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My wife, epilepsy, and abnormal behavior - My Perspective

Wed, 09/01/2010 - 05:03
Topic: Family & Friends

My wife just joined this forum and I thought I would too.  This is my first post and I would like to tell my side of this seizure "adventure" and hopefully hear from others that what we are going though is "normal."  We are both 29 yrs old and she has just started dealing with some sort of epilepsy (the verdict is still out until we have more tests completed).  Here is a background on what has happened so far:

 

About 5 Years Ago - My wife had a Gran Mal seizure on a friend's front porch.  The seizure came unexpectedly and as far as we know it was her first one.  The seizure was preceded by slurred speech, incoherent/random thoughts, depression, and mood swings - similar to someone who is really, really drunk.  Luckily I was there to catch her so she didn't suffer any injuries.  We did go to the hospital but she was discharged from the ER only 4 hours later.  She was consulted by a Neurologist that said it was nothing and sent her on her way without a diagnosis, drugs, etc.  Here EEG - we later found out - was abnormal.

April 1, 2010 - My wife and I went to lunch and came home to take a nap.  I slept for about an hour but she didn't get up until about 5 hours later.  That evening we went to dinner, came home, and she fell right back to sleep (probably around 8-ish).  I eventually ended up coming to bed at around 11:30pm.  Just as I was drifting off to sleep at about 11:45, she suddenly sat up violently, yelled, and practically fell out of bed.  I felt her having a seizure, turned on the lights, and found blood everywhere.  I immediately recognized she was having a Gran Mal (due to the seizure 5 yrs before) but this time she had bitten her tounge very badly.  I got my wife centered in the bed, called the medics, and tried to explain to her what had happened.  I don't think she would have believed me except for her chewed up tounge and blood everywhere.  At any rate, by the time the medics got there (about 20 minutes later) she was aware, talking, and coherent.  So much so, the medics told us that she didn't need to go with them but that she should go to the hospital so we decided to drive ourselves.  The medics left (about 1 hr after the first seizure) and I started helping my wife find clothes to put on for our journey to the hospital...  While she was looking for underwear she suddenly froze and just started staring.  I was able to get her attention and "bring her back" into reality but then it happened again.  I started to worry that she was going to have another seizure so I kept "bringing her back" by shaking her and saying her name over and over again but the staring spells started coming faster and faster.  Luckily we did make it back onto the bed where she had a second Gran Mal (about 1.25 hrs after the first one)...  As a side note, it is utterly terrifying to watch someone you love go through a Gran Mal - I am very glad she doesn't remember and I wish I could forget too. So back came the ambulance and this time she went to the hospital with them...  And this time she was pretty much out of it (unlike the first seizure).  I arrived at the ER just behind the ambulance and while they were trying to start an IV, she suffered a 3rd Gran Mal (about 2.5 hours after the first one).  At this point they started giving her IV Dilantin, Morphine, and Daladin.  She spend the next two days in the hospital and came home with a prescription of Dilantin.This seizure, just like the one 5 years prior, was preceded by a large number of "symptoms" including slurred speech, irrational thoughts, slow cognition, hiccups, and large amounts of sleep.  These started about 2 weeks before the seizure but also included a shopping spree the weekend before (almost a manic type behavior), among some other bizarre occurrences.

August 14, 2010 - After seeing two local neurologists and getting poor feedback we decided to go to a specialist in Seattle.  Between the time of the April seizures my wife had been put on Dilantin and Lamictal (they were attempting to titrate up the Lamical and eventually taper down the Dilantin).  After seeing the specialist in Seattle - who is a very well respected researcher - he set her up with a new med schedule, set appointments for another MRI, EEG, and a follow-up appointment.  He wanted my wife to taper down the Dilantin, maintain the Lamictal, and added Zonisimide (sp?) to mix.  During the following two weeks my wife started falling into her pre-seizure "symptoms" - the most unsettling being the hiccups.  I called the neurologist nearly every day asking what could be done but he told me her "symptoms" were abnormal pre-seizure activity.  Sure enough, on Saturday morning, my wife suffered yet another Gran Mal seizure...  And once again I was lucky enough to be in the same room and caught her as she fell.  This time, however, when she finally woke up, she completely freaked out.  I was instructed to NOT call the medics and instead call the on call Neurologist for instructions.  But when my wife was awake enough to move around she decided to bolt for the door.  I ended up calling the medics because the situation got out of hand.  I had to wrestle my wife to the ground over and over again for about 15 minutes while my neighbor helped get the ambulance to our house.  By the time help had arrived she had calmed down and finally realized that she had a seizure.

