Hi there and Welcome to Healingwell,
Like Gracies Mom, I am curious to know what the neuro has said about this. It does sound like night seizures but I am not a doctor. Do you take any meds for your epilepsy? It is possible that an increase / change in meds would solve the problem.
Re EEG not showing any abnormal activity: Sometime epileleptic activity hide deed withun the brain and doesn't show up on an EEG or MRI.
Have you had a 24 hour EEG where they can monitor your brain waves during your sleep ?
Or been to a sleep clinic?
I was having the same thing as you for 28 years and found this study VERY interesting.
Re Having seizures during or just before you sleep: Could be due to lack of oxygen to the brain while you sleep from sleep aids such as certain AEDs, sleeping pills, severe snoring or some sort of restriction to the airway.
I have recently been dx'd with Chronic Obstructive Sleep Apnia. After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out) I have recently purchased a CPAP machine (Constant Positive Air Pressure) which provides constant air pressure and have noticed a vast improvement. No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES. Now maybe my Neurologist can reduce my meds. I'm surprised that finally after 28 years I finally get an answer.
Thanks to all of you for your responses. I have had it happen a couple of times since. I take Klonopin but no other epilepsy drugs. They never seemed to help. I had a cervial spine MRI done, which shows bone growth, fusion, and impedement of my spinal cord. My chiropractor thinks there could be lack of spinal fluid to my "junction box" at the base of my brain. That is the closest I have come. I have had 2 24 hour eegs, both of which failed to produce any abnormal brain activity. I guess sometimes there just aren't any difinitive answers to our ailments!
It is true what you say. Sometimes, despite all the medical technology around, we cannot get a definitive answer and for some people that is very frustrating. You are the expert on your body and if you have have epilepsy all your life, then you know what a sz feels like for you.