Coping with Epilepsy

MYK

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I have been married to my wife for 14 years now. She has had epilepsy before we got married. At first i was able to manage her seizures pretty well. I was able to accept and understand her condition. She was allowed to drive but very limited like side roads and not far distances. But i myself was too afraid of her driving so i considered myself the primary driver. Driving her to places she needs to be didnt really bother me. But there were times when i was having a bad day and just wanted to stay home. this ended up in big arguments. And now in the present time, she still has seizures but now with 2 young kids. I am just overwhelmed with the driving as i now have to drive 3 people around, specially to their appointments. Because of this also affects my leave at work as i am the only worker in the family. For years i have been constantly afraid of being with her in public, specially with 2 young kids, i wouldnt know what to do if she had a seizure in public and take care of 2 crying kids. Recently i am just stressed out from alot of things happening in life and also managing her seizures and the kids at the same time. I have to compensate for alot of her shortcomings because of her seizures. And this has caused us to argue alot more. I would get home from work dead tired and i see my wife on the floor because she feels an oncoming seizure. So this means i have to do everything in the house. She said she is tired of arguing about the same thing over and over again the whole time we were married. We argued about nothing else but my constant fear, stress and her seizures. Now she is considering divorce. I know it will be difficult for the kids. But how can i cope with the constantly being afraid of an on coming seizure (specially in public). how can i cope with being the only driver and only worker in the family trying to balance finances, leave and their appointments or taking them wherever they need to go with no other family members to help me out. I try my best to hide my true feelings of anger and stress just so we wont argue. I always have to say YES to her just so she wont feel emotionally stressed and wont have a seizure. Please help me.
 

Loopy Lou

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I can understand where you are coming from. Caring for someone can be difficult, but suppressing and hiding your true feelings will just build and build in you until it turns into resentment, and it looks like you're already at that stage.

Have you considered getting some family counselling? It seems like you both aren't communicating very well. From her point of view maybe she feels like a burden. I know i feel bad when i have to rely on people for lifts and to help me with things. And not being able to drive really sucks, especially when you can't do things as quickly as other people. Like i can't just hop in the car and go see a friend or drive to the shops, and that can make a person feel useless. The fear of having a seizure is awful, and the loss of awareness, time, and cognitive function surrounding a seizure takes it's toll. Not to mention medication side effects.

You must have married each other and started a family for a reason, and maybe it's got lost in the day-to-day reality of life. It's totally natural to feel overwhelmed, but rather than giving up, try talking to each other, or seeing a therapist together, and try and work things out in a controlled environment.
 

Nakamova

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Hey MYK, is there a local human services agency that could provide rides for your family, babysitting, or help in the home? As Lou says, you need to put aside the "day-today reality" and see if you and your wife can re-connect. Counseling can help, both your family and on an individual basis too.

When you say "I wouldnt know what to do if she had a seizure in public and take care of 2 crying kids" I don't think you're giving yourself enough credit. I bet you would rise to the occasion. People are used to seeing crying kids and frazzled parents, and if there's a health emergency they will help mind the kids, or call 911, or stay with your wife while you see to the kids. Others may not know what to do when someone has a seizure but YOU do. You and your wife should talk the scenario through and have a general plan (does she have a medalert bracelet? do you have emergency contacts other than each other, etc.) so that you will feel as prepared as possible. You shouldn't let the fear of what might happen in the future
make you too anxious to enjoy what is happening in the present.
 

Bernard

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Hi MYK, I also have been married for 20+ years and my wife also had epilepsy before we got married. Her seizure activity (frequency, timing, types of seizures, etc.) have changed several times over the years (mostly in response to changes in the treatment regimen) and it's been a real roller coaster.

My wife also no longer drives and hasn't for at least a decade. I honestly can't remember the last time she did drive. I had to do all the driving too.

We also have two kids. They are older now. The younger one is half way through high school now.

I never really worried about my wife having a seizure in public. She's only had one tonic clonic seizure in public in the last 30+ years (she's had plenty for complex partials, but nothing dramatic or potentially life threatening). It wasn't pleasant, but the world didn't end either.

Kids can be surprising resilient. I'm not sure how old yours are, but talk to them about mommy's condition and what to do if mommy has a seizure. My kids were always very helpful to me in assisting my wife when she had a seizure (getting a pillow, checking the time, etc.). They aren't emotionally scarred or broken from the experiences. They take cues from you. If you freak out, they will freak out. If you are calm and deal with it, they will stay calm and deal with it.

It sounds like you need some help. Is there any family living nearby that could help you out once a week or so being with your wife while you take a break?

... We argued about nothing else but my constant fear, stress and her seizures. ...
"God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference."

You cannot control her seizure activity. Even if she does everything the docs ask her to do perfectly - taking Rx on time, every time - there is no guarantee that she will ever achieve 100% seizure control. I had to accept that about my wife.

Fear is totally on you. That is something within yourself. You can choose to live in fear or choose to live in peace and deal with whatever challenges arise.

