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   Author  Topic: How to make them understand  (Read 1039 times)
goof1031
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How to make them understand
« on: Oct 30th, 2006, 4:33pm »
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I am a CH sufferer. MY bout started about 2 weeks ago. I have had 5 episodes. My boyfriend of 2yrs is experiencing this for the first time. How can I make him understand the after effects of the headaches. He does not understand how just 2 weeks ago I was fun, energized, loving etc..... and now I'm tired, irritable, moody etc..... I'm starting to believe he thinks I'm a hypocondriac?!!!!!!!!! PLEASE help me HELP HIM understand!!!!!
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Re: How to make them understand
« Reply #1 on: Oct 30th, 2006, 4:36pm »
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This should help.
 
http://www.ouch-us.org/chgeneral/colleagueletter.htm
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JeffB
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Re: How to make them understand
« Reply #2 on: Oct 30th, 2006, 5:47pm »
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Take a baseball bat to the side of his head over and over.
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Re: How to make them understand
« Reply #3 on: Oct 30th, 2006, 11:17pm »
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I think a lot of supporters (or potential supporters, in your case) don't really understand--it's completely outside their experience.  All I can suggest is that you make an effort to increase his understanding.  As a start, print out the "cluster traits" and the "kip scale" links at the left.  
 
Has he ever seen one?  It's difficult to believe that anyone who has witnessed an attack could ever minimize them.  It's possible, I suppose--anything's possible--but a CH attack is dramatic and terrifying, and (although I've never seen another person take a hit) it has to be pretty unforgettable.
 
I think, though, that if a person who is important to you can be given enough information to enable them to at least get a sense of the seriousness of CH or can witness an attack and still regard them as trivial, that ought to provide you with information that is valuable to know.  
 
Yes--the effects of being in cycle are profound.  You're fighting to maintain the shreds of a normal life while you are undergoing physical torture.  You're exhausted, upset, anxious, and struggling at the frayed ends of your strength.  An empathetic person who cares for someone will come to understand that.
 
Give him the information he needs, and give him a little time to come around.  Being a supporter is one of the hardest things imaginable--it's normal, I think, for someone new to the tough job of being a supporter to deny the symptoms in someone they care for, or to try to minimize their sufferer's experience.  
 
But, as you know, CH is a fact.  It's not something you can be talked out of, nor is it something that can be ignored.  It's part of who you are.  The bad with the good--the entire person, not just the fun one.
 
Can he accept that?  I can't answer that--but I believe that most good people can be the supporter that a sufferer needs if they truly care for them.  Again, give him a chance to learn--in time, he could be your stalwart ally against the beast.
 
Best wishes for pain-free times ahead,
 
George  
 
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Re: How to make them understand
« Reply #4 on: Oct 30th, 2006, 11:25pm »
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I agree with Jeff, but that feeling is a kip 5.   I was told that it is the same amount of pain as  getting your arm ripped off, concentrated in the temple area for hours on end.  If he needs more, have him PM me, he'll get it after talking to me.  I'd be concerned if I had to "convince" my loved one, maybe you might need someone who really cares.  There is nothing worse than to hurt and no one believes you.  Hope it gets better for ya!
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Re: How to make them understand
« Reply #5 on: Oct 31st, 2006, 12:10am »
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Well dear. If the the lucky sucker hasn't seen you have one of these little wonders of ours. I would bring him to the site, and have him peruse it with you. Or by himself. Your judgement is probably best there.
Please be well  smokin
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Re: How to make them understand
« Reply #6 on: Oct 31st, 2006, 12:32am »
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Have him wander around this site.Tell him to read everything.Maybe then he will understand alittle.But.....the ONLY way for someone to know what its like is to go through it themselves. Wink
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Re: How to make them understand
« Reply #7 on: Oct 31st, 2006, 1:00am »
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come aboard, get yourself educated first!!!  
 
this will help YOU get thru it, then pass the info youve learnt onto him.
 
direct him to this website and read for himself.  
 
Turts
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Re: How to make them understand
« Reply #8 on: Oct 31st, 2006, 1:04am »
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Hi Goof!! YOU can't Make him understand about your clusters!! I am a supporter. I met my hubby in Oct, 04. He told me about his clusters, but I did not understand! We married on Oct, 05.....but his clusters started back around Sept, 05!! Funny thing is....we married Oct 2, 05...and DAYUM.....within that week, he was full blown!!! We went to a dr that put him on topomax...and thank goodness, after a few weeks, he was "back to normal"!! Until that period, where his clusters came back, I had NO idea what they consisted of!! All I know is....this MAN that I loved and cared so much about, was not letting me go near him.....but he felt safer, just by me being here! We had more episodes this year, than last year! Your "guy" will just have to accept you, AND your clusters"!!  Ray has been in another room, having an attack......with me in another room.......he is crying, talking to the demon.........talking to God......and I am sitting in another room.......doing the same thing he is, only I don't feel the "pain" he feels!! BUT, I suffer with him!! It is hard to be a supporter.......
I hope you have a Stong Man with You!! If he loves you.....he will do as us supporters do....
We find sites like www.clusterheadaches.com to help understand what goes on with sufferers! This site is a blessing to me, being a supporter of a sufferer! As others have said, get him to come to this site!! This is the best way to learn how others deal with this situation!! Hugs and Love, Robin
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Re: How to make them understand
« Reply #9 on: Nov 7th, 2006, 6:51am »
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This site and you guys are...I don't have words!
 
Okay, I'm post crazy right now because I've been having a relatively PF day...just a few shadows...
 
I got the colleague letter and posted it to friends (who are actual, real-life friends before the site) on MySpace.  Response was overwhelming from people who just really didn't understand why I disappear, why I don't return calls, (as a poet) why I haven't been performing and turning stuff down, why why why.  This letter articulated what I needed to say, and in a way made ME feel that this was some kind of "proof".  It's hard when there aren't CH sufferers in every other family or neighborhood.   People really, really don't know.
 
