Well Guys, I'm back home from the hospital. I only had to stay one night, but I don't really know anything more than when I went in other than that they don't think that my problem with the bright lights and loud music is going to bring on a seizure. I don't actually see my neurologist when I'm in for tests. I did not like the two neurologists who saw me this time at all. The first guy who saw me, I can't remember his name, so I'll call him Dr. Curry because he had curry oozing out of his pores. He tried to make me believe that I was having migraines without pain. I have had migraines triggered by allergies for 20 years and I know what they feel like. As a matter of fact, since I've been on Topamax, I've had very few migraines. He was trying to tell me that the past five years they had discovered that people were having migraines related to loud music and bright lights, but had no pain. He could tell I was not buying into that.
Then later Friday afternoon, Dr. LaGrange comes in and tries to convince me that he knows all my history and starts talking about my juvenile myoclonic seizures and I can't seem to convince him that I just started having myoclonic seizures last summer.
So I'm all wired up and they do the test with the bright lights and loud heavy metal music. The technician was very good. I remembered her from my stay last year. I told her to give me the most God awful music she could find because that was what I was there for. She was going to let me use a headset and I told her that wouldn't work because I would just pull it off, that she would need to play it where I had no control. I had a lot of jerking all over my body, but Dr. LaGrange said this was not seizure activity. He said he thought I was just experiencing anxiety about having seizures out in public. He may be right about that.
He didn't really give me any answers on how to deal with it other than to see a psychiatrist.
When I told him that I was also there to find out why my seizures were still not under control, he told he I would need to talk to Dr. Arain.
When I talked on the phone to my friend, Marilyn and she found out they were dismissing me after one day, she made me promise to call her when the doctor was there so she could talk to him. She really is my best advocate and she wanted to make sure I didn't get frustrated and forget anything. She didn't like the answers she got from him either. I think she may have been asking questions that were over his head.
I am not scheduled to see Dr. Arain until Oct. 1, but I am going to call and get an appointment much sooner when Marilyn can take me down to Nashville. My daughters can and will take me, but Marilyn really wants to and has a better understanding of epilepsy. Her 20 year old son has had epilepsy since he was a baby and had been seizure free for many years until just recently, so she has done a lot of research on epilepsy. She is also a professor in public health and is a very good friend.
Please say a prayer for Marilyn as she goes down to Vanderbilt herself tomorrow for her second round of plasmapharesis for myasthenia gravis. She is pretty sick herself, but always looking out for me on her good days. I need to get better so I can help take care of her as her disease get worse.
Thanks for all your thoughts and prayers from this site and others!