This message may be long, so I apologize.

I am 32 years old. Married to a wonderful man, with two sons. I am newly diagnosed with TLE.

When I was young, I would often “come to” in strange places. I had no idea how I got there. My mom said I had a wonderful imagination when I told her about it. So I just didn’t mention it again. It eventually stopped.

About 5 years ago, I had a horrible sense of déjà vu and being pulled into a corner. Weird images of things I remember from my past, but different, seemed real. And this feeling of nothing else being real…and total fear…it’s hard to explain. This happened while I was doing dishes. I ignored it once I calmed down.

After the second one, I went to the emergency room, where a doctor told me it was a panic attack and to learn to relax. He gave me some sedatives and sent me to my family doctor.

My doctor sent me to a neurologist. After many tests (MRI, EEG, CAT...all normal) the neurologist said that I was having seizures but that we would probably never know why. He put me on Tegratol.

On the Tegratol, my skin smelled all the time and my head felt like someone had stuck a straw in my ear and filled my head full of air. So after about two months, I quit taking it and never returned to the doctor again.

I would have what my husband and I call a “freak out” or seizure several times a day. I just learned how to deal with them or at least how to pretend I was dealing with them.

About two months ago, I went to the oral surgeon to have some teeth extracted. I hate the dentist. They had to put me under to do this. Now both stress and tiredness seem to cause seizures in me, so no surprise, I had two seizures in the dental chair. The dentist refused to continue outside of a hospital and without written consent of a neurologist.

I moved to West Virginia from California about a year ago, so I had to find a new neurologist. This one asked me so many questions. Our visit seemed to take forever. He finally diagnosed me with TLE and placed me on Topamax, and I promised him that I would not go off the medication without talking to him.

I have noticed that many things seem to either trigger a seizure or I just notice them before a seizure:
The smell of: Paints, glues, aerosol sprays, WD-40, Nail polish, Nail polish remover, gasoline, markers…Stress and sleepiness. Visuals: Mirrors, corners, points, my hands ( which makes doing many activities difficult) flashing/flickering lights, stuttering images. And I hate ECHOES!

There are also many things I’ve noticed have changed about myself. I can no longer spell or use good grammar. I have trouble remembering even basic vocabulary. Sometimes when people speak to me, it takes a bit of time (and repetition on their part) before I understand them.

Oh and this may sound weird but, sometimes, before a seizure, I hear a small clicking inside my brain. It makes me feel kind of panicky. I know a seizure is coming. It usually precedes the déjà vu.

WELCOME TO THE BOARD!

I hope you enjoy it here. There are so many fabulace people here that I don't know how you couldn't like it. We have ladies and men with all different types of seizures and auras. It is a perfect blend.

You poor thing! I know about those auras. Just reading your post gave me those "mini" feelings as I like to call them. They are not the full blown deja vu's and not the ones preceeding a seizure but just a flash or a quick feeling of one and then it is gone. I am saying good for you that you can even remember what feelings you get when you get them. I can't put my finger on what the feeling was or the vision was after it is over. It is like having the name of your favorite actor right at the tip of your tongue but you can't spit it out. That is how it is for me. I have CPS and I too "check out" and then "pop back in". The lights are on but no one is home.

Anyway, thanks for the introduction and WELCOME! I am sure you will love it. Just kick off your shoes and don't be affraid to just vent off some steam here...we all do it from time to time. We also put on the BEST "pitty parties". They don't last long but they can be some doozies!

Hope to see more of you!!

God Bless,

KittyMom

------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi Ashnan,

Welcome!

I was first diagnosed with TLE 6 years ago when I was 45 but my symptoms started in childhood. My parents just said that I had ESP and that was all I ever thought my altered states were.

Isn't it strange to have experiences you had as a child diagnosed as seizures? It never occured to me that they could be seizures.

My EEGs have been normal but I have never had a seizure during an EEG. I have been told that my MRIs were normal except for last year when an epi looked at a MRI I had three years ago and said there was a lesion. Yet I just recently had a high resolution MRI and there was no mention of a lesion on the radiologist's report. So I am confused. Maybe the 'lesion' the epi thought he saw was just a 'fingerprint smudge' or something.

I am not taking any medication because I have tremendous difficulty with side-effects. I am just 'putting-up' with the symptoms.

I find it hard to believe that I really have TLE without 'proof' of some kind. I tend to tell myself that my symptoms are just do to my being 'silly' or something. I keep thinking that maybe if I just stop thinking about them, they will go away. I always feel that ultimately if I do have a 'seizure' while having an EEG (even if I were having a depth EEG), the epi will tell me it is not seizure and I will end up feeling foolish.

I find my symptoms distressing and sometimes frightening but as soon as the symptoms are over, I tend to think "whatever" and dismiss it.

I'm sorry - this wasn't the best way to introduce myself. As you can tell, I am emotionally struggling with this diagnosis.

[This message has been edited by rainonwindow (edited 06-28-2003).]

Thanks all. I've been reading the posts and am starting to feel like I know so many of you. I told my husband yesterday that I was getting weepy. I feel like there are other people who understand what my life is like. That I'm not just weird or difficult. My husband just smiled and said "You're still weird, babe."

Rainonwindow, I know what you mean though. You kind of convince yourself that you're just making it up or playing or something and if you just get ahold of yourself it will go away and you can be normal.

Hang in there and keep a sense of humor.

Ah. Welcome to the club that we wish we could close down!!!!! Your sz sound like mine, I had them since I was a kid but didn't know they were sz till I was 25. I called them my "nauseous feelings." I'm 37 now.
I was on Topamax a while ago, lost 20 lbs (yay!), but have to get off it because of weird side effects. But others love it, so everyone handles meds differently. I'm now on Keppra and Lamictal, am not impressed with either one.
In any case..... just know there will be good days and bad days. Hope you have more good ones than bad ones. Glad you have a good spouse. I am blessed with one too Thank G-d but I do feel bad for him, he has to put up with all my moods and symptoms. Good luck!