Greetings everyone.

First off, I want to thank all the people of this site for the wealth of knowledge that it has provided both me and my husband.  He found this site a little over a week ago, and it has changed our lives.

My husband has suffered from this beastly problem for over 10 years now.  We recently received an official diagnosis a little over a month ago.

A little background:  My husband (he's introduced himself as Aubanbird) and I have been married for almost 3 years now.  When we were dating, he warned me that he suffered from severe headaches, but did not elaborate.  It has taken him most of the time we've been married to work up the courage to tell me the truth concerning these "severe headaches."  Having seen him deal with several kip 6-7's, I have to say that I am VERY proud of his courage to step forward and include me in his private world as a CH sufferer.  We are starting the long road towards a working preventive and abortive medication regime with his neurologist.

I know that there is nothing I can do during an attack, and very little I can do before/after one.  But it has been hard dealing with this alone; I really did begin to think that I was the only spouse out there that was going through this.  On this site, I have learned I was very very wrong!  It has been a tremendous help mentally and emotionally knowing that I am not alone and that if I ever needed the support, there are people here who can understand EXACTLY where I'm coming from.

I think the biggest thing I've had to face is the explanation to friends and family.  His and my family seem to believe if he just slept a little bit more, or cut out the coffee/energy drinks, he'd be fine and these monster headaches would leave him alone. (if only!)

To say the road thus far has been easy is laughable.  There were times, before I knew what was going on, that I would swear I had married Mr. Jekyll/Mr. Hyde!  One minute he was sweet, and the next, he was nearly raging at what seemed like silly things.  I have since learned that this is how he deals with his low kip level hits...focus on something other than the pain.  As a mother of one and Auban's wife, it is hard on me to not be able to "fix" this problem, this pain that he is having.  But I'm slowly learning, through conversations with him, that there are a TON of ways I can actually help him.  Like, when he heads to the bedroom, making sure the essentials are all there for him within reach (the red bull or starbucks, the ice packs, and the cd player blasting his favorite bands).  After wards, I tend to baby him, with letting him rest off the after effects, keeping our daughter quiet, and a quick "I love you."  It has been interesting learning the public way to support him during a hit.  Thankfully, most times we are out, he can sign that he about to have a hit without alerting people, and I can get him to a private area before the beast decides its time for another dance round.

I apologize for the length of this post, but I thought that maybe with a little info, ya'll could help me out, later down the road, when I'm pulling my hair out in frustration.

Thanks again, and I look forward to helping support others out there, as I'm sure they will help me.

Sincerely,

Akina, mate to Aubanbird

Welcome Akina! I'm glad you reached out to us on the Supporters board. Your description sounds like a story I've told too. When my husband starts his prevent regime it includes a steriod taper to lithium. Sometimes this makes him feel really obnoxious and then his personality takes on some of that (not alot, but some). It's so noticeable because the rest of the time he's such a nice lovable guy!

Sounds like you're getting your hubby what he needs. I always add an ice pack too. I have one of those bags that you throw in the freezer. It's covered neoprine or something so it doesn't "hurt" to hold the cold. I just set it by him, sometimes he uses it, sometimes not.  I make sure we always have extra O2 tanks and when we're out I usually have his imitrex in my purse.

Look forward to getting to know you both. We'll all be gathering in Nashville, TN in July - any chance you can join us? Check out the info at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or when you get a chance.

Christy

Welcome to the family.
Supporting is not always easy but after reading your post you'll do just fine.

Hang in there, Sweetie...don't forget there is safety in numbers and we're always here to help.

Jackie
(wife of Blake....cluster head)

im so glad you decided to hop on the forum!  to everyone out there,  this is one of the toughest women you will ever find.  a military spouse and a clusterhead supporter... and a mother... does it get any worse than that?
dont know where i would be without her.

Quote:

I'm sure you meant, "does it get any better than that?"

(Take it from someone who's been happily married for almost 29 years.)

AubanBird wrote on May 11^th, 2011 at 3:56pm:

People that have never felt the pain of a CH attack can't imagine the severe pain we endure, it's physical not mental.

I've had CH for 23 yrs and I still can't imagine the pain, but I know what it feels like, and I am not faking it.

I give them a break and don't talk about it unless asked, or if they happen to see one, I apologize.

Don

So Akina sounds like you're on a good role supporting your man. And you mentioned what you do when he's getting hit. Does he have any "prevent" strategy while on cycle?  My husband starts a prednisone taper, while ramping up lithium (getting blood tests done on the way to ensure against toxicity). The lithium helps block some of the CH's, of course the trick is knowing when to taper off. He's also been using Batch's PH balancing ideas with the supplements and fresh lemonade. His new neuro worked with him on the coming off lithium after he'd been ch free for a month (I think). We had to make this chart of what dosages each day for the lithium in the taper, which lasted 4-5 weeks I think. It worked, when he came off totally he didn't get hit again.

It sure helps us to continue to live life while on cycle. We keep the O2 with us and I generally have an imitrex shot in my purse if needed.

In fact, Joe is just finishing a cross-country bicycle ride. He left in March and is just now into Florida, finishing Monday. Fortunately he is off-cycle but he was prepared with all his meds, supplements and imitrex. At worst I would have had to arrange for o2 and send his regulator. Fortunately we didn't have to do that. (Although I know we had plenty of ch buddies along the way that would have helped if needed).

Ok, I will bow down to the wonderfulness that is Batch.  His PF regime of Vitamin D3 and fish oil has DRAMATICALLY improved Bird's condition.  Bird has been taking it for about a week now, and I must say I am COMPLETELY amazed at it.  He went from having over 7 hits a day, everyday, to down to just 2 during the first couple of days.  Then today, he's been PF all day! (*knocks on wood for added luck*)

Not only has he cleaned up the house, done the dishes, taken care of all the animals, and done some laundry, he even *gasp* endured shopping with me!  That was the biggest thing for me, since he really doesn't like being out in public in the off chance he'll have a hit.

When Bird has to go overseas for his time in the sandboxes, this is one thing I will NOT let him run out of!  Thank you Batch, may God continue to bless you as you bless other CH sufferers!

Akina wrote on May 14^th, 2011 at 9:49pm:


Going shopping? Hmm, that sounds like a seriously dangerous side effect!!!

Being serious, that's great news.

Fantastic news Akina...I'm doin' the happy dance for ya'll.

Sounds like things are going well for you guys.  I'm glad that you found a great neuro right away. 

Glad to hear Batch's deal is working out for Auban.  I'm going to have my hubby start on it as well.  So many seem to be having success with it.

Sorry the BFF is giving him a hard time.  You guys know what you're dealing with is very real, so try not to let it bother you.  We've all been through that with people and it sucks, but it is what it is.  Like Linda said earlier in this thread....resist the urge to bitch slap them.