Seizures after COVID-19 vaccine

2 days after the 2nd Pfizer Covid vaccine I started having absence seizures. I was tested for epilepsy and was told that is not what is causing seizures. I was then immediately told if it’s not epilepsy it’s conversion disorder (pnes). I absolutely don’t agree with that. I was fine before the shot. Now I’m on long term disability and they want to cut my benefits because the doctors are saying pnes and won’t even entertain the idea that the vaccine caused this. I feel like I’m fighting a losing battle and not sure if I will ever be seizure free.

@crysdickson
Welcome to our community at Connect.
I am truly sorry to hear your story.
I imagine you've had an EEG that came back normal. I've had epilepsy since I was a teenager, and all my EEGs were normal too. At that time, I had mostly mild focal seizures with brief absence episodes. I wasn't officially diagnosed until age 48, when my condition evolved. I later learned that a normal EEG doesn't rule out epilepsy.
I'm sharing some earlier discussions from our group related to this:
- Husband's 72-hr EEG results normal but he was having seizures
https://connect.mayoclinic.org/discussion/husbands-72-hr-eeg-results-normal-but-he-was-having-seizures/
- First EEG was only 1 hour and was normal-what next?
https://connect.mayoclinic.org/discussion/first-eeg-was-only-1-hour-and-was-normal-what-next/
- Common? Hard to prove epilepsy to the doctor when the EEG is normal.
https://connect.mayoclinic.org/discussion/its-hard-to-prove-to-the-doctor/
There has also been a recent discussion on PNES in our group that might interest you:
- Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
What kind of doctor gave you this diagnosis? Have you considered getting a second opinion, especially from an epileptologist?
Chris

@santosha I have 2 of the eeg’s and did the in hospital epilepsy study. Even though the nurses were present when I had seizures I was told it’s not epilepsy because none of my seizures registered on their side/equipment. This was from a neurologist that specializes in epilepsy and he said immediately that because it wasn’t epilepsy that it was conversion disorder. More or less it’s in my head. 2 years later I’m still having daily absence seizures. My long term disability will only cover 2 years if it’s labeled mental. It’s so frustrating because I know it was from the vaccine

What are symptoms of guillain barre after flu vaccine? Does it start the next day? Does it include not being able to move feet or legs? And incontinence?

Hi @crysdickson
I really understand what you're going through. Last August, I went through something similar—I was hospitalized after experiencing a series of seizures that, surprisingly, didn't show up on my EEG this time. They were classified as PNES (psychogenic non-epileptic seizures), which is a type of conversion disorder that presents as seizure-like episodes. Through that experience, I learned that some people can actually have both epileptic seizures and PNES.
There's a wonderful discussion about PNES in our group that you might find helpful. I'll share it here with you:
Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
If you're comfortable sharing, I'd love to hear how your neurologist has been approaching treatment for your conversion disorder. It would be really helpful to learn from your experience!
Sending you my support and understanding!
Chris