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angelmouse75
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World's Worst Wife?
« on: May 1st, 2008, 3:08pm »
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Hi, I'm new to this site and before last week had never even heard of cluster headaches. My partner, Jamie has had sinus problems for years and had a septoplasty some time ago. We've assumed for a while that the pain he has been suffering from was related to that but over the past month the headaches have become more frequent and are accompanied by the tearing red eye and drooping lid. Luckily Jamie used to work in neurology and had some contacts; they suggested cluster headaches and we had the diagnosis confirmed this morning.  
I feel awful, I've been so impatient with him - because he's studying part-time at Uni, I'm the one who gets up at 5am to go to work (I'm a secondary school teacher) and then comes home at 6pm to do sometimes 4 or 5 hours of marking. Plus we have two young children and while he's been in bed with his headaches I've been the one looking after them while trying to do the marking, lesson planning and the general household chores that he hasn't been able to do. I feel so guilty for having been so rotten to him and tutting every time he told me had a headache. He's going back to the surgery tomorrow so they can show him how to give himself the sub-cut injections. I'm just a mixture of feelings; guilt, remorse, uncertainty (what can I expect our lives to be like with this condition?) and fear (how can I be a really supportive partner when I feel so tired and overworked all the time?) HELP!
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Re: World's Worst Wife?
« Reply #1 on: May 1st, 2008, 4:07pm »
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If he can lie in bed then he might not have clusters.
 Watch this video.
http://www.youtube.com/watch?v=LAf_QFmTPkw
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Re: World's Worst Wife?
« Reply #2 on: May 1st, 2008, 5:33pm »
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Everyone handles pain differently, and for the first year or so, Gary would get up, pace around, bang his head on the wall or floor - and now he just lies down.  He may jump up every once in a while - but he'll usually just turn around, kneel down and bang his head on the mattress - then climb back into bed and hold his head, groan, and sweat his guts out.  So just because he lies down during the events doesn't mean (to me) that he doesn't have clusters.
 
To help me, we stopped calling them headaches, because that so belittles what they are.  We call them attacks.  My husband has been experiencing "a-typical, non-responsive to drug therapy chronic cluster headaches" for over two years.  Before that the attacks were not organized and apparently triggered by something, because there were no defined cycles (that we identified).  He had problems with his sinuses - had a rhinoscopy, had teeth pulled - and nothing helped.  Tested for allergies - he's allergic to nothing.
 
He's been getting usually 8 - 10 attacks a day, many of them during the day.  I don't know if you've read any of the links on the left-hand side of the page, but his baseline all day, all the time pain level is a K2 - K4, and the daily attacks take him up to a K5 - K8 or 9, and about every month or so a K10.
 
He is the Chief Investment Officer of a research boutique, and we're business partners and I'm a Sr. Equity Analyst.  Thank god we can work primarily from home.  But for I'm not sure how long, he's able to put in only about 2 - 4 hours of work a day.  He's pretty much stepped down as CIO, because after fighting with the beast all day and night, the only sleep he gets are in 20 - 40 minute stints, hopefully 3 - 4 times a night - but when he does get sleep, it's typically around 7:00am to 10:00am, the most important hours in our line of work.  But I let him sleep.
 
I've tried to pick up as much of the slack as I can.  But a few weeks ago we made the decision to move out of the house into a MUCH smaller place - because I cannot take care of him, the house, the 11 acres, do my work, do some of his work and take care of our pets.  We do have a daughter we adopted - in a really weird way, I'm thankful she turned out to be a juvenile onset schizophrenic, because she now lives in a community for adult schizos, and I just have to worry about getting us up there to visit her every couple of months (we're in NJ and she's in VT).
 
I'm thinking, however, that this is a worst-case scenario.
 
If you have family that can help or if you can afford a housekeeper, I'd consider those options.  
 
Setting aside Sunday for cooking and freezing food for dinner for each night of the week really helps me.
 
He is always sleep deprived.  He is often so nasty - and so does not mean to, and I know that.  I had a headache for a week once, and I was going out of my mind.  And it was just a headache.
 
So I just constantly remind myself that whenever he's upset IT ISN'T ME.  He's frustrated.  He's tired.  He's fighting a beast that I cannot imagine all the time.  I NEVER argue back (anymore).  I don't defend myself - even though he's being unreasonable, where I would never have put up with that in the past.  But he ALWAYS apologizes later, and that makes it all worth it for me.
 
I'm lucky, because he tells me every day how much he loves me, how much he appreciates me, and how sorry he is that life has become like this for us.  
 
But we do this because we sat down - when he wasn't having an attack - and talked about how best to deal with it.  I can see him suffering - but he can't see me suffering.  What would he do if the tables were turned?  How would he feel if he could do NOTHING about it, couldn't help, couldn't take my pain away - and then have to deal with someone pretty bitchy a lot of the time?
 
I write cute or loving notes for him on the shower wall with those markers made for it, and he does the same.  We both make a real point to do nice things for each other and to tell each other how much we love each other - because this is what keeps him alive.  They are called "suicide headaches," and I understand why after watching him suffer like this for so long.
 
