Paging Doctor Librarian

Since doctors have not helped in my sleep seizure issues, I have decided to take things upon myself and do a little research. I went to the library today and found tons of information on epilepsy, sleep disorders, and the best doctors in the New York metro area who specialize in seizures. Through hours of reading and scanning and flipping through pages I have found something that sounds VERY similar to what I am experiencing. It is called nocturnal frontal lobe epilepsy and I have many of the symptoms.



Now if I found that in just a few hours of focus and time, how come several doctors could not figure this out?



Read all about this crazy disorder that I may have at http://www.mayoclinic.com/print/frontal-lobe-seizures.

Now I just need to find a doctor to either confirm or deny this and to effectively treat this for me so I can start to live my normal life again.

Thanks to the librarian at Kinnelon Public Library for her superb help and kind words. I don't remember your name, but you helped me more than any doctor I have seen in the last six months. Thank you!

Trembling with Fear....Still

I still get seizures and tremors while sleeping. I am getting very frustrated and upset at it. I am just very tired of not feeling well and just want to know what is going on with my body so it can be treated.

I went to the neurologist and she claimed it was anxiety and dismissed me.

I went to a psychiatrist who said that it is impossible to get an anxiety attack while asleep unless you have a sleep phobia, which I don't.

I had blood work done which all came back "perfect" as the nurse described.

I had an MRI done. I was so hopeful that this would give me an answer. It is really sad when you are hoping that the doctor will call to tell you that something is actually wrong with your brain just so that you know what is wrong. But no, the MRI came back normal.

I want to have an EEG done, but my primary care physician says that I have no need to make an appointment unless I am having a problem. News Flash! I am having a serious, constantly recurring problem of having tremors in my sleep causing me to be exhausted all the time. So should I call at 4 a.m. when I am having a tremor and tell them I am having a problem? Craziness.

I am going to a highly recommended doctor on October 5th. I made this appointment in June and have been waiting. He is my last hope, but I also refuse to stop fighting to find out what is going on with my body. I can't live like this for the rest of my life. The medicines they give me are inconsistent and I just can't handle this lack of sleep much longer. I really hope that this doctor, who was recommended to me by several people and physicians, will be able to figure it out.

I am just worried that there are no answers and I will suffer forever. I have been keeping a journal of every shake, tremor and seizure, as well as the times that I feel pretty good and what is working to stop the tremors (which isn't much). My boyfriend started video taping the tremors at night since I am asleep when they happen and we are going to show them to the doctor, in hopes that seeing it will give a clearer answer.

I just want to feel better. That is all I want. I just wish it would happen soon.