I'm Kat, I'm 34 years old and was diagnosed with temporal lobe epilepsy last year after years of misdiagnosis. I am a behavioral neuroscientist by training, and I am a current PhD student in Integrative Biology.
When did your epilepsy journey begin?
My epilepsy symptoms first began in my early 30s. I had just been diagnosed with a rare migraine subtype called Basilar migraines, and I had symptoms of a specific weird gastric feeling, auditory fluctuation, and then I'd pass out. The significant moment for me in realizing that this might be something more than just my migraines was when increasing my migraine medication did nothing for this specific set of symptoms, but my doctors took no further action to help me. It wasn't until I moved to Southern California for grad school that the neurology team there started investigating my symptoms more.
Read more: Is there a connection between migraines and epilepsy?
What type of epilepsy do you experience?
In August of 2023, I was formally diagnosed with Temporal Lobe Epilepsy. I experience focal aware seizures ("off" gastric/abdominal rising sensation, followed by an auditory fluctuation of loud ringing in both of my ears and/or total sudden deafness), and I experience impaired awareness seizures. There have been no witnesses to my seizures, but I have woken up face down on the floor before with cuts, bruises, and welts on my head.
What has your experience with doctors been like?
My experience with Northern California neurologists has not been great, but my new Southern California team has been incredible. My first neuro down in SoCal thought to run an EEG on me, which came back abnormal, and as of the last week of February 2024, I got referred to a level 4 epilepsy center in LA, and I'm so happy that I got transferred. Now I'm on a moderate dose of medication (it's my 8th seizure med I've been on), and I'm working with a keto dietitian and have been put on a Modified Atkins Diet. So far, it's working well!
Learn more: How to find doctors who specialize in epilepsy
How have you found support for your epilepsy?
I run a science communication account on Instagram (@neuro.gal.kat) where I share my life as an epileptic, disabled grad student in LA living by myself! And yes, I share great joy in being part of the disabled community, and the epilepsy community has also been wonderful! I can't wait to go to the Epilepsy Walk in Pasadena this year!
Read more: How to find epilepsy support groups
Experience with the Epsy app
The Epsy app is the only reason I remember to regularly take my AM/PM seizure meds. It's great that I can also track both types of seizures and write notes pertaining to each one, so I can bring these notes to my healthcare team.
What would be your message to someone recently diagnosed?
My advice would be that it's honestly tough getting diagnosed with a disease like this. Be kind to yourself, and the first thing you should try to do is take detailed notes surrounding your seizures (Epsy app can help with that!) so you can try to figure out what your triggers are and how best to avoid/manage them. Also, if your physician isn't working in your best interest, it's okay to get transferred to a level 4 epilepsy center. I wish I had pushed to get transferred sooner.
Learn more: 7 common seizure triggers to be aware of
Want to share your story?
If you’d like to share your epilepsy journey like Katherine, email our team at contact@epsyhealth.com – we’d love to hear from you!
