Spouse with Epilepsy - sometimes the support needs support too

sarahc

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hey guys,

My husband has epilepsy. I guess I just need a bit of a vent or some support as being the support is sometimes totally knackering physically & emotionally & maybe through this forum I can understand more about epilepsy & how it affects our relationship.

First time he had a seizure was terrifying, I had no idea what was going on as he's very ashamed & embarrassed by his condition & never told me or spoke about it. When I found his medication & asked what it was for he said "to stop me falling down" that was it. I suspected it was epilepsy but wanted him to tell me in his own time.

The first time it happened with me I was so upset & worried he was going to die that I couldn't even call an ambulance. I was so angry & ashamed at myself! I managed to call my mum & she figured out between my sobs that he'd had a seizure (thankfully my mum who works with special needs children has epilepsy training & could talk me through what do to)

He's extremely fortunate his seizures always are triggered by red wine & forgetting to take medication & next day you can guarantee he'll have a seizure. They happen about once, twice a year. Having to double check everyday to see if he's remembered to take the medication annoys him no end & I feel like a nag but I have to because if I trust him, as I normally do, eventually he'll slip up & forget.

I have a hard time trusting him to look after himself after we were on holiday in Europe, he was driving & my worst nightmare happened, he had a seizure while driving on the autobahn. I thought we were going to die. He has no warning if a seizure is about to occur, we were mid conversation & all of a sudden the car started drifting to one side & I yelled at him to turn the car & then realised he was having a seizure.

Our guardian angels were looking after us that day as I somehow managed to run the car into an overpass & into a lane full of witches hats that slowed the car down, thankfully there were no cars nearby & I rammed the car into a wall & it stopped. Apart from shock & whiplash we were fine. Not being in an English speaking country, with no idea where we were & hardly any phone battery left was one of the worst experiences of my life. I honestly thought we would die & he was blissfully unaware of the whole thing.

As he had no idea what happened & couldn't understand the severity of what had happened, he couldn't really relate as he wasn't "there" mentally during the ordeal, so to him its as if it happened to someone else & thus not really sympathetic to why I was so upset or really thankful for me saving our lives or sympathetic to the anxiety I suffered afterwards which was tough.

During a seizure he's normally out for 1-5 min & can't remember anything, (when he cant remember who I am truly breaks my heart) Eventually his brain re boots & he'll know who I am half an hour later & needs to spend the rest of the day sleeping.

I am terrified of him doing this again especially if we had kids in the car. I don't know if I could forgive him if that happened again, not that its his fault for having epilepsy, but the fact that he can control it & can be careless with his medication. Everyday he drives to work & I am anxious that he gets to & from work safely (we also live in south africa, which is a dangerous place to drive with the chance of being highjacked etc)

I guess I'm sort of getting this off my chest & I am sorry for rambling, once you start it doesn't stop!

Do any other spouses, partners family members go through anything like this? How do you cope? Are mood swings common with epilepsy? He takes valpro, does that affect people's moods, behaviour etc?

I love him more than anything & would do anything for him, all I want is for him to be ok & live a long healthy life together & maybe have reassurance that when we go through a rough patch & he says things that hurt so much it may be due to other factors caused by his epilepsy (ie one day he came home & said it was over with no warning, no problems before etc & it utterly crushed me) then wondered why I was so upset the next day as he said he didn't mean it. It can be tough taking all the punches sometimes!

thanks for listening cheers s
 

Meetz1064

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Hi there

Sarah, and how's it going???

Eyah, it sucks being a caretaker, doesn't it??? I am one now to a new partner, and I have E as well. My E is under control (4 types of nocturnal seizures)...........however, my partners' is more of a CHALLENGE :)

You've gone through an awful lot so far, and I commend you for sticking around. I can only begin to imagine what it's like driving on the Autobahn and having your partner go through a seizure while driving....... I would seriously flip.

Trust is an issue that is hard to work with sometimes--and as an E person/caretaker myself, I can understand your need to check up on him both ways. For him though, understand that he is somewhat ashamed of his E--there's a stigma attached to it in many areas. That's hard for someone that doesn't have E to understand.....especially in these modern times. But unfortunately, it's true.

