well i no exactly how you all feel it is so frustrating i no. i have been waiting for a diagnosis for the last 18 months i am going in hospital again this month this time for a veeg 2 whole weeks in hospital but i no its got to be done and this time i should get some answers.
i have seen so many neuroogists and also a cardiologist, got an old ecg tracing back today with the report, it says something about p waves being taller than 2.5 mm suggestive of right atrial hypertrophy. not sure if this has anything to do with my seizures and my gp seems unsure too .
Concerned momma, I am 25 years old and have experienced seizures like the Type 1 you described since I was 15. I thought I was alone; no one has ever had the same symptoms as me. I never sought diagnosis or treatment. I have learned to live with it, somewhat. Sometimes it occurs just as I am getting out of the shower. Most of the time though, it occurs over and over again all day for about three days or more. I can't see, I can hear what people are saying to me, but I cannot respond. Sometimes I forget where I am, or even who I am. But only for about a minute. It is really scary sometimes. Especially when I am driving. I'll be driving down the road and all of a sudden I won't know where I am. Even on roads I've traveled my entire life. In a way, I have learned to control it with mind over matter. Sounds silly, but when I feel one coming on I fight it. I grab a hold of the nearest thing to me and I hold myself up, it is really hard with the twitching and everything, but after a while they weren't as severe. I even tell myself to ignore it. Sounds crazy, talking to yourself in your head while it is happening, but it does work. Fight it. I believe them to be brought on by stress. Thinking back, when my seizures started, was after mom told me about something my father had done to me when I was 10. Either this is my body's natural response to a memory trying to resurface, or it is my mind trying to make me not remember, I'm not sure. I believe it is psychological. I had a horrible childhood, but I do not have a lot of memories of it. Many people have told me it is your personalities trying to switch so you can deal with your mental stress. I would hope I do not have split personalities, but trauma as a child can cause this, I've heard. Children have amazing natural coping skills, it's when they are teens and adults the memories start to flood back, that is when one should worry about the effects a traumatic experience can have on a human being.
Don't give up, keep going. The world of medicine is growing and gaining new knowledge every day.
I to have NES's. Mine were debilitating, and I eventually was treated with ECT (Electro-convulsive Therapy) It help TREMENDOUSLY. I went from several "grand-ma like" seizures lasting 12 or more hours a week, to one in about 9 months. Its not a common treatment though, and I did suffer memory loss. If they are true NES, anti-convulsants DO NOT HELP. Sometiems though, Valuim does limit the longevity and severness.
Do not let doctors tell you she is faking though. Sometimes as soon as they hear or even think the word "pseudo" they think "fake".
I also could hear during part of my seizure. It is a very frustrating experience. I suggest crarring sometime in her purse that explains her seizures are Non Epileptic so they don't load her with meds that dont help. One time i had a seizure in the mall by myself and nobody new what to do, and once in an ambulance they drilled a hole in my leg bone and put an IV in called an IO so they could rush the anti-convulants in and they did no good.
if you see a Psychologist or Psyciatrist, make sure you get one that has experience with NES. If you live close to TN there is a Dr. Rice and Dr. Varma that work with St. Francis Hospital in Memphis TN. ( I like Dr. Varma better).
I really hope these things go away completely for your daughter. I know that they are hell to live with.
Best to you and feel free to ask any questions.
Post Edited (mi-nena) : 1/27/2010 1:02:02 AM (GMT-7)