I was diagnosed 3 years ago with TLE. I have a couple of thoughts on this thread. Are you seeing garden variety neuros, or are you seeing an epileptologist? They are the docs that specialize in everything epilepsy. I have found that they are by far more informed of the ins and outs of dealing with epilepsy, especially TLE.
The question was posed as to whether or not some people have visions while having a focals. I’m not sure if I would call what I see a “vision” or a “hallucination” because while it’s happening it is very clear but when it’s over it’s difficult to find words for. It’s more like a memory that feels super real and familiar but at the same time I can’t tell if it’s a real memory or a false one. I have half trained myself to try to breathe through them and attempt to say “it’s happening again but it will be over soon” which works sometimes but not always. In some ways I wish that I didn’t have focal aware. I wish that my consciousness was altered and that I didn’t have to be awake for them because they really are terrifying. Which brings me to my next thought…
Suicidal ideation or thoughts tell me that you absolutely must discuss this with your care provider. Could it be a side effect? Absolutely. Could it be part of a postictal phase? Quite possibly. I don’t believe that you are alone in this. Everyone experiences epilepsy in their own personal way. Because TLE happens in the areas that process thoughts, feelings, emotions and memory, one can experience a literal TON of symptoms. I have run the gamut- I won’t let myself laugh my fool head off now because one time I had a seizure right in the middle of a belly laugh. Once, a seizure made me feel like I was being forced to relive the moment that I died over and over again. Postictal period ALWAYS starts with tears for me. I started crying huge tears after my third big seizure and insisted that my husband get the nurse just so I could tell her I knew the cluster was over because I was crying. I. Had. No. Idea. This. Was. Epilepsy. But it is. And man alive it’s messed up.
I have tried 2 medications so far. The first was awful. I was actually on it as a migraine preventative at the time of my first seizure. I thought the medication was actually causing them. I lost 20lbs, couldn’t eat, and was depressed, although not consciously aware that I was. The second medication is a much better fit, and while I’m not seizure free, I rarely have déjà vu or jamais vu moments anymore.
Keep that diary going, and don’t stop talking. If one doc won’t listen keep looking for the one that will. You got this!

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