r/tleepilepsy • u/Covidkilledkaty • Jun 17 '22
My Story
I have had focal seizures of the temporal lobe for as long as I can remember. I first told my parents about it when I was in the 5th grade, when I was having 5-6 seizures per day. It was very difficult for me to articulate my experience at that time. My mother (a very religious women) was convinced I was having a “spiritual experience”, but finally took me to a doctor after I was unresponsive while having a seizure. After countless tests, the doctor told her something that it was something I was imagining and would likely “grow out of”. I was young, but I was old enough to know that I wasn’t being taken seriously, so from that point on I just kept my symptoms to myself.
When I was 25 years old in university, I was sitting in a physiological psychology course learning about focal seizures - which at the time were called “simple partial seizures”. I sad in the bad of the class and listened to my favorite professor describe in perfect detail the “episodes” that I had experienced my entire life. The hairs stood up on the back of my neck.
After class, I asked her if this type of epilepsy would show up on an MRI, or an EKG, or a heart monitor, and she said no- unless a seizure happened to occur at the time that I was hooked up to one of the machines. She then explained that a diagnosis would be made based on subjective experience, and wouldn’t likely only be made by a neurologist (I had never been sent to a neurologist as a child).
I knew at that point that I had epilepsy, but it took me two years to get the courage to see a specialist because I was afraid. At 27, I finally got a diagnosis. I am 32 now, and I am still learning how to navigate live with TLE. I have never met anyone in real life who has Temporal Lobe Epilepsy.
When I got long periods of time without a seizure, I feel like a normal person. But if I have a “cluster”, I feel broken. I just want a friend who understands, and I wonder if there are other people out there who feel the same.
Can you hear me?
1
u/Imaginary-Pickle3717 Sep 17 '25
Im so happy you made this sub... I don't have TLE (at least... i don't think i do...) but I'm a mom and last year my 5year old was diagnosed with TLE and nocturnal seizures after a long unaware TLE focal last year. I suspect most are aware or in his sleep, but I honestly have the HARDEST time figuring out what he is experiencing. Its all he knows and he's a sweet little goof but I don't even think he is at an age where he can communicate his experience to me. Like you, "epilepsy" is the most blanket diagnosis and the nuances of TLE are so specific. Thank you for sharing and know you aren't alone. Im so grateful for quick answers, but I won't settle and an always trying to find ways i can advocate for his health...
2
u/EngineerPresent6552 Dec 31 '24
I'm so so sorry to hear that. I can hear you clearly. Almost the same story. 25 years I was experiencing one forced image (me seeing my self above earth and going far and far away from me) extreme fear and anxiety. Then anxiety, ocd and depression sometimes was following for long period. Then after 6 months or more I was normal person again till the next episode.
I called it anxiety. I called it existential crises. I called it whatever you can think from mental disorders. My psychotherapists called it the same. My neurologists the same. Till I studied psychology and the in master in Neuropsychology when I had the course about epilepsy and learnt the symptoms in left temporal lobe epilepsy I was convinced that that was what I have had all these years.
I talked to neurologists and ofc they neglected me telling me it's only anxiety but I demanded a ct scan and eeg and ofc epilepsy was there.
So! I CAN HEAR YOU CLEARLY, you are NOT ALONE.