jon019

.....aint no woosies in clusterville, it's an impossibility...i wasn't calling you one....just relaying what motivated me. guess ya had to be there, but coming from a tiny Russian blonde physician, with a twinkle in her eye, i was actually amused enough to be distracted. probably her design... ...my main point was to share, since clusterheads are the bravest people i know .... somehow/someway we find the strength to do what needs to be done...

....and very much related....is why, besides the vulnerable feeling, i always hated being witnessed while getting hit....and why i consider our beloved supporters as having it worse than clusterheads.... .....very little to offer re needles ( i still have to keep my eyes closed). but at one point had to give myself B-12 injections. HUGE needles that have to go into muscle. the very first time took me 2 hrs sitting on the edge of the bed....for many months after it was up to one hr. eventually got it down to a couple of mins by using the admonition from a young lady doc, who told me: "don't be such a woosie!"......and the realization that sometimes there.just.aint.no.alternative.....

....a consult can't hurt....i'd ask their experience (success?) with CH patients....then weigh that alongside your willingness to bear the out of pocket costs. various types of nerve blocks do indeed work for some, personal belief that the skill of the practitioner at least as important as procedure itself... ..have had 2 ONB's, neither of which had any effect, but don't regret the attempt. keep in mind that the potential side effects of botox are more significant... ...never tried a SPG block...

...$15 band aid for a bullet wound...

Hi TT....welcome aboard... .... OXYGEN combined with energy drinks/high caffeine drink and the D3 regimen and you might could eliminate the triptans altogether. kinda dependent on how long your cycles last and their frequency. even with your short/infrequent cycles it would be good info in the bank for future reference....CH mutates regularly... ....for that low a dose, and an oral to boot, to be that effective as what sounds like a prevent, is most fortunate. all exceedingly rare and good on you for dialing it in like that... ....rebounds are a pretty individual dependent. generally, the higher the dose the more likely rebounds (not a given). usually reported as more frequent hits, and/or at odd times, and/or with different intensity than your typical pattern. only real way to find out is comparing a log of hits with and without triptans....tho with enough experience gut feel probably sufficient. agree with CHf as unlikely for a dose this low... best jonathan

.....different strokes for different folks.....aint no absolutes in clusterville.... .....for about 7 yrs verapamil was a relatively successful med for me....manageable side effects and knocked out about 70% of hits and seemed to make hits lesser in intensity. 5-6 cycles per yr so a prevent was critical. nothing less than 480 mg/dy worked (had to be IR)....would go to 1000+ in high cycle. heart function monitoring essential, and extra fiber/water to keep things moving along. a serious med for sure....for a serious condition. eventually got tired of the constant fatigue and being med reliant and dialed in OXYGEN/energy drinks, D3, w/Zomig for breakthroughs (rarely) for my ultimate management....w/chemo, age, and other life changes being additional factors i wonder about... .....i'd do it again if i didn't know now what i didn't know then, or what's a Clusterbusters for? but, the alternative options presented here are not always possible, practical, or suitable for all...as far as i'm concerned, verapamil is an effective prevent for a good number of folk, and remains a valid tool in the ammo belt... best jonathan

.......in case you were wondering...Bejeeber is the good looking one....

....a coupla clusterheads keepin' an eye on things....

....monitoring these forums over the decades leads me to believe that the ratio of male/female in the "beast war" is prit' near 50:50. older lit and uninformed medicos still cling to the fallacy that it's a "guy thing"....which only increase the burden on female clusterheads. perhaps the guys are just more vocal AND/or one must realize the lit is (or was) written by men. the old saying that if men had to give birth there would be a whole lot more attn given to birth control is absolutely true.....IOW, males tend to look at things as it effects men. newer lit is much less, if at all, definitive re gender affliction levels. see men and migraine for a similar mis-belief the other direction..... ....my further belief, also developed by watching these forums and personal experience, is that significant fluctuations in hormonal levels, regardless of gender...are an effector of CH. see pregnancy, see high stress/de-stress situations, see D3 regimen (D is a hormone folks). i've always wondered if barometric levels follow a similar pattern. high or low never bothered me.....rapid fluctuations (e.g. weather fronts) dramatically significant. it also may be that levels outside "normal" is equally significant for some clusterheads.... ...pls pardon the small thread hi-jack....i think it wise to monitor how hormones affect any aspect of your health...considering your levels and how much, if any, to adjust ....an excellent idea!.... best jonathan

.....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...