Posted by Ritch on January 30, 2003, at 23:55:22
In reply to Re:TLE, posted by jodie on January 30, 2003, at 18:42:34
> When I was about 12, I started having really strange sensations. I would, out of the clear blue taste celery. Even though I hadn't eaten any. I would start to feel sick to my stomach, and get a headache. Shortly after I would have this really intense feeling of de' javu or jamais vu (the oposite of deja vu...not sure if I spelled it correctly though). I was still somewhat aware of my surroundings, but would also have a strong feeling of depersonalization. I felt like I was outside of my body. I felt like I was in a dream. Things, and voices would become distorted. When I had these "episodes" I would have several a day, for maybe a week. I had no idea what was wrong with me. I somehow kept it from my parents. Even when I thought about telling them, I wouldn't because I didn't know how to explain it. Being 12 years old, I just thought I was going insane, and if I told anyone, I would end up in a mental hospital for life.
> I continued to have these "episodes" all through my teen years. Sometimes I would go months without having problems, but it always returned. I got married young, at 18, had a baby shortly after. The day after I gave birth I had a grand mal seizure. The neurologist started asking me questions about symptoms, like deja vu, strange taste, smells, or feeling like I was in a dream like state. I explained everything to him. They did plenty of test, including an EEG. They finally diagnosed me with TLE. I was upset but relieved that I finally knew what in the heck was wrong with me. They started me out on Dilantin. I was on that for 3 years, and hated every minute of it. The side effects were horrible. I finally weaned myself off the dilantin. I was 23, when I did this. I was seizure free, never a problem, until a few months ago, I started having the intense deja vu feelings again. Then a little over a month ago, I went to bed and woke up the next morning in an ambulance. My fiance found me having a grand mal seizure.
> I was taking clonazepam as needed before the seizure. During a stressful time, I took it for about a month straight, then stopped, about 2 days later is when I had the seizure. The Dr. said it was from stopping the klonopin suddenly. I told the ER staff I was not going back on an anti-seizure med, like dilantin, or depakote. So he gave me a prescription for more klonopin, which can control seizures, and told me to take one every day. I haven't had any strange feelings, or seizures since. It is always a constant worry for me though. TLE can be hell. It is the strangest feeling!!!
> I am now diagnosed as having ADD, I tried Strattera, but didn't work for me (thats a long story in itself). Now my pdoc is talking about starting me on Adderall. I am a little afraid it may cause seizures. I don't know.
> Anyway just thought I would tell everyone my horrible experiences with TLE.
> Take care
Hi, the most pronounced depersonalization episodes were when I was an adolescent. I don't know why, but I would daydream about flying and would feel like my body was being lifted up above the house/neighborhood I lived in and I would "float" around all over and then land at times and then take off again. That is strange, but my Mom (who had generalized seizures only in her sleep), told me that she always had these sensations of flying just before she lost consciousness and went to sleep and had a seizure. She was on high-dose Dilantin+phenobarbitol for many years. The birth thing is interesting. She had her first (observable) seizure after the birth of my older brother, and did't have any seizures (that she was aware of) after I was born ten years later. So, clonazepam is controlling things for you without other meds? That is nice to hear. Thanks for sharing!