Hi. I am new to this site. I have left temporal lobe epilepsy. I first recall having symptoms as a child in which I would be in my house but suddenly everything would seem unfamilar. I would look around at my family but couldn't explain my experience. I've also had episodes in which I wake up and am confused. I am aware of what I am saying but it doesn't make any sense at all. One episode stands out--I woke up, walked to the kitchen door and looked up at the sky and said, "I wish they would stop that." My father and brother laughed, and asked what I was talking about. I had no idea myself. I was aware of not making sense, but no idea why. I was awake, sort of.
As a child, teachers and others complained that I day dreamed too much. I always knew I had these strange experiences but didn't know how to explain them, or if they were normal.
Another time, I remember having that same spacey feeling and looking at our Christmas tree. The lights and colors seemed more vibrant than usual and I had that same feeling of being in unfamilar surroundings. But the vibrancy of lights had me transfixed. It's like I was in another place and time. No idea where, though.
I wasn't diagnosed with epilepsy though. In 1993, while in college I had blank out spells. Friends would tell me things and I'd insist that we never discussed it. I was seeing a neurologist at the time for the sleep disorder restless legs syndrome and a pituitary tumor and described my symptoms. He sent me for a sleep deprived EEG which showed a problem in the temporal lobe. He prescribed Tegretol, which helped with my legs as well. I remember the hyperventilation part of the EEG--my hands went numb and I was fascinated by it, holding my hands up in front of my face, as if I could spend an eternity studying this sensation. The technician reassured me that I was alright. I seemed to fade out for a time.
Early this year my leg symptoms worsened and I started to have more spacey spells, and black outs. I was also falling a lot. I saw another neurologist. He did an EEG which showed a problem in the left posterior temporal lobe. It also showed diffuse slowing in the right frontal lobe, which could be caused by a metabolic disoder, but I question why a metabolic disorder would cause problems in only one particular lobe. I fell asleep during the EEG and at one point was dreaming, or at least thought I was. I remember waking up and looking around, not knowing where I was for a bit.
I am now taking Lamictal 200 mg/day and tapering off Tegretol. The past couple of months I have had episodes of falling out of bed. The first time, I was fully awake, then blanked out and was on the floor. I bashed my forehead and eye on the TV stand as I fell. The second time, last week, I was alseep. I recall dreaming and then all of a sudden waking up on the floor in intense pain. The bridge of my nose hit something in the bedroom. The doctor can't tell if these are seizures or not. All I know is that twice this year I've been injured falling out of bed.
Has anyone had experienced symptoms of falling out of bed like this for no reason? Could I be more prone to nocturnal seizures since I already have a sleep disorder, RLS? I thought these epiosdes could be grand mals, but I am not sure. There isn't any soiling of the bed or anything. All I know is that my nose is still might sore after my fall last week. I feel extremely beat up emotionally and physically. Also, while I was told about the problem in the temporal lobe in 1993, nobody used the word epilepsy, just a little something wrong on the EEG. Now I have a diagnosis, which should be a big deal but it is.
Part of me finds it fascinating and unique, blessed in a way, to have a disease that causes these unique episodes of utter fascination and surreal experiences. It sounds odd, but that's how I feel. The other part of me hates the idea that there is something wrong with my brain. I haven't been able to use the word epilepsy too much, but I am getting used to it.
But my primary question for posting this is to ask if anyone has had nocturnal seizures and what they've been like .
I'd appreciate any input you have on this--could I be having nocturnal seizures? Is it possible to have a TLE seizure and fall out of bed?