in diet?

....i can still get teary recalling the first time (1985) OXYGEN caused the pain to drain.like.water.... and i just KNEW i had my life back. may you continue to say "it worked"....

....ask away...this is family... ...i did a slight lift of the lower part of mask to forcefully exhale....then back tight quick...

...be sure to tape over any vent holes that would allow ANY outside air in. some masks have exhale vent holes with latex washers that are supposedly vents to allow exhale. i found them to be PITA leaky and just closed those bad boys off.....did a little lift to exhale. it gets to be a routine that you don't even think about after a while.... ...this was funny...i was typing the above as your ? came...

.....you could breathe straight from the tube. i find a little awkward but many folks prefer...make sure you are not also inhaling thru nose at same time... ....tape over any and all vent holes...you GOTTA have pure oxygen.... ....stick the mask in a bag big enough to hold it and allow some "fillage"....squeeze closed with just a corner open to mash yur face into...breathe then exhale outside the bag... ...experiment with various breathing techniques...many find hyperventilation with intense inhale and crunch (sit up like) exhale to be most effective (start even before the O2) .....slowww breathing works for some (me), as does breathe and hold....try various styles to see which works best for YOU. sometimes a combo works best. different cycles may require different styles... ....downing an energy drink or really strong caffeine drink at first sign of a hit made O2 faster and more effective for me... best jonathan

...the "war on drugs" has made for some very odd laws...have seen countless times the illegality of certain items in certain countries...like frigging flower seeds. makes me ponder what the conversation is like in a horticultural club of a Thursday evening in York? are plum trees allowed...you know them pits got cyanide in 'em.... ...Drewbie...check and double check that those seeds have not been "treated"... to make 'em "safe", of course...

.....a full but DUSTY O2 tank being among the most beautiful sights ever.. I liked to keep one around.....ya never know...

....start with this and this...the first is the excellent O2 page from sister site clusterheadaches.com.....the second one of the many CHfather gifts to the family you may have already read.... Clusterheadaches.com NEW Message Board 10. - OXYGEN INFORMATION - ClusterBuster Files - ClusterBusters .....re verapamil...agree with drewbie...don't be changing dosage on your own. my neuro allowed me to titrate up and down, but only in increments after she trusted my judgement, and with appropriate monitoring. tripling your dosage is pretty dramatic... .....for me nothing less than 480 mg/dy worked (double that+ in high cycle) and sustained release instead of immediate release was worthless .....lotsa water and fiber to keep things moving as constipation can become an issue...

.....mit...i've always used the 5 mg zomig ns, but there is a 2.5 mg version......at least as seen online. never used more than one per hit/dy, but they worked nearly every time, and better all ways around than suma. also used very judiciously as i was petrified of rebounds, and the thought of my "last resort abort" causing MORE hits was too much to contemplate... ....interesting your methodology.....i found that a certain tilt back of the head, plug opposite nostril and with just the right amount of inhale (less than a snort) was ideal. not enough and it dripped out, too much and the awful flavor coated my throat.....neither effective.... ....goes to show....we gotta find how our meager tools work for our specific case...it's beyond sad when folks only try one dosage for a med like verap, or poor mask/technique/flow for O2, and give up because "it don't work for me".....when more likely it may just be that that way or that dose doesn't....keep trying..... best jonathan

...hi DayLight...welcome! ....you've been down the road of standard CH treatment so it seems odd that OXYGEN wasn't already in there. was a game changer for me and many others, and is the primary abortive recognized by the medical field...absolutely life altering. i understand it's different for different countries, but any physician can prescribe O2 in the US...i got my first once i educated my primary, 20 yrs before i ever saw a neuro. if possible find a headache specialist....many neuros are as frightfully ignorant of CH and its treatment as most PCPs.... .....no need to repeat the the priceless info you will find in the CHf file above...just to commend its accuracy. i found my best OXYGEN sucess was in downing a high caffeine/taurine energy drink (2 oz 5-hr energy type, quick, easily downed, portable, no sugar), or EXTRA strength caffeine drink, at the first sign of a hit, while slamming the O2 mask on my face immediately following. had an E tank in the car, several in my office, and M's at home. there are various breathing techniques...most seem to find the best success by hyperventilation with intensive inhale and crunch exhale. i found slowww/deep breaths to be just as effective, with the added benefit of calming me the f down. breathe and hold another style. try 'em all, sometimes a combination of styles is the most effective... ....the D3 regimen is safe and easy and effective for many....good for you whether you are a clusterhead or not....you should start on it yesterday.... .....you are in a great place to learn about busting... best jonathan

typo....meant NON-rebreather mask.....the optimask at clusterheadaches.com is a cadillac version....

NOPE! .... i was 26 when it started for me (most start around that age)....retired senior now.....life, job, career. it was OXYGEN (mostly), energy drinks, D3, verapamil for a while, zomig nasal spray as abort of last resort....maybe even age and chemo got me through. Busting remains in the tool belt if need be... ...find the right tools (we'll help) and note that they may change, make a plan (scripts, meds, providers), and keep a good attitude (i always thought, screw it, aint gonna kill me, aint gonna quit).............. best jonsthan

Brad....not sure your experience with OXYGEN...changed my life...do your best to get and use appropriately: min 15-25 lpm, non- rebreather mask/direct/demand valve, proper technique (hyperventilation most popular, also breath and hold, slow breath, combo)...

.....talk it out Brad...we're an understanding audience so ya don't have to explain stuff....but collecting and expressing your thoughts helps to focus the mind and relieve some stress...it's really good medicine....been there. best jonathan

...mine a bell curve with slow ramp up...plateau...slow ramp down...and one last blaster at the end. considered myself fortunate in that i knew the "pattern" so could make plans for battling or getting on with life. whether this is his pattern or not only experience will tell...tho interrupting that with a preventive (busting, D3, verapamil) certainly worth the effort....