I don't "know" when I am having a seizure.

[wonderdogs]

Does anyone else have this type of epilepsy? I don't have any indication when I am having a seizure. I don't have any obvious loss of consiousness or bizzare behavior.

My seizure activity was very evident throughout my EEG. It was not worsened by the flashing lights but it was influenced by hyperventilation.

I just started a low dose of Keppra and I am to increase it as I tolerate. I am doing fine although I am very drowsy. Hopefully this effect will wear off as my body gets used to the medication.

Thanks for your advice.

 

[wonderdogs]

Just wanted to add...

I would like to do a seizure diary but I am finding it difficult to do because of the mystery behind when my seizures occur. I also wonder if I should have done a seizure diary before I strated taking the Keppra.

 

[RobinN]

For my daughters "diary", which is a calendar, I mark anything that I think is out of the norm for her. Any change in dietary habits, any changes in emotions, and social upheavels, hormonal changes, amount of drug, what supplements were given, what meds were forgotten, sodas, late nights.... I think you get it. I make note of everything.

Poor kid thinks she lives under a microscope. I guess in a way she does. In more ways than one.

You can't really think of what you should'a done... you can only go from here. For you it might be easier, because you can really make it into a journal, and tell what you are feeling at any given moment of the day.

 

[Bernard]

When I first met Stacy, she would not have been able to keep an accurate seizure diary because she was largely unaware of all the absence seizures she was having.

Even now, she is largely unaware of her infrequent complex partial seizures. When witness one and tell her about it, her immediate reaction is to argue with me!

 

[Bee91]

I have some seizures where I am not aware I am having. I try best as I can to keep a journal of all the seizures so my doctor can read it, but it's nearly impossible when you don't know all of you seizures. At school, I have a friend in every class make sure kind of watch to see if I have a seizure. And if I do have one that I don't remember; I ask them to describe the seizure and how long it was. At home, my parents do a pretty good job at telling me what I miss...fft:

But if you want to keep a journal, then I would find someone that is with you most of the day and just ask them to keep an eye out and tell you when you do have a seizure.

 

[Nancy]

I can offer no help but I know what you're talking about.
Last April when I was in the hospital 5 days for a video EEG I was told I had those mysterious (to me) "seizures" ..... That "seizure" shows on the EEG but absolutely NOTHING shows to the experienced people carefully watching me by camera, nothing shows on the recorded film and I am aware of nothing.
~shiver~

 

[Grneydgurl]

Sorry I can offer no help as well. I have tonic-clonic seizures. I too underwent a video EEG test and the alarms were going off, but nothing on the EEG and no seizure. I have also had spikes during sleep (which would be no help for me if I was sleeping), stress and hyperventalation. I get some funky signs, tunnel vision, tingling around my mouth but they said that it could be a number of things.

 

[brain]

When I first met Stacy, she would not have been able to keep an accurate seizure diary because she was largely unaware of all the absence seizures she was having.

Even now, she is largely unaware of her infrequent complex partial seizures. When witness one and tell her about it, her immediate reaction is to argue with me!

I have to argue with Bernard with this one!


I find myself in his wife's own seat! I think
they're all telling fish stories! And some of
the things they say, makes me go ...

onder:

And I think THEY are on drugs!

But he's actually telling the 100% truth!
HONEST!

If you remember the not too old television
show "FAMILY MATTERS"?
Steve Urkel? Of how he would go ...
"Did I do daaaaaaaat??"

Well ... that would be my reaction!

:embarrassed:

 

[Nancy]

Ooops ... I read what I wrote and saw that I was not clear, was I?
I said " and I am aware of nothing." I meant that I was wide awake and went ahead doing exactly what I was doing before. I was fine. I was 100% active (as possible in the hospital bed).
When I said "aware of nothing" I meant that I was not aware of having any sort of seizure or anything being wrong.

