Me and why I'm here

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lorryanne

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Hi All

I'm new to this forum but not new to epilepsy. 40yrs+

I'm 45. DX with Left TL CP. at about age 14. Had been having them as long as I can remember but how does a five year old explain de ja vu or lilliputhian (sp). "Mommy everything is funny?." moms answer "Just go outside and play".

My seizures changed to secondary generalized during my second pregnancy in my mid 20's

I usually average seizures every seven weeks.

My seizures have only been contolled on two occassions by meds for 6 months each time, but sadly the side effects were so sever I had to stop taking them. Keppra was the worst for me.

I have been an dilantin (for the third time) for 4 months now and have been seizure free. YAH. It is strange because dilantin didn't work for me before.
I'm thinking maybe it is hormone level changes from menopause that has stopped the seizures not dilantin.

Anyway that's my story (very short version)
I like reading other peoples ideas no matter how unusual some might seem.
I like to help others by making suggestions.
Sometimes my theories may be a bit far fetched but if your anything like me you will consider all posibilities in the hope of stumbling onto a cure.

Lorraine
 
Welcome Lorraine

You've found a nice bunch of folks here. You mentioned lilliputhian. Can you explain this to me, please. I think I know what it is.
 
Hi BB?

You asked if I could explain lilliputhian and by your post I assume you have probably experienced it yourself.

There are different types. The one I used to experience as a child and teenager was a vision of things being small but large, close but far all at the same time.
It is hard to describe and if you haven't experienced it, even harder to understand. Like trying to describe a 3D picture to someone. They wouldn't understand it until they put on the 3D glasses.
I found it very frightening as a child in bed at night but as a teenager it was amusing to watch the teachers head changing size.

From the information I read on the net there are several sub types so if you google lilliputian syndrome you will probably find more info on the other types.

I found out recently this can be caused by epilepsy but it can also be caused by childhood illness/fever and mono/glandular fever.

Lorraine
 
OMG! I have seen that stuff all my life! Sitting in class and watching the teacher's head shrink! Reminds me of the movie Beetlejuice! When he's sitting in the waiting room and steals the headhunters number and the headhunter sprinkled a magic dust on him and his head shrunk.

Or watching the dimentions of a room change into impossible angles and sizes.

Seeing stuff close but far. Yes! You nailed it Thanks!
 
Hi BB
Glad to be of assistance.
I was excited too when I found out about it a few months ago.
I had all but forgotten about it because it hadn't happened for years then a poster on another forum mentioned it so I googled and I couldn't believe that after all these years I found there was a name for it and I wasn't the only one.

By the way I noticed you are from Las Vegas. I'll be visiting there in Sept./Oct. I'm from Sydney Australia.

Lorraine
 
That wierd preception thing doesn't happen too often but when it does, then it for a few days and then gone for months to years. Like clusters. Can't equate them with anything specific. It's funny, my epilpesy was sudden onset 6 years ago, but not one neuro has ever asked me if I had these episodes.
:shock:

By the way I noticed you are from Las Vegas. I'll be visiting there in Sept./Oct. I'm from Sydney Australia
Click to expand...

I'll give you my phone number and we'll go have a drink or dinner together. It will probabley still be faily hot then too, it doesn't start to cool down until Halloween. :wink:
 
Hi Lorraine

Hi Lorraine, welcome to the group! What you describe sounds a great deal like what Lewis Carroll had. I hear that is where he came up with the idea for Alice In Wonderland. So, rest assured you are not alone.

Lisa-Marie

 
Hi Lorraine, welcome to the forum. :hello:

lorryanne said:
My seizures changed to secondary generalized during my second pregnancy in my mid 20's
Click to expand...

My wife's seizure patterns changed during her pregnancies too. You can read about her story in the link at the bottom of the page.
 
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