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jon019

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Everything posted by jon019

  1. ...ima big guy and all those ear-hook styles hurt...any reason ya can't do one of these vincent?
  2. jon019

    vyepti

    ...no personal knowledge of SB. tried lidocaine up the nose, which was an hilarious failure, but that was mostly trying to hit certain spot while writhing with a hit. a quick google search indicates minimal side effects....find someone with experience and give 'er a try!
  3. To quote myself, cuz i'm tired and it's easier than rewriting: "My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were generally lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's manageable." now....re meds: ...this is an alternative medicine site, so i always think long and hard before sharing my experiences with western pharma....but it's what i know...and frankly, i'm an opinionated sumburger.... ...no personal experience with the alternative methods and substances discussed here...only that i whole heartedly endorse, follow with passion and glee the success stories, applaud the ongoing research, and am delighted by the increasing societal acceptance. were i just starting out on this journey today, i would bag all the 20+ meds tried (except for OXYGEN!!!) .... avoid all the woeful lack of western medical knowledge re headache ...and CH especially... and go the Clusterbusters route! it's too late for me, but i would encourage you to explore.... ...interesting...one of the most frequently reported and distressing side effects of verapamil in males is impotence. same area of "action" ...so consider yourself fortunate....
  4. Sorry..I'm smiling and laughing, ...oh we get that, no problem......sometimes ya just have to. there are so few times in life when you can laugh and cry at the same time. still vivid memories of catching my bawling self in the mirror a couple times during a real bad cruncher, and bursting out laughing: hair askew, eye closed, face crooked, snot/spit/god know what else smeared all over....who IS that guy!?.... I think, because misery loves company. It's so nice to have people that understand this "thing" ....ask, share, support, make shit up, vent, whatever...we care! clusterheads/supporters are our own best, frequently only, advocates and company...we have to be.... This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. ....oh, i thought you had more experience with it. my experience and observations of most frequently reported over the yrs: takes a 10-14 days to work (which is why a concurrent prednisone/methylprednisolone iv/taper is standard western med treatment), takes a while to dial in, just when ya got it figured stuff changes. 240 mg is a low dose, many go higher (some much higher) so best to start low and build to higher levels if needed. more reported success with immediate release vs extended. lotsa water/fiber to keep things moving along. timing doses to expected hits sometimes helpful. highly recommended to do baseline ecg and repeat as dosage increased significantly due to possible heart rhythm effects (reversible upon discontinuation). a headache specialist neuro (regular neuros can be and usually are as ignorant of CH as regular Dr's) is familiar with high dosage tolerance in cluster patients and can guide you through up/down tapers as well as other control measures. there are those who believe extended use causes ECH to turn CCH. again, an experienced HA specialist would have thoughts on this. i used verap for 7 yrs before dialing in the OXYGEN, energy/drink, D3 and zomig ns. turned chronic 2 yrs after...so never felt a connection. chronics will tell you they'd rather be episodic, episodics just the opposite. having been both, to me it's all the same shitshow, just a different channel. most all tools work, just in different ways....only you can figure your best path. Also worth noting--- I took melatonin last night, 1st night in 4 ....good on ya for finding that, many find help there, be willing to adjust dosage. Benadryl (diphenhydramine) also helps with sleep and allergies that may trigger hits... I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." ...a log is a great idea, if you are organized about it there is lotsa great info to be gleaned.... ...i used to PRAY for that last screamer...knowing a) this is gonna be bad!! b) yee-haw, it's gonna be beer-thirty in a few days!! it's all relative... I'm going to try the Vitamin D3. ... do all the regimen...no dabbling.. Have not tried O2 yet, ...YESTERDAY!...there are countless clusterheads who can testify to OXYGEN as a LIFE CHANGER! 15-25 lpm, non-rebreather mask/demand valve/direct from hose, and dialed in (for you) breathing technique all vital... and definitely I normally stay away from energy drinks.....but perhaps not anymore. ...totally understandable...i've never touched one outside of CH need myself....but, incredible difference maker used judiciously. some prefer just a high dose caffeine beverage...really hot or really cold for whatever you use can help... But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball .....nothing regular or planned, but i could pound caffeine and be asleep in minutes....many others report same.... I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend ...if ya want a chuckle check out this link: New CH.com Forum - Dopiest responses to CH (clusterheadaches.com) ....poke around the rest of the ch.com site too...priceless info therein....
  5. Hi Spida....sorry ya had to find us...excellent first post ....any experience with OXYGEN?....saved my sanity perhaps my life. advantage of being quick, side effect free, relatively inexpensive (compared to triptans), and more portable than many think. using an energy drink with 120 mg caffeine minimum and 1000 mg taurine minimum was especially helpful in making O2 more effective...sometimes on it's own. both O2 and energy drink used at first sign of a hit is critical.....the 2 oz 5-hr energy type very portable, quick to down and nunna the gross amount of sugar they put in these drinks to make palatable... ....verapamil was an extremely helpful med for me for many years until i too got tired of the side effects you describe. only the immediate release kind worked for me. 480 mg/day in divided doses for low cycle, 960+ in high cycle. tapering on and off is important but i never experienced any rebound effect either way. since my cycles were so frequent i just stayed on full time, tho i would have preferred to use only as needed. if you know when a cycle is over (experience and one ultimate blaster at the end told me) you can do the taper. ...pill form triptans were of no use to me and most clusterheads (unless you know your cycle well and can time use). for breakthroughs , zomig nasal spray (5 mg) worked better (minimal side effects, long term action) than Imitrex injections...tho i could get by with 2 mg drawn from vials (the 6 mg statdose typically prescribed is way too big a hammer)... ...many clusterheads have found relief with the vitamin D3 regimen....definitely look into that... best jonathan
  6. ....not to mention the f'n horse it rode in on.....
  7. ..nope...mebbe a personal google file....or mebbe i just don't know how to set up this pc thing....i will imagine DD singing it, but i aint hearing artie garfunkel ....
  8. ....oh i would love to see this but i keep getting a google 404 error (multiple pc).....is it available anywhere else @spiny?
  9. .....yeah!.....the guy oughta be a writer or somethin'...
  10. .....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...
  11. ....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.....
  12. ....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...
  13. 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
  14. .....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
  15. .......in case you were wondering...Bejeeber is the good looking one....
  16. ....a coupla clusterheads keepin' an eye on things....
  17. ....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
  18. .....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....
  19. ....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....
  20. .....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....
  21. ....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
  22. "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
  23. ...great news...life changer for many like me... ....care to share supplier info for others in area?
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