From the age of 4-14 I was on phenobarbital for what was then called grand mal seizures. I stopped takeing the phenobarb so that I could try and go seizure free for a year prior to getting my learners permit for driving. I was so relieved that i didn't have any grand mal seizures for a year, but at 14, just after stopping the phenobarb, i developed some strange symptoms. I had shortness of breath, palpitations, weakness, dizzyness,fatigue, and stomache issues. It was all chalked up to being a teenager and I would grow out of it. By age 22, I had a bout of strep septicemia which resulted in a continuous, year long migraine, worsening of the above symtpoms, tonic-clonic seizures, and "fainting" spells. When I went back to the neurologist, he made sure to tell me that i was a stupid little girl that just wanted attention and that my EEG was fine, so please dont come back. From the age of 22-33, all of the above symtpoms continued to get worse, and my seizures( which were always accompanied by severe abdominal symptoms and auras) continued. I was diagnosed with a dissociative disorder because of the feelings of disconnection to reality. I was later undiagnosed, but the doctors still did not know what was wrong. At the age of 33, i had a seizure that left me close to death, so the next step was to see a cardiologist. They decided I had dysautonomia( a positive tilt table test) and sent me on my way with a steroid and beta blocker. These did not work. By age 37, I was literally sleeping until the last moment before work, and sleeping as soon as I got home. My Pcp finally said if I wanted I could see another neurologist, but he also referred me to a psychiatrist. The neurologist took one look at my medical history and ordered the full neuro workup. Everything was fine, but he was convinced he just didnt catch anything. He started me on lamictal. He basically said if it works, you have epilepsy, if not we'll figure it out. But he assured me it would not work unless it was truly epilepsy. Lamictal is my miracle pill. I am like a normal person again. I still get tired, and short of breath, but I am still not fully titrated. Please keep plugging away. Someday, someone will believe that it is not normal to feel that bad all of the time. Sorry so long winded, I have had all that bottled up for a while. So dx of Abdominal, or Autonomic epilepsy. I still have a multitude of what I now know to be simple partial seizures, but they are different. I don't actually feel nervous or like anything is building, but that was the easiest way for my neuro to explain it to me. It is not a constant barrage of shortness of breath, fatigue, palpitations, weakness and dizziness. Hope that is somewhat helpful. I would be happy to answer any questions.
Can I ask how much Lamotrigine your daughter takes? I feel for her, it's hard never quite feeling 100%.
