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        Cluster Headache Help and Support >> Cluster Headache Specific >> How to make them understand
        
(Message started by: goof1031 on Oct 30^th, 2006, 4:33pm)

Title: How to make them understand
Post by goof1031 on Oct 30^th, 2006, 4:33pm

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!!!!!

Title: Re: How to make them understand
Post by chewy on Oct 30^th, 2006, 4:36pm

This should help.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Title: Re: How to make them understand
Post by JeffB on Oct 30^th, 2006, 5:47pm

Take a baseball bat to the side of his head over and over.

Title: Re: How to make them understand
Post by georgej on Oct 30^th, 2006, 11:17pm

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

Title: Re: How to make them understand
Post by clusterwife on Oct 30^th, 2006, 11:25pm

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!

Title: Re: How to make them understand
Post by Kirk on Oct 31^st, 2006, 12:10am

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 [smiley=smokin.gif]

Title: Re: How to make them understand
Post by wam on Oct 31^st, 2006, 12:32am

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. ;)

Title: Re: How to make them understand
Post by Turts on Oct 31^st, 2006, 1:00am

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

Title: Re: How to make them understand
Post by ti_beach on Oct 31^st, 2006, 1:04am

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

Title: Re: How to make them understand
Post by Asia on Nov 7^th, 2006, 6:51am

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!

Title: Re: How to make them understand
Post by chewy on Nov 7^th, 2006, 8:00am

Quote:

Here is a letter originally written by Simon Bower, a member of OUCH UK

Title: Re: How to make them understand
Post by goof1031 on Nov 7^th, 2006, 2:51pm

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. :-).
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!! :-)

Goof

Title: Re: How to make them understand
Post by dave..... on Nov 13^th, 2006, 3:31pm

i try to get my wife to understand what i go through i think she understands a little.... sometimes she tries to help...........

Title: Re: How to make them understand
Post by LeLimey on Nov 13^th, 2006, 3:36pm

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

Title: Re: How to make them understand
Post by brewcrew on Nov 13^th, 2006, 4:55pm

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.

Title: Re: How to make them understand
Post by dave..... on Nov 14^th, 2006, 8:32am

hellen. i dont think she would be interested in this site......

Title: Re: How to make them understand
Post by dave..... on Nov 14^th, 2006, 8:36am

brewcrew............ do you play bass ??

Title: Re: How to make them understand
Post by LeLimey on Nov 14^th, 2006, 8:38am

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 :-/
how are you doing today?

Title: Re: How to make them understand
Post by dave..... on Nov 14^th, 2006, 8:49am

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 ......

Title: Re: How to make them understand
Post by Daujamara on Nov 19^th, 2006, 4:16am

on 11/14/06 at 08:49:58, dave..... wrote:

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!

Title: Re: How to make them understand
Post by sandie99 on Nov 19^th, 2006, 5:14am

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

Title: Re: How to make them understand
Post by dave..... on Nov 20^th, 2006, 2:48pm

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....

Title: Re: How to make them understand
Post by LeLimey on Nov 20^th, 2006, 2:57pm

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

Title: Re: How to make them understand
Post by dave..... on Nov 20^th, 2006, 3:14pm

i dont think she is afraid of it..... she knows she is not helpless........ i just dont think she cares

Title: Re: How to make them understand
Post by dave..... on Nov 20^th, 2006, 3:22pm

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

Title: Re: How to make them understand
Post by dave..... on Nov 21^st, 2006, 6:16am

last i got hit hard..... 10 on the kip scale.... she was very understanding and supportive.... that helps

Title: Re: How to make them understand
Post by goof1031 on Nov 21^st, 2006, 1:58pm

Sounds to me like you need all the clusterheads here to help you deal with it.
I have only been browsing for a couple weeks and am finding it a safe haven. Stick around and make a few friends!

Goof

Title: Re: How to make them understand
Post by lskilly on Nov 21^st, 2006, 8:04pm

I guess I am very fortunate. My wife trys her best to do anything to help me throught a hit. I feel guilty because she is always in tears even after 18 years of seeing me fight the monster. If I get hit at night I try to sneak out of bed and not wake her so she won't worry. then she finds me in my modified yoga positon trying to beat the monster and says why didnt't I wake her. I know if she could go through it with me she would.

Every day I thank God for being the guy she loves.

Skilly

Title: Re: How to make them understand
Post by Randall_Swain on Nov 22^nd, 2006, 4:03am

Iskilly - I do the same thing - sneak out of bed and then my love is upset that I didn't wake her. She too would go through it with me if she could - I think she feels like she does anyway.

Dave - I REALLY REALLY hope you work it out dude! You need someone who is there for you, but not mothering you, but there for you but not in your way but there when you need her but not fussing but there for you when you scream but then doesn't touch you but there for you....

My god those supporters are a wonderful lot!

Maybe (I don't know) your wife doesn't know WHAT she should do. I know my missus had a bad time working out what was what - and still does. The one thing I have learnt from this site is that I need to sit down and say this is ok, this is not ok and for god's sake don't do that. Maybe you should give that a try?

My thoughts are with you big man! Take care, take drugs, take whatever is necessary!

Title: Re: How to make them understand
Post by dave..... on Nov 22^nd, 2006, 9:26am

randal----- thank you for the good advice.... ill give it a try

Title: Re: How to make them understand
Post by chopmyheadoff on Nov 22^nd, 2006, 9:38am

on 11/20/06 at 15:22:06, dave..... wrote:

and your still with this caring individual because . . . . . ?

Title: Re: How to make them understand
Post by dave..... on Nov 22^nd, 2006, 12:29pm

because she is my wife and i love her

Title: Re: How to make them understand
Post by dave..... on Nov 28^th, 2006, 10:41am

and just when i thought she was starting to understand....................................

Title: Re: How to make them understand
Post by LeLimey on Nov 28^th, 2006, 11:21am

Dave maybe its just not in her to understand.
Maybe she is blocking it out because she can't bear it or maybe and I hope not, there is a less salubrious reason.
Whatever happens, you have us and our support here so it's not all doom and gloom and we WILL support you, help you nd kick your butt when you need it too ;)
This is a family, being a ch'er you're one of us
Helen

Title: Re: How to make them understand
Post by dave..... on Nov 28^th, 2006, 11:24am

thank you sooooooo mutch