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Topic: Dear Chronics (Read 1251 times) |
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mynm156
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Dear Chronics
« on: Jun 3rd, 2004, 2:26pm » |
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I have been diagnosed for 4 years but pretty much dealing with these for close to 15 years. This year has been my worst. Starting in early Feb. and pretty much through TODAY. I have been having almost daily headaches but living in constant shadows durring this time. I did have nearly a three week break from it all but the beast came back again and they seem to be getting stronger. I use to have cycles that would last a month or so. Some meds will help some will not U all know the drill. My question is Do we all the Chronics live like this? I mean EVERDAY. I know that we all have to learn to deal with these and not let them destroy our lives but this constant pain is wearing me down. Have pretty much tried everything.
Just a bad Shadow today guys cant see Neuro for a few days.
Good VIbes To All
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
 
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Re: Dear Chronics
« Reply #1 on: Jun 3rd, 2004, 3:11pm » |
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EVERYDAY
SINCE OCTOBER OF 2000
The ONLY time I really get any PF time is when I'm in the hospital getting DHE or Solu Medrol. Using LOTS of Imitrex injections to abort (too much). All else has failed !
Hang in there
Michael
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I'm STILL alive ?
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Karla
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Re: Dear Chronics
« Reply #2 on: Jun 3rd, 2004, 3:32pm » |
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I was daily from 2/98 to 3/04. No breaks.
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Karla
suffer chronic ch
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LINNIE
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ND Re: Dear Chronics
« Reply #3 on: Jun 3rd, 2004, 3:33pm » |
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I'm having the same problem this year. Mine started at the end of January and nothing seems to be working this time. I'm exhausted and don't know how much more of this I can take.
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mynm156
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hope life isn't a big joke, because I don't get it
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Re: Dear Chronics
« Reply #4 on: Jun 3rd, 2004, 5:13pm » |
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WOW!!!!
SUCKS TO BE US HUH!! Well at least I know what I am in for and that U all are here too!!
Thanks Guys!!
Hang Tough
Good Vibes
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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Woobie
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Re: Dear Chronics
« Reply #5 on: Jun 3rd, 2004, 6:26pm » |
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I dont know how you guys do it. You've got to be the toughest buggers in the world! 
HI LINNIE and welcome!!!
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Prense
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Re: Dear Chronics
« Reply #6 on: Jun 3rd, 2004, 8:07pm » |
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9 days PF last August-September time frame is the longest PF period I have had since 1993....
I wouldn't wish to be episodic at all though...I'm not a "grass is greener" type of dude.
At least imitrex injections work very well.
Chris
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: Dear Chronics
« Reply #7 on: Jun 3rd, 2004, 9:24pm » |
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on Jun 3rd, 2004, 8:07pm, Prense wrote:At least imitrex injections work very well.
Chris |
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I rely HEAVILY on Imitrex injections. IT'S A MUST HAVE AT ALL TIMES...NEVER LEAVE HOME WITHOUT IT !
TGFImitrex
Unsolved
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I'm STILL alive ?
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maria9
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Chronics
« Reply #8 on: Jun 3rd, 2004, 10:26pm » |
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Hi,
As I have said before there has to be an answer to this horrific pain that we are all experiencing. That is why my husband and I have decided to support this research and I hope you will as well.
http://www.maps.org/cgi-bin/thatsanorder_LE
Marsha
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miapet
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what doesn't kill me makes me stronger
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Re: Dear Chronics
« Reply #9 on: Jun 4th, 2004, 2:56am » |
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D was chronic (since 1985) .. .he has been p/f for a little more than 3 weeks (this is a FIRST), all due to the alternative, listed in the previous post . . . we fully support maps, and everyone involved in the program/research . . .we fully believe this is the way to beat this beast.
*positive light and energy*
miapet and D
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Clusterbusters Rock
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mynm156
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Re: Dear Chronics
« Reply #10 on: Jun 4th, 2004, 10:35am » |
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My 3 week break came after a (MAPS) attempt.
Now what?
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ave
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Re: Dear Chronics
« Reply #11 on: Jun 4th, 2004, 11:02am » |
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Read www.clusterbusters.com again..
And dose again. And posibly again.
Sometimes you have to persevere a little longer before packing it in.