Behavior/Mood Issues:

Since the last seizure it has been a downward slide on the crazy scale.  My wife never really seemed to "clear" from the last seizure, had extremely bad anxiety, depression, and just hasn't been herself.  The neurologist took her off the Zonisimide due to a suspected rash and she is now taking an anti anxiety medication in addition to her old dose of Dilantin and Lamictal.  She continues to have random slurred speech and acts like she is drunk sometimes - especially in the evening before bed.  Her memory is horrible and she just started a 3 month leave from work.  We think she might have had a seizure in her sleep a few nights ago but I didn't wake up.  Luckily she has not bitten her tounge during any of the seizures since the April event so there has been no visible trauma.In addition to the depress/anxious moods, she has also been very angry/mean.  This is highly unusual for her...  And to make things even more confusing, in the last two days she has almost become manic with behavior such as fast/loud speech, lowered inhibitions, and random scattered thoughts.  I honestly will not be surprised if she tries to go on another shopping spree - which is unlikely to happen because she isn't allowed to drive. I've since had to take over monitoring her meds since she has messed up her dosages because she can't remember taking them or not.  Every count on all her meds was off...  On the positive side, her most recent MRI came up normal and she is scheduled for a VEEG for Sept. 7.  Hopefully we will have some answers soon.  This is destroying our lives and every day feels like a bad dream.  And symptoms are getting worse every day... 

Questions:

Has anyone else experienced the sever mood changes, and strange behavior before, during, or after a seizure?  Is this normal or is it more related to the drugs?

Mood disorders seem like a normal thing with epilepsy, but how long should they last?  On a scale of 1-10 (10 being the woman I have know for the 8 years prior to these events) my wife is at best 5 most days...  I am really worried that there are other things going on here.

How can I help her even when she doesn't think or doesn't want help?  Could someone offer techniques/skills in communication?  Sometime I feel like I am trying to convince a really drunk person to do something when they have their own agenda.

Can anyone recommend a place (other than these forums) that would be a good resource for my personal support?  Since April I have not slept very well and actually think I may have a little PTSD.  I sleep light and reactive to even the smallest noise...  And I can sense my own personality shifting slightly...

Any other thoughts or things to relate to this story? 

 

 

I really appreciate any feedback, support, or words of encouragement since this seems like one of our darkest hours.  It has put a tremendous amount of stress on our marriage, our finances, and nearly every aspect of our lives.  I hope to someday get my wife back so we can end this bad dream.  

 

 

Comments

Re: My wife, epilepsy, and abnormal behavior - My Perspective

Submitted by phylisfjohnson on Wed, 2010-09-01 - 15:29

This comes from drugs.com: Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hyperactive (mentally or physically). Zonisamide can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert. Do not stop taking zonisamide without first talking to your doctor, even if you feel fine. Stopping zonisamide suddenly may cause you to have seizures. You may need to use less and less before you stop the medication completely.

Doesn't sound like Zonisamide is for her.

I was on Dilantin and it made me numb and dumb.  I was a zombie on legs.

As for Lamictal, that has become part of my "magic med mix."  At its lowest level, it's for depression and anxiety.  At the next level, Lamictal is both an anti-anxiety AND anti-seizure med.  And at its highest level, it's for bi-polar people.

My Lamictal is supplemented by Klonopin which is also an anti-anxiety and anti-seizure med.

And to be perfectly honest, my husband was thinking of leaving me because I was such an ornery bitch.  (That was befoere Lamictal and Klonopin.)  It's like you spin out of control, lashing out at anyone who comes across your path.  And for you, it must be especially horrible.

If you want to get some background on the diagnostic tests avaiable you can goto  http://epilepsytalk.com/2010/03/31/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy/

Take heart.  Things WILL get better.  She just needs to be properly diagnosed and find the med mix that's right for her.  It isn't easy finding the right AEDs because there's so many on the market now.  So, it's sort of like a crap shoot.  But try to be patient, she WILL come around.

