Boyfriend Has Seizures

[xMirabelle]

I just want to go ahead and apologize right now, because I foresee this being a VERY long post. This is all very new to us.

In order to provide a more accurate background on our history with his seizures, I'm going to go ahead and provide my "journal entries" from each seizure. This is what will take the most space. I just feel like I need to let everything out, so if you don't feel like reading it all, that's fine. I just need to get it out there.

1 February 2012
Kyle had a seizure while we were taking a nap in the middle of the day, around 1130. I got up to go to the bathroom when I heard a noise that scared me. I ran back to our room to see if he could comfort me when I realized it must have been him that made the noise. He was on his left side and his body was locked up and he was convulsing. His eyes were open and his face was very red. He was not responsive. After his body stopped being locked up and he stopped convulsing, he tried to put the blankets back on and go back to sleep. He was not aware of my presence and was still unresponsive. He was pretty confused when the paramedics came and couldn't remember what day it was. He also could not remember that we had already been up that morning, gone to my class, then came home and ate before taking our nap. After I told him, though, he did remember.

Within the past few months, he has had uncontrollable tremors at night that he says feel like an adrenaline rush. He can still move and is still able to talk to me.

Twice within the last year or so he has picked me up from work and shown me that he has bitten the inside of his cheek really hard. He said it happened while he was taking a nap and that he didn't notice until he woke up and there was blood all over his pillow.

Often, he won't make sense for about the first half hour after he wakes up from regular sleep.

Ever since he can remember, at night every once in a while, things feel and sound really far away even though he knows they aren't.

7 June 2012
Kyle has had another seizure. He came to bed around midnight, midnight thirty (about 45 after I went to bed). I awoke at 0137 when I heard a strange and scary noise. It was Kyle. As I oriented, I could hear him making strange noises like the last time he had a seizure. By the time I flicked on the light, he was already falling off the bed. He hit the left side of his head, just above the temple, on the night stand; however, most of what he hit was his shoulder. (He now has a nasty bruis in the shape of the corner of the night stand and a red line on his head.) I moved everything out of his way as best I could while he was still having his seizure. It was very scary since, this time, his ears turned blue. It didn't last but about 30 seconds to maybe a minute. He didn't wet/soil himself. He tried going back to sleep but was still shivering and I wanted to make sure he was okay, so I tried talking to him as I shifted him onto his side. I was also very nervous since this was only his second seizure that I was aware of, so I tried calling his mom (who is a nurse) to see if I should call 911 (the only reason I didn't call right away was because he started breathing again fairly quickly and was told I didn't need to call every time). His neurologist was pretty vague about when I should call or when I didn't need to and I was uncomfortable with just waiting around. Both Kyle's parents were sleeping and didn't hear their phones, so I called 911 by 0145-0150. The dispatcher assured me that they could send an emergency rescue team to check on him and he wouldn't necessarily need to be transported, which was a relief since I knew once Kyle came around, he'd worry about the costs associated with getting medical attention. The police officer arrived shortly thereafter (after getting a bit lost in the apartment complex) and Kyle finally started to come around. The team arrived moments later and checked him out and deemed him okay...and also made him take his Keppra. I'm not sure, but I think they may have missed the red mark on his head as it didn't show up unti later and until I saw the mark, I wasn't certain he'd hit his head. I made sure to keep him awake for a little while just in case. I made him some macaroni since was feeling naseous after swallowing blood – he bit the inside of his right cheek while he was seizing.
It was scary when I asked him if he knew who I was and he shook his head and said, “No. I don't understand.” I was terrified that he wouldn't come around and remember me.
Anyway, since his last seizure, he was prescribed Keppra (500mg) that he's supposed to take twice a day. He's been to proud and a bit ashamed, so he has only been taking it once a day and every once in a while he forgets to take it at all. I make sure to tell him that I don't approve of this and that I think it's dangerous and selfish. He replies, “I just don't think I even need it.” Now he agrees he needs it and will be taking it exactly as prescribed. Also, he went back to staying up late after he gets off work at 11pm-12am. I think he has also decided to go back to going to bed as soon as he's home. I think he should make sure to work day shifts, honestly.
I am certain, now, that when he's bitten his cheek while napping when I'm at work, he's been having seizures. It scares me that he's had them when nobody's around. It scares me that he will probably have more when nobody's around. What if he really hurts himself? What if he doesn't start breathing again? What if he doesn't realize he's had one, drives somewhere, then has another? What if he has one when I'm around and doesn't start breathing again? Will I be calm enough to administer CPR? I know it's selfish, but I'm also really worried about myself. I still have GAD and even though I maintain myself well enough that most people don't know how severe it is, I'm a mess. I can't handle much stress. I still can't freakin' drive after my car accident six years ago. To make matters worse, I think I'm really going to have to be the main driver now. At least for the next three months. I just have soooo many things running through my head that I'm worrying about. I honestly, truly believe I'm on the verge of a mental breakdown. A real one. Then what? Anyway, it's 0615. I guess I better get to sleep so I can be awake enough to drive Kyle to see his neurologist if I need to today.

