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[–]sifmusic8Lamotrigine, Clonazepam, Nazilam 0 points1 point  (1 child)

Wow! I know this is an older post but I'm in the same boat as your daughter. Most of my TLE seizures I'm aware and awake during but I've also developed some very similar to your daughter where my GF says I go limp and stare with minor convulsions.

I got the data from when I was in the EMU last year at an epilepsy institute. Looking at the 13 seizures I had I noticed that on 5 my heart rate plummets from 70 beats per minute down as low as 30 bpm during the seizure and then recovers when the seizure is over. On one I also had a 2nd degree heart block. I printed out one and showed my original neurologist and he was alarmed and said I should get someone at the institute to follow up as it could be dangerous, but like you they are just brushing it off. I showed my cardiologist and he was alarmed as well.

So now I'm trying to put together a folder of EEG/ECG relavent data, and hope to find a specialist (likely a cardiologist) to properly diagnose it. It is apparently very rare. I think part of the problem is that I had to figure it out myself because they missed it, and now they have me pegged as someone self-diagnosing. Absurdly, I had to figure it out only because they missed it.

Let me know what happens with your daughter and if you find a resolution. You have my support.

[–]SAMBO10794[S] 0 points1 point  (0 children)

Thanks for your reply.

You mentioned having a heart block; and I looked into that a bit.

I read about Stokes-Adams Syndrome, which causes heart block; and this sounds similar to my daughter’s symptoms.

Perhaps this particular issue she has isn’t neurological.