jon019

Hi Mike...sorry you have to be here...but you'll be glad you are. Sounds like you need a new doc... a HEADACHE specialist...not just any neuro will do. I say this because that' a bad cocktail you're getting. Propanol is basically worthless for CH...it works somewhat for migraine. 80 mg/dy of verapamil is ridiculously low...so also worthless...most find the sweet spot to be 480 mg/dy taken in divided doses (immediate release is better for many vs extended release). Some go even higher...I used to take over 1000 mg/dy when in high cycle. Some have found success with Topomax...but the side effects are life altering and most stop. I couldn't function mentally at only 100 mg/dy...can't even imagine what 200 would be like. Caffeine containing energy drinks (minimum 100 mg caffeine AND 1000 mg taurine) taken at the onset of hit (preferably COLD and fast) is an effective abort for many. Any brand will do...I get mine at discount grocery stores for about $1/can...red Bull is the most famous but has a relatively low amount of caffeine/taurine and you are paying through the nose for their advertising. Eliminate all caffeine during the rest of the day....allows the energy drink to have a bigger punch as the body has not adjusted and therefor damped down the response. We all love us some O2...glad you got that going for you....Zomig NS (5 mg) is my abort of last resort when all else fails...effective 99% of the time for me....damned expensive tho and the insurance bastards make getting enough difficult. Look into the Vitamin D3 regimen (sorry I can't post the link...my wifi is wonky) but I'm sure someone else will post for you. Best Jon

Diet?....good discussion topic. And actually... there have been reams of study and multiple publications and books re diet... which show successful management of migraine.. for some...based on diet modification....either minimal or drastic. Talk to a bunch of clusterheads and you will hear about 'triggers" from certain foods and food groups....for myself: alcohol, aspartame, msg, and other high glutamic acid containing foods have all been problematic. Over 35 years I've learned what to avoid...depending on where I was in cycle. Alas, massive changes in diet proved fruitless...YMMV........... There is some correlation between migraine and CH....most if not all of the meds used for CH were actually developed for migraine. (excepting oxygen...which seems only beneficial for clusterheads v migraineurs. Have you tried?) Though one must be FULLY cognizant that they are completely different ailments...coincidental...partly... to the head. There isn't a single person on this list...or other lists... that don't yearn for more research on ALL aspects of CH. So far our relatively small numbers and therefore minimal economic incentive impact have stunted that. It seems to be getting better...based in no small part by the founders of this here site we are on! Best Jon

No....sigh...you're not...so please allow me to "fix" that fur ya: ABSOLUTELY! "I'm probably not going to be the first to tell you that I have found something that works for ME...it's diet...it's this diet....whadda ya think?"

Hi Annieled...welcome! Exercise is one of those bizarre contradictions contained in the riddle that is CH. For some...heavy exertion can abort an attack...while for others it is a trigger. Never made any difference either way for me....but I did notice that barometric CHANGES (not high or low) but the actual SWIFT change was a sure trigger. Oddly...never had a problem with air travel. Edited to add: heat all on its own is a trigger for some. Maybe you can again yog during a different season. Do you have access to and a script for oxygen?...you may be able to have a tank standing by and abort as the hit comes up. There are many clusterheads who worship the little green headed buddy that is an O2 tank...truly a life SAVER and changer................ Best, Jon PS and btw.....I'll never forget the drunk coworker who diagnosed me.."yu got toooooo mush stresssssssshhhhh!" She was right about the stress but wrong about the etiology. And note....there are some who get at least some relief by indeed staying hydrated... if not "sloshed".

Yup...what CHFather said. I always had an M tank for home...and a buncha e-tanks for out and about....AND peace of mind. Each needs it's own regulator...again...on the internet not too expensive. Some O2 shops "require" you to rent these regulators....tis ridiculous...buy yur own. A nonrebreather mask is not just a good idea...its the ONLY idea...don't let 'em give you nasal cannulas or a regular mask with holes.... I like the idea re educating the O2 shop...in my experience it was the manager (smooze 'em...get to know them...put a face to your patientness) of the shop who was (or not) interested. Met both kinds...the "don't giva damn"...and the "wow, that's cool, thanks, I can use that for my other ch patients"...so give it a go......... ....and yeah...we are a special group...clusterheads are "clusterfukked"... so we look out for each other...... Best Jon

Yo CF...ya got the big hurdle outa the way...ya got the O2! Now....don't mind the pea brains (I'd worry about an O2 shop that doesn't know what flow a clusterhead needs...but that's me being grumpy)...so anyway....just go on the internet and buy yourself a nice 25 lpm regulator...they can be remarkably inexpensive...I think I paid less than $20. Nobody will know or care what lpm you actually use. Don't assume you HAVE to use the whole 25...I usually got by with much less.....YMMV....try different flows...... Best Jon

Anita....sounds like ya got a plan...we love hearing that! Re salmon...I like my Omega 3s a bit more natural so I travel with canned salmon. Admittedly a bit odd. It was the Reno airport...and they kept calling agents over to look....eventually 4 screeners and a supervisor. It was hilarious but I couldn't laugh... because then they would know I'm as crazy as I look. They grilled me good until I finally said..."ok...get a can opener and I'll eat it right now!" That worked and they let me go.............................btw Icy Point brand by Ocean Beauty Sfds...excellent quality and a good price...I get it at Bartell's.

Have flown multiple times with epi-pen and zomig ns (I swear it looks like a bullet!) with nary a question. I'd bring the script along just to be sure. I have been stopped several times...once for an O2 regulator and mask...the other time for a can of salmon!? Best Jon

Ummm..,Bluesbro...me too...'tis my "rescue med" (99% effective)...the ONLY barrier I faced was the cost. But then, some things are worth more than $$$............. Best Jon

Best Jon Hiya Pixie, Thank you....never really thought it out. Haven't read the article but that describes EXACTLY my experience with verap. Always seemed like it was just holding something back, sometimes tenuously....like by a fingernail. Explains the need for constant serum level or successfully timing doses or need for dosage increase either over time or depending on cycle timing.... Best Jon

Hiya Pixie, Thank you....never really thought it out. Haven't read the article but that describes EXACTLY my experience with verap. Always seemed like it was just holding something back, sometimes tenuously....like by a fingernail. Explains the need for constant (sometimes constantly increasing) serum level or successfully timing doses or need for dosage increase either over time or depending on cycle timing.... Best Jon

YUP!!!!! bwaaaaaaaaaaaaaaaaaaaa

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...