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)

Hi Chris,

I am coming up on the 1 year anniversary of the Tonic Clonic in 2013 that got me diagnosed with Epilepsy. I had been calling it my "first" seizure, but the neurologist believes my first seizure was the relatively mild one back in 2020, when I believe I was infected with Covid and woke up with Amnesia. I recently had a sleep study done recently and they determined my seizures originate in the right temporal lobe. Medication is not yet fully controlling my seizures. Initially I was on Keppra, and it did a good job of controlling seizures for about 3 months, but I asked to be taken off of it because gave me "Keppra rage". My neurologist switched me to Vimpat, which is much better for mood, but unfortunately it does not control my seizures as well as Keppra. I seem to have a seizure at least every other month or so on Vimpat, so a year after diagnosis I still cannot drive. Vimpat affects me physically more than Keppra did - Vimpat makes me a bit wobbly on my feet, and clumsy in general. I have possibly fractured my thumb, and damaged the nail matrix, simply by putting things away on a shelf, misjudging where the shelf is, and whacking my thumb against it full force. The damaged thumb makes the nail grown in bumpy. Next week I see a hand specialist to see if they can repair the thumb and nail matrix. So I really don't want to increase Vimpat dose for fear it will make me even clumsier and more prone to injuring myself through activities of daily living. I'd rather go back to Keppra if it does a better job of controlling seizures, and just deal with the mood issues, but my neurologist seems to want to stick with Vimpat and increase dose if necessary. I don't know if I should stick to my position and ask to be put back on Keppra, or just go with whatever the doc recommends and increase Vimpat. Decisions no one wants to make, but have to be made.

Hi @earlylonghauler
I am very sorry for all you have been going through. Having been at your place before, I know how challenging and difficult those experiences with medications can ben.
I understand there was a typing mistake, you meant 2023 instead of 2013, correct?
Temporal lobe epilepsy has a higher percentage of refractory epilepsy and medications are not enough to control seizures, unfortunately. I know it myself as I have temporal lobe epilepsy with sclerosis on the left side. Has your doctor checked if you have any kind of sclerosis? Having an sclerosis on the temporal lobe, increases even more the changes of refractory epilepsy.
I copy here a link from the Epilepsy Foundation with information on temporal lobe epilepsy that might be helpful to you: https://www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy
I have tried Vimpat as well and from the 5 different AEDs I tried out, this was the worse one with a large quantity of side-effects (inbalance was one of them). The neurologist at that time did also not want to switch Vimpat. So, I wished him for an epileptologist. It was the best thing I did. Being treated by an epileptologist instead of a neurologist or psychiatrist as I did my first 3 years of epilepsy treatment has made a huge difference in my well-being. My epileptologist confirmed my refractory epilepsy and has put me on Epidiolex (CBD from medical cannabis). I felt much better and with very little side-effects. I still had some seizures, but much milder than while being treated with AEDs. A gluten free diet was then added to my treatment, reducing my seizures by 60%. Here is an article of Dr. David Pertlmutter about epilepsy and gluten sensitivity: https://drperlmutter.com/epilepsy-gluten-sensitivity/
I am now trying an anti-inflammatory diet and have had some positive results. But it is yet too soon to be affirmative. Let's see how it evolves.
Keep strong and walking! Wishing you all the best!!!
Chris (@santosha)

Thank you so much for all the information. I have never heard of refractory epilepsy, will definitely review the links you’ve provided. Yes typo - meant 2023. Vimpat does cause issues with balance and
coordination. When I first started taking it, I felt like I was rocking on a boat. My neurologist is a young epileptologiat - I will ask about these tests and treatment options. I am trying a Keto diet, which I’ve heard helps. All the best!

My pleasure @earlylonghauler
The keto diet definetely helps, but it is a quite difficult diet to follow according to my experience. Taking gluten out of my diet was so much easier than I thought!
Best of luck!
Chris (@santosha)

Hi @earlylonghauler
There is a movie about the story of the Charlie Foundation on YouTube for free. It has the participation of Meryl Streep. The Charlie Foundation for Ketogenic Therapies was founded in 1994 to provide information about diet therapies for people with epilepsy, other neurological disorders and select cancers.
Here is the link to the movie called "First Do no Harm": https://www.youtube.com/watch?v=tHZnuhqVTgY
Chris (@santosha)