Mood swings do happen for E patients.....sometimes it's dependent on the tye of E, or it is the meds....sometimes it's both. Valpro.....sounds like Valproex Sodium/Depakote/Depakene. It's one that does cause mood swings as does Keppra and several others.

My best suggestion in terms of knowledge about the meds (AEDs) is to talk to your local pharmacist. Some websites are also helpful such as www.rxlist.com, www.webmd.com, and www.drugs.com. I would think that there are some laws against your husband driving especially if he isn't under total control. Keeping a driver's license is a good motivation for many people who hate taking their meds....but keeping their freedom is reliant on that license, which relies on consistent habitual taking of those medications.....And yes, I've been without my license (willingly) before.

You're in great company here, and have found a wonderful place. Mr B, our host, has created a wonderful home for all of us, and the dinner party is quite grand. Feel free to check out all of the nooks and crannies.

Sit down, kick back, and relax. Perhaps Eric or Buckeye will bring some passable coffee, as I keep burning it......lmao.

Hugs to you for everything,

Meetz
:rock:
 

Bernard

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...
My husband has epilepsy. I guess I just need a bit of a vent or some support as being the support is sometimes totally knackering physically & emotionally & maybe through this forum I can understand more about epilepsy & how it affects our relationship.
My story is very similar to yours except I'm the husband and my wife has epilepsy. She was very upfront and honest about it when we started dating. She wasn't ashamed by it - it wasn't a big deal to her.

...
He's extremely fortunate his seizures always are triggered by red wine & forgetting to take medication & next day you can guarantee he'll have a seizure. They happen about once, twice a year. Having to double check everyday to see if he's remembered to take the medication annoys him no end & I feel like a nag but I have to because if I trust him, as I normally do, eventually he'll slip up & forget.
Oh the memories this paragraph brings back. My wife used to complain vociferously about me nagging her on taking her meds. It wasn't until she started having status seizures and a near death experience that she really started accepting the necessity of her meds and understanding of my concern for her well being.

I always maintained throughout the unappreciated years that I only asked about her meds because I loved her. These days, it's a bit of a joke between us and she will often pre-empt me - say "don't ask me yet" as she goes to take her pill. She genuinely appreciates my concern now even though it's very rare that she does forget to take her pill (and my reminder is *very* appreciated on those days).

I'm not going to lie though - it was a long, hard road to get to where we are today. Several years of unappreciated assistance on my part. In our case, it took some pretty drastic consequences for my wife to fully appreciate my dedication to her welfare.

... he had a seizure while driving on the autobahn. I thought we were going to die. He has no warning if a seizure is about to occur, we were mid conversation & all of a sudden the car started drifting to one side & I yelled at him to turn the car & then realised he was having a seizure.
That is scary! He's playing Russian Roulette if he's driving while his seizures are not fully controlled.

...
During a seizure he's normally out for 1-5 min & can't remember anything, (when he cant remember who I am truly breaks my heart) Eventually his brain re boots & he'll know who I am half an hour later & needs to spend the rest of the day sleeping.
This is very normal. Don't take his post-ictal state personally.

...
I am terrified of him doing this again especially if we had kids in the car. I don't know if I could forgive him if that happened again, not that its his fault for having epilepsy, but the fact that he can control it & can be careless with his medication. ...
For long time, my wife was in denial about the risks of her driving while her seizures were uncontrolled. I had to put my foot down and do a lot of chaffeuring her around until she got good control of her seizure activity again. It wasn't fun, but the consequences of risk realized would have been too catastrophic for us to bear.

...
Do any other spouses, partners family members go through anything like this? How do you cope? Are mood swings common with epilepsy? He takes valpro, does that affect people's moods, behaviour etc?
Yes.
With patience and love.
Yes (sometimes it's a side effect of the medication too - his doctor can check his blood syrum to see if his dosage is too high)

... It can be tough taking all the punches sometimes!
Yes it can, but we try every day to meet the challenges that face us.
 

Nakamova

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Hi sarahc,

I'm not a caregiver/partner of someone with E, but I wanted to add my welcome to those of Meetz and Bernard above.

