neuro no diagnosis please someone read this - Epilepsy Message Board

chis · 11-21-2008, 01:49 PM

I am 49 and for years had what I thought noone in the world has when they sleep. I fall asleep okay only to awaken doing weird body movements and then leaping out of bed. Sometimes I awaken to feel it coming on and try with all my might to stop it. It feels like a wave going up to my head and my legs and arms start tensing, toes pointing. Then I'm on the floor at times feel like breathing is weird and I'm kicking the furniture. My husband said sometimes I'm looking at him and my hand has all fingers together and I'm toouching his face. This I don't remember doing but I always remember the actual body convultions and leaping out of bed. I just don't know why I leap out of bed. It's all over in about 15 seconds and then I fall asleep again and it happens all over again all lnight. It's gotten to be every night now and multiple times a night. I get no sleep. Finally went to a neuro and eeg was normal. He said since eeg is normal I do not have seizures. Went for a sleep study and I was freezing because tech said must keep air on high so I don't sweat and elecro falls off. Also felt funny about someone waiting for me to fall asleep and watching me. So I slept only 201.3 minutes out of 466. Tech asked my history and asked if I snored. I said not that I know of but my husband does and sometimes keeps me awake. So he puts on paperwork that I complain of frequent nocturnal awakenings and loud snoring. I had 96 arousals for an average of 28,.6 per hour and 11 leg movements index of 3.3 per hour of sleep. When I had one of my arousals he yelled in microphone if I was okay and I said yes but the electrodes on head came off. So he writes on paper that I aroused from NREM confused. So neuro read all this and said I have maybe sleep walking. That's just what this young tech said I might have. I have nothing close to sleep walking. Neuro said if it was seizures I would be longer then the 20 seconds or so. So he gave me a prescription for Klonopin with a diagnosis of "some sort of sleep parasonym". Please your advice and should I get second opionion.

chis · 11-21-2008, 01:59 PM

I just want to ad that I had no speep apnea . Also this is a neuro that specializes in sleep disorders and epilepsy. It seemed that he never even considered nocturnal seizures at all and I thought he would ask alot of questions about what I do at night and he didn't . Just said we'll find out with sleep study. But to walk out so disapointed that he just says "some type of parasomy"(sorry spelling) was horrible.

VA_girl · 11-21-2008, 07:07 PM

Well I've never heard of anything like that before. But when it comes to neurology, it involves some of the most complicated, unknown & misunderstood disorders. YES YES YES, GET A SECOND OPINION, get a thrid get a forth!!! Search all over the internet too, you must be your best doctor. I had seizures for 7 years, EEG's were normal, MRI's were normal. Then finally a problem with my eye led doc's to find a brain tumor! Even though all of the tests for years turned out normal. I had surgery & had seizures following, but I'm a long story......I am finally ok now, with the combo of regular and alternative medicine. My point is that you should question doc's, listen to your body, have an open mind & don't give up.