Hello :-)

[NicoleLake]

Well I am new here but really epilepsy has been a problem in my life for as long as I can remember, my first memory is from the age of 4 when I had my first seizure, which I still remember clear as day.

When I was younger I was diagnosed as having tonic-clonic seizures, and in every way what I did have seems to fit that description exactly, the only difference being I was always concious. I told the doctors this, but they could never tell me why. So this has always confused me a lot, how could they have been tonic-clonic seizures if I was always concious despite fitting the description in every other way?

I am now 17 and am seeing a psycologist to try and cope with a lot of the traumatic early memories of my childhood spent in hospitals and experiencing these extremely painful seizures which still haunt me. Despite no longer having the type of seizures I did before the epilepsy still causes a lot of issues.

So really anyone who could perhaps give me more insight into what kind of seizures I actually experienced as a child that would be greatly appreciated, since doctors really seem to be no help in that area.

Thanks

 

[Endless]

Hi, Nicole,

Welcome to CWE!

I don't remember who posted it in here, but he had a tonic-clonic and was aware of it, too. That was a new thing for him, and it freaked him out, too.

Am I reading right that maybe you are seizure free now? That would be FANTASTIC! Or, do you just have a different kind of seizure now?

 

[NicoleLake]

Hello

Yeah I heard of one other instance before were someone was concious once during the tonic part of the seizure, but not the clonic. I was always concious the whole way through, unless I fainted from lack of oxygen.

Well really not so sure what is going on with the epilepsy at the moment at the moment.
I do have some weird episodes which are like complete lapses in memory so one second I will be one place and then the next thing I know I am somewhere completely different and have no idea how I got there. Or if I am sitting in a lesson I often notice no matter how hard I try to concentrate I just tend to miss a lot of stuff.
Then also I get these kind of out of body experiences. So I guess just partial seizures now which although still annoying, is really great for me.

Anyway thank you very much for the warm welcome!

 

[RobinN]

Welcome Nicole - My daughter has the typical tonic clonic seizures. She does not have any awareness during the seizure at all. The only way she knows she has had them, is everyone is leaning over her and she is on the floor. She also loses memory for hours prior to the event.

The way I have been able to connect the dots and find ways to help Rebecca is to keep a very thorough journal. I hope you also find ways to improve your seizure threshold with increased knowledge. Here's hoping you will find the support you need here at CWE

 

[KelVarQ]

Hi Nicole and welcome. I used to have Tonic Clonics but since surgery I now have Complex Partials. I used to have bad memory lapses as well and some due to tonic clonics but some definitely due to simple partials. Sometimes I would lose a few minutes, a couple hours and even more. I recall one day waking up 10am and the next thing I knew it was 8p.m. Had no clue what I did the whole day but I didn't have a tonic clonic. As far as being aware of the seizure I've had quite a few experiences with Complex Partials where I'm totally aware that I'm in the seizure and I'm actually trying to shake it off or somehow get myself out of it and I know it's a weird thing to be aware of it and I never had that until after surgery and I know they freak me out. I can't imagine being aware of being in a tonic clonic and I would imagine that's a scary thing. Here's a tip though...if you press the philtrum (dent above the lip and below the nose) this is known as a rescue spot (pressure point) and should stop the seizure. I did it to myself a couple times when I was aware of it but usually my husband will press it but I don't like to use it much as it leaves with a bad headache afterwards. Sort of like the seizure wasn't completed and my head feels that. But it does seem to do the trick so if you get too scared during one give it a shot. Good luck.

 

[NicoleLake]

Hello everyone

Hello Robin, sorry to hear about your daughter, I personally never lost my memory during or after the event, I just remember being extremely confused, delusional, and paralysed down the whole right hand side of my body. When I was 6 I actually got so confused I tried to walk down stairs in the middle of the night on my own after a seizure with half my body completely numb, not a good idea.
Yeah my mum used to keep a journal as well, been trying to find it recently but I think it is just lost. But I am trying to keep my own journal now, not very successfully, I always forget about it.

Hello Kel, I have never heard of that before thanks, the philtrum I will remember that. When I was younger and I used to have the tonic-clonic’s, I actually used to try and keep my mind focused by aiming to grab my right foot I don’t know why it was really just instinct, like I knew once I grabbed it the seizure was over. But yeah it was really scary, especially when you cannot breathe; I thought I was just dying the first time it happened.

Anyway thank you very much everyone for welcoming me into the community