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.
Re: My wife, epilepsy, and abnormal behavior - My Perspective
Submitted by PaulThomas on Sun, 2011-07-17 - 14:51
Wow, you are in the early stages of this. I went through what you went through. Do not get caught up in the storm of the manic behavior. In order to survive, at times you will need to detach emotionally in order to think logical. Find a good doctor - that is you best bet.
If you are not getting results from one doctor - switch to another one. It is an experiment for awhile until you find something that might work.
I figured I have been married to my wife over 20 years and the pain her health situation put us through has probably taken another 20 years off our lives. We only have so much in us to take care of another person so you cannot get tangled up in energy drainers. If it is not working - move on.
Like I said, find a good doctor. If medication "A" is not working -- move on. If medication B is causing too many side effects -- move on when you find another one. I suspect all medications have side effects. If her behavior is causing problems financially - isolate your finances from her. If behavior is causing dangerous situations - you will need to be firm and step in to stop the behavior. You will need family and friend support. If they do not support you - move on - this is not some stupid emotional game here, but a real problem and they are obviouslly too stupid to see it as such. I personally did not have family support in the beginning from my family. So I let my wife live with them for a season. Now they believe me and support me.
You have got to make strong decisive decisions in this situation. Like I said, if it is not working - move on to something that is working. One it is working - don't tinker with it (i.e. her medication).
So far, my situation is repaired to a tolerable level, but it has its manic days with I loathe, but we are surviving at this point.
Wow, you are in the early stages of this. I went through what you went through. Do not get caught up in the storm of the manic behavior. In order to survive, at times you will need to detach emotionally in order to think logical. Find a good doctor - that is you best bet.
If you are not getting results from one doctor - switch to another one. It is an experiment for awhile until you find something that might work.
I figured I have been married to my wife over 20 years and the pain her health situation put us through has probably taken another 20 years off our lives. We only have so much in us to take care of another person so you cannot get tangled up in energy drainers. If it is not working - move on.
Like I said, find a good doctor. If medication "A" is not working -- move on. If medication B is causing too many side effects -- move on when you find another one. I suspect all medications have side effects. If her behavior is causing problems financially - isolate your finances from her. If behavior is causing dangerous situations - you will need to be firm and step in to stop the behavior. You will need family and friend support. If they do not support you - move on - this is not some stupid emotional game here, but a real problem and they are obviouslly too stupid to see it as such. I personally did not have family support in the beginning from my family. So I let my wife live with them for a season. Now they believe me and support me.
You have got to make strong decisive decisions in this situation. Like I said, if it is not working - move on to something that is working. One it is working - don't tinker with it (i.e. her medication).
So far, my situation is repaired to a tolerable level, but it has its manic days with I loathe, but we are surviving at this point.