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OgreONE
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This is an amazing site...
« on: Jan 18th, 2004, 12:15am » |
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Greetings, fellow CHer's!
I'm a new member and have spent the last week or so just 'observing.' This site is by far the best resource I've found on the 'net-or anywhere else for that matter! Mycomplements to the chef, and also for the aggregate membership-the quality of posts is heartening; sometimes it helps knowing there are people that understand. I've tried explaining it to others, and, they try but just don't quite 'get it.' (Doctors included!)
I was in remission for 3 years... I moved to OR from MN 3 years ago and was holding onto the hope that the change in venue and atmosphere was to thank for the remission. Oh, well...
Just a note to wish all who read it to thank you and to wish you all PF days and nites!
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BlueMeanie
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Re: This is an amazing site...
« Reply #1 on: Jan 18th, 2004, 12:24am » |
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Welcome to Clusterville OgreONE.
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jonny
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Re: This is an amazing site...
« Reply #2 on: Jan 18th, 2004, 12:34am » |
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If you have been watching for a week then you know im King around these here parts, ok......Keep reading.
Oh ya....Welcome aboard 
..................jonny
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| « Last Edit: Jan 18th, 2004, 12:30pm by jonny » |
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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ABOARD!Re: This is an amazing site...
« Reply #3 on: Jan 18th, 2004, 12:35am » |
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Damn! ANOTHER ONE??? SO sorry you had to find us, but since you did, I am glad you found us, and WELCOME ABOARD!!!
Tell us some more about yourself. How often you get them, how many do you have, what meds work/don't work for you?
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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OgreONE
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Re: This is an amazing site...
« Reply #4 on: Jan 18th, 2004, 12:56am » |
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Thanks for the welcome!
I've tried:
Ineffective-Cafergot, Maxalt, megadose ibuprofen, codeine, Jim Beam (not a good idea, I was a beginner), nasal Imitrex.
Somewhat effective- oral Imitrex (the new 50mg rapid-dissolve), ice packs, chain-drinking coffee (the cheaper the better, I've found... I can't explain why. Home-ground stuff like my wife drinks doesn't do it. Good 'ol Folgers Red. I'm becoming superstitious, though. More on that later!), and, for some reason, chain-use of nicotine lozenges.
I've read about the caffeine and nicotine here. I thought I was crazy using them from the info in the 'peer-review-type' periodicals. They really dont' do much once the headache gets a full head of steam, but I can stave a few off, it seems.
As far as the new Imitrex goes, I'm still not sure. It may be coincidence, but it almost seems to make some of the HA's WORSE... It helps on others, though.
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OgreONE
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Re: This is an amazing site...
« Reply #5 on: Jan 18th, 2004, 1:14am » |
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I forgot about the bio...
I seem to fit the 'classic' profile (if such a thing exists). I am 6'4", 240 lbs, caucasian, have the ruddy complexion (perennial red cheeks-not quite baboon ass, but that's probably a point of contension!)
The first CH hit me when I was 15. Of course, I had no idea that's indeed what it was. Just one headache, no cluster... Then when I was 18 I got steamrolled for a month. 2-3 whoppers/day. That was 10 years ago.
I mentioned my last cluster before this was in Jan-Feb of '01. It was then I was diagnosed. MRI and the works. (nothing in the scan, of course.) Like Yogi Berra said, "I had a brain scan and it was negative." I had a terrific physician and since have moved. I'm looking for a good specialist here in Oregon. (any suggestions/referrals are welcome!) Basically went into immediate care and told the attending my situation; waved of the 'script for Maxalt and said, "Imitrex, PLEASE." I'm willing (more than willing, hoping) to get ahold of the injections to try. The pharmacy only had the tablets, and I didn't want to wait 2 days for the needle. I'm 15 days into the cluster and counting....
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ClusterChuck
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Re: This is an amazing site...
« Reply #6 on: Jan 18th, 2004, 1:39am » |
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Hey, Ogre, I did not seen OXYGEN mentioned! GREAT stuff!