Best of luck to BOTH of you!     Phylis Feiner Johnson   www.epilepsytalk.com

This comes from drugs.com: Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hyperactive (mentally or physically). Zonisamide can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert. Do not stop taking zonisamide without first talking to your doctor, even if you feel fine. Stopping zonisamide suddenly may cause you to have seizures. You may need to use less and less before you stop the medication completely.

Doesn't sound like Zonisamide is for her.

I was on Dilantin and it made me numb and dumb.  I was a zombie on legs.

As for Lamictal, that has become part of my "magic med mix."  At its lowest level, it's for depression and anxiety.  At the next level, Lamictal is both an anti-anxiety AND anti-seizure med.  And at its highest level, it's for bi-polar people.

My Lamictal is supplemented by Klonopin which is also an anti-anxiety and anti-seizure med.

And to be perfectly honest, my husband was thinking of leaving me because I was such an ornery bitch.  (That was befoere Lamictal and Klonopin.)  It's like you spin out of control, lashing out at anyone who comes across your path.  And for you, it must be especially horrible.

If you want to get some background on the diagnostic tests avaiable you can goto  http://epilepsytalk.com/2010/03/31/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy/

Take heart.  Things WILL get better.  She just needs to be properly diagnosed and find the med mix that's right for her.  It isn't easy finding the right AEDs because there's so many on the market now.  So, it's sort of like a crap shoot.  But try to be patient, she WILL come around.

Best of luck to BOTH of you!     Phylis Feiner Johnson   www.epilepsytalk.com

Re: My wife, epilepsy, and abnormal behavior - My Perspective

Submitted by Seth83 on Sun, 2011-04-24 - 00:53

I found your entry very touching, and I can relate to the anixety and new found worry for myself that comes along with being with someone with epilepsy.

 

Ive had my bad share of relationships but have finally found the girl of my dreams.  I didnt really know anything about epilepsy except that my mom had seizures as a child but outgrew them.  I am 28 and my girlfriend is 25.  Ive experienced a few of her seizures and already read up enough on them to be able to take care of her when she has them, though a few times I havent been able to catch her in time and feel horrible when she falls to the floor.  They dont last very long, not even a minute, and she recovers quickly just a little woozy.  she hasnt had a "bad" one in two months, ive never seen one but shes out for a few minutes and has abnormal behaviour for about 30 minutes, such as screaming profanities, running away and hallucinations.  All that she has no memory of once she recovers.

 She is confindent that she will not have epilepsy forever.  I do believe it is a matter of finding the right med mix, since she has yet to have a bad seizure with running fits or screaming since she has been on her new ones.  I love her very much and am constantly worried about her, I dont even like to think of her climbing up the stairs at her house.  But I know I have to be as strong as she is about this so we can both find the answers.  I wish the best of luck to you.

I found your entry very touching, and I can relate to the anixety and new found worry for myself that comes along with being with someone with epilepsy.

 

Ive had my bad share of relationships but have finally found the girl of my dreams.  I didnt really know anything about epilepsy except that my mom had seizures as a child but outgrew them.  I am 28 and my girlfriend is 25.  Ive experienced a few of her seizures and already read up enough on them to be able to take care of her when she has them, though a few times I havent been able to catch her in time and feel horrible when she falls to the floor.  They dont last very long, not even a minute, and she recovers quickly just a little woozy.  she hasnt had a "bad" one in two months, ive never seen one but shes out for a few minutes and has abnormal behaviour for about 30 minutes, such as screaming profanities, running away and hallucinations.  All that she has no memory of once she recovers.

 She is confindent that she will not have epilepsy forever.  I do believe it is a matter of finding the right med mix, since she has yet to have a bad seizure with running fits or screaming since she has been on her new ones.  I love her very much and am constantly worried about her, I dont even like to think of her climbing up the stairs at her house.  But I know I have to be as strong as she is about this so we can both find the answers.  I wish the best of luck to you.

