Covid-19 vaccination & Epilepsy

Posted by fbutterw20 @fbutterw20, Feb 11 9:23am

Has there been any data collected on the impact of the Covid vaccine on patients with epilepsy?

@fbutterw20– Good morning. It's nice to talk with you. This is a great question to ask, and have answers. However, we all have to realize that no one knows for sure how they will react to these vaccines given how different everyone's makeup is and the medical issues that people have.

To answer your question, yes there are risks if you have epilepsy. But, it is unknown what causes the risks and how much risk there actually is. To answer your question, vaccines have shown that they aren't contraindicated for people who take epilepsy medications.

Mayo has some excellent recommendations to prepare you for your vaccine. Mayo states that it's important to make a plan in case you do have a seizure. My next-door neighbor has very frequent, daily seizures and I believe that he is planning on getting his.
https://newsnetwork.mayoclinic.org/discussion/covid-19-tips-for-people-with-neurologic-issues-such-as-epilepsy-and-seizure-disorders/
https://www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19#
It's always a good idea to discuss all new medications/vaccines with your doctors. Have you checked with your neurologist?

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@fbutterw20 thank you for posting your question to Connect. As @merpreb mentions above, there are so many factors that are unknown at this point with regard to how each person will react to the vaccine.

I did want to let you know that I have edited the title and included your post in the Epilepsy & Seizure Group to allow you to connect better with members who also have epilepsy.

I will let you answer Merry's question above regarding if you've checked with your Neurologist.

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@fbutterw20
From what I hear it is safe and doesn’t interfere with any seizure medications. Seizures have been a reported side effect in some. Although they aren’t following Epilepsy patients. So even if there are side effects who will know. One side effect I can think of is if someone had a fever after the injection it could cause a seizure depending on fever or illness if that’s a trigger. I heard if you had the virus the side effects are usually worse and virus or not side effects seem to be worse with the second injection.
If you have a serious illness along with Epilepsy you need to talk to your physician.
Jake

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Copied from previous page:
CLONAZEPAM AND COVID VACCINE – INFORMATION WANTED please

Hi I know this isn't correct place to ask but not sure where.
I have put off having Covid vaccine as unwell wont go into details.
There is one of many additional ingredients in Pfizer vaccine called polyethylene glycol which some people have reactions to. I spoke to a dr. over phone at an allergy clinic and he said it should be fine as in fact the Clonazepam I take has polyethylene glycol in its ingredients.

I thought OK, will go ahead, but when checked Internet I read that anyone taking an anti-epileptic med such as CLONAZEPAM (I only have low dose .5 a day for anxiety but for years)…. could get a delayed reaction.

PLEASE.. does anyone know about this. i have so many other issues including P.N., Tinnitus, Ear pain; Glaucoma, etc. etc. that am not sure I can handle a bad reaction.

Or, anyone know where I can find out more correct info as I don't want to put off having vaccine any longer. THANKS much appreciated! *p.s. I do not have seizures but taken it 15 yrs for sleep and/anxiety and the dr just left me on it" now worried to have pfizer vaccine. J.

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@lacy2

Copied from previous page:
CLONAZEPAM AND COVID VACCINE – INFORMATION WANTED please

Hi I know this isn't correct place to ask but not sure where.
I have put off having Covid vaccine as unwell wont go into details.
There is one of many additional ingredients in Pfizer vaccine called polyethylene glycol which some people have reactions to. I spoke to a dr. over phone at an allergy clinic and he said it should be fine as in fact the Clonazepam I take has polyethylene glycol in its ingredients.

I thought OK, will go ahead, but when checked Internet I read that anyone taking an anti-epileptic med such as CLONAZEPAM (I only have low dose .5 a day for anxiety but for years)…. could get a delayed reaction.

PLEASE.. does anyone know about this. i have so many other issues including P.N., Tinnitus, Ear pain; Glaucoma, etc. etc. that am not sure I can handle a bad reaction.

