Are my seizures well controlled?
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UPDATED: Sat, 07/04/2009 - 12:05am
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grazia...
I'm Afraid My Current Seizure Problems Could Cost My Me My Marriage
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I've been Grand Mal epileptic for 30 years and was really fairly controlled for the majority. When I was married to my 1st husband, he didn't even believe I had Epilepsy because he was never around the 2 times I had seizures, but that was 15 years ago. Now I'm almost 38 and have been remarried for what will be 13 years this month. The last 4 years have been hell on my husband and I give him more praise than anyone can. The worst was a horrendous car accident I was in where I was on the phone with him and he heard the whole thing as I went into a seizure at the wheel and nearly lost my life. I was life-flighted out and needed 5 surgergies. I was lucky be be alive and it scared him to death. He quit his job as a long haul truck driver to be local and take care of me. I now walk like a 60 year-old woman and have pins and screws in me. But he has always been there. Well, over the last few years, my seizures keep getting worse, and now I am dealing with a severe allergic reaction to the meds. I can no longer work outside of the home and I used to bring in a huge paycheck. I had another car accident but it was small because I felt the seizure coming on, so I cannot drive either. He has gone back to long haul driving because of the money, but it keeps him away from home for 3 or 4 weeks at a time. He is miserable and blames my medical problems for all of our bills.....and he's right......that's 100% the reason for all of them! I want to go back to work. I have 16 years management experience, but I'm afraid I'll have a seizure at any moment because I'm not controlled at all. We live in a small town and the unemployment rate here is almost 18%. Half the time he only text messages me and he has quit asking how I'm feeling. I don't know what to do. I have asked SOOOOO much of him for SO many years. I'm afraid I've just asked too much.
By grazia... at Sat, 07/04/2009 - 12:05am | 123 views | 13 comments
Recent Comments on this Discussion
I dont understand how he can blame all this on you and your medical bills.When you marry someone you also marry their problems and faults.He should of known that when he married you.I am sure he has some things you dont like,yet you still married him.My husband stays with me knowing i need medicene and dr's all the time and we dont have money for that.Its called love,If your husband leaves you cause of this then he never loved you and is only thinking of himself.If you ever need someone to talk to or to talk to your husband you can email me at sktl4@yahoo.com,I really hope everything works out for you.Tell your husband to relax and it will all work itself out.
I can understand the frustrations that your husband is having. My daughter has had seizures since she was two days old so I've been dealing with uncontrolled seizures for 25 years. While it has caused many disruptions in our lives, I try and deal with things the best I can. I know that's easier said than done for some family members.
I think you need to express to your neurologist about how your uncontrolled seizures have been so disruptive to your marriage and life. There may be other options such as a switch in another medicaiton or perhaps consideration to surgery. Everyone deserves a quality of life and I hope that your neurologist is a compassionate person to thoroughly re-evaluate your current treatment.
~Karen
Hey I think more than anything you need to find someone that will love you for you and always take care of you no matter what. some people were put on this planet to take care of others and love them unconditiaonlly. My boyfriend has epilepsy and we started dating 7 months ago, the last 5 out of those 7 have been ridiculous, his seizures are anything but controlled but we find our way around them. In the last 5 months, he's been in the hospital twice, had two seizures around me, lost his memery, almost died, among countless other things but i've never once doubted my love for him. I mean, yeah everything gets a lot harder with his epilepsy being the way it is, a lot of things need to be compromised but besides that, we have a really happy and healthy relationship. I've stuck with him through a lot and I continue to plan to do so. Some people can deal with it, others can't. A lot of kids my age could never go through what he and I have togheter. I just turned 18 a few days ago.
Do what makes you happy, do what's best for yourselves. If it's not going to work then fine, it's his loss that he's overlooking your inner beauty and all the things you have to offer, because of yoru epilepsy
What a beautiful person you are! I commend you for standing by him and having such maturity at such a young age. Clearly you were raised well. Kudos to your parents or those who had a hand in molding your heart. My older sister died of cancer at 25 after being diagnosed at 19 and her boyfriend stayed by her. It made her so much stronger. Stay the wonderful person you are. I would be proud to call you mu daughter.
~~~Life is a one lap race. It's not about winning; it's about enjoying the ride.~~~
Thank you, it hasn't been easy but when I feel like giving up I remmeber how much I love him as a person because epilepsy doesn't define Ryan, he does. Everytime it gets tough, I just think about the future and I'm hopeful that this will soon be controlled so we can live a happy life, and he can be siezure freee.
If he's stopped asking you how you feel and he's gone most of the time, then you must be honest with yourself. Well, really, you've got to be honest with him, too.
Are you both really going to be happy staying together if you aren't going to work on the marriage together?
Might as well face up to it with him, lay all your cards out together. Then make a decision.
Get a divorce and be the best of friends if you have to. But if happiness is what neither one of you can have in a marriage, then that's not worth it.
But you both have to face up to what's happening.
And there's also a lot of things that can be read into this post that I'm not going to get into, but are probably also making your life pretty miserable.