Stress is a complicated beast, but I suspect a lot of your burden flows from your fear. I suspect that letting your fear go will alleviate a lot of the stress in your house (for you, the wife and the kids).

... But how can i cope with the constantly being afraid of an on coming seizure (specially in public). ...
I read Dune when I was a teenager. There is a small poem in the book that really resonated with me. Maybe you will enjoy it too:
I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.
... I always have to say YES to her just so she wont feel emotionally stressed and wont have a seizure. ...
That isn't healthy. I've been there too. She's got to know that you love her, that you support her, but you are only human too and can't walk on eggshells around her emotional states. She's got some responsibility for managing her emotions and expectations. She's got to help you and support you too and this is one area where she can make a big difference.

If the suggestions I've offered seem untenable for you and the wife to work out together, I might suggest trying to engage a third party for counseling to help you both work through these issues.

My heart goes out to you. I've walked the path you are on. It's not an easy one, but it can be done.
 

Porkette

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Hi MYK,

Welcome to CWE! I've been married for 33 yrs. and before I got married my husband knew that I couldn't drive and he's had to take me to work and to get groceries etc. I know it can be a pain in the fanny but you and your wife may want to look into any possible traveling like a bus or see of they have services like they have where I live it's called Gadabout and it's for people with disabilities or they are to old to drive and they come and pick you up at your home take you to the stores or Dr. etc or just to visit a friend or family and you pay $2.00 - $3.00 but you need to let them know a couple of days ahead of time that you are going some place. This works really well for me.

My husband is retired now and had 3 back surgeries but I still work full time. Maybe your wife should look into getting a job working
out of the home this will keep her busy and less stress on her mind. I found the more active I was the less time I had to think of any bad
things going on and it has helped me a lot.

If I may ask has your wife looked into having surgery done? This was the best thing I ever did and the surgery only reduced my seizures
but it was worth it. I know it's hard but try not to be nervous over the seizures I work in public school and students and staff have seen me
have seizures many times. I also have students at school that have seizures.

The best thing to do if your wife is having a seizure is to lay her on her side and just be sure she doesn't injury her body but if the seizure
lasts more than 10 min. you need to call the Dr. I wish you and your family the best of luck and May God Bless All of You!

Sue
 

valeriedl

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I've had seizures for 14 years, I'm 43 now. I haven't been able to drive since I started having them. I almost never know when a seizure is coming on, which is one of the reasons I can't drive. To be honest with you I wouldn't fell safe driving. My parents asked me to move the lawn tractor once and I had a seizure while driving it and I almost wrecked into a tree. I can't even imagine what could happen if I were in a car. It's really frustrating not to being able to drive. I'll look in the fridge or cupboard and see one or two things that I need. I can't just run out to get them, I've got to wait for someone to get them for me. Luckily I live near family but I still have to wait for their schedule to get what I want.

Have your children seen your wife have a seizure? Do they know that it is a seizure and what to do during it? Explain this to them so they understand.

I've had a ton of seizures in public, unfortunately it's just something I just can't help. As Bernad said try to stay calm. If your children see you getting scared chances are that they will too.

Try not to argue about things, 'talk' with her about them. My ex husband (who is my ex for reasons completely unrelated to epilepsy) would do this. Yes it might start out as an argument and we might have to wait until the next day to talk about it. You might be the one who has to bring the subject up. Let her know you don't want to be a fight but to find a way to make things better.
 

bdhshakes

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Hi MYK, I've had seizures for 20 years and have never been able to drive. I have never been able to drive & having epilepsy is something I made clear to her on our first date. She does all the driving, to stores, appointments, and usually driving me to work as well. I'll take public transit home or Uber if the weather is really bad. She's currently pregnant with our first and I am worried about how my little girl will think of me when I have seizures so I can emptahize with you. Unfortunately, having no control over my seizures just comes with the territory.

I would highly suggest a form of counseling as from your description it sounds like communication is a big issue here. I did some with my wife to help us communicate better, my seizures were part of it, and it has made a world of a difference for us. Try to imagine where she's coming from during the fights - if it's anything like me I always just felt useless, that i'm unable to contribute to the stress she feels driving and very often feel like a burden on her when I have a lot of seizures and we have to cancel activities. For me, I try to contribute elsewhere in our lives as much as I can to make up my short comings in the areas that my seizures don't allow me to contribute. This often makes me feel better about being less of a burden because I'm making life easier for her in other places.

Not knowing what it's like to be married to someone with Epilepsy I can imagine there must be a lot fears involved - as you've stated. Unfortunately there's no universal handbook for handling this stuff. This is something in life that we just can't control and living in fear of something you cannot control is really miserable. I lived that way for a long time once I was diagnosed and the moment I realized there's no point being afraid of something I cannot control - this is just how life is and you've got to make the best of it. I think the more you can empathize with her and where she's coming from she will be able to empathize with you and your fears as long as you are able to calmly explain your side of things.

