My name is Linda.  My husband is a ch sufferer.  He's been clean for close to three years.  A few days ago I noticed him acting differently, and looking differently.  He insisted that nothing was wrong, so I backed off.  Several days later I took him aside and explained that I knew he was keeping a secret from me, and then he told me that his "dark horse" was back.  My heart sunk.  You see (and many of you KNOW), this isn't a situation that affects only the individual with the ch, it affects the entire family, friends, and work.

Years ago when he had his bad episodies, I would do everything to try to help (rub his back, bring him, ice, try to help him meditate, etc) - I am a nuturing fixer - that's what I do.  I felt incredibly rejected when he would angrily push me away.  Now I get it.  "Getting it" doesn't make it hurt for me any less, however.

So - after his admission of the dark horse, I took the opportunity to make a bedroom for myself in the basement.  I put everything I thought he would possibly need in our bedroom upstairs, talked to the kids, and now just steer clear.  Even when he isn't symptomatic, he doesn't want to talk.  It's like having a stranger in the house until these beasts go away.  I feel awful feeling sorry for myself.  How selfish!  He's the one in pain!  I KNOW that in a few months things should go back to normal.  But I'm afraid...

Any new treatments out there?  We've done the O2, nerve block shots, imitrex, blah blah blah.  I have to help my husband.

The following is a 30+ page thread, but you and your husband need to read it carefully. It will take you several hours. Make the time.

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Squirrel, I hear all of what you say, right there with you.  Being a supporter is its own hell.  You're not alone, and even though your hubby is "unavailable" there is a great group of supporters here for you. 

Thanks for responding.  I know I'll need the support of this group to get us through.  How do people do it alone?

I imagine a lot of supporters bail on the sufferer. 

I guess the rest of us just tough it out with the help of the wonderful people we've found here.  I can say that the friends I have made here are the most loyal and understanding in the world.  They've held me up through a LOT of years with this beast.

Just knowing there's someone out there who goes through the same things we do is enough to keep me going.  I hope I can pay that forward with you and yours.

(Edited to add - I just noticed YOU'RE IN WISCONSIN?  I'm NW of Milwaukee.  If you're nearby, we should get together!! Private message me if you're interested.)

Hey Squirrell - been there done that, we should have our own T-Shirts or record lable or something. If it weren't for people like MosaicWench and others here I'd have lost my mind years ago supporting something with this beast. Dark Horse is a good name for it.

Know that we're here for you too. The thread that Brew pointed out is a good one, been helping LOTS of folks. Not right away mind you, it's gradual. But my hubby started the D3 regimen during his last cycle, and I'd have to check my calendar but I think we're coming or have surpassed the 2 year mark now. Granted he's had a remission that long before, but wouldn't it be nice if this one lasted longer! Oh I hope!

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Not right away mind you, it's gradual.

Not necessarily. It took me over 6 weeks to respond positively, but some folks metabolize vitamin D much faster and have actually gone pain-free after a mere 48 hours.

Hubby would be nuts NOT to try it.

True Brew, I suppose maybe something to do with how deficient your body is and/or like you said, how you metabolize it. At any rate, yes, please read the string and get the supplements for him!

I picked up the supplements that day, and he didn't fight me too much on taking them.  My thought is, what the heck, they can't hurt!

I'm so happy that I found my journal from 2008 where I was writing about the bout we were going through.  I thought I was losing my mind back then.  Thought I was losing my mind now too.  Glad to see that reference from the past as a reminder that this, too, shall pass.

I try to explain to people that my husband isn't the man I married 12 years ago.  He's a totally different man during this time.  He has become very antisocial, which I get.  But why am I turning to antisocial?

Mmmm...nice to talk and know somebody hears.  Thank you.....

Most Doctors know little about CH and treatments. Your husband most likely didn't have a proper CH oxygen setup. Like a NON-rebreather mask with a bag on it and a flow of at least 15LPM.  See the "oxygen info" link below.

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Hang in there,    Don

Thanks Don, the link helps.  But I still feel stuck.  We can get the oxygen prescription, but we can only find less than 10lmg.  I know we can order some type of regulator, but what do we get that we don't need to take the original regulator off and lose the contents of the tank?

Turn the valve on top of the tank to OFF before removing the regulator.

Hey there. I'm a CH sufferer and my gf has seen me go through an attack once and once only. She was very supportive but watching me writhe in pain was hard for her. I said I just need my space and to be alone in case I get angry and push her away from the pain.

I think you just have to try to understand the pain. It's almost like drowning in pain and all you care about is that one breath of air that's going to save you.

You should have him read up on the Vit D3 regime. I've tried it for three days and have become pain free. Good luck to you! Be strong for him! :)

Hi Squirrel - I'm sorry you and your husband are going through this.  As a CH'er and relatively new one at that - this has all been new for my wife and I.  Worse of it is we have our first child at home, and my CH attacks started shortly after she was born.  Its been a rough road.  I wish my wife would come here and try to under this condition like you have.  I know my episodes scare her, and I feel horrible putting her through that.  Thank you for taking action to help your husband.

Has he had any luck with Melatonin to help him sleep at night and energy drinks to shorten or slow attacks during the day? Both have really helped me cope when my attacks were bad. 

Along with the Vit D regiment and my preventive my life has normalized to some extend after 3 months of hell.  I can finally enjoy my wife and child without being afraid of scarring them at the same time. 

Good luck - try to get him to post here - its helpful to know others who share the pain, and I find comfort here often.  Just reading others stories helps me.