Had covid Bivalent vaccine today (this would be my fifth vaccine). Had a tonic clonic seizure about four hours later where I lost water control. Do not usually lose water control. Wondering if seizure linked to vaccine. Spoke with Epilepsy society who advised some people had had similar affects but no research to date on it. Has anyone else found their seizures are affected by covid vaccines? Have reported it to yellow card scheme in U.K. Vaccine was Pfizer. Wondering if there is anywhere similar to yellow card scheme to give feedback to in other countries. Vaccine probably better than getting covid, but if it does trigger seizures may be possible to take precautions beforehand.
Covid Bivalent vaccine and Epilepsy
- Thread starter jane54
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The vaccine can cause fever and fatigue, which can be seizure triggers for some, so it makes sense that folks out there could be affected.
I’ve had all the vaccines, including the the Bivalent one, with no problem, but my seizures have been controlled for quite a few years now.
I’ve had all the vaccines, including the the Bivalent one, with no problem, but my seizures have been controlled for quite a few years now.
All good here thankyou. Was a bit puzzled as did not have a temperature when had seizure. Have ways to manage seizure so all good today. Got temperature about three hours after seizure, and temperature can trigger them for me so that is making sense now.
kSQ
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Hi Jane,
My seizures started soon after my 1st Covid booster (Moderna) last November---3 shots in all. I wondered the same--is there a relationship between Covid vaccines and seizures. PubMed has a little data--a couple of cases where seizures occurred within a couple days after vaccinations. Nothing conclusive that I could see. On a separate note, it's becoming apparent that Covid vaccines do little to ward off the disease itself, nor the transmission of Covid from a vaccinated person with Covid to someone else. My wife has had two shots and two boosters (Pfizer) and caught Covid a few days ago. Her brother (3 states away) is fully vaccinated and has had it twice. He travels to Mexico frequently on business. Based on the available data, it seems that the vaccines probably ease the symptoms if you get vaccinated before catching Covid, but little else. I'm waiting to see if if I get it from my wife.
There are some side effects from the vaccine identified as well--heart issues developing in a percentage of young men who get vaccinated. That's the only info on side effects that seem verified thus far.
KSQ
Hello KSQ
Thank you for sharing your experience and thoughts
It does seem to be about risk and benefits when making decisions beit about vaccinations or other medical choices. I caught covid for the first time before the vaccinations had been invented and was very ill, did not get hospitalised, but ill for at least a month. Not wishing to revisit that. I agree that vaccinations do not prevent catching covid, but if it means if you catch covid it is less severe that is enough of a benefit for me at the moment. If I have another covid vaccination in the future I will probably take the drug I take following a seizure beforehand and see if that stops it happening again.
When your seizures started soon after your 1st Covid booster (Moderna) did you report it anywhere like the yellow card scheme or similar?
Jane
Thank you for sharing your experience and thoughts
It does seem to be about risk and benefits when making decisions beit about vaccinations or other medical choices. I caught covid for the first time before the vaccinations had been invented and was very ill, did not get hospitalised, but ill for at least a month. Not wishing to revisit that. I agree that vaccinations do not prevent catching covid, but if it means if you catch covid it is less severe that is enough of a benefit for me at the moment. If I have another covid vaccination in the future I will probably take the drug I take following a seizure beforehand and see if that stops it happening again.
When your seizures started soon after your 1st Covid booster (Moderna) did you report it anywhere like the yellow card scheme or similar?
Jane
kSQ
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Hi Jane54,
I'm unaware of any yellow card-like system here in the states. My wife's symptoms have continued (better one day, worse the next) and yesterday she contacted the local clinic and her oncologist (she has CLL) and was prescribed a stronger decongestant by her oncologist. No response from the clinic. I think much of the meta data comes through using ad hoc communications similar to this. Likely, my wife's correlation data (Covid and CLL, outcomes) will get aggregated somewhere. As I mentioned, there are directed small case studies looking at statistics involving Covid vaccines and possible side effects; but more on the various strains contracted by people with pre-existing conditions like epilepsy and CLL.
I also suspect there are a number of folks in the states who've gotten Covid with mild symptoms and not reported anything nor gone to the doctor. So, the actual number of disease contractions is significantly higher. i tested yesterday and was negative. I have not taken any more Covid boosters since November and also have not had any more seizures since early January. Proves nothing, of course. I also quit drinking any alcohol in January. I used to indulge in a Sunday afternoon Martini or two, or an IPA while soaking in the hot tub on a winter's day. I read that alcohol was a seizure trigger so I quit. Not saying I don't miss it, nor that there's any conclusive evidence that's the reason I haven't had any seizures since. But, good enough for me.
