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[EklectikButterfly]

Hello! My name is Jenn and I was just diagnosed with a seizure disorder.

Here is a bit of my history...

A few months ago I was in a car accident, I do not remember anything about the accident. My daughter says I was staring straight forward when I kind of snapped to and was like "What the hell just happened?" We were all okay, but car was totalled. I hit my head on the steering wheel... the airbag didn't go off.

Then about a week after that... I was driving and our tire blew out on the rental car. My Mom was with me, grabbed the wheel and slammed it into park. Again, I was staring forward with no memory of the tire blowing.

I know enough about absence seizures that I thought I could be having absence seizures. There are 2 other instances where I started to say really weird things and dont recall why I was saying weird things. Oh yeah, in the incident about the tire I kept pointing at the odometer and was saying "Look... look" and my Mom was trying to talk to me and Im like "No, just look" but I have NO idea why. I was on the phone with my friend about 6 months ago and I thought I had drifted to sleep and started to talk in my sleep... but now we believe that was a seizure.

One time driving with my Mom (she was driving, I stopped driving after the second incident) she called my name and I started to stare ahead, crying hysterically, not saying a word. I snapped to, wiped my eyes and was like "Damn my allergies are bad." But no idea that I had some weird episode right before that.

I went to my doctors, and told her I thought I was having seizures. She agreed that it could very well be seizures, so we had an EEG ordered.

Before the EEG I was in class with my daughter (we are in martial arts) and from what I remember, I said something to my daughter about lining up and then I see Lily crying a few minutes later. I go and ask if her teeth were hurting (she just had oral surgery) and she just said "Im fine, its not my teeth." And just told me to go back to my group. After class she finally told me that I was moving my hands weird and was talking nonsense. So I had a seizure during class and it scared her, but she didnt want to tell me. When I do have these episodes I tend to move my hand as if Im typing and move my jaw like Im chewing.

So I had an EEG a week ago and I didnt remember anything of the test. I mean, I didnt remember anything weird happening. But my doctor saw me a few days later and she said sure enough... I had 3 seizures happen during the test and one was a minute long. I have no memory of this at all. So I was diagnosed with petit mal and absence seizures. My doctor says Im likely having seizures and dont even realize it. My doc put me on vimpat but it may be changed when I go see a neurologist.

Im way into the martial arts and can never spar again. I can't drive anymore. My family is super upset and worried... especially my daughter. She started crying when I told her I was having seizures. Im trying to keep a log of possible seizures but I dont even realize when Im having them! I went to comic con and there was a SUPER bright flashing light that made me feel weird but I didnt lose any sense of time or memory so I dont think it started a seizure.

Sucks. But hopefully this forum will help me get through my journey!

 

[valeriedl]

Nice to meet you!

I think having epilepsy can be worse for other people sometimes than it is for you because they see what's going on during a seizure and you don't. When I have a seizure I usually don't even know I had it. I'll be sitting on the couch and my husband will look over at me and say "You just had a seizure". I have no clue that I'd had one. All I know was that I was sitting on the couch.

Keeping a seizure diary is very good. It helps in letting your neuro know how often you are having them and any other information you can write down about the seizure. Write down any thing else too, like the flashing lights for example, and how they make you feel. It is hard sometimes to keep one though when you don't know you are having a seizure. I think I have about 7 seizures on average a month but without knowing I'm having them I could be having more.

You do have to make changes in your life because there are things that just aren't safe to do when you have epilepsy. I had to stop driving which was the hardest one for me.

I've gotten a lot of good help from this web site and I'm sure that you will too!

 

[lindsayschu2]

Hi and welcome to the forum! I also had a car accident and hit my head on the steering wheel. Unlike you, I had epilepsy before the accident, but it was fully controlled with medication before the accident. But I could not gain control of it afterwards. One thing to note is that it does settle down in time. I am now 2.5 years post-accident, and I have gained much better control than in the early months. Since I had epilepsy before, I could have a harder time getting things to settle down than you--you are very early in this process. Your seizures could very well slow and stop completely with medication in time. I have another friend in the same boat and his stopped completely, and he was able to go off medication with no seizure return. Take care and stay positive the best you can!

