Wife's seizures are returning

[Hunter]

As the title says

She says she gets grand mal seizures.
Her last seizure was some time before she met me. I guess 3ish years ago? give or take, I'm not sure.

And lately (the past 4 months or so) she has been talking about how she feels one coming on. or something of the sort.

She had one today. It wasn't my first experience with a seizure. The first being a diabetic seizure my teammate suffered on a football team in high school.

But it was the first seizure i've seen her have and it was nothing like the diabetic seizure I saw in the past.

I think we handled it well enough but I've never been so scared for someone before in my life, and i've seen some scary stuff.

She was cooking breakfast and I came in to give her a hug. In the middle of the hug she made this "guuurrrr" sound a few octives lower then her usual voice. I mean, this came out of nowhere, she said later she didnt even know what happened until later.

But i laid her down in the kitchen and held her head so it didn't hit the floor. then I realized I needed to call an ambulance. I went and got the phone and had to leave her head banging on the ground till i got back.

By the time I got off the phone with 911 and the ems fellow who talked me through what i should do, she had stopped twitching and drooling. i guess 2 or 3 minutes, I didnt know i was supposed to time that stuff.

Its a very unsettling experience. scary for any party involved.

But what scared me the most was when she "kind of" regained herself.

She woke up and screamed in this super low voice, she rose up like she was doing a sit up with her arms sticking straight out like a zombie. Scared me so bad, I tried to ask if she was okay but all that came out was "aaajrrrrrhhrhh"

I look at that particular part now and its a little humor in a terrible situation. i cope with humor. She screamed, i screamed.

But seriously the most frightening part was after her twitching stopped.
I dont think she knew who she was or anything really. (Except that there were potatos on the stove) Which boggles my mind. It was a good 5 minutes of this loss of awareness ( I dont know what to call it) before the ambulance arrived. and about 5 more of trying to get her to calm down enough so they could get her blood pressure and stuff.

I can't really explain how she behaved. And I know it's not her fault or anything like that. It kind of reminded me of a super bad acid trip where you kinda forget who and what you are.

She was so scared. And I couldn't help. All I could do was let her hold me and rub her back. It breaks my heart. Its an emotional thing for me so forgive my typing and spacing and what not as it just happened today.

Here is what worries me the most

I'm a truck driver. I leave the house early sunday morning. I get back friday night.
And by the grace of god or some kind of luck she had it while I was home. Im so grateful for that. What if it happened while I was on the road 1000 miles away.

Its just her here watching the kids. She takes them to daycare. She does the grocery shopping. You know, everything. Just her and the kids while im gone.

I don't know what to do. I'm taking a few days off for now. They can kiss my big beautiful bottom if they want fire me. She needs me more.

I came here with questions but I really don't know what to ask. I know I can't really quit my job. If I get fired I can get unemployment while i find something close to home. I have to support my family. They're everything to me.

I told her earlier today when we came back from the er. r
"I'm going to call you every hour when i'm on the road. If you don't answer im calling the police for a wellness check"

I don't know if thats really necessary or not but i don't know what to do.

I need some perspective. Is it really as serious as I'm thinking?
That really rattled me today. And I don't think im being selfish thinking like that, correct me if im wrong please. It must be 10x worse for her.

Do we need to change our lifestyle to accommodate the seizures?
I don't even know if she'll have one again. She had just been off her medication for a few years.

And you know theres other problems that come with this too.
Can she keep driving after she gets on regular medication? (I guess thats not wise) Because i cant make it home every day. and im sure she doesnt want to stay in the house from sunday till friday
and probably a host of other problems I cant think of right now.

Im going to stop here otherwise I could talk about the same issue 100 different ways. Once again, forgive me for my rambling. I needed to talk about this. Almost kept going again...

Any advice is must appreciated.
Thank you, Hunter

 

[valeriedl]

First I would suggest going to a dr. She could need to be put back on meds. Were the only type of seizures that she ever had were grand mals or did she have other types too? When she says she feels like she has a seizure coming on it could be a simple complex. That's what I have sometimes before I have a partial complex. During the simple complexes that I have I'll sometimes be sort of light headed, have trouble focusing on things and other sorts of 'I don't feel rights'. It's really hard to describe things to someone who don't get them.

I normally only have simple and complex partials. I tried to describe a simple complex and during a complex you usually black out. You may get up and walk around and try to talk or you may just sit in one spot and stare into no where. They aren't like a grand mal when you shake.