Or, anyone know where I can find out more correct info as I don't want to put off having vaccine any longer. THANKS much appreciated! *p.s. I do not have seizures but taken it 15 yrs for sleep and/anxiety and the dr just left me on it" now worried to have pfizer vaccine. J.

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@lacy2
I know a lot of people who use Anticonvulsants for Epilepsy. Quite a few had seizures after getting the vaccine. However, I noticed the ones who did have uncontrolled seizures. My brother had it (he has Epilepsy and other issues) had no reactions at all after either injection. I think it causes seizures in some Epilepsy patients but not because of the medication they are on. I believe it has more to do with the severity of a persons seizure disorder which is the reason why I am concerned about getting it at this time.
I haven’t heard of anyone who had A seizure who took Klonopin. I know they claim that anti-convulsant medication does not interfere with the virus vaccine and vice versaBut I don’t have much confidence in that statement. I don’t know how the study was performed for how long, what type of seizures/Epilepsy, severity or frequency etc. I believe those factors might make a difference but it of course who knows.
Jake

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@jakedduck1

@lacy2
I know a lot of people who use Anticonvulsants for Epilepsy. Quite a few had seizures after getting the vaccine. However, I noticed the ones who did have uncontrolled seizures. My brother had it (he has Epilepsy and other issues) had no reactions at all after either injection. I think it causes seizures in some Epilepsy patients but not because of the medication they are on. I believe it has more to do with the severity of a persons seizure disorder which is the reason why I am concerned about getting it at this time.
I haven’t heard of anyone who had A seizure who took Klonopin. I know they claim that anti-convulsant medication does not interfere with the virus vaccine and vice versaBut I don’t have much confidence in that statement. I don’t know how the study was performed for how long, what type of seizures/Epilepsy, severity or frequency etc. I believe those factors might make a difference but it of course who knows.
Jake

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..thanks for input . A phone call to an allergist out of town, he said its the Polyethylene Glycol in eg. the pfizer vaccine and that in fact Clonazepam/Rivotril/Klonopin already has it as an ingredient, but I cant find confirmation (of what he said) on the Internet.
Also that Polyethylene Glycol (I think more than one type) is a kind of laxative they use for colonoscopies.
I should not have looked it up now I am more confused than ever as have IBS, fecal incontinence etc. and they say not to use P.G. if bowel disease etc. Ugh. I also found a foreign article saying not to use an anticonvulsant med with Flu/Covid type vaccines… why do we patients have to search for this info and not get a clear cut correct answer from the medical profession, or is it me???
p.s. I am now wondering if the article I read was dealing with TREATMENT meds with P.G. of those people already with Covid who use anticonvulsants and I thought it meant the actual vaccine, ….but I still cant find that Polyethylene Glycol is an ingredient of Clonazepam as the allergist said to me. So confusing.

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@lacy2
My brother and I get the flu shot every year and have for years and never had a problem.
But nobody really knows how the vaccine will affect you. I don't care how many millions have had it. I know Epilepsy patients who were told oh that's so rare don't worry about it, now some of them are dead. It makes me angry that ignorant people bully those who haven't received the vaccine.
Jake

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@jakedduck1

@lacy2
My brother and I get the flu shot every year and have for years and never had a problem.
But nobody really knows how the vaccine will affect you. I don't care how many millions have had it. I know Epilepsy patients who were told oh that's so rare don't worry about it, now some of them are dead. It makes me angry that ignorant people bully those who haven't received the vaccine.
Jake

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Jake- You are correct that everybody's reaction to Covid vaccines is different. However, there is no indication at this time that epilepsy and covid vaccines kill people.

Should those with seizures triggered by fever avoid getting the COVID vaccine?

Elevated temperature (fever) is a common side effect after getting a vaccine. Fevers have been reported as a side effect after getting the COVID vaccine because the immune system is reacting to create immunity in the body. Some people with epilepsy have seizures that are triggered by fever. However, the available data about the risks of COVID and the safety of the COVID vaccines still support vaccination. If you or your loved one have seizures triggered by fever, please talk to your health care provider about:

The specific benefits and risks of the COVID vaccine for you or your loved one
Recommendations about where you or your loved one receive the vaccine, such as a location where medical staff are available
A Seizure Action Plan that includes consideration of rescue therapies
https://www.epilepsy.com/learn/covid-19-and-epilepsy/covid-19-vaccination
What was the actual cause of death for all the people who you say have died as a result of the covid-19 vaccine?

