So dissapointed please read

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Regular Member

Date Joined Sep 2008
Total Posts : 20
   Posted 11/21/2008 3:39 PM (GMT -7)   
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 opinion? This neuro specialized in sleep disorders and epilepsy. It seemed that he never even considered nocturnal seizures at all and I thought he would ask alot of quesions regarding what exactly happens to me at night but he didn't. Just said "we'll find out with a sleep study.". But to walk out with a diagnosis of "some type of parasomyn(sorry sp) . I already knew I had some type of something already. I would have been happy if it was a diagnosis of nocturnal panic attacks all night if only he explained why he came to this conclusion. Me being not a doctor felt like I shouldn't be telling him that there are seizures that only last a very short time and sometimes do not show up on eeg .Should I just take the Klonapin and forget about a name for what I have if the med helps? thank you all

Veteran Member

Date Joined Feb 2003
Total Posts : 668
   Posted 11/21/2008 10:39 PM (GMT -7)   


Sounds like you might have a mild case of sleep apnea, this is what's causing your nocturnal seizures.

If your brain isn't getting enough oxygen due to mild Sleep Apnea, (from snoring or sleeping on your back, or anything else that could be causing an airway blockage)and you find yourself waking up in a "postictal" state (out of it, confused, angry or over agressive or still feeling tired and not rested) you should get your Doctor to refer you to a sleep specialist. They will do an EEG while you sleep.

You may find out that you have seizures during your sleep as a result of you stopping breathing and possibly reduce your medication. (AEDs)

This could cure other health problems as well such as: no more nocturnal seizures, no more waking up with a headache or in a post ictal state, more energy, better blood ciculation, more energy, decrease in the risk of heart attack and/or stroke.

Maybe it's worth checking into.


Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.

Veteran Member

Date Joined Jan 2006
Total Posts : 2408
   Posted 11/22/2008 7:53 AM (GMT -7)   

I would definately get a second opinion if you are not happy. A sleep specialist (As Randy has suggested) might be a good place to go.

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
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