jon019

Stockpile! Brilliant! When possible that's what I do....and when feeling low I open that drawer and just smile..........

Yes...me. Prescribed by the best neuro I ever saw. verapamil up to 1020 mg/dy....stopped maybe 70% of hits...used Zomig NS (5 mg as the last resort "rescue med"). 99% effective with no rebounds and NO negative reaction with verap. If you can afford it.... I HIGHLY recommend.

Yo CHf...best to you brother... Re verapamil....I was ona the upper limit guys...sometimes over 1000 mg/dy (480 mg/dy seems to be the sweet spot for many) . Extended release...for ME...was worthless no matter the dose. Got it once by accident and the panic that ensued (IT DOESN'T WORK ANY MORE!!!!!) is still SEARED in my brain. At least experiment. I had some success TIMING the split doses to just prior to anticipated hit times! Re O2....mixed feelings. At one point I was poor and had crummy insurance. Had to buy O2 out of pocket...$10 per e tank...which was quite reasonable...but still. This gonna cause eyerolls and guffaws... but I used 4-5 LPM and successfully (aborted about 60-70%) because I had to conserve. Wrong mask...wrong technique... Later, found success with better technique, 15 LPM and the right mask...Other times 20-25 didna work. see O2 thread at ch.com for near everything ya need to know...AND get the right mask...available from the store there. My gut feel is that O2 is not 100% effective no matter what...BUT proper setup, mask, and technique are CRITICAL before giving up........... Never liked Imitrex....made me feel "ooky"...found my favorite rescue med to be Zomig 5 mg nasal spray (99% effective...no rebounds). Damned expensive and damn insurance companies always made obtaining a trial.... Best Jon

My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com 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 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 controllable. Best Jon

Hiya Ong, Sorry I can't be of more help than just to say: I hear you! Was episodic for 23 some yrs...6-8 weeks on/off...all yr long. Tho I battled depression in general ...oddly it was MUCH worse OUT of cycle. When in cycle I could focus and just deal with it...without being all pissed off and sad! I think because I had a plan....dunno. Never ceased to puzzle me. Eventually became chronic....and most of the depression went away.....retired and nearly all the rest went too....no more stress. I highly recommend it.................................... Best Jon

I knew it was a tincture...probably some or all of feverfew, butterbur, gingko biloba, kudzu...et al. Do you know that alcohol is a trigger for many clusterheads? There was a time when "3 drops" would have put me at kip 8 within minutes ...no such thing as a cure....if it works for you...great...I AM doubting it's general potential success...to put it freaking mildly. Do you understand cycle ends, have you considered placebo effect (doubtful for ch, but then......)...how often do you take unknown chemicals from unknown sources based on "I heard"? ...what's your history (episodic, chronic, cycle length and type, diagnosis, dosages of meds, attempts at modifying dosages, combinations, O2 experience (type of mask, flow rate, technique), experience with steroids (IV, taper, both?), caffeine taurine combo (energy drinks), cold and/ hot applications? Vitamin D3 regimen? Attempts on this forum or others to seek advice on these? There are folks here and ch.com will bend over backwards to help....all ya gotta do is sincerely ask. However, your very first post touts a wonder cure...you should have heard the eyerolls and guffaws...I did! Your offer does remind me of a 1975 Starsky and Hutch episode...."out of the good ness of my heart...my friend...the FIRST one is free". What are you charging for the second....hmmmmmmm?? I have no desire to argue with someone who has no credibility...so I won't...PFDAN.

prednisolone bad.......lithium bad.......verapamil bad......O2 worthless.....sumatriptan useless: Soooo...let's try an unknown compound with unknown ingredients from unknown sources......sheesh it's not even noon and a first time poster thinks I'm stooopid....getting too old for that crap...but thanks for the minor amusement. Suggest you move on up the line to snorted cayenne powder...it too is "natural"....and you will see stars!

why don't you save us all the hassle and just tell us what this is?

Hi Steveo sorry for your probs. Advice above good.....Jus b careful u don't throw so much diff stuff all at once you'll never b sure what worked!! Best Jon

yes I have (cayenne powder)...hurts like a bitch... WHILE you still endure the ch hit...but...give it a try...we all the same...AND all different.. ...careful at work...folks see you disappear....and come back with red eyes and the "sniffles"...assumptions are made....