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notseinfeld
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Re: Dear Chronics
« Reply #12 on: Jun 4th, 2004, 12:56pm » |
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As a chronic I guess I've got it easy in comparison to you guys. I have a daily reminder at best and a maybe a K3 at worst. Ever since dropping all meds, particularly the Triptans, things have improved to this, staid state.
However, television is a sure-fire trigger thus no Fraser, Sopranos, and the rest for me. Have maybe a 40 minute window then straight to the O2. Heck, took 2 weeks to get through "The Piano" video. Watchus Interruptus meguesses.
With Faith in MAPS,
nots
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-----------Democracy is three wolves and a sheep voting on what's for dinner. ---------------------
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jonny
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If you had three weeks PF your not chronic anymore, maps or no maps.
..................................jonny
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Prense
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Re: Dear Chronics
« Reply #14 on: Jun 4th, 2004, 6:05pm » |
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I think they changed the criteria for chronics to 30 consecutive days PF in one year unmedicated. I know all the documentation still says 14 days, but I recall reading somewhere that it was changed to 30. I may have misread something though.
Chris
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jonny
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on Jun 4th, 2004, 6:05pm, Prense wrote:I think they changed the criteria for chronics to 30 consecutive days PF in one year unmedicated. I know all the documentation still says 14 days, but I recall reading somewhere that it was changed to 30. I may have misread something though.
Chris |
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Thats what I love.....Someone that has never had a CH making the rules as to what is what, Now what would make a chronic not chronic if that person was taking helpful meds?
I know I can go two months without CH but as soon as I stop my prevenitive meds "BAM" im in deep, seems to me that im a chronic that is masked with meds......I dunno it just sucks that shit-heads make the rules and then change them as they see fit and they have never even had a CH.
.........................................................jonny
Edit:.....Its like saying an alcoholic is not an alcoholic cause they are taking antibuse
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| « Last Edit: Jun 4th, 2004, 6:28pm by jonny » |
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Roxy
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Re: Dear Chronics
« Reply #16 on: Jun 4th, 2004, 9:06pm » |
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Quote:| Previously, it was cluster attacks that lasted more than one year with less than 14 consecutive days in remission. Chronic is now considered cluster attacks lasting more than one year with less than 30 consecutive days of remission IRREGARDLESS of medication. |
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This was how Dr. Bigal put it during his lecture at the last convention.
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Roxy
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Re: Dear Chronics
« Reply #17 on: Jun 4th, 2004, 9:09pm » |
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Oh yeah, to answer your question:
on Jun 3rd, 2004, 2:26pm, mynm156 wrote:| My question is Do we all the Chronics live like this? I mean EVERDAY. |
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If you can't find a preventative med, than this is life you lead.
I had eight days PF last month.....it was cool..... 
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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Virginia
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Re: Dear Chronics
« Reply #18 on: Jun 4th, 2004, 9:33pm » |
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I had 15 hours PF in July 2002. 
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The Clusterhead formerly known as 9erfan.
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Digitalfilm43
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Re: Dear Chronics
« Reply #19 on: Jun 6th, 2004, 9:14am » |
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I've always been chronic and I've had roughly 30-45 days off (non-consecutive) in the last 3-4 years. I used to try to keep track of this stuff, but I found it's too depressing and a pain in the ass. Imitrex has never worked for me, so I rely heavily on O2 (never go ANYWHERE without it) and Zomig has been my other friend through the years. I'm just trying to live my life trying not to allow CH to control me.
-Todd
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Gator
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Re: ND Dear Chronics
« Reply #20 on: Jun 14th, 2004, 7:55pm » |
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on Jun 3rd, 2004, 3:33pm, LINNIE wrote:I'm having the same problem this year. Mine started at the end of January and nothing seems to be working this time. I'm exhausted and don't know how much more of this I can take.
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Welcome to the website and message board. We all know what you are going through as far as the ch goes. I've been hurting since November 2003. I still haven't found a prevent that works. Thank God for Zomig NS and O2. The best advice I can give is to become an informed patient. Read everything in the links to the left and on the OUCH website. In the meantime, drop in whenever you feel like screaming and let loose. We try to listen pretty well. You may not always get the answers you were looking for, but the answers you do get will be honest with no punches pulled. We are all a kind of dysfuntional family here. Welcome to the family.
