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jon019

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Everything posted by jon019

  1. ...shaun....easy-peasy...start with a joke, you cheeky devil...like: i picked this topic just for you!
  2. ....yup, sometimes successful migraine med...... old, with poor results for CH. first med ever for me....1980"s.. ....there are folks with both migraine and CH, it happens. sometimes, we can hope here, getting one under control helped with the other. if not, ya keep building your tool belt .... ...double bonus: BP down and migraines too, if you feel right on the edge discuss with Doc, there are alterations in dosage that may help. (most meds, especially HA meds, are quite dosage dependent, methinks)...
  3. ....i'm saying i have never seen it reported...but absolutes re CH do not exist...if there are fixed/visible physical manifestations, it would seem they are rare...i would not take that to mean there is no evidence. mostly talking the dreaded brain scan, while also noting that the pupil of my affected side eye is permanently constricted. eye docs/neuros just shrug... ....since it was well known at work that "jon has CH"....i was approached by folks suffering from "headaches" of various kinds on a fairly regular basis. one friend of a friend had many of the classic symptoms of CH (unilateral, excruciating, autonomic symptoms, same daily timing. etc) and i was asked "is this cluster headache?". sure sounded like it, but i am NOT a physician, refused to say, and strongly urged a visit to a neuro and "a scan to rule out potential underlying causes". a careful diagnostician would consider this routine (and one of the reasons to find a HA specialist). he took that advice and it turned out to be a rapidly growing tumor that was life threatening...found/removed in time. i do not know the details of location....and i do not wish to alarm....so you are on the right path to eliminating other cause with the neuro visit...
  4. ...yeah...THIS! ...for reasons other than CH i've had multiple scans of various kinds.....nearly every one shows "something" that draws comments re potential causes. it's radiologist CYA and always scared the spit out of me until i came across a urologist who bemoaned that....and another physician who said "we ALL have "anomalies" ...you are more likely to die with than from....a scan in and of itself is rarely determinative of anything". ...do your research, i did, but use it to ask questions rather than come to scary conclusions... ...fwiw...and this is a personal observation based on years of being in the clusterhead community. there are conditions that mimic CH symptoms...and which makes a diagnostic scan worthwhile, but, i've never seen any lit that describes CH being a causative factor in scan anomalies...
  5. ...brackets?....BRACKETS?.....brackets are like badges.....WE DON'T NEED NO STINKING BRACKETS!
  6. ...that was exactly my first thought...we will never know how MANY...even if it were just one, and it's you...that's pretty damn amazing! .....and a shout out and thank you to NHF for their perceptive recognition. they were formerly known as National Migraine Foundation and have been in the business of saving lives for decades. way back in the 80's they had a newsletter that ALWAYS included an article or forum response about CH. like water in the desert, seemingly the only source of CH widely available to the public. saved my sanity perhaps my life when they provided the blessed OXYGEN information ...and a discussion of the meds then available. i am forever grateful for them, Bob, DJ Johnson....and y'all... ...and oh....COOL tie Bob!!!
  7. ....got the occasional leaker myself over the years but always kept a tank in car....winter/summer. made for some interesting eyeballs from cops when using on the road (not recommended but sometimes ya just gotta do what ya just gotta do). keep the tank in car, strap it down, and check the pressure on a routine basis....i did every Monday.....
  8. ...i am fluent in...............................smart-ass
  9. ...ok...up The Reds.....but i couldn't find you in the crowd...and bollocks to those Everton tossers... Liverpool chants: Lyrics & videos to the most popular Anfield songs | Goal.com US
  10. .....yup....it took me a lotta yrs to figure out that: "relax and concentrate" was the only way i was gonna get through this CH sane. ya start by learning everything you possibly can (some of that from you ) which leads to the right attitude....... so that you can formulate a proper plan......with what you KNOW are the right tools. ...never had kids, but had a buncha lady techs work for me, every one of them repeated back to me at some point: "sign your damn work!". made my fricken day. different road to accountability, not as good as yours, but no made up stuff or useless crud on my desk. amazing how ownership of something engenders responsibility.....
  11. ...threadjack?,ok..... up Arsenal.....go The Gunners!!
  12. This encapsulation ^^^^ should be enshrined as a motto, or maybe as part of a cluster busting oath. Let us raise our right hands. ...spiny this is all time classic....i almost fell out of my chair!!!....been my goal for 40 years but didn't know how to say it. relax and CH at the same time? no way?...YES, way! ...like Yogi said..."in order to hit you have to relax and concentrate" or Reagan..."trust but verify".....