As you can tell, I have a lot of concerns. I'm also concerned about myself, to be honest. It makes me feel bad since it seems pretty selfish, but it's realistic. I have GAD (Generalized Anxiety Disorder). I manage it well enough that most people don't know how bad it really is, but it is very bad. This disorder has affected me in so many ways - one of which is that I don't drive. I'm absolutely terrified of doing so and haven't really done much of it in six years. This concerns me since, for the time being, he technically isn't supposed to drive for the next three months (as I stated in my journal). Potentially, he could be told that he isn't allowed to drive at all. What then? We live in the Midwest...public transportation isn't really that great.

 

[Silat]

Welcome to CWE!

Communication between you guys is going to be the most important part.
You're going to have to explain to him your issues and concerns, and let him voice his. Work together, and i'm sure you guys will find a middle ground that works for you both. And there's nothing selfish about you being concerned about yourself... so don't worry about that. Work together, compromise, and figure out something that works for the both of you!

I saw you noted that he's not taking his medicine as he's supposed to, and not taking it at all at times... That's a VERY bad habit to start and you should make sure he's aware of that. If he does that, he could easily have more seizures and then he'll be stuck in the rut of not being able to drive anywhere... it's a lot more of a hassle than it sounds, to be honest, and your anxiety of driving doesn't help that situation either.

I, too, live in the Midwest, and I agree that public transport is awful around here. Him losing his license is not going to make things easy for you guys... :/

Best of luck to the both of you, and feel free to post any more questions you may have

 

[xMirabelle]

Thanks so much! We do try to make sure to communicate very well. My best friend even suggested that if we make checklists for the event of a seizure, we might both feel better...even if we don't touch them.

Also, I've definitely been on him about taking his meds properly. Silly Dutch boys don't listen. After the one this morning, though, I think he's ready to start taking it seriously and doing as he's instructed.

He seems to think that since he's only had seizures while he's been asleep (that we're aware of), he should be fine to drive. This last time, he didn't adhere to the 90 days w/o driving rule. Even though he's back on board with taking his meds and trying to get to sleep at a decent time, he's still adamant that he's okay to drive. Should I insist he doesn't? Or is this something that I need to concede? Also, if he WERE to get pulled over for anything, if they see that he's not supposed to be driving, I'm sure he'll get a hefty fine.

That also brings me to my next question. Just because it seems as though his seizures have only been while he's been asleep, does that really mean that they won't happen while he's awake? In which case, perhaps it's best he doesn't drive at all.

 

[Silat]

It really sucks to say this, and I wish it were different, but he needs to stick to the rules. No driving until he's cleared, and taking his medicine as he's been told. Plus, you're right, if he's not supposed to be driving and he gets busted for it... that's a big problem.

Consistency is crucial, it needs to become a habit and he's going to have to learn that, and hopefully soon.

Seizures are triggered, so yes, he could possibly have one while he's awake. There's also different kinds of seizures so it's possible he could have other types and not be aware that they're seizures. I'd suggest reading up on the seizure types... but if you don't have a lot of time here's a brief description of them:
http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

 

[MomThreePointOh]

I think over the last year most of mine have been while I was sleeping, until recently. I took my own license away (literally, so scary)... do everything you can to keep him on board - because you honestly never know when it'll happen next. Well, some people know. Unless you're like me and have not a clue until after you wake up from a. the seizure or b. the long nap after the seizure.