In answer to the questions about what is considered Chronic, here is the latest edition of the classifications from the IHS.
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
Gator
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ChRoNiCk
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Re: Dear Chronics
« Reply #21 on: Jun 15th, 2004, 1:53pm » |
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man, this sucks. im not sure if i qualify as a chronic, but for 3-4 months i get them EVERY day ALL day long. mostly about k4 all day, with attacks up to 8 or 9 like 3 times a day. i'm always thinking, "why me?" meds work for like a day then they stop working, damn i cant wait till they go away in like november.
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nick
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Gator
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Re: Dear Chronics
« Reply #22 on: Jun 15th, 2004, 4:35pm » |
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on Jun 15th, 2004, 1:53pm, ChRoNiCk wrote:| man, this sucks. im not sure if i qualify as a chronic, but for 3-4 months i get them EVERY day ALL day long. mostly about k4 all day, with attacks up to 8 or 9 like 3 times a day. i'm always thinking, "why me?" meds work for like a day then they stop working, damn i cant wait till they go away in like november. |
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To answer your question, if you only get hit for 3 - 4 months out of the year, then you are episodic, not chronic according to the IHS classifications. Chronics go for an entire year without 30 consecutive days break.
You say you have the headaches ALL DAY LONG? Describe the length and number of attacks. Where on your head are they? Always the same side? What meds do you take, prevents and aborts? Have you been diagnosed by a GP or Neuro? Have you had any kind of MRI to rule out possible organic cause?
Inquiring minds want to know. Maybe we can help find the right materials for you to discuss with your doc.
Gator
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ChRoNiCk
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Re: Dear Chronics
« Reply #23 on: Jun 15th, 2004, 4:45pm » |
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MRI came up with nothing out of the ordinary. Both my GP and neurologist say its cluster headaches. I get them on both sides of my head. I guess the headaches I have all day are what you would call shadows, but they are still pretty nasty. The attacks last anywhere from a couple of minutes to over an hour(these long ones make me wish someone would just put me out of my misery sometimes). Somedays I'll just have the bad shadows all day, most of the time i get 2 or 3 attacks a day. So far the only preventative med I've tried is Prednisone, didn't do jack except give me bad acne. As for aborts, fioricet, ultracet, fiorinoul, cafergot, and most recently relpax. All of these worked kinda well for the first day or two, then they really stopped. The relpax does a pretty good job of dulling the headaches, but so far nothing completely takes them away.
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nick
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Superpain
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Re: Dear Chronics
« Reply #24 on: Jun 15th, 2004, 4:58pm » |
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on Jun 15th, 2004, 1:53pm, ChRoNiCk wrote:| man, this sucks. im not sure if i qualify as a chronic, but for 3-4 months i get them EVERY day ALL day long. mostly about k4 all day, with attacks up to 8 or 9 like 3 times a day. i'm always thinking, "why me?" meds work for like a day then they stop working, damn i cant wait till they go away in like november. |
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Sorry, but not only are you not chronic, that's a relatively short cycle. Be happy.
I believe the "definiton" of chronic just changed from 2 weeks to 1 month... Meaning if you go one year without one month of headaches, you are chronic.
And chronic isn't necessarily always chronic anyway...
My last cycle I went over 2 years without a month of PF. But besides fitting the "official definition" I was never chronic. I'm just one of the lucky one's that gets extremely long nasty cycles. And each one gets longer....
I would define chronic as having no more than 30 days PF for the rest of your life.
And there are a few people here like that. So when you think "why me" and "I just can't take it anymore" and thoughts like that, just remember that you are very lucky because it IS going to end soon. The headache and the cycle...
But for the "true chronics".... I don't know what to say... They are beyond needing or wanting sympathy, so all I can do is salute them for being so strong. Because through no choice of their own they have evolved into the toughest people in the world. But only we can understand that.
So cheer up you crazy little clusterheads! I know that shit hurts BAAAAAD! But frankly it makes me chuckle seeing so many of you get all worked up and worried about being chronic when you hit the 3rd month! 
Again, I'm not trying to diminish the magnitude of your suffering and pain for I have danced hard for many years, but....
When you hit the 3rd YEAR start worrying about being chronic. 
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Chris
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