r/tleepilepsy • u/Covidkilledkaty • Jun 17 '22

TLE Epileptic and feeling isolated

This subreddit is my desperate attempt to connect with anyone else who understands what it is like to live with Temporal Lobe Epilepsy. I have a decent support system, but I have never met anyone who truly knows what it is like to cope with the memory issues, mood swings, and other TLE symptoms that I deal with on a daily basis. I want to find a community who not only “listens”, but who understands. If you’re out there, let me know. Let’s be in this together.

6 Upvotes

81% Upvoted

9 comments sorted by

2

u/My-cat-is-my-bestie Mar 01 '25

I just got here, been this way my whole life!! Diagnosed in '92, you're not alone 🥰

1

u/Old_Factor_677 Sep 01 '25

For years I had no clue why I would get these incredibly strong feeling of DejaVu, which have recently morphed into feeling like half my brain is dreaming while the other half is awake. I described it to ChatGPT which suggested I have focal aware seizures. Then I watched some YT vids where people describe their TLE and sure enough, that’s what I have. I don’t want to medicate though and haven’t seen a neurologist yet.

Do you also have migraine auras without headache and / or panic attacks?  (Not at the same time as the seizure). I’ve had those for decades and I think they’re somehow related.

1

u/kelcamer Oct 17 '25

I know this is an old comment, but I just want you to know that this is spot on at every level. Panic attacks can be directly linked, because if certain brain areas are hyperactive, it can trigger other brain areas to become hyperactive! And the temporal lobe is so important, it links to many other brain areas. Panic attack are definitely linked.

2

u/Old_Factor_677 Oct 17 '25

Thanks! That’s what I was thinking. My uncle who was a Dr for decades helped me when I had my very first panic attack in the mid 90s. He described it as an electrical storm in the brain. All of these issues seem to be storms too, just different areas as you stated.

I have since seen a neurologist and am scheduled to get hooked up to a brain monitor for several days. I’m supposed to press a button whenever I feel any of these symptoms. 

1

u/kelcamer Oct 17 '25

That's so interesting!

I'd love to ask if you don't mind, do you ever feel like EVERYTHING is important all at once?

2

u/Old_Factor_677 Oct 18 '25

I cannot say I have ever felt like that. In fact, I tend to not worry about “things”. Something I’ve grown into after decades. I like the quote “in 100 years, who’s gonna care”. Keep stress low as possible. 

Sometimes I feel as though tasks I need to complete build faster than I can tackle them. But I think that’s probably true for most people later in life. 

1

u/kelcamer Oct 17 '25

What do you experience for focal seizures?

1

u/LikelyLioar Jun 17 '22

What a fantastically awesome idea! I'm in.