Like your husband, I have felt that my seizures are easier for me than for someone witnessing them because I'm not really mentally "there" when they occur. But unlike your husband, I do have sympathy -- not to mention immense gratitude -- for those who have taken care of me at those times. Your husband's moods and lack of concern for you and the consequences of his disorder may well be related to the medication and/or the seizures. His saying to you that he wanted to end your marriage, and then saying the next day that he didn't mean it, raises a big ol' red flag for me. Is it possible that he didn't remember that he said it in the first place, and was "covering" by passing it off as a joke? If so, he may be having smaller seizures that are affecting his memory/behavior. I would urge him to review his medication with his neurologist, and consider changing his dosage or possibly trying a different med altogether. You may want to keep a journal of any unusual behaviors or moods on his part, so that he (and his doctor) can get a sense of what's been going on.

Best,
Nakamova
 

Meetz1064

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I forgot

to add, if it makes you feel any better, that my new partner is NOTORIOUS for forgetting their meds, so I have to just flat out hand out the meds. Otherwise my darlin' partner wouldn't take them.....
 

aminto

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Hi Sarah,

I've got complex partial epilepsy and have only had one tonic clonic in my life, however I relate to the mood swings that your partner experiences. I've had mood swings for a long time and never realised it for ages. Before I started taking Keppra, it was more obviously associated with seizures, as I felt very angry for about a day, then had a seizure, then felt very depressed for about a day. Sometimes they'd merge into one another for a few days, other times it was a one off.

One thing I've realised is that Epilepsy seems to be different for everyone, so my pattern might just be my pattern.

The doctor recommended I stop driving about 6 months ago and I did, even though my wife doesn't drive either. I had considered getting my license back now, as I've only had mild seizures in the last 6 months, but even so, I feel I'm not fully in control and even my emotions make it not a good idea. If you can support your partner in not driving, I'd recommend it. There's more important things in life and other ways of finding freedom.

With the tablets, we have a simple arrangement where we keep them on a shelf in the kitchen in one of those containers with a compartment for each day. That way, my wife can simply look at the container to see if I've taken my tablet or not and I don't feel constantly watched.

When I'm having an aura, a few things I find that help are:

Sleeping - this is sometimes an absolute essential, regardless of what else is going on.
Relaxing - listening to a relaxation CD, peaceful music, going for a walk by myself, reading a good book, watching a comedy, etc.
NOT talking - if I'm having an aura, then I find it very difficult to not blame my wife or kids for the problems I'm experiencing and find that conversations on almost any subject seem to be stressful. Basically it's often the case that I'm better off being by myself for a bit, or watching a film together, but something that doesn't require interaction.

If you're the kind of person who can stay calm even if someone else isn't, then maybe you can support your husband when he's having an aura / mood swing, however it's certainly not a good time for me to problem solve, as my concentration level is at about 50% and my mood is at 10%!

Hope it helps and know that you're not alone.
 

Ann T.

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Hello, Sarah! Welcome to CWE. If you & your husband have a cellphone / smartphone with an alarm that can be set for various times of the day, use it to remind him to take his prescriptions. My 1st neurologist in the neurological office I go to now told me, "Get a wristwatch [before I got my 1st cell phone] & set it for the time I order you to take your medicine. It will make remembering to take your medicine a heck of a lot easier, and you won't have to ask anyone if you took your medicine & no one will have to bug you." Ever since he gave me the suggestion, I've remembered to take my 3 meds, multiple doses, at the correct times. In addition to the weekly pillbox, have him try it & see if he likes the wristwatch or cell phone alarm set up. A seizure notebook to record time seizure occurs & what he does during the seizure is a big help, too. Oh, and yes, mood swings of varying degrees are notorious for epileptics.

Take care, Sarah & you are more than welcome here to vent, chit-chat. We are a big support group whom will do our best to support you. Cheers!

Best Regards, Ann
 

qtowngirl

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Our guardian angels were looking after us that day as I somehow managed to run the car into an overpass & into a lane full of witches hats that slowed the car down, thankfully there were no cars nearby & I rammed the car into a wall & it stopped. Apart from shock & whiplash we were fine. Not being in an English speaking country, with no idea where we were & hardly any phone battery left was one of the worst experiences of my life. I honestly thought we would die & he was blissfully unaware of the whole thing.

