First seizure after 8 years free

[AC_APT]

Hi everyone.

I've had epilepsy for 12 years, had been seizure free for 8 until a few weeks ago when I had a nocturnal seizure. Or at least I think I did, I had never had nocturnal seizures before. So I gained courage, since I hate to watch videos of seizures, and looked up nocturnal seizures on Youtube. Only had to watch one; it looked and sounded exactly like what I experienced.

I remember I woke up to the feeling of my aura, and the right side of my face felt like it was pulling or something. I tried to get up to call my my mom but I couldn't and next thing I know I was shaking and groaning and couldn't breathe (sounded EXACTLY that same on the video I watched -a groaning/ someone trying to take a breathe). It kept going and I honestly felt like I was going to die because I couldn't get one breath in, it felt like I was suffocating. Has anyone felt this too?

When it stopped I know I was groaning louder, trying to get someone to hear me as I couldn't move, but no such luck, everyone sleeps like a rock here. It was one of the scariest seizures have ever had.

Later when I woke up I realised I had wet the bed. So embarrassing.

I've been told by many they don't remember their seizures, but I always have. Even the very first one I had, I could hear my father asking for help, but I couldn't see, my vision had turned black.

I'm scared to sleep now, afraid I'm going to suffocate as I tend to fall asleep on my stomach.

My mom kept asking if it hadn't just been a bad dream, I told her I wasn't sure, but I was pretty certain it wasn't. I think she just didn't want to believe this was happening again after I had been so many years seizure free.

Thank you all in advance.

 

[Garbo]

I don't really have advice, but I just wanted to say I'm very sorry. I know that others will give excellent care, tips, and advice.

 

[Nakamova]

Sorry to hear about the breakthrough seizure. It may just be a fluke due to some unusual stress or change in your life. Have you let your neuro know? He/she may be able to give you some advice to help lessen your anxiety.

The groaning/breathing sounds scary but it's actually a normal event during and post-seizure. At the start of the tonic (muscle tensing) stage, there's often a loud moan, due to air forcefully expelled from the lungs. After the seizure, there can be gasping and heavy snoring sounds, usually caused when mucous or a relaxed tongue slightly blocks the airway. It's not serious, but it can go on a long time just because we're so exhausted post-seizure, and the body/brain need sleep.

BTW, might be worth having a sleep study down to see if there's a particular sleep issue that has come up that may have triggered the seizure. Do you have a history of sleep apnea or snoring? If so, that may be relevant.

Don't feel embarrassed about wetting the bed. It sucks, but it's common, and probably a one-time thing because this was the first (and hopefully the only) seizure after a long seizure-free period.

 

[acshuman]

Don't Worry!

AC APT,

You may have had a breakthrough seizure, but that is something a person w/E has to learn to deal with. The more you worry about having a future 'break through' seizure the more problems you may cause yourself. You need to accept that when a person has E there always is the chance that the E could change or occur again in a way similar to before the seizure-free times.
If a person has E they have to realize that any type of worrying that they allow themselves to do may cause their stress level to rise to a point where that stress level could activate their E.
This is why I have learned to accept my E as a part of my life just like breathing and my heart beating. Worrying about my E would cause me a lot more problems than accepting it does! :twocents:

acshuman

 

[redravin]

Sorry to hear about that.
I would certainly go in and talk to your doctor.
I have had dreams about having a seizure (only twice) but it was never with the kind of intensity that you describe.
As to the time span, your body changes and stuff happens.
I went for five years seizure then had a series of breakthrough tonic clonic seizures that gave me some impressive bruises.
When I went to the neurologist and asked why the change, she said that a similar question had been asked to a top professor in a class she took in college.
The professor's answer was, "People with epilepsy have seizures."
I really felt like I shouldn't have had to pay for that visit.

Seriously, don't panic.
This is a bitch, but it is just one thing to get through and you will be okay.