New Member

[brain]

Hadley!

Welcome to CWE! Sorry for missing out
on you! (*blush*) You can whip me!



I have nocturnals and two things:

1) If tonic-clonic, the only thing you would
hear is the crashing of something that I
had plowed into (i.e.: lamp, alarm clock, etc),
or you've heard me bang myself into the
nightstand, headboard, or something.
But the only SOUND you would hear from
me would be either gasping for breath or
the labored breathing after the seizure
was over.

2) If it was a complex partial - which could
be mistaken for 'sleep walking' but it's not
for I'd be running into everything! The
wall, door, chairs, tables, et cetera, and
collapsing on them - the noise itself will
awaken my entire family and it will not
take long for it to generalize into a tonic-
clonic.

============

Of interest, all my nocturnal tonic-clonics
are silent, with the exceptions of the
breathing.

However in the past, in the rare daytime
tonic-clonics, like I said, are rare; my (ex)
husband and son had reported there would
be this strange cry, more like a yelp, a
combination of inhaling and exhaling at
the same time? That was their description.
Before the seizure started immediately.
But such cry was very weak and wasn't
very loud, my son told me it was like a
puppy that whimper yelped, and I'm not
sure exactly what a whimper yelped is -
but of course he was little back then. My
(ex) husband would imply that it would be
like someone had 'knocked the wind' out
of me.

However I have no memory of this at all,
majority of the tonic-clonics I've had are
silent.

[paradise survivor]

Once, when I had a really long event, I actually remembered 'waking' to my own voice screaming in terror (I didn't recognize my husband of almost thirty years) but the really odd thing to me was that no one else in the car heard me. It was a small car, I was a little confused by that.

[BuckeyeFan]

... that I grunt or gasp, kinda like all the air being forced out of my lungs. Nothing actually verbal, unless I call out for help while still in the aura stage.

Been awhile, hopefully never again.

[skillefer]

Hi Hadley! Welcome to CWE. Hmmmmm....Your son went med free for 4 years and seizure free for 6 till just recdently...sounds like ( and this is just personal opinion based on my own personal experience) your son might be going through puberty. When I started going through puberty I also started having seizures...again. I had been seizure free for about 8 years and med free for 7 years. My first one happened while playing dodge ball in PE. I went blank, walked to three different spots in the gymnasium, and puked my guts out. Needless to say, I didn't get hit by any balls.
I give this advice to all parents. Try to have a sense of humor. The way my parents responded to my seizures impacted how I felt about myself, as well as the seizures. My mom always was panicky and worried. When she responded, I always felt guilty for having the seizure. My dad on the other hand reacted in a laid back, joking way...and when he responded, I didn't feel bad about myself at all. So even though the seizures are terrifying to watch (I've watched someone go through a grand mal....not pretty.) try to relax. And just remember, we're here for you, and your son. So feel free to ask any questions.

[Hadley]

Thank you so much for all of the information. You are exactly right that he is going thru puberty. I usually do pretty well with the seizures...unfortunately we are used to them, and try to be optimistic and upbeat when he comes out of them. I simply ask him to say something, anything, just to let me know he is ok, I smile at him, and he goes back to sleep. One problem that I have encountered, thus far, is that with the school year coming to a close, they are taking LOTS of field trips. He tends to sleep on the bus and has been known to have them during a nap. I always call and talk to the teacher responsible for the trip, just to let them know that it is always a possibility of a seizure, and always encourage my son that things will be fine. He always tells his friends he sits by...now if I go to sleep and start doing something weird, just let the teacher know and after a few seconds, I will be fine. I always worry about him being embarrassed of everything he has been thru, even though I would never say that to him, and Lord knows I have NEVER been embarrassed of my child for anything he has done...even the blue hair and the skull and crossbones HUGE earring! I have always tried to teach my kids that there are people that are different when it comes to handicaps and things of that nature, but that they are no different than we are when it comes to feelings and emotions. They both "beat to their own drum" and could care less about what people think of them. I honestly couldn't be more proud of them, so maybe that is where he gets that he doesn't feel sorry for himself, or that he isn't different. I am so thankful for that.

[RobinN]

I give this advice to all parents. Try to have a sense of humor. The way my parents responded to my seizures impacted how I felt about myself, as well as the seizures. My mom always was panicky and worried. When she responded, I always felt guilty for having the seizure. My dad on the other hand reacted in a laid back, joking way...and when he responded, I didn't feel bad about myself at all. So even though the seizures are terrifying to watch (I've watched someone go through a grand mal....not pretty.) try to relax. And just remember, we're here for you, and your son. So feel free to ask any questions.

This is understandable but I think it really matters how the person dealing with the seizures wants to be treated. If Rebecca's dad joked about it she would be really upset. I know she doesn't really like when I talk about them too much, so I do have to monitor what I say and how much I think outloud.

I just want to say that this worked for you (and perhaps for others) , but not for everyone. We need to be sensitive to the needs of the one having the seizures, and ask how they would like to be treated.

[skillefer]

Hi Robinn! I totally agree. Each person is different and reacts differently.

[CJR]

What's worked best for my girl is CALM. I had to ask my husband to leave the room because he was so agitated that she was picking it up from watching him. He went out of her line of sight and she was able to see that I was calm and could smile at her. She then was able to calm herself down. Once he "saw" the change in her he was then able to reign in his own fears. However, no matter how we handle ourselves on the outside every parent is filled with the fear, panic, and worry. After all, it's the love of your life...your child...having a seizure! If you don't feel panic at that then you're a robot!

I've found myself saying things like, "Hey there. You're doing okay. Everyone's alright." because she seems overly worried about everyone else when she finishes a seizure. My son, though, stays calm through and after her seizures but later he tends to sleepwalk and be extremely jumpy to normal thump & bump sounds. So for both of their sakes I do something "special" to take their minds away from the seizure and give them something happier to think about it. Such as Karaoke night or Movie time with air popped popcorn (they love that machine).

[BuckeyeFan]

I agree that everyone is going to react different. I also think that each seizure may bring on a different reaction. I have been lucky enough to have had more at home than in the public. The public ones bring on the embarrassment factor and the wonder of what did I say. At home with my wife, I at least feel like I am in a safe zone.

[tinasmom]

Glad you found this site Hadley -

I am sorry that your son has started having seizures again after being seizure free for so long. Has he started to go through puberty yet? If so, could this be related to puberty? If you haven't talked to your doc about this, you might want to bring this up.

The first time that Nicole, my granddaughter, had a seizure, she kept looking at me and repeating through the whole seizure, "Nana, I'm scared." It was very audible at the beginning, but as the seizure progressed, it became more mumbled and all I could understand was the word scared. I felt more helpless than when Tina (my daughter) had seizures because she had never said anything about being scared, although she would mumble sometimes. This really concerned me, because Tina never said anything like that during a seizure. Although one time during a seizure, which was totally different than her usual seizures, she was walking around and picked up one of the puppies we had and threw it across the room, then she she collapsed on the floor next to a chair and my husband had to call an ambulance because he could not get her up. Tina (my daughter) loved animals very much and would never have thrown a puppy across the room. We did find out that this episode was caused by one of the meds she was on. It not only caused her to do things that she would not normally do, she could not balance or focus.