← Return to Epilepsy/Seizures after Covid

Discussion

Epilepsy/Seizures after Covid

Epilepsy & Seizures | Last Active: Jun 7 3:49am | Replies (20)

Comment receiving replies
@earlylonghauler

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.

Jump to this post


Replies to "Hi Chris, I am coming up on the 1 year anniversary of the Tonic Clonic in..."

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)