Or try the water X 3 button on the left! No script needed for good ole H2O!
Chuck
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| « Last Edit: Jan 18th, 2004, 1:41am by ClusterChuck » |
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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jonny
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Re: This is an amazing site...
« Reply #7 on: Jan 18th, 2004, 1:46am » |
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02 ROCKS!!!!!!
Beast bad 
..........................jonny
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OgreONE
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Re: This is an amazing site...
« Reply #8 on: Jan 18th, 2004, 1:54am » |
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I've got a varient of the mega-H20 method-lots of h20 and coffee!
I'm going to definately get set up with some oxygen. I go to great lengths to make excuses to stay home during the cluster; because I look like Quasimoto (hence OgreONE!) when they hit... A mask would be nice to at least HIDE behind!
Question for anyone: In addition to the mind-bending pain in your heads, do any of you experience a certain 'heaviness' (lack of a better descriptor) in your chest. It seems like my heart almost stops (it doesn't, I can feel my pulse and don't THINK I'm having a tachycardial episode), and I have to CONSCIOUSLY take over breathing. Maybe it's just a psydo-shock type deal to deal with the pain. Or maybe I'm hyperventilating and don't notice. I'm very interested to see if the 02 alleviates this.
Thanks for the help!
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jonny
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Re: This is an amazing site...
« Reply #9 on: Jan 18th, 2004, 2:11am » |
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Let me know if you cant get a script for 02 (Some Doc's suck that way) I can hook you up.
...........................jonny
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TxBasslady
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Re: This is an amazing site...
« Reply #10 on: Jan 18th, 2004, 2:15am » |
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Hi Ogre
Welcome to the board!
Sounds like you are on the right track as far as meds that work for most here.
If ya think this place is amazing now......just wait till you've been here for a while!
Sorry that your head hurts 
Hope the beast lets you get some rest. Someone always here 24/7. Let us know how you're doing!
Lots of pf vibes comin your way 
Jean
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Tara Ann
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Re: This is an amazing site...
« Reply #11 on: Jan 18th, 2004, 9:42am » |
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Welcome to the boat Ogreone! Sorry the beast found ya even after you moved! I have been having a "tightness/sometimes mild pain in my chest for the past month or so off and on during a CH.......Been in cycle since JUne but have been on some new meds, mostly bloodpressure type stuff just here lately (bout this past month) Docs tested my heart (EKG) just to be safe (I"m only 26 but my sister who's 24 has a heart condition that was recently diagnosed) and my heart is fine and have chalked the chest "pain" up to the meds......should definately tell your doc if you havent already, better to be safe than sorry!
Yeah if you get O2 make sure have the right mask....I just got it and I believe I am having not so good results with it cause I have the wrong one. Now I'm waiting for a nonrebreather mask.
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Giovanni
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Re: This is an amazing site...
« Reply #12 on: Jan 18th, 2004, 9:46am » |
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Welcome Ogre,
ASAP try the imitrex injections. It will abort my headaches within 5 minutes. The downside of these things are that the insurance companies do not want to give you enough and you'll have to request an "over-ride" from the doc. Also using imitrex too much can possibly prolong your cycle (according to the obversations of many of us).
I found that this is about the only abortative that I can use and function at work. When I'm blasted, I go into a closet or bathroom and inject myself.
Best of luck to you,
John
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don
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Re: This is an amazing site...
« Reply #13 on: Jan 18th, 2004, 10:24am » |
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Quote:If you have been watching for a week then you know im King around these here parts, ok......Keep reading.
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And Queen.
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Callico
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Re: This is an amazing site...
« Reply #14 on: Jan 18th, 2004, 10:46am » |
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Welcome aboard. Give this site a while to get a hold on you and you won't be able to leave it. Meet some of these other crazy, demented, wacked out people who call themselves clusterheads and you won't want to leave. When you actually meet someone else that you don't have to explain to, that knows and understands what you have and are doing it changes everything! Glad you are here.
