Loss of self after seizure

[Shoeprincess]

My husband was diagnosed w/epilepsy over 10 years ago when he was having partial complex seizures. Stopped taking tegretol b/c of the side effects. He had his 1st grand mal seizure in Sept. 2014. Was given Keepra to take.

He feels like he's lost a part of himself. In his description, he says he's missing part of his identity or missing part of his soul.

Is it normal to feel that way after a seizure? Will the part he "lost" come back?

I've been having lots of trouble finding anyone who's had a seizure who feels like they're not the person they were before the seizure.

 

[Belinda5000]

I've never fealt like I lost part of myself andI've had thousand sof seizures in my life time.
I've always had seizures all I've ever done was take myself off meds for 5 days for the longest. I take tegretol and you get use to the side effects after so long it takes 3 weeks for me get use to side effects usually.

 

[Kgartner]

Could it be a reaction to the Keppra? My daughter really felt that Keppra changed her personality a lot. It also caused increased anxiety, panic attacks and she really lost the ability to cope with life.

 

[George__]

I felt this way after having a seizure after being seizure free for a couple years (August 2013).

After the seizure I had doctors telling me what I can and can't do, job telling me x y z, family treating me differently, having to withdraw from activities, losing certain privileges etc etc.

It made me feel really weak/helpless? Almost like I was a disabled baby? And I really wanted to be rebellious because I felt like I worked my ass off to try to stay seizure free only to have a seizure again.

I'm not married and only a young adult though

 

[Army Vet]

I can kind of relate. I am a very independent person. It is nice to do what you want to do whenever you want to do it. Then when all of the sudden you can't you feel helpless/worthless (at least I do).

Like George was saying, I worked my ass off to get where I am. I started having seizures about 5 years ago and then got it under control with medication within a year. Afterwards I got my degree in civil engineering. Then this summer I start having episodes again (and I don't even know I'm having them; someone has to tell me that I had one). Now I can't drive again for another 6 months. I lose my job(s). Doctors have to start poking me and questioning me and sounding all important (even though they don't know either). Then here come the new medications and dosages along with the medical bills. All while holding my breath (metaphorically of course) that I don't have another and the whole thing starts all over. Trust me, I feel his pain.

 

[valeriedl]

Did this start before or after he started taking the Keppra Shoeprincess?

Could it be a reaction to the Keppra? My daughter really felt that Keppra changed her personality a lot. It also caused increased anxiety, panic attacks and she really lost the ability to cope with life.

I'm on Keppra and it has changed some of my personality and the way I deal with things a good bit.

It's a side effect that we call kepprage. I can blow up on people over the smallest things and just start yelling at them like crazy. I have the worst time dealing with children now. I was never like this before I started taking it.

 

[jojoko]

Hello
i am currently on matever (combined with vimpat), which is a generic drug, same as keppra. I take 250 mg a day, so far i haven't noticed any changes in my behavior apart the sleepiness and a small change on my appetite.
I had seizures for 17 years now, and truth is after every seizure i always feel sad and frustrated. I don't know if it's a symptom or just a psychological thing, but i would suggest talking to the doctor about it.

 

[masterjen]

It might be "psychological", or "mental". I know for me I feel like the independent, completely self-reliant person isn't there anymore. Just the diagnosis has taken away a certain amount of my self-confidence, the medication can make me feel drained of energy, and my having to say "no" to certain plans that were made with friends because of seizures has caused some people to drift away.
And then on top of all that, when I do have a bad seizure I am generally frustrated, even more fatigued and mentally "not quite there" for a day.
So to use your husband's words, I would say I have lost a part of who I am or rather, who I was. I was diagnosed 4 years ago, and for the first few years I focused on getting back to who I was and I am finally realizing that maybe that is wrong route to take. Now I am working on being the best me I can be with where am at now, not where I was 4 years ago. Maybe help your husband look at things that way, too; that is, focus on being the best he can be where he is now, and not keep trying to fight to get back to where he was. And in doing that, we may both end up even better than where we were before!

 

[arnie]

Hello and welcome. I had seizures for over thirty years, (I'm 56) and probably undiagnosed ones for longer than that, so I don't really have much of a baseline to know if I have lost anything. I do know that the seizures (mostly complex partial) would give me a sense of unreality, and a kind of "separateness" from everything, if that makes sense. That feeling would pass after a while, usually less than an hour, but perhaps it has never completely gone away. I've managed to be seizure free for four months now, so I guess I may be able to see if a new normal comes back. I hope all that made sense. I guess if I had to answer your question more directly, I would say that it has probably influenced my idea of what my identity is, but I don't feel like it has taken a part of my soul. Again, though, I have had it for so long I can't be sure of it. Best of luck to you both.
Cheers!

 

[Shoeprincess]

So far no rage. He had the rage on the Tegretol and lucid dreams where he was killing the entire family. That's why he stopped the Tegretol. On the Keppra he's very sad and feels lost.

 

[N Sperlo]

I can understand feeling like someone else on Keppra. Been on it a long time now. You feel tired, maybe depressed, and don't want to do much. In a way I feel like someone else, but not to much of an extent.

 

[Dolores]

I can understand feeling like someone else on Keppra. Been on it a long time now. You feel tired, maybe depressed, and don't want to do much. In a way I feel like someone else, but not to much of an extent.

:agree: I take Dilantin & Phenobarbital and my seizures are under control. I've been on Dilantin since I was 10 (many decades ago) so I don't have a pre-Dilantin me to compare my current moods with. But I do know I get tired and depressed and wonder if the drugs are making that easier to happen. And of course you throw in other drugs (I take Pravastatin for cholesterol) and WHAM suddenly one day you feel like you were hit by a Mack Truck. Lack of short term memory (because of the epilepsy & the drugs) causes you to forget all these important details so that it seems like it takes forever to figure things out.

However ... people have told me they are amazed at all I've done and all I've gotten myself through. It's hard to remember that when you feel like you've lost yourself but I do believe that if you keep on searching you will find yourself (or at least the important bits) again.

I very much agree with MasterJen, to help your husband focus on being the best person he can be without making demands that he be a certain way. I know that I did that (had to do that to get through my divorce) and I will readily admit that I've gotten myself to a wonderfully unexpected place. Just take each moment at a time.

Wishing you and your husband all the best!

 

[N Sperlo]

Sometimes I need a nudge in the right direction when I want to be lazy. Getting up to go somewhere. Do something. Even just working on one of my vehicles, I enjoy the time I spend with the tools. I had to pull the front suspension of my pickup apart two weeks ago. Well, it turns out that someone fell asleep and plowed into my two driving vehicles destroying one and sending another to the body shop. I had to get up and fix that truck even though I was being lazy. Got it done and enjoyed the time I spent doing something productive. It doesn't even have to be productive. I just need to get started and roll with it.

 

[MIKEJ]

Unfortunately I can relate to your husbands feelings. I feel the same It is very hard to explain or to be understood by others. I feel like I have lost a large part of who I am and feel like I know myself as if I read about a character in a book.

The worst tonic clonic seizure I had was about 20 months ago. I was unresponsive for 4 days I couldn't taste anything for about 3 weeks only after about 4-5 weeks could I start thinking somewhat straight and another few months to feel able to deal with people again. I also lost appox 12 years of memory that even now I only can remember small bits and those memories are like looking at a photo there is no feelings and a can't tell you when I have no time reference. So you could say I never have recovered from that one. I have had tonic clonic seizures since then one of which I woke up 2 days later strapped to a hospital bed.