Hello, I'm a 56 year old female with temporal lobe epilepsy due to forceps delivery so popular in the 1950's and 1960's.
My seizures have been pretty well controlled for the last 12 years when I was re-diagnosed and put on Trileptal. By re-diagnosed I mean I was never properly diagnosed until my late 20's when a psychiatrist treating me for panic disorder and agoraphobia told me he thought I was having seizures, and especially so after learning my medical history. In his words, 2 year olds don't have panic attacks and don't have photographs of being in the hospital bassinet with their head caved in and horrible bruises. In short, I've had seizures all my life, even as a toddler, but no one ever understood them, least of all me.
Anyway, this wonderful doctor sent me to a neuro who confirmed the dx, but I refused to take Dilantin (long story) so the psychiatrist put me on moderate doses Klonopin which he said would help seizures AND panic attacks so we would come at it from both ends. My life drastically changed after that....agoraphobia greatly improved, seizures greatly reduced, and at last I KNEW what was happening to me, and my family finally had answers as well.
By the way, I never had addiction problems to the Klonopin, and the doctor was a great manager of my doses.
Fast forward 20 years and I was able to easily taper off Klonopin and get on Trileptal from another neuro-psychiatrist who apologize to me for the inadequacy of the psychiatric profession for mis-diagnosing me all those years and labeling me as having psychiatric problems and not neurological ones until the wonderful doctor I found in my late 20's.
Trileptal worked beautifully until about 6 months ago. My doctor died, and I had my regular family doctor keep the Trileptal prescribed. (She would order liver function tests on a regular basis, by the way.)
Now the seizures are breaking through with a vengeance and I found a WONDERFUL epileptologist who wants to taper the Trileptal while adding Keppra. I know someone on Keppra who has very good results, and I'm hoping I do, too. I read about side effects of Kepprage and worry about that, along with other psychological side effects, but fortunately my husband is a psychiatric nurse and would recognize if I start to show something worrisome. He pointed out with my first dose this morning that I'm already suffering some psychological trauma from all these breakthroughs and I should give it the old college try and see if this is a good med for me.
So here I go on this journey, and appreciate any support, information, and insights. I hope to offer the same if I can.
My seizures have been pretty well controlled for the last 12 years when I was re-diagnosed and put on Trileptal. By re-diagnosed I mean I was never properly diagnosed until my late 20's when a psychiatrist treating me for panic disorder and agoraphobia told me he thought I was having seizures, and especially so after learning my medical history. In his words, 2 year olds don't have panic attacks and don't have photographs of being in the hospital bassinet with their head caved in and horrible bruises. In short, I've had seizures all my life, even as a toddler, but no one ever understood them, least of all me.
Anyway, this wonderful doctor sent me to a neuro who confirmed the dx, but I refused to take Dilantin (long story) so the psychiatrist put me on moderate doses Klonopin which he said would help seizures AND panic attacks so we would come at it from both ends. My life drastically changed after that....agoraphobia greatly improved, seizures greatly reduced, and at last I KNEW what was happening to me, and my family finally had answers as well.
By the way, I never had addiction problems to the Klonopin, and the doctor was a great manager of my doses.
Fast forward 20 years and I was able to easily taper off Klonopin and get on Trileptal from another neuro-psychiatrist who apologize to me for the inadequacy of the psychiatric profession for mis-diagnosing me all those years and labeling me as having psychiatric problems and not neurological ones until the wonderful doctor I found in my late 20's.
Trileptal worked beautifully until about 6 months ago. My doctor died, and I had my regular family doctor keep the Trileptal prescribed. (She would order liver function tests on a regular basis, by the way.)
Now the seizures are breaking through with a vengeance and I found a WONDERFUL epileptologist who wants to taper the Trileptal while adding Keppra. I know someone on Keppra who has very good results, and I'm hoping I do, too. I read about side effects of Kepprage and worry about that, along with other psychological side effects, but fortunately my husband is a psychiatric nurse and would recognize if I start to show something worrisome. He pointed out with my first dose this morning that I'm already suffering some psychological trauma from all these breakthroughs and I should give it the old college try and see if this is a good med for me.
So here I go on this journey, and appreciate any support, information, and insights. I hope to offer the same if I can.