You didn't mention any preventatives. Talk with your Dr about Verapamil and Lithium. Gotta run, Late to church. 
Jerry
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K.
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Re: This is an amazing site...
« Reply #15 on: Jan 18th, 2004, 6:24pm » |
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Welcome....you've found a great place where you'll get lots of support. Read all you can, there's tons of great info here. I know a good neuro in Portland if you want to drive that far.
PFDAN vibes to ya,
K.
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ckelly181
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Re: This is an amazing site...
« Reply #16 on: Jan 18th, 2004, 6:32pm » |
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Hey Ogre - where in MN are you from before you left us?
I'm in Brained...and at the moment it's 20 below...just charming.
Chris - welcome aboard!
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OgreONE
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Re: This is an amazing site...
« Reply #17 on: Jan 18th, 2004, 6:34pm » |
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I'm scheduled to go back for an appointment with a neurologist this week. My insurance plan covers the 'Trex tablets, but not the injections... I'd pay a second mortgage out-of-pocket to make these HA's stop!
I've seen prednisone reccomended often here, but aren't there some pretty serious side-effects (especially considering they are iffy at-best for a prophylactic treatment)?
I'm going to beg for an imitrex injection prescription, but have realistic hopes because even the new rapid-dissolve formulation of the tablets are only batting 500!
(500 is Hall of Fame by most standards, I know...)
K, could you pass on the information on the specialist in Portland? I'm only 90 minutes away. my email is the.coles@comcast.net
thanks to all of you and I'll keep you posted. i'm determined to become an expert on the subject!
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Jackie
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Re: This is an amazing site...
« Reply #18 on: Jan 18th, 2004, 7:07pm » |
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Just wanted to say welcome, Orge.
Yes, this is an amazing site....full of amazing people.
Again......welcome to the family 
Jacks 
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5-string
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Re: This is an amazing site...
« Reply #19 on: Jan 18th, 2004, 7:59pm » |
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Welcome OrgOne,
Sorry your head hurts. Glad you found this place.
Alot of good people here.
...Mark..
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stevegeebe
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Re: This is an amazing site...
« Reply #20 on: Jan 18th, 2004, 8:24pm » |
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Welcome Home Ogre.
Can't argue with the title of you post.
Steve G
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Little Deb
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Re: This is an amazing site...
« Reply #21 on: Jan 18th, 2004, 8:28pm » |
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Just wanted to add my welcome as well....way over here in North Carolina. Sorry you are one of us. But we are SPECIAL to say the least. Don't let anyone tell you different.
Happy to have you....Little Deb
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Patrick_A
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Re: This is an amazing site...
« Reply #22 on: Jan 18th, 2004, 10:27pm » |
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Hey Ogreone, I am a 28 year sufferer. During my last cycle(started in June) My Neuro prescribed for me a 60mg taper of Prednisone and 120mg of Verapamil 2 times a day. That stopped my cycle in its tracks and i have been off the meds now since early September. Been pain free ever since.
I knew going in that Prednisone has side effects, but i decided it was better than my 20 guage shotgun!
Imitrex and oxygen will definitly abort the CH, but i'd rather prevent than abort if i have a choice!
Good luck, lots of people willing to help here!
Patrick
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cootie
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Re: This is an amazing site...
« Reply #23 on: Jan 18th, 2004, 10:38pm » |
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Hey OgreONE......nice ta meet ya....I'm the coot's miester (NO I didn't say mister). Boy sumone has a large MUG on here..........Pam with a mug shot
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Prense
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Re: This is an amazing site...
« Reply #24 on: Jan 19th, 2004, 12:21am » |
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on Jan 18th, 2004, 6:34pm, OgreONE wrote:| My insurance plan covers the 'Trex tablets, but not the injections... I'd pay a second mortgage out-of-pocket to make these HA's stop! |
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...and you will if you have to foot the bill for the injections.
Welcome aboard Ogre dude!
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