  13. ...well you figured a work around didnja BP!? ....have never seen that particular notice....or had a double post....you got yurself a special case...you running Windows or are you grape-kool aid "Apple"?
  14. .....see AussieBrian at clusterheadaches.com....his email addy is in the tag line. way good bloke, if he don't know he'll know someone who does.... Clusterheadaches.com NEW Message Board My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
  15. Prednisone didn't work, so I've only been using oral sumatriptan (we are going to try Verapamil for next cycle) and some Advil and Tylenol. ...unusual for pred to not at least interrupt cycle while a prevent kicks in. note that verapamil is very dose dependent, and the lower levels have less chance of success. 480 mg/dy in divided doses seems to be the sweet spot...some go much higher. hopefully your doc willing to up the doses, if needed, to find what works for you. many inexperienced with CH are reluctant to use the dosage we need. immediate release (IR) better results than extended (ER). LOTS of water and fiber to keep GI moving along... ....advil and tylenol basically worthless for CH and care must be taken not to use too much. some folks find they help with shadows (naproxen sorta helped me there on occasion) This current cycle has been different. We are now in week 5. The attacks stopuped at the end of week 3 (like past cycles), but now I am hstill getting 1 to 2 dull headaches a day that seem to linger much longer than a true 10/10 hit. I'd imagine these are what many of you refer to as "shadows." They are also like clockwork, 12 hours in between. ....that sounds more like "subtle" hits than shadows...which most find less predictable than the dang predictable timing hits My doctors insist the cycle is ramping down, but it just seems to be morphing and not ending. Again the pain is 2/10 vs a 10/10 for proper attack, but it's still happening. If I take half of a sumatriptan (50mg) it knocks it out, but I am so over taking meds. Has anyone experienced a pattern like this and if so do you think it's better to just take the pain or is it better to knock them out with the .5 sumatriptan? Could the suma be prolonging this cycle? ...YUP.... it can cause rebounds and extend cycles....your gut feel on meds is correct. OXYGEN has none of these negatives ...fast, easy, and relatively cheaper compared to sumatriptan ...combining (or even alone) an energy drink (minimum 100 mg caffeine/1000 mg taurine) or other high caffeine drink AT FIRST SIGN OF A HIT with the oxygen was my go to....sometimes all by itself was sufficient. ....have you considered or tried the D3 regimen and or busting.... Thank you in advance for your insight and much love to all of you enduring these horrid headaches.
  16. .....nope...separate by 4-8 hrs. ask your pharmacist...they really know this stuff....
  17. ...CHfather has already discussed this elegantly. just to add my few cents. this is an odd combo i've never heard of and looks like a kitchen sink approach of old options. i have used all 3 (20+ total) and verapamil actually worked (at proper dosages depending on cycle) reasonably well (70% reduction in hits and lowered intensity).cypro and amitip were worthless for me (and that was maybe 18-20+ yrs ago (IOW he's reading old lit).....and little, if any reported, success with CH. guessing its the verap that's working. always my concern with multiple prevents, of these or others, ....that if this works....which one? ...there are newer meds i'm surprised have not been tried and i really second the urging of OXYGEN, energy drinks, and D3. faster, cheaper, safer alternative to traditional meds. ...then there are always the alternate methods discussed here... have the BEST track record....and make the above moot...
  18. .....ah yes, mamma don't allow no smart ass cluster bunny here....
  19. ....and not taken as such...i was riffing on your comments that are near universally true in clusterville. ....VNS works for some...worth a try
  20. ...same feelings here as Jeebs....worth a try. have always wondered about our "active" vocalizations that seem above and beyond those experiencing extreme pain. thinking back patients here for one, as i am one. totally theorizing that it is an attempt to influence "some" bodily function that will relieve our pain. sometimes it's voluntary, and sometimes just feels necessary. could it be the vagus we are hunting? dunno ...never seemed to work for me tho studies have shown that vulgarities/profanities shouted in the midst of anxiety do have, if nothing else, at least psychological benefits. since it was mostly wasted energy/made things worse in my experience, i trained myself to remain calm and non vocal while hitting the O2 and concentrating on "breathe" only. before that carried a (soon soggy) pillow to scream into in deference to the neighbors... ...i do think it behooves anyone wishing to explore vagus nerve stimulation to try out the VNS device. 'tis specifically designed to do such. i occasionally see a positive report for CH patients....but it has not caught on so apparently only works for some (who wouldn't want to be one. only one way to find out)...tho i bet $$$ w/o insurance approval.
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