Epilepsy/Seizures after Covid

This thread is an overlap of my 2 main interests - long covid and epilepsy. There appears to be a link between having had covid and new-onset seizures. I believe that’s what happened to me. My initial symptom was a TGA, followed a few days later by intense fatigue, then nerve pain. Two more years of long covid later and I have a tonic clonic seizure. I’ve had 2 seizures so far, or maybe 3 if the TGA counts. I believe Covid gave me epilepsy. My doctors do not even seem to be aware there is a connection between having had Covid and developing epilepsy. I am the first patient in the local long covid clinic to develop epilepsy, and I tell them to be on the lookout for more to come. Covid can damage the hippocampus, which explains brain fog and memory issues, and looks like this damage may also lead to epilepsy later on. Are there any places in the US or worldwide doing research on possible covid to epilepsy connection?

Dear @earlylonghauler
Thank you so much for sharing such relevant information.
So, if I understood well your post, you did NOT have epilepsy before you had Covid, correct? Or did you perhaps get aware of your epilepsy through Covid? I am asking that, because, though I have had epilepsy since I was a teenager (I am 52 right now), I only got this diagnosis when I was 48 years old when my epilepsy started to show its face. In 2017, I had a burnout and with that, my epilepsy (mesial temporal lobe one with damage on my hippocampus) has evolved, having more seizures and stronger. My seizures before 2017 were very rare (3 per year) and very mild and I had no idea I had epilepsy at that time. I had a totally normal life. I got epilepsy by taking the medication my grandfather left unadvisedly on his night table when I was 5 years old, getting into convulsion and later in a coma with the wrong medicines that were given at a local hospital. Through that, I got my epilepsy, according to many doctors I have seen. Medication as I have self-experienced can cause epilepsy. As I mentioned earlier, the J&J vaccine against Covid has caused me many seizures.
Did you get your seizures right after Covid? Did perhaps any medication that was given to you during your Covid treatment bring some harm in this respect? What kind of seizures do you have?
I do hope you get your seizures well under control. If I can be of any help, feel free to reach me.
Keep giving us news from you!
All my best!
Chris /Santosha

Hello Santosha, Correct - I believe Covid gave me epilepsy. I was 60 when I believe I got Covid, and my first covid symptom was amnesia, followed by fatigue and nerve pain. This was early in the pandemic so there were no covid antibody tests, no medications, and nothing to do but stay home if you were sick. No meds were involved other than ibuprofen for headache. After years of long haul issues, at 63, I had my first seizure 3 months ago - a tonic clonic. At the hospital when they told me I’d had a seizure, I told them “I don’t get seizures”. So yes, covid first, then seizures. It can happen in 1 of 100 people that get covid. No meds instigated the seizure, just long covid.

Article on Covid leading to Epilepsy: https://www.webmd.com/covid/news/20221119/covid-19-raises-risk-of-seizures-epilepsy#:~:text=Nov.,be%20treated%20for%20COVID%2D19.

@earlylonghauler, Good Morning!
Thank you so much for sharing your experience and this article with us. Here we learn so much with one another.
I am very sorry you got epilepsy through Covid. How have you been dealing with it? I understand your seizures are now controlled through medication, correct? I hope you have been adapting well to the medication. What kind of epilepsy did you get through this terrible experience?
Feel free to ask your questions here at the group, as we might be able to help through our own experiences.
My blessings to you!
Chris (Santosha)