As he had no idea what happened & couldn't understand the severity of what had happened, he couldn't really relate as he wasn't "there" mentally during the ordeal, so to him its as if it happened to someone else & thus not really sympathetic to why I was so upset or really thankful for me saving our lives or sympathetic to the anxiety I suffered afterwards which was tough.

Hi Sarah, and welcome.
I CANNOT IMAGINE what that experience must have been like for you. Especially in a foreign country where you're basically lost. I'm so sorry to hear your story, how terrifying. (((BIG BIG HUGS))).

All the best advice is given above, so for the most part I'll just say 'ditto.' I would almost guarantee however that he feels worse about the accident than he has let on. For many people epilepsy comes with forms of denial, and for me I can say with certainty that's how I felt when I seized and came to in a ditch. I was working and after I got my head together I told all around me (police, etc.) that I was fine, the ditch wasn't that deep, to please just let me drive out and get back to work. Right.
It's pretty hard to grasp, one minute you're a normal person just driving and the next it's all changed. Acting like it's no big deal is not uncommon, for many it's a coping mechanism as epilepsy (esp. traumatic events such as an accident) are just too hard to accept. It can feel quite heartbreaking. It's been over three years and I still look back on that day with tears. I feel so sorry for the guy who seen me slump from behind and pulled over to hold my head up. In essence, he experienced it, not me, and was so shaken up after. I'll never forget him. I'm not saying this is what your husband feels but just that I have my serious doubts he shrugs it off inside.

And definately, find as much patience in yourself as you possibly can. I understand it's hard and living with someone with E can feel unbearable at times, but a lot of the time the sufferer feels just as lost as those around them. I also ask for you to have patience according to my own situation. My boyfriend of almost five years recently told me he couldn't handle my emotions anymore (I'm stressed and cry a lot worried about possible surgery, etc.)... and 'that I couldn't handle that he couldn't handle it.'
Was a very big eye opener to how alone I was about to be. The feeling of being on your own when you're in the same house as your partner has got to be one of the worst things I've ever experienced. I'm lucky I have a few close friends to turn to but when that emotional trust goes up on the stand in your relationship it's the most empty feeing ever.

Please keep us posted, feel free to talk about anything, and again, welcome to CWE.
 
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RobinN

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Hi Sarah,
I am a caregiver for my daughter who is now 20. She was 14 when she began to have seizures. It is not easy to be the eyes and ears. Mine was not yet an adult when her seizures began, so I was responsible. I had an added weight on my shoulders in that my husband was not supportive of alternative approaches I was taking. I realize now why, since it was for his own selfish reasons. He wanted her on meds and controlled, even if there were side effects that he did not have to deal with.

Rebecca learned with some therapy that she was lucky to have me around, and to guide her. Not easy, and I can't even explain the roller coaster we rode for a few years.
Very emotional. She is now seizure free for over a year, and med free for about 3 yrs. We are beginning driving practice for the first time, and talk often about her nutritional choices. She has had to learn to be proactive in her own health, and know how her choices effect how she feels. Blood sugar and hormonal balance have been a part of her healing process.

I have felt many times that it was unappreciated. One day she will understand.
Each day is a new fresh day, to begin again.
 

gigi

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caretaking

Sarah - difficult at best sometimes and is all individualized. Some of us have been more fortunate than others. Don't beat yourself up, and get outside support - like CWE. I have E., and my better half has injuries, so we both bring something to the table that rears it's ugly head at times, in one form or another - that "crashes" the party so to speak. Our first inclination is to run when things get out of control, so decide to be pro active with his E. and your marriage, otherwise after some years of wear and tear, you can end up with a relationship on the rocks. I told my hubby about my E. right out of the starting gate, and he told me bout his injuries. Being in love, distorts what might be down the road!!! I am sorry about the ugly comments from him. I have said terrible things to my hubby with great remorse later. I work on that daily and my moods.
RobinN - I always marvel at what a great Mom you are, how you have sacrificed to better your child's health and quality of life. Wish my Mother had done the same for me.
 

