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Topic: chronics (Read 980 times) |
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boonie
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I have a question for the chronics, are all your days the same throughout the year or do you have times that worse than others.
Jim
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boonie
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Carl_D
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There are some good days (only comes on during rest or sleep), and then there are days you don't get shit done because you are geting hit constantly. The one consistency is that you will get them. End of story.
Peace,
Carl D
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Renee
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Re: chronics
« Reply #2 on: Jan 16th, 2004, 2:24pm » |
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My story is the same as Carl's. I can add that I suffer more daily ha's each day during the late fall and early winter than in the spring and summer.
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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jonny
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Before meds it was like Carl....Since ive found my magic cocktail of prevenitive meds my foot is so far up the beasts ass im bashing him in the friggin brain 90% of the time.
...................jonny beast tamer 
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Jackie
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Re: chronics
« Reply #4 on: Jan 16th, 2004, 2:43pm » |
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Blake is asleep in his recliner.... so I'll answer for him.
There are good days, so/so days and terrible days.....depending on if he's in high cycle or low cycle.
Now....I have a question. According to the definition of 'chronic' he may not be considered chronic anymore...he's been HA free for more than two weeks but he's medicated and it hasn't been a year yet...hmmmmmm, I think I just answered my own question.
Jacks 
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jonny
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Jacks,
What I go by is one year without a two week period PF unmedicated.
What two people told me months ago is that they changed it to...two week PF medicated or not.
To me that is major Bullshit, how the fuck can anyone say anything medicated or not?
Know what happens 4 days after I stop my meds?...3-5 HA's a day............Know what happens when I go back on my meds?.........1-2 HA's every few weeks.
How the fuck they can change shit like that
..........................jonny
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Marc
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Re: chronics
« Reply #6 on: Jan 16th, 2004, 2:59pm » |
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Jim,
I have to go with Jackie's description - but I'll say good weeks bad weeks - a rollercoaster to be sure.
Most of the time I can get 90% control with meds, but then they break through for awhile....... Biggest problem for me is rest and relaxation - that's when I get nailed most often. During an adrenaline rush I'm safe.
Marc
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Jackie
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Re: chronics
« Reply #7 on: Jan 16th, 2004, 3:05pm » |
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I'm with you, jonny... on the change in definition....it's bullcrap.
I remember when you tried to go med free......DO NOT ever do that again... 
I doubt that Blake will ever be med free...not in foreseeable future anyway. It's taken years to come up with this med combo....can't imagine changing anything now. Life is pretty good these days... 
Praise Verapamil, Lithium and Topomax.. 
Jacks
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| « Last Edit: Jan 16th, 2004, 3:45pm by Jackie » |
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Virginia
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Re: chronics
« Reply #8 on: Jan 16th, 2004, 3:42pm » |
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Yeah, I'm with Blake. But I haven't found my med combo yet.
Trying the alternative therapy this weekend.
For me good days = 3 ha's at about a KIP 4 or 5...not too bad
Bad days = 5 - 6 ha's ranging anywhere from KIP 6 - 10
Horrendous days? = 10's every 3 hours.
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The Clusterhead formerly known as 9erfan.
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Kirk
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Re: chronics
« Reply #9 on: Jan 16th, 2004, 3:56pm » |
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Good days 2 @ kip - 5 I can deal with that
Bad days 8 @ kip 8 -10 It deals with me.
Meds keep it bearable most of the time.
TTFN
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fubar
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Re: chronics
« Reply #10 on: Jan 16th, 2004, 4:07pm » |
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For sure there were bad days, and worse days. I can't remember calling *any* of them good days. If I wasn't changing meds, frantically searching for an end to that hell, it probably would have been more consistent.
Now that it's over, they're all good days. Every one better than the last. I still think that somehow I'm going to wake up and this PF time will have been a dream, but as far as I can tell, I'm done with this shit.
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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ClusterChuck
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Re: chronics
« Reply #11 on: Jan 16th, 2004, 4:07pm » |
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Normal for me is one or two a day. Every now and then I get a day of none. But then, I have "cycles" where I get nailed. Been in one now since July. 6 to 12 hits a day.
Can't wait to get back to one or two a day!
Chuck
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Thomas Fuller
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Roxy
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Re: chronics
« Reply #12 on: Jan 16th, 2004, 5:34pm » |
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on Jan 16th, 2004, 2:43pm, Jackie wrote:
There are good days, so/so days and terrible days.....depending on if he's in high cycle or low cycle. |
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Perfect description Jackie. I think I'm due a low cycle sometime soon.....just wish it would hurry up.....
Mine seem to be all messed up right now. On Monday and Tuesday....I was up there in the 8-9-10 hits. Yesterday and today, only 5 or 6. If I get down to one or two hits.....that's PF to me.
It's never boring.....
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I used to have a handle on life....but it broke.
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Jackie
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Re: chronics
« Reply #13 on: Jan 16th, 2004, 5:56pm » |
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on Jan 16th, 2004, 5:34pm, Roxy wrote:
I think I'm due a low cycle sometime soon.....just wish it would hurry up.....
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I think you are too, Sweetie. Hang in there...it's gonna get better. Bless your heart.
Love ya,
Jacks
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JDH
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Re: chronics
« Reply #14 on: Jan 16th, 2004, 6:21pm » |
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on Jan 16th, 2004, 3:42pm, 9erfan wrote:Yeah, I'm with Blake. But I haven't found my med combo yet.
Trying the alternative therapy this weekend.
For me good days = 3 ha's at about a KIP 4 or 5...not too bad
Bad days = 5 - 6 ha's ranging anywhere from KIP 6 - 10
Horrendous days? = 10's every 3 hours.
