Seizures and Epilepsy diagnosis after Covid

Posted by earlylonghauler @earlylonghauler, Nov 20, 2023

Anyone else get new-onset seizures or Epilepsy diagnosis after Covid? After 3.5 years of long covid I had a new-onset seizure and was diagnosed with Epilepsy. I have read that 1 on 100 people who get Covid may develop seizures or Epilepsy. Where are my peeps?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

You might consider getting tested for celiac disease or other autoimmune disorders that have seizures as a possible symptom. Covid and other viruses/bacteria can trigger autoimmune diseases (knowledge isn't always fun but is fundamental). Keeping a food log to see if you are sensitive to any food groups helps as well. Some recommend a FODMAP diet trial. Good to know if gluten or other foods initiate seizures, which could reduce frequency and medication needs, Your neurology link has a number of articles on celiac. You may not get a lot of responses to your question; there is still a stigma and discrimination associated with epilepsy.


I don't have a new seizure disorder - mine is decades old and largely harmless (I avoid triggers, meditate, etc, and I've been mostly seizure-free since I was 25).

About that 'mostly,' though... I've had seizures come back twice since: once as a medication side effect, and once when I was sick with Covid. I didn't have much of a fever at all, but spent two weeks fading in and out of sleep, and I had some mild seizures several times during those weeks. Afterwards, it went away. 🤷‍♂️ Rona's weird.

I definitely agree with @kayabbott 's recommendation; look into possibilities that you now have a seizure-triggering food or other factor that didn't cause you trouble before. A lot of people have found Covid has almost reset things in their systems - my allergies changed, and I have digestive issues that are starting to look like Crohn's Disease, and neurological problems that my doctor finally diagnosed as chronic fatigue and fibromyalgia. I never had any of this before!

Wishing you the best of luck 💙


I have been noticing reports, in another COVID subject-matter thread, of long haulers who have developed apparent seizure disorders post-COVID, and who, when they report this to long-haul specialists, are being told that there is no known link between COVID and seizure disorders developing post-COVID. This mystifies me in light of a fair number of published, peer-reviewed reports of cases of severe active COVID in which seizures developed in patients who had no previous history of seizures (though they may have had latent low seizure thresholds predisposing them to seizures under the right conditions). Admittedly, these reports reflect a small number of cases, in the literature, but COVID is already famous for its potential to leave patients with lingering neurological problems, and so why would there be so much skepticism around this?

If, e.g., greater appreciation of a possible link-up of COVID and new seizure disorders could take hold, this, in turn, might enable doctors to consider something along the lines of thiamine repletion therapy for affected patients. Itś well known that B6 deficieny is linked to seizure disorders, in general, but there is also good literature of at least isolated instances in which severe B1/thiamine deficiency has been identified in patients with seizures, after which aggressive B1 repletion for these patients has seemed to succeed in reducing the seizures. Here are examples of the writings that impress me along these lines:


This (see link below) is another report that makes it difficult for me to understand why there isn´t a much greater readiness to appreciate seizures in a long-COVID patient with no history of seizures as a presumptive post-COVID sequela. This report describes work based on widespread acceptance that during acute COVID, many severely ill patients develop encephalopathies and other clearly neurological symptoms. How is it, therefore, too big a leap to embrace seizures, an obvious neurological disorder suggestive of a new or newly activated (post-virally) lesion, as a probable disorder of long COVID????

What also intrigues me about this article is its description of aggressive B1/thiamine therapy provided, with impressive results, to acute COVID patients in hospital. B1/thiamine is one of very few nutrients that can be supplemented to very high doses without known risks of toxicity (and there is lots of literature about this fact), and so where are the clinicians who might be willing to take a chance with this safe supplement in order to try quiet a patientś post-COVID seizure syndromes? Off-label therapies are tried and in wide use frequently and widely in U.S. medical settings. (One of my own doctors is so enthusiastic about safe off-label possibilities that I sometimes have to remind her that maybe I should get some relevant lab work done before we plunge forward with a particular off-label approach.) In any case, Iḿ hoping that the article cited right below may help some of us prompt our medical providers to make some promising connections for their long-COVID patients:
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