Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

As someone who has PNES, what should I know about the COVID-19 vaccines?

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 “definitely, 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!

The blog topic this month is one that is not directly related to PNES, but which affects everyone including people living with PNES and I have some thoughts about this that I want to share: COVID-19 vaccines and what might be important for individuals with PNES to know about them.

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 I wrote this blog, COVID-19 was reported to have killed nearly 3.81 million people worldwide and nearly 600,000 Americans.  Because these numbers are so enormous, it can be hard to wrap our head around the fact that these are individual people; loved ones (moms, dads, sisters, brothers, aunts, uncles, etc.), neighbors, friends, health professionals, etc. It is an unspeakable tragedy!

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 including depression, anxiety and suicide, and job and educational losses spread like wildfire, etc.).  And to 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, they delivered in less than a year what would have typically taken a decade or more.  By the end of 2020, vaccines started rolling out to the far corners of the US and we were all encouraged to roll up our sleeve and get jabbed. As of today, millions in the US (Johnson & Johnson is approved for 18 years and older, Pfizer was approved for 12 years and older and Moderna may soon also be approved for 12 years and older) have received their vaccines and millions more are scheduled to receive them. When this article was being written, 53% of all Americans had received at least one dose of a COVID-19 vaccine and 44.2% 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 with your doctor first).

Below, are some frequently asked questions that may be helpful to read over:

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 occur 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. For a more complete list: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html

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, even young and healthy people are recommended to 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 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 (i.e., where herd immunity is being achieved) appear to have resulted in a significant drop in hospitalizations which is major because that goes hand in hand with lower death rates (https://www.pharmacytimes.com/view/modeling-confirms-high-covid-19-vaccination-rates-are-necessary-to-reduce-cases-control-pandemic).

 

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

Just because you have PNES does not mean you are at increased risk of contracting COVID-19 or of having worse symptoms or long-term effects from the virus.  However, some people with PNES 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, smokes or uses substances, etc.). Consult with your doctor if you are unsure.

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, those symptoms are a good sign because it shows that your immune system is being activated by the vaccine.

As for PNES and COVID-19 vaccines, although there is no evidence that they cause any specific side effects, remember, PNES is considered a stress disorder (this means psychological and physical stress). As for psychological stress, experiencing an increase in anxiety when you are at a vaccination site could trigger an episode.  For example, as you are sitting waiting to be pricked, you may be concerned about the vaccine itself and have all sorts of thoughts: “Is it safe, will it hurt, will it work, what if I have one of those bad reactions I read about in the news, etc.? You may be thinking about COVID-19 and all the terrible things that have happened over the last 15 months.  Anxious thoughts are often accompanied by rapid and shallow breathing and muscle tension. All these together are common precursors to non-epileptic seizures. Remember to focus on your breathing and use any grounding and relaxation technique you have learned to prevent PNES. Come with a companion who can explain and/or have your PNES card available (https://nonepilepticseizures.com/epilepsy-psychogenic-NES-faqs-should-other-people-do.php) to ensure the medical staff have all your necessary medical information if you have an episode while there.

How about physical stress? PNES can also be triggered by physical stress, so it is important to be aware that some of the after-effects of the vaccine (e.g., pain in your arm, fever, fatigue). Discuss this with your doctor before going in for vaccination; you may be recommended to take an over-the-counter analgesic or something more appropriate to your personal condition. Best way to tackle these eventualities is to be prepared.

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 doctors know that this 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.

Summing it up, I know that scientific information coming out of world and national health agencies has been a bit spotty (to say the least) over the last 15 months and that has made many people suspicious of official recommendations.  But in all honesty, that was partly because scientists and health professionals were scrambling initially to catch up with a rapidly evolving disaster the likes of which had not been seen in over 100 years!  But now, 15 months later, they have had more time to figure this out; they definitely know much better how to treat COVID-19 and now they have tested and produced these incredible vaccines that are game changers for all of humanity because they will eventually let us ditch the lockdown, the masks, the 6 feet of separation and get back to some form of livable normal.

So, in a nutshell, it looks like if you are eligible for a COVID-19 vaccine, you should seriously consider getting one!

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:

https://www.vaccines.gov/

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