RobinN

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RobinN - I always marvel at what a great Mom you are, how you have sacrificed to better your child's health and quality of life. Wish my Mother had done the same for me.
Thank you, this note means the world to me.
It has been a rough road, but we are stronger for having taken it.
I wish your mom had too, but it never is good to focus on the past. Let's start now and make every day count.
 

gigi

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Thank you, this note means the world to me.
It has been a rough road, but we are stronger for having taken it.
I wish your mom had too, but it never is good to focus on the past. Let's start now and make every day count.
Most welcome! Thanks for reminding me to focus on the present and future. Us E. people need constant reminders, always fighting the good fight against what our brain tricks us into obsessing about. :bigsmile:
 
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...(when he cant remember who I am truly breaks my heart)
I was reading through your post and tears started rolling down my cheek when I read this... I feel the same way with my wife. It's like we've never met. I know everyone says it's temporary and supposedly "normal" behaviour - still not too nice to see it.

---
(we also live in south africa, which is a dangerous place to drive with the chance of being highjacked etc)

Do any other spouses, partners family members go through anything like this? How do you cope? Are mood swings common with epilepsy? He takes valpro, does that affect people's moods, behaviour etc?
I see myself as quite an amateur in this whole thing - and the best thing I do to try and deal with it, is to read anything and everything! The underlying thing I seem to find is that it seems nothing is "normal". So I'm pretty sure you shouldn't take mood swings personally, even though it must be heart breaking at times. I too live in South Africa - and for this reason too my wife and I decided that she should stop driving as of today. It means an extra 30mins in heavy traffic on the road for me every day each way to drop her off... what bugs me more however is that she has to be at work 3 hours longer each day - which I'm pretty sure is not a good thing for her either!

My folks are friends with a doctor who regularly testifies on Road Accident Fund cases in court - and you'd be surprised to hear of how bad it gets when they find out that someone with epilepsy, without a letter from a neurologist stating that he/she is allowed to drive, gets into ENORMOUS trouble if they caused an accident.

I know exactly what you're going through - hang in there!!! *hugs*
 
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donielle

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During a seizure he's normally out for 1-5 min & can't remember anything, (when he cant remember who I am truly breaks my heart) Eventually his brain re boots & he'll know who I am half an hour later & needs to spend the rest of the day sleeping.
You are not alone. My husband gets very paranoid when he's post-ictal and often tries to punch me. I've been very fortunate to always get out of the way in time, but we do have some damaged furniture and appliances. I am scared to death that one day one of our children will get in the way. It's not his fault, he has no idea what is going on and I understand this.



I guess I'm sort of getting this off my chest & I am sorry for rambling, once you start it doesn't stop!
we need someone to vent to, too.

Do any other spouses, partners family members go through anything like this? How do you cope? Are mood swings common with epilepsy? He takes valpro, does that affect people's moods, behaviour etc?
I am also familiar with the mood swings. I just remind myself that it's not him and it's not his fault.

I love him more than anything & would do anything for him, all I want is for him to be ok & live a long healthy life together
Always remember this!
 

aminto

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I used to take Keppra to control my epilepsy and not only did it only have a very minor improvement on my seizures, it made my mood swings hideously worse. Reading forums on Keppra, this is also a very common side effect.

I'm now taking Lamictal (which is also an anti-depressant) and it's controlled my seizures 100% AND my mood swings have gone (or at least are in the realm that I would consider normal for any human being).

I think that doctors really over-focus on the seizures themselves and for me, mine were mild and the mood swings had a far more negative impact on my life than the seizures.

It's worth looking into alternative medication and if you have mood swings at all with Epilepsy, I would absolutely avoid Keppra.
 

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sarahc

How are you, I have been thinking about what you wrote and just let me say this, you have no idea ( well you do) what you and all the support you give means to him, my wife is in the same position as you and a good few other here I would imagine, I have epilepsy for 40 + yrs now, and there are others here probably longer, its hard to say how much you all are appreciated, coping can be difficult, I am very sharp with people at the moment and I do not mean to be, its not me. We should tell you thanks and more, but what can I say, I do not know why. So from me THANK YOU
 
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