My name is Ashley. I'm a 28 year old divorced mother of 2 sweet little girls. I thought I had "beat" my seizure disorder, but I had a really scary "episode" a couple of weeks ago, so I'm back in the saddle.

My brief history... well, I'll try to be brief anyway At age 2 I had my first grand mal. Mom says I had a pretty severe aura before hand and I had about 10 more that week before I could get into a pediatric neuro. EEG revealed abnormal activity, so I was on phenobarb. At age 4, some random GP decided I didn't need the phenobarb, so he took me off of it and I began having absence seizures.

Stayed on phenobarb until about age 15, because I figured by then I was over it and didn't want to be on drugs anymore. I'm pretty sure I had absence seizures in that time, but didn't want to admit it. At age 17 I had my first partial seizure. (Forgive me if I'm not quite up on the terminology yet. I'll work on it ) It was a motor seizure on my left side and it scared the crap out of me b/c I was awake for the whole thing. It was short, but I had several more before my mom could get me to a hospital and they loaded me up with enough Dilantin to put me in a veeeerrrry happy place. Too happy. They wouldn't let me go to school on Dilantin b/c it affected my balance, memory, not to mention my eyes jumping around in my head like a crack addict. Switched to Tegretol. Full body rash. A week before prom no less. Switched to Depakote. Could not stay awake on even the lowest dose. Back to phenobarb. By then I was 19 and again, knew better than the docs so I took myself off of any and all meds.

That I know of I've had a few absence seizures. Mostly when I'm stressed or when I've not gotten nearly enough sleep. Sometimes I'll feel a little jerk on that left side, but rationalize myself out of it. A few weeks ago I woke at 3am and couldn't stop my foot twitching. Marched up my body to my shoulders and scared the hell out of me. I started having a full blown anxiety attack and had trouble breathing. Mind you, I'm alone with my daughters (age 3 & 4) so I just had to ride it out.

Went to work that morning with every intention of calling a neuro. But then I start to get this feeling. Like I was detached and floating, yet under a lot of pressure. I went to take a sip of my cup of water and found my left arm too weak to lift the cup and my fingers were tingling. This sent off another breathless panic attack. Likely b/c my mom had a ruptured brain aneurysm this year, so I'm instantly imagining the worst. Once I calm down I discover that I'm having a really hard time speaking.

Mom insists on taking me to ER to make sure it's not a stroke or annie or anything. It was only the tingly bits that scared me b/c that was new. Since my speech was affected I type up a quick medical history and a description of what had happened that morning. (Hey, I'm a writer by profession. It's a habit.)

At the ER, the doctor sees me fairly quickly. But instead of asking me questions, he starts to ask me if I hear voices or taste music or whatever, and is looking at me like I'm a crazy person. He says he knows I'm artistic and it's expected that I see the world differently. Have I seen a psychiatrist? Grrrrrr. I get a token CT and a referral to a neuro. Whatever.

So I guess the point of my long rambling story here is that after this episode, I began to research the different types of seizures and I realized that I've been having a lot more seizures a lot more often and just didn't know it. There are perceptual things that I thought were normal, that clearly aren't. And those snippets of time I lose are making a little more sense. My neuro appointment is 10/13 so I'm hopeful to have more answers then.

Meanwhile, I'm only slightly terrified. My mom and sister are careful to help me out as much as possible with the girls. They wouldn't even leave me alone with them for about a week after that, which I understand, but it still makes me feel a little bit like crap. I feel really foolish for thinking my seizures were gone. I was never given a formal dx of epilepsy. Just generic "seizure disorder". I'm scared of what meds I'll be on and their side effects. I'm afraid one of my girls will inherit this. I'm scared of having to do this alone. And honestly, after the reaction I got from the ER doctor, I'm really reluctant to even mention it to my friends b/c I don't want them to look at me that same way.

So lucky for you, I can inflict all my worries and whines on you guys! LOL, just kidding. But it is a releif to find a place like this where I can learn from people in a similar situation.

If you made it this far, you deserve a loving little pat on the head and a sincere thank you. I look forward to getting to know you better and sharing this journey with some kindred spirits...

Hi Ashley.
I am so glad you found us. This community is great. I found forums like this right after my official dx in aug 2004 when I was 23. Now I am 26 and I am still coming here for support. It is a great place to be where other people really understand what you are going through. Take care Tracy

Also I know it is hard to think you have been doing well then BAM seizures. It is just a horrible thing. But it sounds like you have alot of support from your mom and that is really great. Everyone has a horrible run in with a neuro or 2 or 3 don't let it discourage you!

Ashley,

Hello and welcome! What a great story, and you are more than welcome to unload all of your hopes and fears here, this is exactly why we are here! I, too, have not noticed certain seizures until I did some of my own research. When you do things for so long, they seem natural to you thus making them more difficult to notice.

I wish you the best of luck, and make sure you keep us updated!

Hi Ashley,
Welcome to the forum! I started having absence seizures when I was 10 yrs. old and then by the age of 12 I started having complex partial seizures also. I've had epilepsy for 34 yrs. now and I had 2 brain surgeries to help reduce my seizures.
I've seen many neuros. over the yrs. and have been put on many different drugs but nothing helped me because I was drug resistant. I've found seeing an Epileptologist (Dr. specializing in epilepsy) the best move I ever made. I go to a University Hospital where they have an Epilepsy Center with a team of Drs. working together to help people with Epilepsy.
I found out that stress, lack of rest, cold or bad virus triggers sz. for me and also bright flashing lights. One thing you might want to do is get a calendar and write down what time you had a sz. along with a discription fo the sz. also circle when you start and stop your monthly cycle because hormones changing also can cause sz. for some women. One thing I have learned is taking vitamin B12 once a day has reduced my sz. even more.
If you're interested check out these websites for more info.
www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
(when the main page comes up click on epilepsy)

Here's wishing you well and May God Bless You!

Sue

Hi Ashley. I posted in the thread about my son about Epileptologists in Houston.

BTW, welcome.

Julie

Hi Ashley
Want to welcome you to the forum...
I am glad you found us and looking foward to reading your postings

hugs