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I can't even imagine that. You people with chronic ch's amaze me and have all my respect. How do you cope?
I have a hard enough time dealing with a yearly 6 to 8 week cycle but to deal with it EVERYDAY?!?!
PF vibes to all of you and I hope you can find something that works for you.
Jim
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It's not what you know, it's what you can prove.
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Callico
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Re: chronics
« Reply #15 on: Jan 17th, 2004, 1:13am » |
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Good days and bad days all over the place. I cannot see a pattern in mine since I got started on Lithium along with the Verap. About all I have noticed is that they are not on a regular schedule any more although they rarely get worse than a 5 or6. Most do still jit in the late evening though, which totally screws up sleep. I've forgotten what it is to get a night's sleep.
jc
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BarbaraD
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Re: chronics
« Reply #16 on: Jan 17th, 2004, 8:26am » |
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on Jan 16th, 2004, 2:59pm, Marc wrote:Most of the time I can get 90% control with meds, but then they break through for awhile....... Biggest problem for me is rest and relaxation - that's when I get nailed most often. During an adrenaline rush I'm safe.
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me too Marc - Seems the beast doesn't like for me to relax. Usually during stressful times - I can keep him at bay, but as soon as I relax - WHAM!
And on the days you think you're PF, I'm still "on guard" cause I know he's lurking somewhere behind my eye.
Spring and Fall are usually worse, but this winter ain't been too good either.
Hugs BD
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Prense
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Re: chronics
« Reply #17 on: Jan 17th, 2004, 11:18am » |
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on Jan 16th, 2004, 2:16pm, boonie wrote:I have a question for the chronics, are all your days the same throughout the year or do you have times that worse than others.
Jim |
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I anticipate attacks everyday. I do not get hit in the middle of the night very often, thank God! There are rough days and there are good days for sure. I have had 8 days PF in the past. That is a definate vacation! Normally, I am taking about 30 or so hits a month these days. I have had no success with preventatives, but imitrex has definately given me my life back. My neuro wishes I could reduce my trex intake. I told her that I will when she starts preventing attacks...
I do not know if I could handle episodic cycles. Yeah, it's alot of PF time, but the change in lifestyle once a year...wondering when it is going to happen, etc.
I don't mind being chronic.
Chris
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Jayne
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Re: chronics
« Reply #18 on: Jan 17th, 2004, 11:28am » |
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well before I started taking the Lithium (((((((Lithium))))
along with my verapamil. I would definatley have two BAD periods of HA's a year. One in the winter and one in the summer, where it seems my meds were doing nothing. In between those times my meds would keep them mostly at bay.
Since the lithium I have not had a HA since Dec 21st. I even went out for a drink last week and got a little merry and no HA's which was unbelievable to me. Usually I would have to pop a zomig or an imitrex pill if I wanted to have a drink, and I would still get hit later in in the middle of the night.
Hey question for Jonny..before you were on your lithium and verap...I'm talking no meds. Was alcohol still not a bother to you?
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| « Last Edit: Jan 17th, 2004, 11:29am by Jayne » |
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JDH
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Re: chronics
« Reply #19 on: Jan 17th, 2004, 11:38am » |
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on Jan 17th, 2004, 11:18am, Prense wrote:
I do not know if I could handle episodic cycles. Yeah, it's alot of PF time, but the change in lifestyle once a year...wondering when it is going to happen, etc.
I don't mind being chronic.
Chris |
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I guess that will always be the argument between chronic's and episodics.
It just seems to me that as devastating as it is when my cycle rolls around it can't possibly be as bad as taking those hits on a daily basis. I mean I just shut down when a cycle starts. I get depressed, irritable and basically not a good person to be around. I don't know if I could handle what you people go through but if I had to go through it I know I would be in good company.
Jim
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| « Last Edit: Jan 17th, 2004, 11:39am by JDH » |
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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Prense
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Re: chronics
« Reply #20 on: Jan 17th, 2004, 11:40am » |
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on Jan 17th, 2004, 11:38am, JDH wrote:| I mean I just shut down when a cycle starts. I get depressed, irritable and basically not a good person to be around. |
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I know what you mean dude!
As a chronic, I don't get depressed, irritable, etc. You just get used to it I guess. Either way CH sucks ass!
Chris
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Jayne
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Re: chronics
« Reply #21 on: Jan 17th, 2004, 11:42am » |
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no Chris clusters suck major donkey dick!!
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Kevin_M
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Re: chronics
« Reply #22 on: Jan 17th, 2004, 11:55am » |
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on Jan 16th, 2004, 3:42pm, 9erfan wrote:Yeah, I'm with Blake. But I haven't found my med combo yet.
Trying the alternative therapy this weekend.
For me good days = 3 ha's at about a KIP 4 or 5...not too bad
Bad days = 5 - 6 ha's ranging anywhere from KIP 6 - 10
Horrendous days? = 10's every 3 hours.
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Very good description of how I am twice a year for three months. The second and third month are all bad and horrendous days, then back to bad, then good after three months. PF though is actually about five months a year. I got good sleep ( at least 6 straight hours) just starting to come around since last October, this period is starting to wane. I don't trust those PF periods though and still carry meds. "It" still lets me know it has residency and it's lease is not up sometimes.
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JDH
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Re: chronics
« Reply #23 on: Jan 17th, 2004, 12:24pm » |
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on Jan 17th, 2004, 11:40am, Prense wrote:
on Jan 17th, 2004, 11:42am, Jayne wrote:| clusters suck major donkey dick!! |
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Fuckeneh! you're both right!
we do agree on that.
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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jonny
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on Jan 17th, 2004, 11:42am, Jayne wrote:
Im just mule but will I do?....LMMFAO
Gotcha Jayne
.....................jonny
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