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What do we know about COVID-19 vaccines and epilepsy? Feature Article

As a person living with epilepsy, should I get my COVID-19 vaccine?

If we can say anything for sure about COVID-19 is that there is still a lot that we do not know. Making matters worse, at times experts have communicated confusing and contradictory information to the public. One of the clearest examples of these confounding messages can be found in the advice provided regarding mask wearing.  In March of 2020, experts on news outlets were saying "do not wear a mask," just a month or two later, all experts were saying: "definitely wear a mask," earlier this year, the CDC started recommending "double masking," but not too long ago, Dr. Rochelle Walensky of the CDC announced that fully vaccinated individuals need not wear a mask (with some exceptions).

It's enough to make your head spin! 

For this issue, we will be looking at the topic of COVID-19 vaccines and what is important for individuals with epilepsy to know about them.  We will make every effort to communicate as clearly as possible and to reduce confusion, but bear in mind, this topic seems to be evolving daily. Spoiler alert: doctors and scientists are unanimously supporting the vaccines for people who are in the age groups for which the vaccines have been approved (with certain exceptions that we will discuss below).

At the time this article was being written, COVID-19 was reported to have killed nearly 3.75 million people worldwide and over 500,000 Americans.  Because these numbers are so enormous, it can be hard to wrap our head around the fact that these are people; loved ones (moms, dads, sisters, brothers, aunts, uncles, etc.), neighbors, friends, health professionals, etc. 

In 2020, most of our cities, businesses, social activities, and lives screeched to a halt across the globe, and at times, it seemed like there was no end in sight.  Basically, our only protection was to isolate, wear a mask, wash our hands, use antibacterial liquids, and keep 6 feet apart from any other human being.  This helped to slow the spread but at a very high cost for many (e.g., mental health problems sky-rocketed and job and educational losses spread like wildfire, etc.).  And, let's be honest, living in lockdown indefinitely is unsustainable!

So, when scientists around the world (including Moderna, Pfizer and Johnson and Johnson in the USA) tasked their best and brightest with the development of a vaccine, there was a glimmer of hope. And amazingly, these incredible scientists delivered in less than a year what would have typically taken a decade or more.  By the end of 2020, vaccines started rolling out all across the US and we were all encouraged to roll up our sleeve and get jabbed. As of today, millions in the US (Moderna and Johnson & Johnson are approved for 18 years and older and Pfizer was recently approved for 12 years and older) have received their vaccines and millions more are scheduled to receive them. When this article was being written, 52.3% of all Americans had received at least one dose of a COVID-19 vaccine and 42.8% were fully vaccinated.

What are doctors saying about these vaccines?  

Doctors recommend you get your vaccine as soon as you are eligible (there are some exceptions though, so it is important that if you have any concerns make sure to consult first with your doctor first).  

Below, we will answer some frequently asked questions:

I am young and healthy so why should I get vaccinated? 

Even healthy people can contract COVID-19 and some can become quite ill or die.  Therefore, if this is your case, it is recommended you get vaccinated if possible.   If you are vaccinated your chances of ending up in the hospital or dying is very much reduced. And, the risk of you making those around you, sick with COVID-19 is also greatly reduced.   

Are there some people who are more at risk than others from COVID-19?

An important factor is the patient's age. Much higher number of COVID-19 deaths occurring in those who are 65 years of age or older.  But keep in mind, people who are younger than 65 can also contract COVID-19 and can die.  Especially people who have underlying health conditions (e.g., obesity, diabetes, heart disease, chronic lung disease, compromised immune system for other reasons, if the person is a smoker or has a substance use disorder, etc.) can be more vulnerable to bad outcomes if they get COVID-19. 

Are these COVID-19 vaccines really effective?  

Effectiveness at preventing laboratory-confirmed COVID 19 illness was 94% for Moderna and Pfizer in people who received both doses (i.e., fully-vaccinated) and 66.3-74.4% for the Johnson and Johnson (single dose) vaccine.  Johnson and Johnson also reported "100% efficacy against hospitalization and death from the virus." 

And that last point is really important! Several studies have already shown that mass vaccination rollouts in some countries or geographical regions appear to have resulted in a significant drop in hospitalizations which is major because that goes hand in hand with lower death rates while unvaccinated sites are still struggling with overflowing hospitals and lockdowns.  

What about if I have epilepsy, is there anything I should be worried about regarding COVID-19?

Just because you have epilepsy does not mean you are at increased risk of contracting COVID-19 or of having worse symptoms or long-term effects from the virus.  The issue is, however, that some people with epilepsy also have additional health issues that can increase risks of bad outcome if COVID-19 is contracted (e.g., obesity, diabetes, heart disease, chronic lung disease, compromised immune system for other reasons, if the person is a smoker or has a substance use disorder, etc.).

If I get the COVID-19 vaccine, is there anything I should be worried about?

Keep in mind that around 15% of people reported pain or some swelling at the vaccine site (arm) but that goes away after a day or two. Approximately 50% of people reported headache, chills, fatigue, muscle aches or low-grade fever that lasted a day or two.  Believe it or not, this is a good sign because it shows that your immune system is being activated by the vaccine.

As for epilepsy and COVID-19 vaccines, although there is no evidence that they cause any specific side effects in a person with epilepsy (PWE), some PWEs experience seizures triggered by fever. It is important to keep in mind that some people develop fever after receiving their vaccines. In this case, it makes sense to discuss this with your doctor before going in for vaccination.

Will the COVID-19 vaccine interact with my anti-epileptic drugs (AEDs)?

There is no evidence that the COVID-19 vaccines will decrease the effectiveness of your AEDs. 

Is it safe to get a COVID-19 vaccine if I have epilepsy?

There is no evidence that indicates that it is not safe to get a COVID-19 vaccine if you have epilepsy.  Just be mindful of the issue discussed above regarding fever-induced seizures and read the information below.

Are there any people who should definitely not get the vaccine?

You should not get a COVID-19 Vaccine if you:

* had a severe allergic reaction after dose one of your COVID-19 vaccine.

* had a severe allergic reaction to any ingredient in one of these vaccines.

Anaphylaxis (a severe, potentially life-threatening allergic reaction that causes blood pressure to rapidly drop and airways to become narrow) after a COVID-19 vaccination is rare (2-5 people out of every million develop this reaction). Because it CAN happen to a few, and no one quite knows who that might be, ALL of us are asked to stick around for 15 minutes in the vaccination center after getting jabbed so you can be monitored for a negative reaction. If so, emergency medical treatment is immediately provided.

So, in a nutshell, if you are eligible for a COVID-19 vaccine, you should seriously get one! Remember, according to the International League Against Epilepsy (ILAE) says  for PWEs, "the risks from getting COVID-19 are much higher than any risks that might come from having the vaccine."   

Where can I get my COVID-19 vaccine? 

Fortunately, at this time, it is relatively easy to find a vaccine site locally. In some regions, you can even choose which vaccine to receive (e.g., Moderna, Pfizer, Johnson and Johnson).  Look for a nearby vaccination site here:


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