Seizures after COVID-19 vaccine

Hi @tch
I am sorry to hear that. According to what you have written to us, I understand that before the Covid Vacine your son did not have seizures, right? This was his first seizure experience, correct? What kind of seizures does he have, partial or generalized ones as well?
I had 10 days of continuous seizures (aura and complex partial seizures) with the J&J Covid vaccine in 2022. Horrible experience! I have reported what happened to me to J&J , but they did not give much attention. Very deceiving. It is clear to me that those vaccines can be a trigger for epilepsy seizures. We have to be very careful with them.
When this happened to me in 2022, I was already diagnosed with temporal lobe epilepsy. I got my epilepsy diagnosis in 2019 at the age of 48 years, but today I know that I have lived many decades with epilepsy without knowing it, as my seizures are mostly partial ones. I share here an interesting video I have seen recently of a young doctor who has lived the same experience as I did, being undiagnosed for a decade.

I am not a doctor but I would think this would be a temporary reaction to the vaccine and would not continue. What is your doctor telling you. Best of luck and God Bless.
ray hippele

So far it’s lasted 4 years. We have seen 3 neurologist and all are saying it could last the rest of his life.

Hi Chris, there is no epilepsy that runs in or family. He began having grand mal seizures 3 months after taking the vaccine in 2021. He is on Keppra and Depakote but still has occasional seizure. His neurologist has told us that 1 percent of the world’s population has developed seizures after getting the vaccine. He was told by his work that if he didn’t take the vaccine, they would have to let him go. That place is no longer in business. We have been to 3 different neurologist’s that have told us the same percentage. We have changed his diet to a more keto diet. He had a tall glass of orange juice a week ago and had a seizure right afterwards. I read that the high sugar and ph content can bring on the seizures. Looking for any help. Has anyone tried spike protein detox or methylene blue? I heard these might be able to help. Thanks for your concern.

I’m so sorry that your son is having trouble controlling his seizures. Even with the best care, only 2/3 of all people with epilepsy have good seizure control with medications and so unfortunately your son’s problem is not uncommon. My only advice: if your is son is not going to an epilepsy specialist at an Epilepsy Center of Excellence, it’s time to find care associated with a level 4 center. Not only does he have the best chance of seizure control, but there will be other supports which will help him live his best life even if the seizures are never totally controlled. I go to a level 4 center for seizure control, but for my other medical needs go to local doctors/hospitals.

Hi @tch
Unfortunately, I have heard other people being diagnosed with epilepsy after the Covid vaccines.
As @methel has well pointed out, I recommend that you take your son to an epileptologist. It has made a huge difference in my epilepsy treatment since the diagnosis in 2019. The first two years after the diagnosis, I went to different neurologists and psychiatrists, having struggled a lot with the treatment prescribed. I was even considering surgery after I discovered that I have mesial temporal lobe epilepsy in 2020, which is highly refractory (I do belong to the 1/3 of patients who have not much success with medications to control seizures or do not tolerate the meds well). Thankfully, I went to see a second opinion of a neurosurgeon who said I should explore other options before surgery, recommending that I see an epileptologist. An epileptologist will treat his or her patients much more individually and see what works the best for each patient. The Epilepsy Foundation has a 7/24 support line and could help you find an epileptologist who is closest to your place. I paste here the link: https://www.epilepsy.com/247-helpline.
Getting oneself educated on epilepsy has been something that has also helped me a lot in my journey. Through education, I could understand myself better and report more exact information to my doctor. Some good sources of education on epilepsy are The Epilepsy Foundation and Cure Epilepsy. Both have very good materials. I have also learned to understand what my triggers for seizures are. A book that helped me a lot was this one: https://www.amazon.com/Taking-Control-Your-Seizures-Treatments/dp/019933501X
I could greatly reduce my seizures by discovering my triggers and managing them. Triggers are very particular to each person.
I have heard of methylene blue which was once recommended to me by a neurologist with an integrative approach. My advice, take care with those approaches and try to get a good epileptologist to help your son.
All my best to you and your son!
Chris (@santosha)

@tch
Hi again!
Just one more piece of information I forgot to add in my last message. The book on trigger management is based on the Andrews-Reiter approach, which is FDA approved. Here are some links with more information on it:
https://epilepsyconference.com/aboutar.html
https://pubmed.ncbi.nlm.nih.gov/22341960/
https://www.andrewsreiter.com/
Chris (@santosha)

I had previously messaged that "I would think this would be a temporary reaction to the vaccine and would not continue." Your reply was it had continued for 4 yrs now. There is SO much unknown about seizures. Let me take the other side of the argument. You think or assume the vaccine started the seizures. We do not know that for sure. Seizures can start at any time of life at any age. For example, I had my first seizure at 69yrs old. All tests were negative. Go figure. And you assume a glass of orange juice triggered a seizure. Again, so much is unknown with seizures, its like throwing darts at a board. Maybe in a 100 years we will have a clearer understanding and treatment for seizures. For now, it seems doctors throw pills at you and seem to say "see if this helps". Not very reassuring. God Bless and good luck!
ray hippele

That’s exactly what happened to my son! We told that 1% of the worlds population has developed seizures after taking the Pfizer vaccine.

Hi @tch
I came across this article, "COVID-19 Vaccine and Seizures: What's the Risk?" and thought of you:
https://www.myepilepsyteam.com/resources/the-relationship-between-covid-19-vaccines-and-seizures/
There are no epilepsy records in my family either. My epilepsy was caused by an accident when I was 5 years old. Epilepsy can be both genetic and acquired.
Wishing you a nice evening!
Chris (@santosha)