 

[xMirabelle]

Thanks guys! Yeah, I think I'll have to insist that he doesn't drive for the next three months. We'll have to come up with a plan for if/when I have an anxiety attack and can't drive. Also, we'll have to make sure to buy parking passes now. Haha! (We've gotten away with not buying parking passes for work and school since he can just drop me off.) It's funny the things you don't think about until you have to start readjusting your life.

@MomThreePointOh
I think he's had them before and didn't know it. I would be at work and when he would come to pick me up, he would show me that he bit the inside of his cheek really hard while he was napping. He told me it didn't wake him up when he did it and he never knew it happened until after he woke up from his nap. When I saw him have his first seizure and try to roll over and go back to sleep, it pretty much confirmed it for me.

Even as I write this, I should be joining him in bed and getting some sleep, but I'm too scared. I know that me staying awake isn't going to keep him from having a seizure, but every time I close my eyes the scenes play over and over again.

 

[MomThreePointOh]

And it's funny, I *have* been diagnosed with panic-anxiety attacks but can note the difference between the three. It is a huge life adjustment... I am still adjusting to the seizures even though I've had them so long. Maybe because the tests I had before all came up negative, when I clearly have them... like I want the doctors to say, "Yes, JB, you do have seizures... here's a sticker."

 

[Silat]

Well, you are right. Worrying yourself is just going to exhaust your own energy. I realize how bad the anxiety can be, but the sooner you accept that this is happening, and make the decision to do what's gotta be done, the better you'll be and the easier this will all become.

 

[xMirabelle]

I do have another quick question. Have either of you heard of a type of seizure where a person just makes NO sense when they wake up? I assume it's just him coming out of sleep, but sometimes when he wakes up, he'll make zero sense for sometimes up to 10 or 15 minutes. Also, sometimes he's been awake for a good 20 to 30 minutes and he still won't be "awake" enough to make sense. I just want to know if it's possible for this to be related to seizures.


|edit|
Probably I'll stop asking questions and try to wind down and get some sleep now. I have a test in the morning!

Thanks so very much for all your help, understanding, and listening. It means a lot to me and I'm happy to be a part of this site.

 

[Silat]

That's exactly how I am post-seizure. Sometimes it'll last 30 minutes... other times it'll last days. It really depends on the person and the seizure itself, so it's hard to guess how long one will be in that state. It's temporary though.

Think of your computer crashing. The seizure is the crash, and the post-seizure state is when all the systems are starting up and loading before you can use the computer. That's the best analogy I can think of right now to explain it.

I think it's called the post-ictal state... but I'm sleepy and remembering official terms has never been a strong point of mine.

 

[julie wishes]

Mirabelle you are so sweet to care so much for your boyfriend. Give yourself credit for all the things you are doing right that seem to come so naturally to you. Im glad you posted and let it all out. You will feel a little better now that you reached out. I think you two sound like a good team, and will be able to work this out. Keep it simple and pick a few things to work on at a time. Maybe clear his side of the room of hard objects, just in case, so you won't worry about further injuries. Stay strong girl... you have already done so many excellent things to help your boyfriend despite your own issues with GAD.

 

[xMirabelle]

Also, just to clarify, when I say he's like that when he "wakes up", I mean from regular sleep...or what we assume is regular sleep. He want have had any convulsions, rigidity, etc. But he still wakes up and doesn't make sense.

 

[xMirabelle]

Thanks, Julie! It's funny you mention clearing his side of the bed. As soon as he went to sleep (on the couch) after his seizure this morning, I went in and moved his bedside table into the closet. Ahaha! He never uses it for anything anyhow, so I figured he wouldn't miss it.

 

[Silat]

Also, just to clarify, when I say he's like that when he "wakes up", I mean from regular sleep...or what we assume is regular sleep. He want have had any convulsions, rigidity, etc. But he still wakes up and doesn't make sense.

Does he have sleep apnea?

 

[xMirabelle]

Does he have sleep apnea?

Not that we're aware of. Also, he jerks A LOT in his sleep sometimes. I know some people can be pretty twitchy, but he does it really often. It's like when you're dreaming and your body isn't keeping itself paralyzed well enough and you jump or move. Sometimes he'll even kick or yell. Then I'll pat him and ask if he's okay and he mumbles "yeah" and goes back to sleep. That's something else that I can't tell if it's just the way he sleeps or if it's somehow connected.