Thanks again for all of this info!
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Re: How to make them understand
« Reply #10 on: Nov 7th, 2006, 8:00am »
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Quote:
Here is a letter originally written by Simon Bower, a member of OUCH UK
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goof1031
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Re: How to make them understand
« Reply #11 on: Nov 7th, 2006, 2:51pm »
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To All of you who responded to my concern.  Thank you!!!! I did print out the OUCH Info and he does have more of an understanding of what I am going thru. He is sincere and loving and helpful during an attack. he also knows to stay on the opposite side of the door. Smiley.
I have heard about drinking Red Bull a bit before the hour of the CH. I have tried it and combined it with a Midrin and have found it helpful. Just a little FYI for all of you Just Like ME!! Smiley
 
Goof
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Re: How to make them understand
« Reply #12 on: Nov 13th, 2006, 3:31pm »
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i try to get my wife to understand what i go through i think she understands a little.... sometimes she tries to help...........
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Re: How to make them understand
« Reply #13 on: Nov 13th, 2006, 3:36pm »
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Dave get your wife to come along to this site, we'll help explain it and we can also help her because trust me, seeing someone you love going through this pain and being helpless to stop it for them is an unendurable pain in itself.
 
As a mtter of fact this Wednesday 15th november is our first ever Supporter Appreciation Day when we can recognise all our supporters do for us to help us through this, to be able to pay back a little of what they give us.
 
http://www.ouch-us.org/suptapprday.htm
 
Go and have a look and a read and leave a message for your wife. Bring her here and let us chat to her, I promise there will be as much help for her as there is for you - always.
 
Helen
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Re: How to make them understand
« Reply #14 on: Nov 13th, 2006, 4:55pm »
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When somebody doesn't understand what I'm telling them, I hold their head under water until they agree to understand completely.
 
That usually learns 'em real good.
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Re: How to make them understand
« Reply #15 on: Nov 14th, 2006, 8:32am »
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hellen. i dont think she would be interested in this site......
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Re: How to make them understand
« Reply #16 on: Nov 14th, 2006, 8:36am »
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brewcrew............ do you play bass ??
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LeLimey
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Re: How to make them understand
« Reply #17 on: Nov 14th, 2006, 8:38am »
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Thats okay Dave, its not for everyone, I can understand that. The link to Simon's letter for colleagues, friends and families might help if you print that off to show her. Talk to her about it! I know it's a horrible subject but you'll probably find she is as upset and frightened of it as we all are. Its a tough road being a supporter as well as a sufferer  Undecided
how are you doing today?
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Re: How to make them understand
« Reply #18 on: Nov 14th, 2006, 8:49am »
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last night i told her about this great web site i found where i could talk to others about what i go through..... she seemed to loose inserest quickly..... i doubt she remembers the conversation....... i checked out the kip scale.... today i am a 3 to 4 .... friday driving home was a 11 it was like getting shot i couldnt see. thought i would pass out ......
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Re: How to make them understand
« Reply #19 on: Nov 19th, 2006, 4:16am »
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on Nov 14th, 2006, 8:49am, dave..... wrote:
last night i told her about this great web site i found where i could talk to others about what i go through..... she seemed to loose inserest quickly..... i doubt she remembers the conversation.......

 
Lost her interest quick?! Did you keep your attacks a secret for her or has she seen them?  
 
I cannot emagine for a sufferer to have to deal with this kind of baggitalisation comming from a partner! OK the rest of the world might think its just another "headache" and assume you rather not go to that b/d party and secretly think in their mind "Ah what a wuss" but if your partner doesnt understand (or even try to understand) then where do you turn?
 
I'd like to take her firmly by her shoulders and shake her about; Open your eyes and help this man!
 
I'm glad that you too, found this site, I am just a supporter but finally having contact with people who know what we are dealing with really gives it al perspective. You are not alone!
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Re: How to make them understand
« Reply #20 on: Nov 19th, 2006, 5:14am »
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Supporting is one tough job. Personally I've decided not to waste any time in trying to make those friends who do not understand to get it, because the chances are that they never will. After all, it took my mother 4 years to understand it and she's seen me hit many, many times. Then again my best supporter, my boyfriend, has been in my life almost a year and he's been nothing but understanding and supportive all along. Go figure, eh?
 
I wish that there would be some special way to turn loved ones in to supportive, understanding loved ones. But there really isn't. I've given that same letter for them to read and given links to this site. All the questions they have asked I've answered. I've done my part.
 
Have you told your boyfriend wht kind of support you need? Have you told him that this is just ch you and you'll be the same you he got to know you when you're PF again?
 
PF vibes,
Sanna
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Re: How to make them understand
« Reply #21 on: Nov 20th, 2006, 2:48pm »
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she has seen me go through the attacks many times.... she just dosent understand...... when i first got the attacks years ago she seemed suportive.... but now nothing....
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Re: How to make them understand
« Reply #22 on: Nov 20th, 2006, 2:57pm »
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Do you think she could be afraid of it Dave? Afraid that it's something worse? Afraid of how helpless it makes her feel?  I'm sorry you're having such a tough time with it all
Helen
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Re: How to make them understand
« Reply #23 on: Nov 20th, 2006, 3:14pm »
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i dont think she is afraid of it..... she knows she is not helpless........ i just dont think she cares
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Re: How to make them understand
« Reply #24 on: Nov 20th, 2006, 3:22pm »
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i have a long drive home after work.... over a hour.. if i call her and tell her i have a bad headache and i am coming home and could she please wait at home till i get there in case i need help..... she says you will be fine and goes out with her friends
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