There are people here that have been chronic for 10, 20 and 30 years.  And it takes effort to keep going - and it's the people like us that make it worth it.
 
He no longer wakes me up at night to help him get the 02 mask on or whatever.  I used to wake up during his nighttime attacks.  I don't anymore.  I got so run-down.  And we both realized that through all of this, the most important thing I can do for both of us is to get as much sleep as I can.  
 
So I don't know how with what you have going on in your life you can work that.   But if he's not getting attacks in the mornings, maybe he takes care of the kids on Saturday and Sunday mornings so you can sleep in.
 
But you two need to sit down and talk rationally about it, because if you don't figure a way to make adjustments, it can get the better of you.  And while it may mean adjusting your schedules and responsibilities, talking about how to manage it is the only way to get there.
 
But one thing for sure?  I try never to let my anger or frustration get the better of me or to ever take it out on him, even if he takes it out on me.  I understand that though at times his anger is directed at me, it isn't because of me, so I don't take it personally.  I know that because he is constantly in pain and completely sleep-deprived, I need to take care of myself, and we both work to make sure I get enough sleep.
 
And I spent a LOT of time here - learning as much as I could about cluster headaches.  The neuros often know very little, and it's often up to us to work to find solutions on our own, because each clusterhead is so different.  And even for many clusterheads - what worked in one cycle (if they're episodic) doesn't work in the next!  Talk about hell.  
 
Margi gave me great advice when I first turned up here.
 
Never let them see you cry.
 
You can stock the arsenal (learn as much as you can about them, know the treatment options) - but it's up to your clusterhead to choose the ammo.
 
Don't talk to him or ask him questions when he's having an attack.    
 
I add - this is something you MUST discuss with him when he's not having one.  Gary likes me to get a cold cloth, and he likes me to massage his neck or push on that little spot between his eye and nose - and sometimes he just wants to squeeze my hand.  But we've got it worked out so I don't have to ask what he wants once the attack is on - because he really can't speak during it.  Other clusterheads prefer to be left completely alone.
 
There are also family services support available at http://www.ouch-us.org.  Having dealt with so many people like us, I'm sure they can be of help.
 
But we're here for help, support, and information.  But the biggest part is going to be you two communicating with each other about your needs.  
 
Hoping your partner isn't chronic and responds to treatment.
 
My best,
 
Laurie
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Re: World's Worst Wife?
« Reply #3 on: May 2nd, 2008, 1:24am »
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Laurie,
those were beautiful, honest, words of support.
 
as the wife of a sufferer,  i can relate to everything you said.  
 
my hubby is in one of his worse cycles ever, (28 years episodic) but even still that's not to the level you two are dealing with.
 
we've only been together 4 years,  so he's dealt with this alot longer than me.  
 
the helplessness is the hardest part.
 
i find what helps me the most is to search and find any info i can and just pass it on to him and we keep trying stuff to see if something might help.
 
our big find this week was TAURINE supplements.  but like you said,  not everything works for every body, and something that works one cycle, may not work the next cycle (as we have experienced with mushrooms working sometimes and not others)
 
but from DAY 1 of adding 1000 mg of Traurine (that we got for $9 at the health food store) with every meal,  the headaches are almost GONE.  went from 5 a day to 2,  from 2 to 1 and the last 3 days NONE.
 
i have no idea if this will help either of you,  but you never know,  give it a try.  
 
if not,  keep on loving and supporting and doing the best you can.  that's all you can do.  
 
try to find something you enjoy to get away for a bit when you can.  I play poker.
 
hugs and support to both of you.
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Angie
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Re: World's Worst Wife?
« Reply #4 on: May 2nd, 2008, 8:29am »
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angelmouse75
 
Thank you for being a supporter. Please do not feel awful. Now that he has been diagnosed read everything for knowledge is power.
 
I also call Barry's headaches attacks, that describes how I feel when he gets one.
 
Be there for him and now you know what he has and that will help you deal with it, plus this is a great family and you will get a lot of help here.
 
All the best
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Re: World's Worst Wife?
« Reply #5 on: May 2nd, 2008, 9:03am »
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Wow ... you ladies are the best. Laurie, your post got me teary eyed, hon.
 
Being a working Mom and a sufferer ... I feel I can exert a little tough love here. Angelmouse, even if it's possible for your hubby to lie down during an attack (which is quite rare, and almost impossible during a high level attack), they normally only last an hour or two. There really isn't any reason he can't function in between attacks.
 
Of course, that's different during those cycles when we get back to back attacks and haven't slept for weeks (or months) but really, most of us can figure out ways to function. Gary is a chronic with other issues, which make it quite difficult for him to function normally, but most of us can.
 
It's possible your partner has been misdiagnosed, has more than one issue, or (and I hate to say this without knowing more) has become quite comfortable having an excuse to do little or nothing around the house.  
 
My advice to you is to stop trying to do it all. Take some time for you. The world will not end if the dishes don't get done, or the floors don't get washed.  
Keep the children fed and clean, take a nice candlelight bath and relax, and get some joy back into your life.
 
hugs, nani
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Re: World's Worst Wife?
« Reply #6 on: May 2nd, 2008, 12:36pm »
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angelmouse.
 
