I know there isn't much I can do to support my husband. But I don't know what to do. I'm so confused and everytime he has one all I can do is break down and cry. I hate seeing the man I love in that much pain. This is the first yr he has had them with me. Please tell me how I can support my husband during his CH's?

Lisa Kaiser wrote on Apr 7^th, 2011 at 12:04am:


not that it helps MUCH but i feel the same :\

Oh Lisa, you're not alone.  I know it feels like you are, but all the supporters that hang around here are in the same boat.

We've all gone through the isolation, the frustration, the helplessness, and the pain.  It's not the pain of CH, but it's just as valid and real for those of us who can't help our loved one's pain.  Being a mom kinda makes one feel like Superwoman.  I'll kiss a boo-boo, put on a bandage, and all is well in the world again.  Kissing the CH boo-boo doesn't cut it, and it feels like nothing will ever be right in the world again.

I'm Brew's supporter and wife of 29 years (above).  He needs to fight the beast alone, but that doesn't mean abandoned.  I've been there to take the wheel when he's hit while driving, I've been there to drive him to the hospital when he's had a 6 hour intractable fight with the beast.  I've moved the kids out of hearing range, I've brought him full O2 tanks, I've made more pots of coffee than I can recall.  Whatever he wants, he gets when he needs it.

I've educated myself to the gills about abortives, preventatives, treatments, faux-cures, and uninformed doctors.  So much so that neuros have asked me if I'm a healthcare professional!!  No, I'm an artist, and a wife of a CH sufferer who knows that knowledge is POWER.

Read all you can here, ask questions, head over to http:/www.ouch-us.org and clusterbusters.com. Browse all the studies and treatments and whatever you can get your hands on.  Your research can offer your husband the power to shape his own future - despite CH.

The most important advice I ever received and now I repeat it as often as possible, is "LIVE BETWEEN THE HITS."  Life is what happens BETWEEN attacks.  If you or he let CH take over your lives it's nothing but a downward spiral.  Living the mantra of "I can get through the next hour" will serve you well.

CH will not kill him.  And it's the choice of both of you together as to how much it affects your lives together.

Best of luck to you both - we're here when you need us.

Quote:

A different tack: you're not PUTTING her through anything. She CHOOSES to go through it with you. PUTTING her through something implies that you have CHOSEN this path. You have not. It chose you.

By extension, every successful marriage I've ever encountered has a common thread: you both CHOOSE each other every hour of every day. There is nothing forcing either of you to stay. It is a conscious choice by both of you.

Try it sometime - instead of saying "I love you" to your spouse, say "I choose you." You'll be surprised by the reaction.

Hi Lisa....welcome.

Reading this puts tears in my eyes.  I've/we've all been in your shoes at one time....bless your heart.

You've been given some good advice by two gals that are A-1 supporters. 

There is always someone around here to listen and help.  Keeping talking to us and we'll do everything we can for you and your hubby.

I can tell by your posts that you two have what it takes to deal with this.  You love each other...hang on to that and to each other.  You'll be fine.

Jackie

Hi Lisa. 

The ladies have given you wonderful advice.  I do the same things that they do (I learned from them).

If I see my husband high tail it for the bedroom I know what's up.  I grab an energy drink and an ice pack and bring it to him and quietly back out of the room.  If he's in there for a long time I will peek in just to see if he's ok.  If he's still struggling I go get a fresh ice pack and hand it to him and I go back out.

When I first learned about his CH I googling all the time and learning as much as I could.  I go with him to all of his appointments and I annoy the doctors like crazy, but I want to make sure they understand.

I've cried my fair share of tears over the helplessness, I've been frustrated, I've been down right pissed.  Even after the 10 years I've been with my hubby I still go through these emotions, but not nearly as much.

Family indeed. I like alot of this family even more than the ones related, LOL.

Hey Flipperlips - nice to have you back.

Christy

Oh yes, we are family here and we do our best to help and support each other.  You two are related to us now...like it or not

Yes...FlipperGirl,  it's great to have you back.  You've been missed.  Tell the ****bird I said hey.



Modified to add:  Threads like this...well, that's what it's all about and what DJ had in mind years ago.   

Yes you all are right we are family now. (warts and all lol) Tom and I couldn't be happier to have found this site. We are finally on the right track. Tom finally got some O2 even tho his insurance keeps denying it! It's such a relief to get it. Tom feels alot better about it. Thank you all for the support and advise you have given me and Tom. You all are angels to my eyes. Thanks again,

~Lisa~0:)

Hi Lisa, and gang (or is it family?)

I'm not in a relationship at the moment, but am a CH sufferer. So what I find I'm lacking most is a supporter.

When I am in a relationship I worry about the impact my attacks have on the person I care about. I know they find it difficult seeing me in such pain and feeling helpless. But what I miss most is having someone there. Having someone to hold me, especially afterwards when all I want to do is cry, means more to me than I can find the words for. But also, someone to get me water (red bull doesn't help), I usually need two glasses of cold water, and a blanket because my hypothalamus goes berserk after an attack and I end up shivering like crazy.

But the most important thing, and what I miss most is being held and just not being alone. Sometimes that really, really sucks!

So, you may feel helpless, and I totally get that! But trust me, your partner feels 1000 times less helpless with you there.

xx Renée

It helped me so much to read this and all of the replies. My amazing husband has been suffering for over 20 years. I feel so helpless. I do everything I can to support him when he is in so much pain. He has been in this cycle since June 12th and is so hopeless. He has never had a cycle last this long. Nothing about this disease makes any since. No patterns, no definite relief. He and I are both in the medical field, and with everything I have seen in all my years, nothing compares with the suffering I have seen him experience.

Again thank you for the amazing post and all the wonderful replies.

Watching helpless wrote on Sep 18^th, 2011 at 12:25pm:


THIS is the "normal" of being diagnosed with cluster headaches.  It doesn't make sense, it isn't fair, and no cycle will be like the last one.

We learn that the best defense is to be able to roll with the changes.