Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

Staying healthy as a person living with PNES while staying cooped up during the age of COVID-19

We have all been asked to practice something called “social distancing” which means keeping at least 6 feet from others and avoiding (as of today) being in a group of 10 people. Schools, churches, public buildings, restaurants, gyms, etc. have all been closed for this purpose and now, many of us are stuck at home without our usual daily routine to keep us occupied. Basically, we are to be cooped up for at least 2 weeks at a time. 

But it is not just our physical health that is at risk at this time, we also need to pay attention to our mental health. Quite suddenly, we are finding ourselves cut off from the rest of the world with the sensory/social deprivation that accompanies not being allowed out and about among other human beings. Some of us may be facing financial worries because we have lost our job or have had our hours cut significantly. To make matters worse, some of the ways in which we used to let off some steam: going to the gym, the movies, to a restaurant, being with our religious community, going out with friends, have all been stopped.

You should not be surprised if you start to feel some unpleasant feelings (they are understandable) including anxiety about the virus itself and how it might affect you or relatives and friends (especially the ones who are considered at high risk), anxiety about how this might affect you financially, worries about whether you have enough supplies at home, and more. You may also find that you are growing bored and restless and this may even lead to feeling down in the dumps. And don’t be surprised to find yourself feeling irritated and upset in general.

As for PNES, often when we are in extreme situations, our brain naturally reverts to “tried and true” protective mechanisms and in situation such as this, in which a “fight or flight” response is activated, dissociation as a defense mechanism, can emerge. I have heard from a few patients already this week who called to let me know that they had experienced break-through PNES episodes even after being free of these symptoms for some time. This is distressing. But it is also understandable given the high stress levels we are all under. So, let’s talk about some healthier ways to manage the current situation so that you can manage your PNES better as well as your life in general.

  • Your exposure to news should be limited to let’s say, an hour a day and preferably in the morning (so it does not keep you up at night). Make sure you read reliable sources that are not spreading rumors or alarmist news that is not actually true.
  • Keep yourself on a schedule. Make sure to build into your day some time for physical exercise (even if you are at home, you can do lunges, sit ups, push-ups, planks, etc.). If you have a stationary bicycle or elliptical machine, use it! You can also find an exercise class on TV, online, or on an old DVD that you had laying around. You can add this to your daily schedule. Who knows, these odd circumstances that we are living through may actually present you with an amazing opportunity to learn something like a foreign language, or to take one of those online courses that you always see pop up on your Roku device, or maybe you decide to check out YouTube to start learning how to knit or sew. Or, maybe pull out some of those books that you bought a few years ago and never had time to read. Maybe now is a good time to really educate yourself about PNES—there are several excellent books that you can order and read on Kindle. You can find several of those books here: https://nonepilepticseizures.com/epilepsy-psychogenic-NES-reading-materials-books.php. Alternatively, did you always dream of writing poetry or a novel? Or have you been wanting to spend time drawing and painting? Well, now is your time! Try to put together a schedule with these activities and cross them off as you complete them every day.
  • Humans are social animals and so it is important for you to keep connected even if you can’t do it in-person. You can call others on your phone or you can see them through video-chat platforms or you can text. These are good opportunities to check how others are doing and to share your own frustrations, sadness, fears (rather than keeping those feelings bottled up so that later they do not convert into dissociative symptoms). Add it to your schedule: communicate daily. Also, make sure to check up on others who may need your help and who can use hearing your voice. There are some useful Facebook groups including https://www.facebook.com/nonepilepticseizures/?ref=settings
  • Make sure to maintain a healthy diet (if possible, do not snack on unhealthy foods or eat more than usual, avoid using drugs or alcohol for stress relief) and try to sleep regular hours.
  • Remember, there are teletherapy options that your psychotherapist or psychiatrist may be able to offer you. I have already been seeing some of my patients using this type of medium using a HIPAA compliant platform and it has been pretty seamless and a great way to stay in contact and not lose momentum for treatment.
  • Also, many of your regular doctors are also going to be able to offer telehealth visits if needed since the tight regulations that used to restrict this type of treatment have now been lifted. So, make sure to contact your other doctors if you need to in order to take care of your general health or to obtain your medication refills (probably preferable to going into the office with its crowded waiting room). The government has now loosened regulations and so now, your doctor can prescribe up to 3 months of medications for you. Ask about this during your next appointment.
  • Remember, now is not the best time to go to an emergency room since ER doctors are more overwhelmed than ever before and you also risk exposure to the coronavirus. So, if at all possible, avoid the emergency room for PNES symptoms and instead, if possible, rely more heavily on telehealth options.
  • Last but certainly, not least. allow yourself to feel what you are feeling. Remember, emotions are signals that our body gives us and that we should hear. Emotions can help us understand the situation and decide what we need to do next. So, for example if you are you feeling irritated—stop and ask yourself why and honor that feeling? And then, ask yourself, would it help to grab a good book to distract yourself or maybe call a friend and chat about this. But if you find yourself spinning off a precipice and seeing everything from a “gloom and doom” perspective, stop and talk yourself down. Think realistically: this will not last forever, it will be over because that is just how it has always been with World Wars, other pandemics (e.g. Spanish flu), 9/11, etc.  Or reach out to someone (your friend or your therapist) who can help you come back to a realistic view of things. Use resources at hand: remember the deep breathing exercise your therapist taught you a while back? Start practicing deep breathing twice a day for ten minutes each time. If you need a coach, use one of the excellent apps that are out there (e.g. Calm or breathe2relax) to keep you on track with your breathing and with your mindfulness exercises. The Calm app also has some fantastic bedtime stories for adults that can help you fall asleep at a healthy hour. You can also find useful recommendations on how to manage your PNES better here: https://nonepilepticseizures.com/epilepsy-psychogenic-NES-faqs-make-episode-stop.php

I wish you the best during these tough times! Let’s try to come out of this stronger, healthier, maybe even more educated (if you take one of those courses I mentioned above).

3 Responses to “Staying healthy as a person living with PNES while staying cooped up during the age of COVID-19”

  1. Nathan says:

    “Social distancing” used to be a symptom, but now I am suppose welcome it and do what I’ve been practicing for years. Hold my beer, I got this one!

  2. Randi V. says:

    My daughter has recently been diagnosed with NES and the occurrence of the attacks is so markedly increased since having to stay home. Any ideas for an adolescent with this?

  3. Devora Goldman says:

    This is all good advice. It requires all hands on deck to manage PNES through this Covid crisis, especially given the elimination of so many usual coping strategies. Thanks for sharing.

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