 

[ziggidypoo]

It's hard to keep track when you lose days

Very serious right now, in reading about Stacy and others, memory problems are I reckon the worst part of my E. Seizures come and go. BUT, the memory loss, is so bad that I feel "picked on" by my own family when I am being CONSTANTLY "corrected" as to WHAT day WHAT happened or didn't happen or "You did this" or "You already told me that 500 times" ( for me it was the first time!!)

I don't feel like talking now. I'll just listen. This Memory mess is quite frustrating.

*******************************************
"Live and let live"
http://www.myspace.com/ziggidypoo
********************************************

 

[brain]

This Memory mess is quite frustrating.

You are NOT alone in this!

People with Epilepsy and including those who have
had Brain Surgeries - depending on the area of the
brain they've had surgery performed in, experience
this issues as well ...

----------------------------

I suffer from multiple different types of memory issues.

The worse thing in having to deal with it is the confusion!
I get so confused, partially because I do not remember
or have no memory.

The best way I can describe the memory being wiped
out - is this way:

"If you can recollect in the old days when cassettes
were popular and the best way to erase those tapes
were to slide them through the magnetic cassette
eraser, and everything that was on that was recorded
on that cassette tape would instantly be gone."

That is exactly what happens to my memory:
It's gone. It's as if someone had taken my brain and
slid it through the old magnetic eraser and wiped it
all out! No matter how hard I try to remember, I fret,
stress, and strain myself out just trying to remember;
and I CAN'T!

 

[walksalot]

IF YOU CAN UNDERSTAND THIS, I JUST NOW TODAY, THIS VERY MINUTE, FOUND THIS THREAD YOU SENT ME TO.

I spent a lot of time reading the information at Elpilepsy.com and the descriptions of the classes of epilepsy, Absence, Simple Partial, Complex Partial, etc. I have had only Clonic seizures according to Jim. The ones I had in August when my Jim said I had so many must have been only Clonic seizures according to the descriptions on that website. I asked him what had happened and told him I needed to know everything that happened to me. Usually, Jim has been indifferent about my seizures, but since I have been on this website talking to all of you, I have been explaining it to him what you have all experience.

Anyway, he explained to me that the night I had so many seizures, at no time did I become rigid during a seizure. He said that both arms and legs jerked during every seizure I had ,and I think I must must have frightened him because it was the first time he had seen me do this. He said that he had tried to hold me down thinking that it would stop me, but then he remembered that someone had said not to do that and he left me alone. Thank God!

When I had the next seizure and I had fallen out of the bed actually trying to get off the bed, he had come running to help me, but I haven't had another partial complex seizure for him to accuse me of so I can deny it. Actually, I can say I think I like it better this way, (I think.) So far I haven't hurt myself and they have happened only at night. Actually, I don't go anywhere but my mailbox anyhow, so it doesn't matter if I do have one in the daytime. My neighbors all know and understand what to do.

 

[walksalot]

I've got to say this, too. I think I lose memory even though I haven't had a seizure simply because I've had epilepsy for so long. I know that loss of memory is age related too, but I don't think I'm that "old". unless 64 is old. I can't tell you much about the last 15 or 20 years and that really hurts. About the last 20 years or so though, my husband will say "Don't you remember? and I have to say "No, I'm sorry, I don't". Even if he reminds me, I can't bring it back. Brain, you're right. it's been formatted.

 

[Tralee A]

i can sympathise very much there

i know how you feel. i never know when i go to have one. even had one on the phone to my boyfriend yesterday.
my folks and bf are the only ones at the moment who can pick when i'm about to have one (but its only about 2secs before i do). its annoying seeing as they are partial complex so leaves me scrambled

 

[Lisa]

For the most part I dont know when I have had a seizure either. Everytime I have been told I have had a seizure I feel like I am hungover. Just kinda blah, and out of it, so now if I feel that way (for no reason) There might have been a chance I have had a seizure. Its not 100%, but its really all I have to go on. I have also connected strange things too. Like I get a funny feeling (like being on a rollercoaster), and I have had those before losing time. My memmories, and day to day reminds me of swiss cheese. Alot of times I dont know if my memories are real, or a dream, or apart of some tv show, or movie.