Hello, new to these forums but glad I have found them, very useful.
15 years ago I was diagnosed with nocturnal epilepsy after having strange moments of paralysis during sleep. I was sent for an EEG which didn't show anything, I then went for a sleep-deprived eeg which did apparently show something. I was put on Tegretol (which has never fully controlled it) and that was that....
However, after reading some reports of similar experiences I'm not convinced that it is epilepsy anymore. This is what happens during one of the episodes, please could people that do suffer with SP or epilepsy have a read and let me know if the symptoms sound the same?
During my sleep I will sometimes 'wake up' but will be unable to move aside from maybe my fingers or tongue. My head will become really dizzy and will begin to 'pulse' to my heart beat. Once that pulsing has stopped my body remains paralysed until either I wake up properly or go back into REM sleep. I do not believe my body moves at all during this, no jerking movements as usually associated with epilepsy. My heart will also race during this, something that I'm not sure is related to SP or not.
During the episodes I sometimes hallucinate a little and sometimes think I have gotten out of bed when in actual fact I haven't. Also, sometimes I can feel one of these coming on before it actually happens.
If anyone has any advice I would be very happy to hear it. I am wondering whether to go back to my GP to be checked to make sure I haven't spent the last 15 years thinking I am epileptic for nothing.
Have you cleared out all the electronic/electronic gizmos from your bedroom , inluding an electric clock ? If so , try it. You may get some small relief. I've heard testimonials from epilepsy sufferers who have tremendous trouble sleeping. You shouldn't have anything running in the bedroom. It's even best to unplug your gadgetry completely from the wall.
I have nocturnal seizures and sleep paralysis. During sleep paralysis I suddenly wake up out of a deep sleep unable to move and while this happens there is like a tingling sensation throughout my body but the feeling is so intense it feels like electricity and the more time passes the more intense the feeling gets. It's like you can hear it a's well a's feel it. I have never had the hallucinations and I had it for so long that I learned to move a part of my body in order to come out of it. When I have a grand mal seizure in my sleep I never wake up to the experience but feel the after effects. Weak in my arms and legs, very tired, the tongue biting, headaches, confused and distorted for a while, sore muscles from the stiffness and the convulsions. It sounds like you have sp but I'm not a doctor. Did your doctor ever explain to you the type of epilepsy you have because different things can occur during the different types?
I had the same problem. I sometimes wake up feeling like someone's in my room just watching me and I can't move at all. Every time that happens I force myself to stand up which I've never failed to do and try to regulate my breathing. I just sit on the side of my bed and wait until the tingling numb sensation leaves my limbs and try to get up and have a glass of water. I tried doing many things to get rid of my SP and For me it was just a matter of the right kind of mattress.
Check this out and try to find the perfect one for you.