If he won't face up to things with you, or avoids setting up a time and place to do it, then it's time to move on.
Pretty ironic that what he does for a living is also what has caused you so many problems.
Anyway, Been there, done that. My first marriage was never happy to start with, though.
peace R.C.
Hi First "disclaimer " I may ramble a bit because of the sz I think? I had at 4 am
Some of what you said and others too sounds familar
I,m 45 and have szs but not nearly the trble you have because of the acidents.
I am divorced and because of meds I can see where at least it was "some" of the reason.
I figure my wife sat through at least 1,ooo g mal szs and now my 11 yr old d.d has been through over 50 alone and never called 911
I worked for over 10 yrs while doing this and even realized I was that sick ? lol oops 'tuff" guy.
ironic that she is now the only person to say I am not that sick to be on ssdi lol
Heck I was approved in less than 90 days oops I may be ill "a little"
I broke a finger last night waaa after reading this I think I,m whining to even feel bad. let alone be ill.
For HIM I big praise is due and I,m sure you that BUT after so much of the stress and just "life" maybe he does,nt ?
If the tables were turned would YOU still be there ?
what does his family think ? are you friends with them .
Is it the money causing the prob. if so pls look around I,m sure you know IT gets worse .
The happiest I,ve ever been was still living paycheck to pay check lol .
do something different for the both of you almost anything "a change" it can be getting somone to to re paint the living room and move the furn around
a suprise for HIM when he comes home send a card to his company so he gets it when he checks in or out .
make a day for HIM .make sure the others he talks to know how you feel so they can talk to HIM
not in a you are whining way but that HE matters kind of way.
make a bbq day for HIM
like a employee of the month thing for him
I fully understand about some of this and have lost several dear friends because they simply could not stand me being sick and burned out every time they saw me. i SAY I,m glad you are still typing anf he is still with you . married always works better because the stress of the divorce can be way to much for good friends ...Rick
Thanks for some GREAT ideas! I get along well with his family and my family praises him like crazy every time they can. They take him out for fancy steak dinners and buy him things he can't afford to buy himself as a way to say "thanks". I would definitely stay with him if the tables were turned. I think the hardest thing I've been dealing with lately is that with Epilepsy, it NEVER goes away. Even if I had Cancer, there is a strong chance of remission or cure after treatment which means you deal with it for a while and then go on with life. I just spent the whole day in the ER today because I'm rejecting my meds and we're on the third one in 6 years. I haven't even called him to tell him I was in the hospital because I just don't want to tell him I was back there for the 2nd time in 3 days. He doesn't deserve all of the stress and financial burden.
~~~Life is a one lap race. It's not about winning; it's about enjoying the ride.~~~
He doesn't deserve all of
the stress and financial burden.
You seem to be answering your own question here. Or, do you have a guilt complex? If you feel guilty and he's not helping you get over the guilt, then you have to realize that he's not really being your friend anymore. He's being your husband, technically, by law, and that can fool a lot of people. They put their feelings of husband/wife into the legal container that is still there and then - nothing.
Look, there is some serious dodging going on here. Your husband is a big boy. He knows what he is doing. Sure, everybody loves him and you've gotten some great ideas, but lets see how long the romance lasts after you try some of this stuff out.
Do yourself a favor, and I know I'm going to be called a jackass, but before you start any ideas, get serious with your husband and LAY OUT YOUR CARDS! Ask him how he really feels. Don't try to get him to love you again. Ask him why he isn't there in the first place. Tell him your position. You have to let each other know your positions.
In the meantime, I would have you talk to an attorney and get some advice on how to deal with all of the stress and financial burden just in case, because no matter what anybody says otherwise it is always the nice ones, like you, who don't see it coming. And it is always the nice ones like you who are the last to know and have friends and family who all love the other spouse to death.
OK, OK, I'm just looking out for you. I know, I'm probably totally wrong. But, don't you want to just have a small amount of backup with that burden and stress if the worst happens?
I don't think you're being a jackass at all. I appreciate your complete honesty which is something no one ever gives me because they are afraid to upset me me for feel it will stress me out and cause a seizure. I think you're right. It's amazing that after being Epileptic for 30+ years and figuring I could pretty much deal with whatever it dished out, I never realized how much this site and people like you have really helped me even after all these years. Thanks for the honesty! :)
~~~Life is a one lap race. It's not about winning; it's about enjoying the ride.~~~
It's not uncommon to go through a number of AEDs before you find the right one. In fact, I'm surprised that if your seizures haven't been controlled in 6 years that you only tried three of them. There are many alternatives out there. Sometimes two drugs work better together than monotherapy.
I don't know what kind of a relationship you have with your current neurologist but he needs to be more agressive in your treatment. It shouldn't take years to see if a medication works. As I said, there are many alternatives out there that have allowed many people to attain seizure control. It might be too premature to suggest this but sometimes a second opinion might be in order.
~Karen
peace R.C.
Hi
I,m on my 11 th med. now in a few yrs.
Rick
How about the VNS stimulator? Quality of life is worth it. djj