 

[xMirabelle]

G'night everyone! I'll check back in tomorrow. I had better get some sleep since I didn't get the chance to study.

 

[Silat]

If he's got insurance and is seeing a doctor... he may want to set up a sleep study. They'll attach an EEG and moniter his sleep. It sounds like this is a common thing for him to do, so they shouldn't have any problem recording it happen during the sleep study.

And, that should give you at least some of the answers you're looking for, and if not it'll put you on the path to finding the answers you guys want.

 

[Nakamova]

Hi xMirabelle --

There are all kinds of seizures, including kinds that just involve twitching or jerking (called myoclonus), or ones where the person is saying/doing things that they aren't fully aware of (called complex partials). There are also ones where someone just blanks out for a few seconds (called absence seizures), and ones where they are conscious but may have a strange sensory disturbance (called simple partials). The "classic" seizures with convulsions and full loss of consciousness are called tonic-clonics or grand mals.

So your boyfriend may be having more than one kind, something that his neurologist should be informed of. As Silat mentions, a sleep study might be helpful to catch what's going on.

In your initial post, you mentioned that you were worried about what to do if your boyfriend has a tonic-clonic seizure. For the most part, while they look scary and are stressful to the body, they aren't dangerous. Here are the general "rules":

WHAT HAPPENS IN A TONIC-CLONIC SEIZURE:
The person goes stiff, loses consciousness and then falls to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely (and normal -- this is due to irregular breathing.) Loss of bladder and/or bowel control may happen. After a minute or two the jerking movements should stop and consciousness may slowly return.

DO:
-- Protect the person from injury - (remove harmful objects from nearby)
-- Cushion their head
-- Aid breathing by gently placing them on their side once the seizure has finished
-- Stay with the person until recovery is complete
-- Let the person know what has happened, and reassure them

DON'T:
-- Restrain the person’s movements
-- Put anything in the person’s mouth
-- Try to move them unless they are in danger
-- Give them anything to eat or drink until they are fully recovered
-- Attempt to bring them round

CALL AN AMBULANCE IF:
-- You know it is the person’s first seizure
-- The seizure continues for more than five minutes
-- One tonic-clonic seizure follows another without the person regaining consciousness between seizures
-- The person is injured during the seizure
-- You believe the person needs urgent medical attention

 

[xMirabelle]

So your boyfriend may be having more than one kind, something that his neurologist should be informed of.

He doesn't have insurance right now and although his neurologist wants him to make an appointment to see him next month, he won't do it since he was charged a whole bunch last time he visited even though he didn't get much feedback. I made sure to attend the last appointment with him (as I drove him) and let the neurologist know some of the other things I think may be seizures...which led the neurologist to go ahead and prescribe Keppra to him as a long-term thing. Do you suggest I prod my boyfriend to go ahead and make the appointment and reiterate to the doctor that he's having other symptoms that may be seizures?

DON'T:
-- Restrain the person’s movements
-- Put anything in the person’s mouth
-- Try to move them unless they are in danger
-- Give them anything to eat or drink until they are fully recovered
-- Attempt to bring them round

When you mention that I shouldn't attempt to bring him around I assume that means while he is seizing. Does that also mean that I shouldn't try to wake him or orient him after he has stopped seizing? Should I allow him to go back to sleep (since he usually tries to since he seizes in his sleep)? If he does hit his head in the process, should I attempt to rouse him from the post seizure sleep to make sure he hasn't received a concussion?

Also, I've been wondering about when he stops breathing. It's my understanding that I should only attempt CPR if he has stopped seizing and has not resumed breathing. Attempting to administer CPR while he's in a seizure, no matter how long it's gone on, will not only be ineffective as he's locked up and no air would get through anyway, but may also be dangerous for both him and myself, correct? If he's seizing longer than two minutes and not breathing, isn't he in danger of permanent brain damage? So I would potentially need to call 911 before five minutes?


Sorry for the barrage of questions. I just don't have a lot of knowledge on this and these are the sorts of questions that are plaguing me whenever I have a resting moment.

 

[xMirabelle]

One more question for everyone:
My boyfriend loves video games and has been playing one that he bought the other day. If the video game was going to trigger a seizure, it would do it while he was playing it right? Like, him playing the video game wouldn't make him have a seizure later on while he's sleeping, right?