The longer the Covid era evolves---the vaccines, the masks, the mandates, the new strains, the new data, the illness correlations like we are discussing, the possible repression of some data, etc. leads me to believe Covid is becoming part of our lives and has to be dealt with as we see fit. Likely, an annual or semi-annual vaccine for the major strains will be introduced--similar to the flu shot. Not sure yet if I will take it or not.
Finally, I read that a university hospital in the eastern U.S. developed a new strain using two existing variants (more gain of function experiments). Maybe they'll discover a vaccine that works once and for all against all variants, or develop a strain that is increasingly deadly and mutates constantly. Stay tuned.
I'm unaware of any yellow card-like system here in the states. My wife's symptoms have continued (better one day, worse the next) and yesterday she contacted the local clinic and her oncologist (she has CLL) and was prescribed a stronger decongestant by her oncologist. No response from the clinic. I think much of the meta data comes through using ad hoc communications similar to this. Likely, my wife's correlation data (Covid and CLL, outcomes) will get aggregated somewhere. As I mentioned, there are directed small case studies looking at statistics involving Covid vaccines and possible side effects; but more on the various strains contracted by people with pre-existing conditions like epilepsy and CLL.
I also suspect there are a number of folks in the states who've gotten Covid with mild symptoms and not reported anything nor gone to the doctor. So, the actual number of disease contractions is significantly higher. i tested yesterday and was negative. I have not taken any more Covid boosters since November and also have not had any more seizures since early January. Proves nothing, of course. I also quit drinking any alcohol in January. I used to indulge in a Sunday afternoon Martini or two, or an IPA while soaking in the hot tub on a winter's day. I read that alcohol was a seizure trigger so I quit. Not saying I don't miss it, nor that there's any conclusive evidence that's the reason I haven't had any seizures since. But, good enough for me.
The longer the Covid era evolves---the vaccines, the masks, the mandates, the new strains, the new data, the illness correlations like we are discussing, the possible repression of some data, etc. leads me to believe Covid is becoming part of our lives and has to be dealt with as we see fit. Likely, an annual or semi-annual vaccine for the major strains will be introduced--similar to the flu shot. Not sure yet if I will take it or not.
Finally, I read that a university hospital in the eastern U.S. developed a new strain using two existing variants (more gain of function experiments). Maybe they'll discover a vaccine that works once and for all against all variants, or develop a strain that is increasingly deadly and mutates constantly. Stay tuned.
Hey...saw this thread. My son was recently diagnosed with generalized epilepsy. Before taking him for a Pfizer covid vaccine, I asked around on various forums if the vaccine would trigger any seizure. Everyone said...no..super safe etc. Gave my son the vaccine. In 5 hours he had a full-blown tonic clonic.
Sure..he was not on the proper meds because at that time Keppra was not controlling his seizures fully. But it definitely happened out of the blue. Thought I should share my experience because there is a big backlash whenever I say the vaccine triggered an episode. They think I am an anti-vaxxer or something.
Hello Adiroop
I see you have something called VAERS where people can report what they think may be a reaction to a vaccine or other things Is that similar to the yellow card scheme in the U.K. where people can report side effects. My seizures have never been fully controlled but I have had them long enough to recognise triggers e.g. hunger, tiredness, stress, dehydration. They are normally absent seizures, except when I get too hungry and am out walking and my blood sugars drop and that can trigger a drop seizure. The seizure I had a few hours after my vaccine was odd, no obvious trigger, and not the usual type I have - a tonic clonic seizure. Hence my hunch the vaccine and this different type of seizure connected. Have you fed back to any medical people what happened.
I see you have something called VAERS where people can report what they think may be a reaction to a vaccine or other things Is that similar to the yellow card scheme in the U.K. where people can report side effects. My seizures have never been fully controlled but I have had them long enough to recognise triggers e.g. hunger, tiredness, stress, dehydration. They are normally absent seizures, except when I get too hungry and am out walking and my blood sugars drop and that can trigger a drop seizure. The seizure I had a few hours after my vaccine was odd, no obvious trigger, and not the usual type I have - a tonic clonic seizure. Hence my hunch the vaccine and this different type of seizure connected. Have you fed back to any medical people what happened.