If a fight starts all I can say is calm heads will always be best. Take a deep breathe and be calm if she lashes out - most of the time we say stuff we don't necessarily mean in fights so try to remember that when things get heated. Think back to why you married her in the first place and latch onto that and remember that the fights and her Epilepsy don't define your marriage, they're just an aspect of it.

My wife's parents divorced when she was young and I can tell you she's had a lot of hurt and scarring from it that she still deals with today. This might not be the case for all children of divorce as I don't have first hand experience with it but I imagine it must be very common for kids who have to go through that. So if nothing else try to think of your kids as well, they definetly hear you guys fight - children see more than we realize.

My only other advice would be try to come up with a game plan for when she has a seizure and include your children in it. I think it will be important for your kids, and soon mine, to understand what epilepsy is and how to help mom when it happens. If they see you afraid and fearful they will also be fearful as others have mentioned - kids always mirror their parents.

Good luck, and i'm sorry things have been rough for you & your wife. We're all here for you & her, I hope things get better.
 

Sabbo

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Hello. I've had epilepsy since childhood. At that time, it was just simple partials, which I can feel come on, & last less than 5 minutes. I still never drove--I didn't want to take the chance. About 20 years ago, I suddenly began having complex partial seizures, which occur without any warning. Unless I do something to myself or my surroundings, or another person witnesses it, I'm unaware that I've had one.
I have 2 sons who've seen me have seizures since they were little, & come running when they hear loud noises to make sure that I am okay.
 

suebear

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Hello, have been married to a loving husband for 20 years. My husband has known about my epilepsy well before we got married and he had no issue with it. We actually flew back home to my parents and he asked for permission to marry me. Married life is never an easy thing but you know building trust with that someone special you married is all a part of the journey. Caring for that someone special is what creates memories and taking time to show you care for them through the good and bad might be tough but it shows the real you to the raw and that you can do anything. God is with you always for guidance. I'm not going to get preachy but I will make a point that we are human and we all make mistakes as being human. We were all put on this earth to help others whether they are a spouse, a friend, or a family member until we are no longer on this earth. If you can do the above you are a good person. God bless!
-Sue
 

Clovis

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Hello. Except for having small children, ours are all grown, my husband could probably write pretty much the same thing you did. I didn't have seizures when we first got married but started about 2 years afterward due to a messed up surgery.

I know my condition is beyond limiting to him as I can go into a gran mal with very little warning and cannot be alone. We don't have any family support and all of our friends are either older or have health conditions of there own so we have no help. And as I'm sure you are all aware when you have a seizure you have things happen that require your clothes being changed and help going to the bathroom. And those are things I would not feel comfortable with just anyone doing.

So, we are together 24/7/365. It is hard on both of us. He tries to be patient but I know he gets very frustrated and aggravated. I feel guilty being such a burden even tho it isn't my fault. So I can understand exactly where you are coming from.
 

suebear

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I've reached a point where I can control the seizures using a VNS magnet and/or the Deep Brain Stimulator. Yes, there are times when something above an absence will take place but it is not quite a complex-partial, hard to give it an exact term because I don't have the exact issues as the CPs would normally do - I no longer bite my tongue, etc. The stimulators are taking very good care of the nerve activity so it has lowered quite a bit. Again, there are moments but when they take place I can use the VNS magnet and things are resolved.
 

Clovis

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I have had a VNS for almost 15 years now. Am actually on my third one and still don't have full control of my seizures. Even when I have been on multiple meds I would still have the petit mals about once a week and gran mals once or twice a year.
 

suebear

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I have had a VNS for almost 15 years now. Am actually on my third one and still don't have full control of my seizures. Even when I have been on multiple meds I would still have the petit mals about once a week and gran mals once or twice a year.
Not sure what I can tell you other than speak to your neurologist or find another one that can help you Dx the issue you are being faced with. In my condition we went one step up as the VNS was not good enough and I was experiencing 5 seizures a day and they were complex partials which the VNS could not handle at the time - something major needed to be done. At one point in time we thought after having the VNS in 2008 everything would be just fine but the problem is I wore it out all the way up to the 5 and it still didn't work. Keep in mind I had brain surgery in 1995 we thought would be the BIG solution but it was only a part of the long equation to control my seizure flow. It took the mapping of a Deep Brain Stimulator in 2011 to then begin controlling the nerves on both sides and THAT was the real game changer in my life. Since that time everything has started to slowly fall back into place and my life is going back to normalcy so much it is like a night and day change.
 

Clovis

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I have spoken with my neurologist many, many times and he pretty much seems to have just lost interest in helping me. I truly wish I could find another one but we live in a very small area with limited access to special doctors. We drive 100 miles to see my current neuro.

I am also limited by my medical coverage as to who I can see. My husband needed to see one about a year and a half ago and couldn't find one within 100 miles that would take our medical coverage. And mine doesn't take any new patients with our coverage so he couldn't even see him. It is very limiting and frustrating.

I am glad you have gotten some help and are getting better. God bless you.
 
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