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.

Trembling with Fear

I am terrified, worried, afraid, upset, sad sick, nauseated and confused.

A few months ago, I started getting little twitches in my arms and legs while falling asleep or laying down. I ignored it at first because it was manageable. But then I was getting no sleep at all after a while and I went to the doctor and he diagnosed me with Restless Legs Syndrome and he gave me an anti-convulsion medicine.

I took the medicine and I was happy that I could sleep at night but then the twitches started happening during the day, so at the next appointment, the doctor raised my dose.

I took the new higher dose and began having violent full body movements while sleeping. They occurred several times a night and would wake my boyfriend up but I would sleep right through them. The doctor told me I had to go on a sleep study but to remain on the same dose of medicine.

Last week, I began having tremors and seizures. First, my right hand will shake, like a person with Parkinson's Disease would have. Then my whole right side will tremble. Then I have a strong urge to lay down and then my entire body will go into seizure. Most of the seizures I don't remember, it is like I am unconscious. I went back to the doctor and he gave me a higher dose of my current medication as well as a new anti-seizure medicine.

I took the medicine as directed and went to work. I had a tremor at work. I don't think that it was a full on seizure because I remember the entire event and I usually don't when I have a seizure. But either way, it was horrible because it was a work, at a job that I just started on Monday. I was trying to hide the seizure thing from them because I work with kids and I didn't want to get fired. But that only lasted so long....in fact.... 4 days. Well they won't let me come back to work until i have a note from the neurologist saying that I am capable of driving and working with children.

I can't really worry about the job right now. I wasn't there that long and that isn't even what matters right now. What is important is my health. I am scared to death. The doctor did mention a possible seizure disorder. I just want it diagnosed. I don't want to continue taking these meds, that most of the time do not work, just to mask the symptoms. I want to know what is causing them and what the diagnosis is. I'm scared of it all but I will deal with it as it comes. I have to just trust that things will be ok. Thank goodness for me that I have a great family, boyfriend and friends that love and support me.