Garys_Girl
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Planet Cat, NJ
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Vina,
My heart goes out to both of you - in your own ways, you've each had a really rough time of it!
I'm really proud of Karl for kicking the narcotics. It is really difficult to do - even without the pain. I'm also really proud of you for seeing this through, and for trying to understand what he needs. It isn't easy.
The most frustrating part of being a supporter is that there is actually very little we can do except try to understand.
I think it's quite different for the two of us. I was allowed to be in pain as a child. Gary, on the other hand, was abused as a kid, and was in the army for many years, and had this really macho "walk it off" attitude about pain. He never sought treatment for broken fingers or toes, never went to the ER for his ulcers or for his back problems. He did have to have all the cartiledge removed from one knee after collapsing one night - but he "walked it off," and won't get a new knee despite (numerous) doctors' advice to do so. In fact, he sprained his ankle and had several broken bones in his foot and wouldn't go to the ER. After 3 or 4 days, with his foot looking like a black and blue balloon, he finally said "Maybe I should see a Doctor about this." Ok. He was limping.
So the first time he was screaming and writhing around on the floor in pain, it scared me. A lot. That was in 1999.
The pain did not come regularly. So we thought it was a tooth problem. He did have bad teeth, and got them fixed. The pain continued to visit. So we thought maybe it was his sinuses. He did have an infection, and went for a rhinoscopy. The pain kept coming. Then we thought it was an allergy to wine. But the pain kept coming.
Finally, in early March 2006, it started coming like clockwork. Every day at 4:30, every evening at 7:30, and every night. And Gary was an insomniac to begin with. At least we were finally able to have it properly diagnosed.
The difference is - when Gary was on the floor screaming in pain, I KNEW it was pain. Pain that would send any other normal human being to the ER. The man was walking around with shrapnel in his leg, no cartiledge in his knee, a bad back, a broken foot and a very badly sprained ankle - and that hardly phased him. So this was BAD.
And I started searching. And thankfully found this site.
...and I learned that the pain of a cluster headache is the most intense pain a human can experience. That women who have it believe it to be more painful than childbirth. That there is no real "treatment" for it per se. There are guesses, and things that doctors have found that for some people prevent some of the pain from coming for some of the people sometimes - and some things they've found that sometimes stop the pain once it's there for some people. But there is nothing that works all the time for all the people. And preventing the pain from coming is much more difficult that stopping the pain once it's hit - and the most effective things for either work for just 70% of the people. ....And that something that worked for someone in their last cycle might not work this next cycle.
My god - I had just a regular headache for two weeks and that was enough to drive me nuts. I kept saying to myself - multiply this by 1000, and MAYBE that's what my husband is experiencing. Because according to the people who study these things, the pain of a cluster headache is 100x worse than the pain of a migraine.
It's really beyond my comprehension.
So. My husband has to live with devastating pain. The hits are no longer regular - so he has to live not knowing when the pain is going to strike. He can't get much sleep because of the pain and the attacks, thus he lives in a constantly sleep deprived state. So he has to live with a lot of pain - unbearable pain - a constant state of fear and/or anxiety, and with very little - at times no - sleep.
I'm amazed HE's not a "bitch on wheels" so to speak!!!!!!!!!! Of course he's not always himself. And he can definitely be mean - when he doesn't mean to. I remind myself that it isn't me. It's the beast, not my husband. He does go to extraordinary lengths to let me know how much he appreciates my support and my help through all of this, and that makes it easier for me.
But it isn't always a bed of roses, to say the least. I know you don't expect that. The key, for us, was talking things through when he wasn't getting a hit. I asked Gary to put himself in my shoes - what would he do, what would he feel - if I were screaming on the floor, thrashing around in pain 4 - 10 times a day, often for hours? He'd want to do SOMETHING.
Gary doesn't like to be alone during the hits. Many cluster heads do. We talked out signals - and now I know when he wants me to get a cold cloth, or hold his hand or foot - or him. Or just be there next to him. I keep an eye on the 02 tanks - make sure we don't run out, change the regulator to the active tank so it's ready to go.
But being a good supporter isn't just about understanding what your clusterhead is going through and figuring out how to be there for him. It's also about understanding what you need - and making sure you get it. Lots of sleep. A night out with the girls. A bubble bath. Going out for a ride. Whatever your thing is. Being happy, upbeat, and emotionally stable is probably the best gift we can give to our cluster sufferer. And if you're unhappy with him - it doesn't work. So communication is really important.
And it seems like you two are well on your way! You are both to be commended for your hard work in helping each other.
But please - feel free to post. Feel free to ask. Feel free to rant here when you need to - it helps.
My best wishes to you both,
Laurie
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