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@lacy2

..thanks for input . A phone call to an allergist out of town, he said its the Polyethylene Glycol in eg. the pfizer vaccine and that in fact Clonazepam/Rivotril/Klonopin already has it as an ingredient, but I cant find confirmation (of what he said) on the Internet.
Also that Polyethylene Glycol (I think more than one type) is a kind of laxative they use for colonoscopies.
I should not have looked it up now I am more confused than ever as have IBS, fecal incontinence etc. and they say not to use P.G. if bowel disease etc. Ugh. I also found a foreign article saying not to use an anticonvulsant med with Flu/Covid type vaccines… why do we patients have to search for this info and not get a clear cut correct answer from the medical profession, or is it me???
p.s. I am now wondering if the article I read was dealing with TREATMENT meds with P.G. of those people already with Covid who use anticonvulsants and I thought it meant the actual vaccine, ….but I still cant find that Polyethylene Glycol is an ingredient of Clonazepam as the allergist said to me. So confusing.

Jump to this post

@lacy2– Good morning Lacy- There are a lot of people who have multiple diseases and illnesses. We definitely need to figure out if ingredients in each of the COVID-19 vaccines are compatible with what medicines we take and what might set off a reaction. And it's all terribly confusing.

Have you discussed your uncertainty with your Neurologist and your PCP?

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Hi. Where I live there is no neurologist and I dont have a family dr but use a phone in/video clinic. Its months wait to even speak to or see on video neurologist who is about 3 hour drive away and only seen him in past for P.N. after meds (Norflox). I have a video about fog after ocular migraines mid August… the meds I am on he did not prescribed you see. PCP is that family dr? I asked online dr and she referred me to dr at an allergy clinic and he said as above, that Clonazepam contains the P………. so I should be ok but I cant find that Clonazepam does contain it! I see an article where it is dissolved by P……… but that's it. I would try Pharmacist but they never seem concerned! Were I not coping with other illnesses at same time I would be less worried. (Tinnitus,eustachian tube pain,ocular migraines,P.N,internal tremors,ibs-d, fecal incontinence, bowel issues; radiated bladder, extreme fatigue, Glaucoma narrow angles which stops me taking loads of meds; and a peppering of anxiety and depression.. not that I am worse than many but to have bad reaction on top I dont think can cope with iit. But everyone says oh get it, you will be ok!!!

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@lacy2

..thanks for input . A phone call to an allergist out of town, he said its the Polyethylene Glycol in eg. the pfizer vaccine and that in fact Clonazepam/Rivotril/Klonopin already has it as an ingredient, but I cant find confirmation (of what he said) on the Internet.
Also that Polyethylene Glycol (I think more than one type) is a kind of laxative they use for colonoscopies.
I should not have looked it up now I am more confused than ever as have IBS, fecal incontinence etc. and they say not to use P.G. if bowel disease etc. Ugh. I also found a foreign article saying not to use an anticonvulsant med with Flu/Covid type vaccines… why do we patients have to search for this info and not get a clear cut correct answer from the medical profession, or is it me???
p.s. I am now wondering if the article I read was dealing with TREATMENT meds with P.G. of those people already with Covid who use anticonvulsants and I thought it meant the actual vaccine, ….but I still cant find that Polyethylene Glycol is an ingredient of Clonazepam as the allergist said to me. So confusing.

Jump to this post

Good morning Lacy, I'm sorry you are feeling so confused – there is so much information floating around, it is no surprise.

First, Polyethylene Glycol is only an ingredient in liquid versions of Clonazepam, used for IVs. It is used to keep the drug suspended in the liquid, the same as it is in the Pfizer vaccine.

Second, the quantity of Polyethylene Glycol used as a laxative, for colonoscopy prep or as a stool softener is hundreds of times greater than the amount in the tiny syringe that dispenses a vaccine.

