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jon019

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Everything posted by jon019

  1. sorry green...my apologies.......
  2. thank you....and I'm already seeing a difference
  3. hair hurts?...yeah, been there...so what...it'll go away...REALLY! ............... episodic v chronic...don worry son....both a bitch....you'll learn how to deal with either here... or ch.com... ...it's all in the attitude, planning and the right tools............... Best jon
  4. freak...I like your style.....my version of the 'beer test" was ONE beer...sipped slowly. usually got blasted but it never occurred to me...ya gonna get blasted anyway...might as well get "blasted".....sheesh, 35 yrs of this shit and I'm still learning!
  5. I'm with spiny.....the few (very few) times when I described CH to "civilians" and they sorta "got" it...was when I said: "even my hair hurts" (and I'm as bald as DJ)............... ...folks can relate to that...even if it's just a hangover..............
  6. yo spiny....couple of weeks ago...used the 'contact us" function...there was no reply....I would prefer knowing "who" specifically to contact with technical issues.....have noticed the occasional multiple postings of same post...usually new folks...odd....but a glitch I can live with........my request was to be included on new posts of ANY subject and replies to current topics.........alas, tis sporadic............ ...find myself visiting site to see new posts...and I miss a few. us old retired f***s need the stimulation.... Best jawn
  7. bwAAAAAA....I see MULTIPLE posts of some new topics...THEN see NO responses....OR... I don't even see new topics AT ALL...mighty glitchy..and frustrating!...and NO response to my request ......WTF ?????????.....................................................
  8. Ummmmm...YES!!!!!...there aint no damn rule says we gotta deal with KNOTHEADS...........................................................................
  9. Hi green, we all experience the beast in different ways...but the nerve pathways are quite clear and unilateral...top of head....temple...eye...teeth. mine started in teeth.... and involved all of those eventually. my prince of a dentist not only REFUSED to pull what he described as perfectly good teeth...but researched and DIAGNOSED me with CH when multiple GP's couldn't. you are describing a variation on the theme...the "good" part is that you know what your "signs" are...and therefore can put into effect your well planned countermeasures! like O2, energy drinks, mayhaps verapamil, imitrex or better yet.... Zomig nasal spray, D3 regimen, trigger avoidance, busting, etc.......you'll find it all here....... best jon ps...drop the naproxen...the benefits are negligible...the dangers plenty
  10. 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
  11. 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
  12. 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?"
  13. 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".
  14. 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
  15. 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
  16. 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.
  17. 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
  18. 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
  19. 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
  20. 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
  21. YUP!!!!! bwaaaaaaaaaaaaaaaaaaaa
  22. Stockpile! Brilliant! When possible that's what I do....and when feeling low I open that drawer and just smile..........
  23. 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.
  24. 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
  25. 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
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