 

[Nakamova]

Howdy EklecktikButterfly!

Agree with all of the above. It definitely takes time to get used to the idea of a seizure disorder -- for both you and your family. The more information you and they have, the easier it will be to get a handle on things and cope with both the knowns and the unknowns.

So I was diagnosed with petit mal and absence seizures.

Petit mal and absence seizures are the same thing -- one is the newer name for the other. I'm pretty sure your diagnosis should include "Complex Partial Seizures". Those involve impaired awareness or consciousness, like the episodes where you were saying weird things, or don't remember what happened. Complex Partials are a bit like sleepwalking/talking — your brain and body are still conscious in a sense, but you may not have control over what you say or do, and may have problems understanding, communicating or remembering. You can read more about them here: http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures
For info about absence seizures: http://www.epilepsy.com/learn/types-seizures/absence-seizures
And about "Simple Partial Seizures": http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures Simple Partials are unusual sensory distortions that occur while you are fully conscious and alert. You may or may not be having these, but it might help to know what symptoms to look for.

Best,
Nakamova

 

[KoiKamsahamnida]

Thanks for your post Nakamova!! And this is EklectikButterfly... I created a new name because I couldn't log in and my stupid butt thought I had imagined actually signing up (these stupid episodes of "Did I really do that?" is really getting to me, grrr!) So since I couldn't sign in I thought I didn't actually sign up or was thinking of another forum (I signed up on another epilepsy forum) and so alas... created a new name just to realize I actually did sign up. Sorry, I probably sound crazy lol. But this is the username I will be using from now on!


And thanks for the mini education. I have been researching a lot, but it is so much to take in!


I'm glad you mentioned the simple partial, I absolutely believe I have those. I have been hearing my daughters voice or someone elses voice a LOT. I will ask my daughter 'What?" and she's like "I didnt say anything." I cant ever hear any distinct words, but its like I hear mumbling and my name but no one is there. It was making me feel crazy! There have been times my lip will twitch (but that could be from my bells palsy) or my arm has jerked and twitched before. No jerking like I was having a full blown seizure, but enough that Im like "That was weird!"

Man, so much to take in. I am keeping note of everything that is going on to give to my doctor, but some of these I wouldn't have thought to write down but its goof I can write it down now and know that it does in fact mean something!

 

[Nakamova]

Hey Jenn/Koi,

I'll let Bernard (CWE's head honcho) know that you have a duplicate account so he can delete the old EkButterfly one.

Definitely write down everything "odd" that you have experienced so you can tell the doctor. Don't worry about whether or not it is relevant -- part of their job is sort everything out, with your help and collaboration. It can be really helpful to make a list of questions to bring with you to the appointment. Write down the answers, or have some come with you to write them down, and make sure you don't leave the appointment if you're still unclear. Better still, find out how to get in touch with the neuro in case you have any additional questions or concerns that arise when you get home. If your neuro will respond to email, that's a huge plus.

 

[KoiKamsahamnida]

Thanks, that would be a great idea. I have had such a scatter brain since this has started, I'm sure some of you can relate

Im definitely writing everything down... if something is questionable I put a ???? next to it just to make note that it could be something else. Like when I went to comic con... I was SO TIRED that I fell asleep on the floor waiting for our ride (dont worry, my daughter was with me playing on her DSi, she was keeping eye on me ) It's unusual for me to be THAT tired. But again... we had spent 2 long days walking a LOT at comic con so it could be just the regular fun of comic con. My family is keeping note of anything I do or say as well. I need to write down the simple partial notes though... because I would have never thought them to be connected. I would have written them down last night but I conked out.

The meds I am taking sure give me funky dreams. Man I wake up confused wondering if I am in reality lol! It doesnt bother me though, I love a funky dream or two

 

[Zolt]

Hey Jenn,

" My Mom was with me, grabbed the wheel and slammed it into park."

Wow, that is one quick thinking mom you have. I tell my friends and people that drive with me to do exactly that, if i had a seizure without an aura. I've always wondered if they heeded my advice, but luckily never had to test anyone with that.

Welcome to our strange world of epilepsy.

Cheers,

iano: op: