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Unusual post-seizure symptom

I had a night seizure around 3 AM, and 5 hours later got up to start my day but realized I had to go back to bed (due to typical post seizure symptoms for me of extreme fatigue, dizziness/imbalance/lightheadedness, mild nausea,etc.). While lying there but not yet asleep my upper lip, nose and head/face from my upper lip upwards felt like it had swelled to multiple times its actual size and the same sensation was in my right hand. I started to feel it starting in my left hand along with feeling like I was being pulled into a void (probably just the fatigue), but must have fallen asleep.
I have had hallucinations (if that's what these are) a handful of times before in the three and half years I've had seizures, but also 0-2 times a year at night throughout my life, but usually the "swelling" is confined to my head along with a sense of not being where I really am and feeling like I could be pulled into some void if I didn't focus on not going there. The sensation would last usually 30-60 seconds.

Can anyone out there say "aha, I've had that", or otherwise know it is seizure related,or is something else?

If it helps any: My seizures are "nocturnal simple, as well as possibly complex, partial motor seizures" as per the seizure specialist.  Am on wait-list for video EEG.


Re: Unusual post-seizure symptom


I read your post and I understand that after your seizures you have some wierd thing happening. I also understand that most of your seizures are nosturnal which I have read about several times. As for the types of seizures many of them are also happening to other people who have their seizures anytime. I have grande mal, pettite mal and focal motor epilepsy. All where diagnosed before doctors started specializing which happened in hte late 1980's and early 1990's which is also when they came out with types of seizures.

What you may be having is breakthru seizures. I say that because if your meds were controlling your seizures well then those breakthru's would also be controlled. I would siggest you get the diary at the top of this page watch the video and use it put all the information in and also note anything different on the note pad. WHen the doctor sees it he may come up with triggers procedures or other medication which can control your seizures better if not get you seizure free.

I hope this helps


Re: Unusual post-seizure symptom

Hi, Joe

Thanks for your reply. I do use the seizure diary, so that part I can check off my list of things I need to do :)   I hadn't considered the post seizure symptoms I had as being a break-through seizure.  Makes sense.  For the nearly 2 years I have been on the VEEG waitlist I've absolutely dreaded the thought of an extended hospital stay, at least in part because of the fear that, because I'll be lying around doing nothing (ie. not leading my every day busy life), I will have no seizures and therefore be no further ahead.


The best I can offer is a reassurance ,like you said that "A HA" moment . Yes be assured you are far from alone in these thoughts or similar behaviour especially in postictal time. or in that recovery after a sz.
I agree with Joe. But at the same time ,I "feel" that at least you have a clear picture of how your mind & body feel being "normal" that is why or how at least you have a good insight as to when these "abnormal" feelings are happening.
Without rambling to much,I do not think I have a clear picture of those "normal" feelings or thoughts actually are & when I do spend more than a week in that focused time or ,feeling o.k. ,I now "feel" that is now my scary time.
Almost like maybe I am nervous of feeling to "normal" ? :) So the seizure & the postical times are my "normal" & I am now addicted to those feelings.
Have you read much poetry or music that has been written by people who were in these periods ,recovery ? A LOT of very in tune but warped thoughts come from these times. Just reading how many others go through this is a BIG help. Rick

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