Oh, Sweetie....you're not a bad wife.  You all are just doing 'hard duty' right now.  Please don't blame yourself.
 
Supporting someone you love so dearly can be heart breaking.  You feel so worthless, helpless and guilty.....I went through all those emotiohs when Blake (my hubby) was suffering so terribly.
 
You can't control the attacks or stop them.  But.....you can educate yourself and advocate for him.  Read as much as you can here and on the OUCH site.  There is a ton of information to arm yourself with.  Knowledge is power!
 
It's important to NOT let the beast rule your lives.  Go about your business as normally as possible when he's not under attack.  Encourage him to do the same.  The beast is a mean bastard and will steal your heart, life and mind if you let him.
 
If you and Jamie don't alread have a plan in place then form one.  What does he want you to do when he's under attack or after....cold drink, wet cloth, ice, etc.
It helps to know there is a little something you can do no matter how small.
 
Encourage him all you can.  Make sure he knows it's not his fault and you don't blame him.  Clusterheads sometime suffer from depression so try to keep him as encouraged as you can.  You might have to give him a swift kick in the butt....do it if you have to but don't let him get down or give up.
 
Now......it's VERY important to take care of yourself too.  Take a walk, go shopping, soak in a hot tub, get your hair done, etc.  Remember...a worn our supporter is not much help (pardon the pun... Wink)
 
This is not a pleasant life right now but it does get better....I promise.  Blake and I have fought the battle for going on 20 years.  It's manageable and you can still have a good life.  It takes some work and determination but you CAN do it!!!
 
Good luck, Sweetie and a big hug to you...
Jackie
 
Oh...one more thing, then I'll hush.  Please ask us for help when you need it.  There's always someone around and these clusterheads are smart...
 
Let us know how you all are doing too...updates are good... Smiley
« Last Edit: May 2nd, 2008, 12:44pm by Jackie » IP Logged
angelmouse75
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Re: World's Worst Wife?
« Reply #7 on: May 3rd, 2008, 5:06pm »
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Thanks everyone for such a great outpouring of support. I think we've come to the end of this four week cycle (no attacks for 2 days) and I'm hoping we might even get a couple of weeks remission. Jamie was given his Sumitriptan yesterday but hasn't had to use it yet (touch wood).  
 
I have to clarify one thing on Jamie's behalf though. When i say that he takes himself off to bed, it's not to sleep or lie down, it's just that he can't bear being around me or the kids when he's having one. I have, however, told him all about this site and that I won't be standing for any nonsense or feeling sorry for himself when he's not in a cycle.
 
I love some of your ideas for taking time off, unfortunately going out isn't an option as we have serious financial difficulties and Jamie works weekends so that puts paid to him having the kids either. Hoping though that just a couple of hours on here during the week might be the outlet I need!!
 
Thanks again and love to all xx
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Re: World's Worst Wife?
« Reply #8 on: May 3rd, 2008, 5:31pm »
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Hello Angel
 
I am too a supporter for my husband who has CH so I do understand what a wife goes through when her husband is in cycle.
 
It took me a while to learn how to cope/deal with the whole thing and I admit it wasnt easy.
 
I would like to share with you what I have learnt
 
1- Knowledge is power, educate yourself on the condition as much as possible, read read read, ask questions, talk to the people here. The more you know the more in control you will be, as you will know what to expect and what to do. CH can really be manageable and life does go on.
 
2- Look after yourself first. CH is extremely painful but it doesnt kill. No matter how bad the pain is it will pass. You need to take a step back and let him deal with his condition his way. He will work out how to best deal with it himself. Give him time. In the mean time do what it takes to care for yourself and your children. Taking time out doesnt have to cost money. You can go for a walk, schedule a lunch with a friend, take the kids to the park, go window shopping,etc. You need to have time for yourself to recharge. Dont worry too much about housework, just do the minimum. Make sure you put aside some time each day to have some fun.  
 
3- Time : time heals, time allows lessons to sink in, time allows experience to build, time allows one to get used to things so that one can accept living with CH but still having a life no less. Dont be harsh on yourself and on him right now. The period immediately post diagnosis is the hardest, but it gets easier, trust me. Look at the big picture and the long term goal, dont get hung up on minor things and minor details like how behind you are with the housework. In a year time it doesnt really matter as long as you are all healthy and coping.
 
4- Trust yourself : you are the best supporter there is. He is lucky to have you. Many CHers dont have family around them. Listen to your intuition and base your decisions on the knowledge you will gain from reading this site and you will be doing fantastically.
 
5- Reach out and accept help: talk to the people here, go to chat and chat with everyone whenever you can, send people emails and PMs, everyone here including myself will be more than happy to help you in any way possible. We can be your shoulder to cry on, your source of information and your mental support too. Get your husband to join the Board so that he will get others support for himself, which will take some pressure off you. Stay around and participate as much as you can, the friendships that you will form here will be more amazing than you will ever know. If there are people in your life like family and friends and they can help, get all that you can. In general people are happy to help so do accept with grace.
 
Remember you are not alone.
 
All the best wishes and hugs to you both.
 
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