George, I've taken the liberty of copying your post here about your wife and daughter.  You can send me the copyright bill later, ok?    I just felt it was the best description from a sufferer of how they need to be supported, that I've ever seen.  Thank you SO much - you don't realize it but your post can help a lot of new supporters learn what their sufferer needs.....

"EJ has seen me get hit--more than once.  In our thirty years together, she's seen them evolve from my twice-yearly cycles to the present pattern of once every three years.  She's seen me come to grips with them, learn to resist them, learn to control my reactions, seen me go from helpless floundering, headbanging, and screaming, to my now-nearly-silent struggles with an invisible monster.  It's still a horror show, but one that she's learned not to attend.  She's learned that I need to be alone with them in order to fight them to a draw.

I know that there are terrible nights when I'm deep in cycle when she lies awake all night, wishing there were something she could do--some way to grant me a little peace, a bit of rest, but she knows that there's nothing she can do.  It's my battle, alone.

There are nights, still, when the thing ramps up to unbearable levels, when I'm covered in chill sweat, and my eye pours tears like a fountain, when I go to her--I cannot help it--and tell her that I wish to die.  She usually says nothing, but touches my head to show that she understands, and to remind me that it will end, and that I have much, much to live for.   

....And so do I have a supporter?  Oh yes.  Even if she never reads the board.   

Recently, as some of you know, my daughter has developed an interest in my "condition", and has explored this board.  I welcome her interest, and I'm touched by her empathic reactions to my own private battles, and the battles of others.  I still do not ever want her to see me take an attack.  I have gone to great lengths to ensure that she does not see them, and I will continue to do so.  I believe that she understands my reasoning behind this, and respects it.  So is she a supporter as well?  One of the best, I think--although she's saddled with an immense curiousity and a powerful desire to see and comprehend things, she will let me be, because being alone is what I need, even if it's not what she needs.  And that is remarkably empathetic, I think.

I am very fortunate to have two supporters.  The best of all possible kinds for me.

Best wishes,

George" 

My wife of 25 years, my 22 and 20 year old daughters.....they are what keeps my head on straight through the worst of times. Those of you who met Christy in San Diego know what I mean!

Guiseppi

correction:  I meant "during A hit"...not "during AND hit"...I don't want anyone to think I beat anyone!!!

Exactly Christy.  Though it doesn't seem like it sometimes...because we are scared of having to do a "repeat performance" and that thought alone is too much to bear at times...we really love the hell out of you...continually...and so desperately need you to understand...where would we be without you??  Alone and in pain is where.

So I thankyou from the bottom of my heart for helping "one of us"...   Thoughtfully,  Sherri

Yesterday evening my best supporter (my boyfriend) simply sat next to me while I was getting heavy shadowing and crying.

When the shadows finally faded, he only said: "I wish that your every day would be a good as possible."

I cried again.

He's the first one of my closeones who asks questions about ch and wants to know, learn and share the pain. I'm grateful and blessed.

Sanna

Quote:


You just wrote my wifes story Rolo she does the same thing.Even though she knows there is not much she can do she still offers"I'm sorry babe can I get you something""I'm sorry babe what can I do"ect..........She is the best I don't know what I would do without her


Dave

My wife usually asks, Are you getting another one?  I say yes and she leaves me alone until its over.  I pace mostly in the back of the house, sometimes coming out to where she is for a brief period and she will ask if it is going down yet.  She seems to understand and does give me my space.  We both know it will be over shortly.

Hi Hopeful....Talk to your sufferer about what he wants you to do during an attack.  Get a plan of action before the beast strikes.  Sounds like you're doing the right things.

Does he have 02?

Reassure him that it will get better...make sure he understands that it is not his fault...encourage him to live his life as normally as possible between hits...make sure he eats (I've always felt that is important...they need strenght to endure)....stay calm and strong for him....let him know how important he is and how much you care.

Study all you can about the condition....education is power.  He may not feel up to a lot of reading so it might be up to you.

As far as lasting forever....who knows?  My hubby was chronic for over 15 years.  Now. he's been in remission for over 2.  Each sufferer is so very different.

Hang in there Sweetie......remember this hurts him like all hell but it's not terminal.

We're always around if you need us....just ask.

Hugs and Good Luck,
Jackie

Does he use 02 therapy?  It's the best and cheapest abortive....

Could you go over to the other board "getting to know you" and post about your sufferer.  Ask questions and ask for suggestions.  There is a ton of knowledge on the board and someone just might hit on something that will help....discussion is a good thing.

Jackie

Mybelle wrote on Mar 30^th, 2008 at 3:50pm:


That's a question we all ask ourselves.  Thankfully we live between the hits and don't let this beast rule our world.

It will end eventually.

Contact me anytime you need to vent or talk or just say howdy!

Mybelle

Has he decided to go to the doctor yet.

Without the help from Barry's neuro and this place we call home life would have been unbearable. Thanks to this support group and his doctor we have been able to cope with this.

Hello everyone! I'm glad I found this place. We've felt so alone for so long.
My husband was first diagnosed with clusters back in 2000, I think. We were 23. He went through the ringer for several months, saw a neurologist, had an MRI, yada, yada, yada, but there was no underlying cause, as you all know. He took Imitrex, but it didn't help. It was a joke, and an expensive one at that!
He went into remission that summer, and has been ever since, until a few weeks ago. He just had a brain tumor removed, and if that's not enough to deal with, the clusters came back!
He chugs ice cold water until he can't stand it, eats popsicles like they're going out of style, and suffers silently and alone. I feel so helpless and I want to do more, but reading these posts, I guess refilling his water, fetching his popsicles, and keeping the kids (5 & 1) out of his hair are the best things I can be doing.
We're seeing a neurologist on the 26th, so I'm hoping to get O2 in the house, but not nearly as much as I'm hoping for another 8 year remission!

It's that time of year again and painful to see my partner in agony and scared of what she knows is coming her way.

Appreciate the posts here, any advice on being the best supportive partner welcomed.

Thanks.