Third, the Janssen/Johnson & Johnson vaccine does not contain Polyehtylene Glycol.

Finally, as I always do when these questions arise, I dove into the numbers. Here is the data from VAERS, where all physicians and medical facilities are required to report serious events – hospitalization, ER visit, life threatening reaction or death. (https://wonder.cdc.gov/vaers.html) The data covers entire period of Covid vaccination from testing to current, about 11-12 months.

To date, 333,000,000 doses of vaccine have been administered in the US to about 184,000,000 people and 413,000 adverse events have been reported. That amount to 124 events for every 100,000 shots (.00124%.) There were 5200 deaths reported, or 1.6 per 100,000 (.0000157%)

There are about 3.4 million in the US with epilepsy, roughly 1% of the population or 1000 per 100,000 people and about 3000 deaths or 88/100,000 people with epilepsy (.00088%). There is no medical or scientific literature suggesting people with epilepsy not be vaccinated.

In VAERS there were 374 reports of seizures, and 6 reported deaths – about 1 in a million, or ten in 10,0000 of people with epilepsy – this is not proof that the vaccine caused the death, only that the person was recently vaccinated. It is unknown how many of these people reported epilepsy as an underlying condition at the time of vaccination or in VAERS.

In contrast, here are the stats for Covid cases and deaths:
– 34 million cases of Covid in the US – one in every 10 of the total population, so changes of contracting Covid are 10,000 per 100,000.
– 600,000 deaths – If you get Covid, your chance of death is 1700/100,000 (.01764%). Since you have a 10% chance of contracting Covid, that means you have a chance of death of 177/100,000 (.001764%)
– In other words, 5.5 times more people have had the vaccine than had Covid, but 115 times more people have died from Covid than from the vaccine.

Vaccines are being shown to be nearly 90% effective against contracting Covid, and nearly 100% effective against getting severe Covid or dying. That is among the highest vaccine effectiveness for illnesses like influenza, shingles, herpes, etc.

Here is my takeaway:
I have underlying conditions. That means my risk of severe illness or death is higher than average.
I knew I would experience a reaction – my immune system goes into overdrive from every vaccine – but I chose to get it anyway, and I dealt with the extreme inflammatory flare, which was definitely unpleasant.
So I trade a risk of adverse reaction (124/100,000) or death (1.6/100,000) to the vaccine over the chance of contracting Covid (10,000/100,000) or dying from it (177/100,000.)

In addition, being vaccinated protects those in my circle – young children especially – and limits the hosts for spreading the disease.

I know this is a frightening and emotional issue for many people, but I believe that the numbers are now here to assure us that, absent a very rare condition, it is safe to be vaccinated.

Sue

REPLY
@lacy2

Copied from previous page:
CLONAZEPAM AND COVID VACCINE – INFORMATION WANTED please

Hi I know this isn't correct place to ask but not sure where.
I have put off having Covid vaccine as unwell wont go into details.
There is one of many additional ingredients in Pfizer vaccine called polyethylene glycol which some people have reactions to. I spoke to a dr. over phone at an allergy clinic and he said it should be fine as in fact the Clonazepam I take has polyethylene glycol in its ingredients.

I thought OK, will go ahead, but when checked Internet I read that anyone taking an anti-epileptic med such as CLONAZEPAM (I only have low dose .5 a day for anxiety but for years)…. could get a delayed reaction.

PLEASE.. does anyone know about this. i have so many other issues including P.N., Tinnitus, Ear pain; Glaucoma, etc. etc. that am not sure I can handle a bad reaction.

Or, anyone know where I can find out more correct info as I don't want to put off having vaccine any longer. THANKS much appreciated! *p.s. I do not have seizures but taken it 15 yrs for sleep and/anxiety and the dr just left me on it" now worried to have pfizer vaccine. J.

Jump to this post

If worried about Pfizer, get Moderna. I have had many of the issues you listed and didn’t experience much trouble…..maybe a bit more tinnitus….but that was all after Moderna.

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