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kayarr
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Spouse of CH, Hello
« on: Aug 29th, 2005, 2:58pm »
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Hi,
My name is Kimberly and I am the significant other of a man who has cluster headaches and has for around 10 years.  He is unfortunately chronic and has about 3 seperate days a year when he has no headache.  We manage the pain with oxygen and he takes depokote regularly.  Last fall he had a heart attack and a stent put in and we found out the verapamil didn't play well with his other medication so he had to stop taking it.  This summer he seems to have worse and longer lasting an more frequent episodes than last summer and a couple summers past.  
All I know is he hurts and I feel helpless and it kinda feels good to actually say that.
WE don't talk about it much.  It may jinx everything.  Ya know like if he's gone all afternoon without a headache.
Anyway, hello.  I have a feeling you understand what I just saidSmiley
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Re: Spouse of CH, Hello
« Reply #1 on: Aug 29th, 2005, 3:08pm »
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on Aug 29th, 2005, 2:58pm, kayarr wrote:
Hi,
My name is Kimberly and I am the significant other of a man who has cluster headaches and has for around 10 years.  He is unfortunately chronic and has about 3 seperate days a year when he has no headache.  We manage the pain with oxygen and he takes depokote regularly.  Last fall he had a heart attack and a stent put in and we found out the verapamil didn't play well with his other medication so he had to stop taking it.  This summer he seems to have worse and longer lasting an more frequent episodes than last summer and a couple summers past.  
All I know is he hurts and I feel helpless and it kinda feels good to actually say that.
WE don't talk about it much.  It may jinx everything.  Ya know like if he's gone all afternoon without a headache.
Anyway, hello.  I have a feeling you understand what I just saidSmiley

 
Kimberly,
 
Welcome to our community. While I usually let the "supporter" committee respond first to supporters who sign on, your post struck a chord. Just as you said it felt good to admit the feeling of helplessness, I can tell you that one of the things that felt good with my supporter this year was finally talking about it. I used to feel as you mentioned, that I'd "jinx" things if I talked about it, or my cycle would be longer, or that by talking about it I would bring on a hit when in cycle.  
 
As Stevie Wonder said: "When you believe in things that you don't understand
Then you suffer, Superstition ain't the way"
 
But seriously, if there's one goal, it's to get past the "jinx" idea. Since i've started to talk more about it with my supporter and others, I've had no more hits than I normally would have and a lot more understanding. And through sharing it has opened up some new paths for my wife and I in our communication about other things related to CH and how it affects our lives.
 
Jinxing thinking is stinking thinking.....
 
Scott
 
 
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Re: Spouse of CH, Hello
« Reply #2 on: Aug 29th, 2005, 4:25pm »
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Hi Kimberly, be happy to know you are not alone, most of us sufferers have great supporters like you. Talking about it does not jinx anything, it only helps you both deal with the pain better. Knowing what we have makes supporting it easier. For many years my wife and I had no clue what I had. Since I got the proper diagnosis, our communication has improved, my PF time has increased, and our life has gotten better.
 
We're here for you.
PF wishes.
 
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kayarr
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Re: Spouse of CH, Hello
« Reply #3 on: Aug 30th, 2005, 11:46am »
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Thank you for the kind welcome.  There is a lot of Love here at this site.
If you don't mind I am going to mosey around and see if I can find anything out that I need to know.  I married my guy after he had had CH for 8 years.  He had already done a lot of research and found for him to dwell on it was not good.  
Before I came here I didn't even know anyone else who understood.  WE don't really think anything is jinxed but he has no real pattern and it changes with regularity...who knows.
Thank you for being here.
Kimberly
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Re: Spouse of CH, Hello
« Reply #4 on: Aug 30th, 2005, 4:51pm »
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Welcome and sorry to have to see ya here. Hope things get better unfortunatly they usually dont. but sometimes we get good pf news from some and it feels good. again welcome and visit often.
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Re: Spouse of CH, Hello
« Reply #5 on: Aug 30th, 2005, 5:49pm »
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Going from chronic to episodic does happen, Ive been living it for most of the last year.....life (Head wise) has never been better!!
 
Ill leave it at that Grin
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Re: Spouse of CH, Hello
« Reply #6 on: Aug 30th, 2005, 7:05pm »
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on Aug 30th, 2005, 11:46am, kayarr wrote:
Thank you for being here.
Kimberly

 
And thank you for being a wonderful proactive supporter! Smiley
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kayarr
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Re: Spouse of CH, Hello
« Reply #7 on: Sep 1st, 2005, 9:57am »
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Thanks again to all ,
May I please say that I am in awe of all of your strength.  My husband is kind, empathetic, creative, intelligent and even if he does get a little grumpy he apologises. ( I DO understand) All of this and more on very little sleep and hurting.  How can a person not support someone that they admire and love so much.
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