It's been 4 months since my husband has gone pain free. We've been to almost every Dr. under the sun. He has taken so many different medications he's a walking pharmacy. Now when he finally goes to the Nurologist who actually knows about CH he dosn't want to take some of the meds. He's afraid he's getting too fat from some of them especially a steroid. He dosn't want to take Verapamil because he's scared it will kill him because it's a blood pressure medication. The Dr. tried talking to him and telling him to atleast try it that he can loose weight later that the most important thing right now is to try to stop the pain but he dosn't want to listen. I know it's his decision and he's the one who has to live with the pain and not me. I feel selfish for being mad at him. I can't imagine the pain he's going through. But I lost it today and we got into a heated argument. I'm only human and I can only take so much. After a week of hearing how much he wants to die and wanting to just end his life I couldn't take it anymore. I ended up crying. I never cry I try to be the strong one. I a mtrying to hold our family together through this. Our three year old thinks Daddy is a monster. My MIL who is older is a nervous wreak and dosn't even want to come home because she gets so nervous. She has resulted in taking a mild anti-depressant too. I just got so angry when I heard yet again that he will not take the meds that this Dr. is telling him to take. I felt like he must not want this pain to end. That anyone in their right mind would be doing ANYTHING to stop it. Of course now I have calmed down and I know he dosn't want to be in pain. I still feel mildly frusterated that he will not even TRY something that might help. I feel like I cant help anymore because he dosn't want to be helped. I still love him and no matter what will stand by his side. It's not his fault that he has this. But I also can't help being upset. I don't know how much more our little family can take. I too need to be seen by a Rheumatologist for a pain that is never ending in my arm but am so terrified to leave my house to go. I don't want to leave him alone. But what more can I do?

Hi Betty.

I'm married to a cluster sufferer too so I can relate.  Sounds like you are doing a good job so don't beat yourself up for being a bit angry.  
I've been pissed a couple times myself....especially when he doesn't behave and do what's best for himself (like waiting to long before heading for the 02).

I don't know what the doctor is wanting him to do but he should at least consider it.  As far as steriods go a taper won't put a bunch of weight on him...it shouldn't anyway.  My hubby was on them for months at a time and he never gained much.  The verapamil is one of the best prevent drugs for many sufferers....hubby was on it daily along with a bunch of other drugs for 15 years.

Cluster sufferers can be and sometimes are a bit 'cranky' but that is to be expected....pain, no sleep and sometimes depressed.....however, plain meaness and bad behavior is uncalled for.

Does he come here and talk to other sufferers?  It would be good for him to do so.

Now...you need to take care of yourself too.  You're doing tough duty too.  Take a few minutes for yourself....a walk, good book, bubble bath, etc.

Hang in there...we're here to help.  Let us know if you need us.

Good luck and big hugs...
Jackie

Hi betty, WOW!!!  He is in so much pain he wants to die, but wont take verap because he may gain weight???? WHAT THE HELL?!?!?!?!?!?!?!?! maybe i am in the minority here, and maybe i am WAY out of line, but it sure sounds to me like your husband is the one being selfish. BIG TIME!!! I have had CH for over 20 years and have been consumed with guilt over the time i have lost with my family because of it. My family is just that, a FAMILY, we are NOT four seperate people, we are ONE family. All CH sufferers have their bouts of self pity, and we deserve it, but when there is a family to consider, everything changes. CH is NOT just hurting him, its hurting your ENTIRE family! Personally, if my doc said he could take the pain away but i would gain 200 pounds and grow an exrta arm out of my forehead, I would do it in a heartbeat!!!! not just for me, but for my family!!!!!! So that i COULD be with them, so I wouldnt be a monster. CH is MY issue, I thank GOD daily for giving me a wife who supports and understands, but its MY problem!!!!! The less i can make her and my boys suffer the happier I am!!!!!  Get your husband on this site so he can read and LEARN!!!!! Hang in there betty ,, God bless and good luck.   Tuck

I would LOVE for him to get on here and speak with other suferers but I think it will take some time. He's not to open to talking on message boards as I am.

Anyway, A bit of victory for me, well all of us tonight!  ;D I guess my spurt of temper woke him up! He took the Verapamil tonight.

I actually have to thank you all. I spent some time reading about the success of other sufferers and starting relaying them to him. He finally got it through his thick skull though and that makes me happy! :)
He says he is already feeling a difference in the tension around his neck and shoulder area!!!!!!

Hi Betty,

Have you contacted the Family Services Team at OUCH?  

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If you have not yet done so, you may wish to consider it.  I cannot recommend it highly enough.  The folks there are very experienced at dealing with just these sorts of issues, and may be able to provide you with some helpful suggestions and a listening ear.

P.S.--Jackie, who posted above, is on the team.

All the best,

George

YEAHH, for Verap! Hooray forGeorge, who told you aboutFamily Services............we are here to help you, Betty! Jackie is a   :-*LOT of support FROM Clusterville, however.everyone tries to help!

Please, keep in touch. I you need something, I've pm'd you my cell phone number.

Chin up, no guilt.............and thngs are gonna improve, you'll see!

Cathi  :-*

Yes she has George and I thank you for mentioning us.

In fact she posted here about the same time she contacted me.  The more places the better,  to get some answers, eh?  Oh...and I told her the same thing in regard to getting on that Verapamil.

Oh, and Betty...he doesn't have to post.  It might be that all he needs is to read some of the threads here, listen to others experiences as well as researching what meds DO and DON'T do.

A good ass kicking is all he needed.
Way to go girl. Dont feel bad you did good.
thebb

Make sure he keeps taking the verapamil at the regularly prescribed intervals. It doesn't work like an aspirin on a regular tension headache - that is, in an abortive manner. It is a preventative, and it takes time to reach theraputic levels in the bloodstream. Most say it takes 10-14 days to really start working (for me it's around a week). Stay on him! Be the pharmaceutical bitch from hell if you have to be!

LOL! Brew

I always feel bad after I've cooled my heels. I try to be as understanding as possible. Especially with the CH.

The funny thing is 2 years ago I was researching what his headaches could be and came across this very website. I thought gee that sounds very similar to what he has going on but when bringing it up to his PCP he hadn't heard of it and told hubby he was basically crazy and needed a shrink. I was so upset and wanted hubby to leave that Dr. but he's still there. When he told him about the neurologist he just saw and how he was diagnosed with CH,  the PCP Dr. still has no clue what it is. I plan to print all this info out and bring it in to them. It's about time people started educating themselves!

It's about time people started educating themselves!


yep.



  O.U.C.H is a good place to start.


 
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Oh yeah I'm all over the OUCH website. They are great!