I had a craniotomy 24 days ago for an unruptured left frontal AVM. Last night I woke up rather suddenly thinking I had been awoken by a noise. I felt confused but was able to speak etc. I had a vague memory of my left leg jerking. Or was it a dream? I don’t know if it happened or not. And it happened later in the night again. Can you have seizures and not know that they happened?
I had an EEG in February and they couldnt see any seizure activity around my AVM at that time.
I have my first follow-up appointment with the neurosurgeon in 2 days.
As a mom of a child diagnosed with epilepsy, I’ll answer. Yes, you can have nocturnal seizures, or seizures at any point, without being aware. There are 2 types of focal seizure, aware and impaired. And of courses, there are generalized seizures as well.
What you’re describing, sounds like it may not have been seizure activity, but the only way to know for certain would be to have an extended EEG. Often an in-office EEG for an hour or two won’t show much, but an extended one will. I’m glad to hear that you’re following up with your doctor shortly. Let us know how you’re doing.
Sharon
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I have had them. A few woke me up.
Some left me with paralysis in am but dissipated within an hour.
My doc said it was a negative seizure vs a positive one with the jerking.
Unsettling but ask doc anyway because I have not had craniotomy. My friend is still there!
Hi Sharon
Aware and impaired?
I know several types but not by those names …?
@aliveandkicking - Seems like you and i have a slightly similar history. I had a right anterior temporal lobe AVM treated with embolization and then craniotomy in Dec of this year.
I had been describing to family and other close friends stuff that had been happening to me for a decade. Now that I know what they are (after talking to neuroglogists) and having a reason to think I might be susceptible (the AVM) this seems like partial / focal seizures . For me it can be just ephoria, racing heart, nausea, disorientation, thirst, light-headed all sorts of stuff. And yes, it wakes me up at night. Sometimes it happens in social environments or when doing something athletically and I’m very uneasy. To be honest, when it happens at night, I usually just realize I’m somewhere safe and have learned to sit back and the enjoy the experience. I’ve read people describe them as out-of-body experiences or mini-lsd trips.
However, for me one episode of waking up, realizing I was safe in my friends bed and relaxing and going for the ride was literally the last memory I had before waking up in massive pain with a rare type of dislocated shoulder. The assumption everyone and the doctors made was I had a full generalized shoulder and dislocated my own shoulder.
I found this sight interesting and it describes very well what I’ve experienced:
How have you progressed? Any more and have you learned anything? One piece of advice is to keep a log of what you experience. Good for your own reference and talking to the docs.
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