[Cedar]

I have had epilepsy since 8 and just always thought everyone did this. However, I began to wonder. When I start to have a seizures(simple) and in past(complex
I usually make noises, mostly are like cries out, as if talking but just noises come out. There are times when like I am in the shower, I will knock on the wall to get my partners attention. So I am curious if the noises are automatic, are they a learned thing to let others know we are need of support.

Would be curious to hear others experiences.

Happy Spring!

[Porkette]

Hi Cedar,
When I have a simple partial I usually have a nervous feeling in my stomach and then I start to see colors flashing back and forth in my eyes, this leads into a cp sz. I've never made any noises other than talking to others during a simple partial sz. but when I have a cp sz. I will smack my lips, and sometimes wander around. If I'm on the phone I always hang up on the person not realizing what I've done. Before I had my surgery I would always have sz. while in the shower especially when the hormones were changing. The hot water hitting my head is what caused the sz. according to my epi. There have also been times during a cp sz. when I will hear one word repeated over and over again even though nobody is saying anything. It's really strange. Here's wishing you well and May God Bless You!

Sue

[Darlene]

When I am going into one I usually moan and also stare up into the air. One other thing is when I am having one and someone ask me a question I hear, I form my answer but unable to move my mouth to talk. Also, like Sue, sometimes I smack my lips.

Darlene

[Ellie]

I have pretty obvious auras and can kind of settle myself down to attempt to prolong them and avoid a seizure until I get somewhere more cozy. Right before my seizure (when I'm falling) I'm still kind of awake, I just can't see, hear or speak. I try to speak resulting in a humming sound. Only once did I get to yell a "HONEY" before I hit the floor.

I'm still pretty sure I'm trying to talk when I do make sounds. I try my hardest to not have one. I know it sounds kind of stupid, but I'm really good at it.

I guess we all need a talent, that's mine!

[vodpop]

I whine/moan and the only word I am able to say is "water" for some reason. I always want to drink water during a seizure, it comforts me somehow. I find that when I'm sleeping or am in bed I hit the wall or the headboard and that seems to be how I wake up and I guess am trying to get my husbands attention for help as I'm unable to speak (cp's).

You're not alone in the noise making category or the hitting of something to get someones attention, looks like there's quite a few of us who do this.

Like Ellie, I try to focus on something really hard and it seems to stave off a seizure from developing too fast or into something really big and somehow it actually seems to work. I don't know how but it does.
stef