Yo, Caffeine PLUS taurine seems to work better.... Sleep > ch hit is a classic cruelty trigger employed by the beast... Would advise not to mess with your verapamil dosage without your Docs knowledge and approval. It is typical and recommended that you get a ECG when upping dosage as verap can affect heart rhythm... My med of last resort (after O2, energy drink and verap didn't work) is Zomig nasal spray....99% effective in about 8-10 min timeframe.... Best Jon

Thanks (twice!) CHF...I had forgotten the 2 oz "shots"...does that tell you something about my ch status Much easier and faster to use...and easily carried on person! I also used to buy those at the discount store for around a buck. One note to consider...in my case.....a REALLY cold energy drink...gulped impossibly fast was always more effective for me.....and the sugar rush helped (tho there is WAY too much sugar in 'em...read the label). There are sugar free versions...just avoid aspartame (which acts like MSG...for me anyway). My favorite was "Wired" which had 344 mg caffeine and 3000 mg taurine per 16 oz (hence the 2 hits per can line). As you can see...I still haven't figured out the extra spacing issue.......the "delete" didna work... Best Jon

Hi cb...sorry you have to be back... That was a nicely written intro.... which helps us help you... Chdaddy beat me to the punch...he usually does...is a gentleman and a scholar...and I agree with what he said... Couple of thoughts re verapamil: instant release is better than extended release for most (not all) clusterheads.. I needed over 1000 mg/dy when in cycle (480 when out)...minimal side effects but you need to drink a lot of water and up the fiber to prevent constipation.... I would try taking divided doses throughout the day to keep a constant plasma level ....and I had some success timing doses approx. 1 hr before expected hits.... Re energy dinks: Red Bull actually has a relatively low level of caffeine and taurine than other brands and is ridiculously expensive (yur paying for adverts). Try Monster or Wired or any other brand with at least 100 mg caffeine and at least 1000 mg taurine. Grocery outlet stores carry 16 oz (good for 2 hits) for a buck a can Best Jon PS Could somebody lease tell me how to post w/o these extra spaces between lines...I can't find the format settings...

Hi Kyle...welcome...sorry you have to be here... It's a good question but while we are all in the same boat we are all different too.... In my case...when episodic...a cycle would ramp up slow...last 6-8 weeks at high intensity...ramp down sloooooooow...then end with the worst hit of the cycle. I used to pray for that massive hit because I knew it meant the end... Best Jon

Personally I can't watch these....about 20 yrs ago i saw one of ClusterChuck and it still haunts me. Can see the benefit of showing to the "doubters"......... Best jon

...thank you brother..... ...what I find most interesting...besides your post...is that another clusterhead and I have posted on ch.com that before/during/or after a hit... we craved a DARK room...just sitting and thinking....a cigarette was a reward I used "surviving". The smoking part may be inconsequential...and an oncologist made sure it was former...the "light" part... .hmmmmmmm ......... Best Jon

...I did not mean to sound so cold hearted about your friend....information like this could be of benefit to her AND others...and thank you for the post. I wish I had considered light effects sooner in my own ch career.... Best Jon

...not sure I follow....but ch pain is the worst I have ever experienced....and while I have prayed to pass out countless times...have never had the relief that would provide......and even then....it would probably prove temporary....

hmmm...wow.....light affects circadian rhythm...circadian rhythm is hypothalamus driven...ch is hypothalamus caused/related/connected.....perhaps this person is more light sensitive than others...in which case...COOL...a possible mitigater for others.......... Best Jon

...very interesting question...I've heard of folks getting hit "harder" in different locations than home...or the opposite...but that might just be disruption in schedule...which was always a trigger for me.... ...I doubt there is a "best" place...and even if there was...I like where I am...I just coped...most clusterheads do Best Jon

...there is NOTHING...in my experience (broken bones, falls, cuts)... that compares in ANY way to a bad cluster hit....THAT pain is truly indescribable. Sure other stuff hurts...but if I think about it.. I could tell ya exactly what a broken hip hurts like, or a kidney stone, or or or...NOT ch.....

...personaly I would record the pain level as perceived at the time...related to previous hits ...there are remarkable stories of clusterheads reporting on pain OTHER than CH... which to "normal" folks would be excruciating....but to a clusterhead is "meh"...see women and childbirth... ...which is to say we have an altered impression and a pain tolerance uncomprehended in the medical profession...one of the few benefits(?) of CH.... Best Jon

Hi John See this............... https://clusterbusters.org/forums/topic/4568-triggers/

Hi Gabby...welcome.... "Typical" is...prednisone taper while starting a verapamil preventive. Not at all uncommon for hits to return after the end of pred taper (I had luck once with prednisolone IV then taper (stronger version of pred). BUT...further pred dosing unwise due to potential AWFUL side effects with extended use.... I'd go for an upping of the verapamil dosing.....as 480 mg/dy is the sweet spot for many clusterheads.....and some go even higher... (I used 960-1040/dy when in high cycle). Wise to do an ECG before and during upping of dosage to check for potential heart rhythm anomalies. Check on the version you are taking... SR Verapamil is sustained release...many...not all report immediate release better. Try to time dosages to just prior to expected hit times.... Never heard of onzetra...perhaps others can comment. I had EXCELLENT results from 5 mg Zomig nasal spray...99% effective for breakthrough hits if oxygen and energy drinks did not abort... Best Jon

Hi....I would love to see these....and would truly appreciate an option other than FB. Whether it's age, tech disability, impatience, obstinance, knuckleheadness, knotheadness, or WHATEVER....dunno...I cannot fathom/handle/operate/navigate/understand/embrace/FB...it.just.doesn't.work.for.me.... one size does NOT fit all.....