Hi Sweetie,
I'm married to Blake,  a CH sufferer.  We've fought the battle for years.

It's hard but not impossible.  You all are in a tough spot right now but I'm glad you've found us.  There is a multitude of support here for you and you hubby, Coleman.

My best advice for now is for you both to study and learn all you can.  Knowledge is power.  The more you know the better your coping skills will be.

I will be happy to help your husband.  I would also suggest that he come here and post so that we all can help him.  

If you would PM me your phone number, I'll be more than happy to talk with him.  Sometimes just knowing there is someone who understands is comfort in itself.  The same as when you are a sufferer.

I'm sorry about your friend abandoning you.  Perhaps if you would educate them a bit they might understand.  If not, you have friends here that will help hold you all up through this.

Keep talking to us and ask Hubby to talk to us too.  Remember....we're here to help.

Hang in there, Sweetie.....it really is manageable and you all can still have a life in spite of CH.

Jackie

You just keep bringing on the smiles and suprises!!   (where's that spell check any way?)
p

I'm with Karl on this one.  PM me if you'd like--I'll send you my phone number. 

As for fishing in cda, I've done a little fishing on Hayden Lake for pike and bass.  Some nice pike in there.

Best,

George

I, too, encourage Cole to post here - and to read and learn as much as possible!

I've had to watch Gary suffer chronic CH since March of 2006 (nothing compared to many people on these boards).  The difference, I think, is that Gary also has complications (so far still unexplained), and he has not had a pain free minute since sometime in early 2007.  Unless you include sleep: which, if he's lucky, he gets a little over 2 hours any given night (though it's usually sleepless for 3 - 4 nights than a nice stint of 3 - 4 hours some afternoon/evening/early morning).  No one should suffer like this, and sometimes I cannot bear the "guilt" of his pain as he cries to the universe to release him from this suffering.

I have felt VERY empowered having knowledge.  I feel like I'm doing something for him by learning about it and sharing new ideas that we learn about here with him.  I know I'm helping him by getting myself support (and therapy), because being emotionally stable is about the best gift I can give him.

BTW, we've started telling people he has a brain disease - and if they ask more, we tell them a dysfunction of his hypothalamus.  It's the truth, and it doesn't result in stupid responses because they're reacting to the word "headache."  I won't even call them headaches on this board - I always refer to them as attacks.  I think one of the worst things that has happened to people with CH is to have this AFFLICTION labeled as a "headache."  Too many people just can't see past that word and simply have no idea what "CH" suffering is - and calling it "cluster headaches" doesn't help them understand.

Hope to see Coleman here!!!!!!!!!!!!!!!!!!!!!!!!!

Laurie

coleman is shy, but is making some conections thanks to all of your responses.  He and I both are learning at the speed of lightening about ch and ourselves. I love reading all of your stories and knowing that I am not alone.  Coleman is working so hard to find me o2, I know I will have it soon.   p

Patty,

One thing I've worked on with my wife (I'm the sufferer) is the "graceful exit" from social situations, and for my friends, tried  to bring them enough up to speed to understand a bit about it, enough so that many of them now know that when I say, "I got a little 'bad brain' coming on", they know. I try to smile to them through the tears so they know why I'm leaving.

It's loosened them up and, wierdly, brought just a tinge of humor to the situation. It wasn't always this way as I used to avoid doing anything while in cycle. Now, it's easier (not easy, but easier).
And, if I recover quickly after an injection, I re-enter and smile and I know they get it when they say, "dude, that was f'ed up, you feel better?"

It ain't perfect but its better.

Scott

Hi Patty and Coleman -

My name is Christy and I've been supporting Guiseppi for longer than we've known about CH. I agree that it's very painful to watch our sufferers. I'd be willing to share experiences. Am on the west coast but travel all over.

Best of luck.

That video had a HUGE impact on me when I was first learning about my boyfriend's CH. I can't even put into words what went through my head. I showed it to every one of my friends and family.

In a year my boyfriend went from no one but his Mom and Dad as support, to my entire family, and all my close friends all thanks to that video and this site. Information is power, but that video is ammunition.

I have had a few acquaintances (ex co workers and such) that seemed shocked that I would "Willingly suffer through a relationship with someone like that" My response was to ask them if their significant other was to be permanently injured somehow in a car wreck would you love them any less? I was never disappointed in the back peddling they did when you show someone their own hypocrisy.

Hugs to you both, and wishes for understanding and loving friends to come your way! Oh wait we already are, LoL. Oh well HUGS anyways!

Minxy

Hi Patty,

Nice to see you back.  Hoping things are well with you and yours.

Love to you,
Jackie

Welcome back!

Laurie