Was this a seizure? Please help!

Hello there, recently i have had two truly terrifying experiences and wanted to gauge whether others think was a seizure and what my next course of action was. For context i am 44 year old father of 2, keep fit, probably drink too much and probably slightly overweight.

I had 2 strokes 10 and 8 years ago, the second of which was an AVM that required stereotactic radiosurgery and then invasive surgery. This has left me with some weakness on one side of my body

Both instances I have woken in the middle of the night feeling like i had slept on my rightarm and it was numb, i went to shake it (to get feeling back) but as i did it started convulsing, quickly followed by my right leg. This wouldnt stop and it was then i became paralysed completely and unable to talk. I tried like hell to sit up, roll over but i couldnt move, by this point my leg and arm were in agony from the muscle contractions. I was in absolute panic, terrified and wondered i was having another stroke (it felt nothing like the 2 strokes where i could move at least parts of my body). I then felt myself slipping out of consciousness and honestly i thought i was dying. I must have come round at some point afterwards having stopped shaking but my back, arm and leg were in agony and I had bitten my tongue which had bled . I had no idea how long i was out for

Does this sound like a seizure ? Could I develop epilepsy so long after the avm removal ? Booked to see the neurologist next week but would really like to get opinions as im so worried and the seizures have been truly terrifying . Also fear I will lose my driving licence

Hi Joe, I had to lose my licence for 1 year after my surgeries (2 craniotomies in 7 months) I too am from the UK (Glasgow) I’m not sure if this was a seizure or not to be honest (Sounds like one if you bit your tongue), If you are told not to drive for 6 months unless your job requires it its not such a huge issue with public transport in the UK, And think on it this way what happens if your driving past your kids school at lunch time and this happens again ?, Sorry for pointing this out but you have to think of the bigger picture, You need to be checked out and I hope its all good. I too am a father of 3 young boys and now recently one daughter (5 months) I suffered my stroke and both surgeries within 7 months of each other but was put on anti seizure meds (Keppra) after my stroke and have been on it ever since, This has been my saving grace I think as I had an issue not that long after my 2nd surgery which my wife seen and we went to the hospital and the docs first question was, have you taken your keppra today and I wasn’t sure. Now I never miss it. Hope this finds you well and take care


Thanks for the prompt reply Martin - im in Edinburgh actually so not far ! Seeing the neurologist at the western general a week tomorrow and can’t come soon enough. Just seems strange to have these start happening so long after the surgery which has ms fearing all sorts of things - need them to tell me they are seizures too and confirm the non driving

Hi Joe, Yes Edinburgh not too far , Its good that your appointment is not too far away, The docs usually lean to the side of caution so expect the driving thing to not go so well my friend, But I expect that in the long run you’ll be fine, Just let the doc do there jobs and go with it, You still young and have plenty of time to come back from whatever they throw at you, I’m in the exact same boat as you being 40 slightly overweight (I think) and maybe drink a little too much but much less now that I used to before the surgeries lol !, I guess that’s just part of being Scottish ! :slight_smile: , So know how you feel having to stop driving for a little while wont be that bad if it comes to that, Just make sure you set your sights on your health and family :slight_smile: .

Cheers Martin.

Better to check with neuro. I say most likely, but I’m not an expert. Better to talk to someone who specializes in seizures.

It sounds like one. I’ve had similar effects from having a grand mal seizure. One side of your body falls asleep and then you have a bad feeling something will happen. After having one it takes some time before being able to move one side of your body and it feels like you have just run a couple miles and worn out.

Thanks for the replies. What I’ve had both times didn’t seem to fit the usual description of a epilepsy tonic clinic - indeed in some ways I wish it had as I would have been unconscious during the convulsions and not been in agony or so terrified

Will update on what neuro says on mon but was given all clear in 2013 so pretty worried

1 Like

Saw the Neuro today - diagnosed with Epilepsy. Apparently these were complex focal seizures leading to secondary generalised - so time to start a new battle! Starting the meidcation (Keppra) tomorrow

I’m on Keppra for the same thing caused by my avm.

@Kell - has it controlled / eliminated your seizures out of interest? What dose are you on? Any side effects worth knowing about?

Joe it has eliminated my seizures. 500mg two times daily. I get tired and find that I need to eat when I take it so I don’t get dizzy although it doesn’t say anything about eating with it. To me the benefits out weigh the side effects.

Thanks Kell, apparently the scar tissue is what has caused the epilepsy so am hopeful the keppra works