I can't even begin to imagine what it's like for someone to watch someone else have a seizure. When I'm having it I have no clue what's going on, I usually don't even know that I'm having the seizure. The first seizure that I had with my husband was a complex partial and it scared the crap out of him.

When I'm alone I really don't like to cook on the stove or in the oven. I have had seizures while I'm doing this and burnt things. Luckily my husband was home these times and able to catch it before it went into a fire. If I'm alone I usually only use the microwave or toaster. I'll cook when there's someone here then heat up the left overs when I'm alone.

You have to go 6 months seizure free before you can drive. If you're behind the wheel and have a seizure who knows what will happen. It's hard that I can't get around on my own but I have family who is usually able to take me places. It may no be right when I want to go but we try to make each others schedules work.

It has to be hard for people to leave the person with epilepsy alone. I'd send my husband a text message to let him know that I'd taken my meds, he can't make phone calls where he works. If he does get a chance to call he will see how I'm doing.

I live next door to my family and I do spend a good bit of time with them when he's not home. I'm ok being in the house by myself though.

Do you have any family, friends or neighbors who can check in with her?

 

[wants2know]

Hunter, my heart goes out to you as my husband and I are coping with similar concerns. I've been having seizures since June and just started meds. I can't drive until December and only if I'm seizure free until then. Our kids are 14 15 and 5. We have had discussions about what to do if I have a seizure. One son insists he is calling 911 no matter what, which is fine with us if it makes him feel safer. The kids and husband are all quite paranoid right now and check on me often if I'm not hears from... it's cute but also stresses me a little as I don't want life to change anymore than it needs to. Do you have a relative who could stay with your wife for a bit while her meds get regulated? Or a friend? Maybe cook dinners on the weekends and freeze them so there isn't any stovetop cooking for a while. You might be able to take a family leave for a little while while she can't drive. Best of luck... hang in there!

 

[Hunter]

our kids are 2 and 4, i dont think we could teach them to use the phone and dial 911 yet but we'll try.

But you guys hit on our problem there. We moved last year and are a few hundred miles away from family.

I'm taking some leve, and I think what well happen is i'll find a job in town somewhere. With a paycut. But I think her health is more important then money.

We got her 20 days worth of Levetiracetam, that outta hold her out until we can get her a new neurologist and get her info faxed over.
For the most part I was just upset and needed to vent yesterday. Its really not as bad as it seems.

As far as how she behaved after the seizure, she told me her doctor told her she suffers from short term amnesia after a seizure. (She doesn't remember that part (ha))so... that explains that i guess. And yes, she said its just grand mals.

And thank y'all for talking about this with me.
Our best wishes go out to all of you guys with these problems too.

 

[Cint]

our kids are 2 and 4, i dont think we could teach them to use the phone and dial 911 yet but we'll try.

Yes, you could teach a 4 year-old to dial 911. Kids are very resilient. I have two now grown kids and my seizures started years ago when they were very young, before they were born. Plus I was married to a pilot and we live 1300 miles from family. One morning I had been sick and my husband was out on a flight and while getting my child ready for school, I went into a tonic-clonic (grand mal) seizure. I had taught them how to dial 911 if they ever saw mommy go into a bad seizure. My daughter at that time was 6, my son was 3. They were scared when the EMT arrived, but the neighbors were there to help and knew what to do, too. So in situations such as yours and mine, you take that extra step and do what needs to be done, teach the kids to dial 911. And call the local Epilepsy Foundation for more support.

Go to this website, explaining what to do during a seizure:
http://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures

 

[wants2know]

I live thousands of miles from family as well. I'm fortunate to have a church and community of friends like can rely on for rides and assistance. People check in on me, and if I'm not feeling well I have a close friend who comes to stay with her kids. It's not fun or easy. I need to plan ahead more than I used to. You will figure it out, it will take time and stressing yourselves out won't help. Good luck.

 

[Formyson2]

Hunter, You will figure it out. I have a son who has started having seizures. It is scary scary scary at first, then you adjust and know what to do and mostly what to expect. They do sometimes throw us bystanders a curve! Less money is worth being close and available for those you love. Don't press yourself to have all of the answers in a day or a week. It takes time to figure it out. Keep hanging in there and take it one step at a time. And feel free to rant and freak out here. I have done my share. CWE has been a mental life saver for me.