Re: My wife, epilepsy, and abnormal behavior - My Perspective

Submitted by Matt74 on Sun, 2011-04-24 - 22:24
Her mood issues are not at all surprising. The epilepsy is wreaking havoc with her nervous system. The meds are probably causing all sorts of problems. She also has all of the normal emotional reactions that anyone might have. Her meds are not working well enough, if at all. What she is going through is perfectly normal. It may be a rough time ahead until she gets on some meds that work, are at the right dose, and until she is used to or over the worst of the side effects. It sounds like you did the right thing with getting her better help, and that your doctor is checking things out like he should. I would highly recommend seeing an epileptologist. If the meds aren't working out let them know, and if they won't change anything get another opinion. When I was a kid and developed epilepsy I got so frustrated or angry I thought that I would blow up from the inside out. I still sometimes am almost overwhelmed. Now I know what it is and how to deal with it, but it's still tough. It's not just me getting mad, it's that I have some neurological and chemical reaction caused mostly by the meds, but also by the epilepsy, and it is hard to handle it. There is no essential difference between a seizure and an aura. An aura is a mini-seizure or the beginning of a seizure. Her behavior before the seizure is a part of the seizure. I don't know if this is part of her "bolting for the door". I used to go to the bathroom to stand over the sink when I had complex partials (I was drooling). After a while it became almost compulsory. I had to force myself to stop because it was getting dangerous. You might think this is silly, but I had a cat that got old and sick. Just before we had to put her to sleep (she had stopped eating), she was having seizures not too unlike mine. Before she would have them, she would run off as fast as she could, sometimes running smack into things pretty hard. I think that in addition to being scared, some seizures may cause a "flight response". If the seizures affect your wife's cognition, she may not know what is going on. That's scary. Even with a light partial seizure, it takes me 15 to 30 minutes until I am entirely in control of myself and totally aware of my surroundings. Don't let her hurt herself, but it may be ok when she is coming out of one to let her go out of the room as long as you keep an eye on her. You have to be careful about getting up after a seizure. I am always dizzy. I have periods where I will get depressed, desperate, tired, and just overall miserable for a few days to a week or more, and then , it will be gone. I think it is low level seizure activity (I have auras all the time). When she has a seizure don't fight it. Try to get her somewhere safe and to sit or lay down. The only thing you can do is turn her on her side if she is salivating a lot, so that she can breath. Don't ever shake her or restrain her. She is freaking out and you are stressing her out (maybe even hurting her, although that is not your intention). If talking to her helps do that, but be gentle and warm. Having a grand mal is terrifying (If you think she scares you, try it yourself!) I always wanted someone to be there for me and talk to me, comfort me etc. Try to calm her down, or at least don't do anything to make it worse. Stress=seizures. If she bites her tongue again, mouthwash helps A LOT to take the pain away and encourage healing. It may burn awful for a few seconds, but after that your mouth feels so much better. Some people claim that fighting the seizure can help, but for me I find that accepting it and trying to relax makes it less severe. Your wife is the same person she has always been, it's just that she has a lot of problems (more than you do). The best thing you can do to help her is be strong, caring, reassuring, and more than anything else forgiving. When she is not having a seizure her emotions and behavior are really hard on her too. She will have to try very hard to control what is going on inside her, to see it objectively, and not allow herself to act accordingly. It's easy for it to start with something that is not really under your control, and then let it grow and develop into something that really is your fault. She will learn with time, and you will get better at understanding. She has to make the decision to control the mood issues, but you can help with this by always being there. The fact that you are looking for answers shows that you want to help and that you care about her very much. Like anything else, people who don't have seizures can't understand what it's like (obviously, because they just don't have seizures). It's really tough not being able to drive, being stuck in the house, feeling horrible, always afraid of having a seizure, feeling useless. The worst part of it is how isolated you feel. Being unable to work is especially bad, because you spend so much time alone doing nothing and in the same place all the time. You tend to loose your objectivity. I need positive people, or just general distraction, to bring me out of my self-pity. I am doing pretty well and am not having any seizures, but for the most part I can't go anywhere I can't walk. I can't see friends, do things, etc. I am glad that I am doing as well as I am, but there are a lot of challenges. I am really blessed to have a job that I can walk to! Your stressing out is also normal. I suppose you both have that in common!

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