More often than not, when I first meet my patients, it is evident that most of their lifetimes, self-care has been left by the wayside. My patients have been surviving, working hard, taking care of others, basically treading water for years. And this has shortchanged them in the process. As could be expected, at some point, their body becomes symptomatic.
Sometimes patients wonder how they could have let things go so far without noticing. We believe this is partly because most people who develop PNES present with some level of disconnect between mind and body (due to interoceptive deficits, dissociation, and alexithymia for example). This results in not “picking up” body signals of tiredness, hunger, thirst, tension, stress, emotional distress, etc.). When this goes on for prolonged periods of time, it results in a “perfect storm” scenario in which a first nonepileptic seizure debuts. After that first seizure happens, it is not uncommon for many subsequent seizures to follow, almost as if a dam broke and one seizure follows the next in succession.
So one of the first items to discuss when a patient walks into my office is to examine what led to the development of PNES, to understand whether the patient presents with this mind-body disconnect and to begin to introduce self-care behaviors.
What is “self-care?”
It’s the practice of intentionally focusing on and improving your own health (physical, mental, and emotional) and well-being. Some ways to promote self-care are through physical exercise, eating a balanced diet, keeping yourself hydrated, getting enough sleep, practicing mindfulness, and engaging in activities that bring you pleasure and the opportunity for relaxation.
- Physical Health: PNES may lead patients to avoid physical activity for fear of having a seizure and injuring themselves, but with careful consideration of how their seizures present and some safety modifications, exercise might be possible. Walking, yoga, Pilates, a recumbent stationary bike, etc. might be some options. Exercising with a buddy might add security and it might even make exercising more fun. Tip: start small and safely.
Nutrition: Patients should check if they skip meals, go all day without eating. Is what they eat considered healthy? It may be a good idea to consult with a nutritionist. Also, it is important to stay hydrated and to build in time to rest during the day (even if it is having a 15-minute tea break).
Sleep: PNES can be accompanied by depression and anxiety which are known to be disruptors of sleep. Additionally, seizures can wear the patient out, knock their sleep cycle out of sync, and create a circular problem because the worse the patient sleeps, the more likely they are to have a seizure. A first jab at this problem might include making sure that the sleep is kept on a regular schedule, building in some “winding down” time before bedtime, making sure the mattress, pillows and room temperature and lighting are conducive to restful sleep. Also, practicing deep breathing and visualization of a calming sensation that travels from head to toes can help. However, if the problem is severe and is not responding to all these commonsense recommendations, patients should consider making an appointment with a sleep specialist. - Keeping the brain’s health in mind: Mindfulness and meditation are excellent for reducing stress, increasing that connection between mind and body that is needed in PNES. These can also help anchor and ground the individual.
With PNES, concentration and mental stamina can take a hit, but as much as possible, given the challenges seizures represent, it’s important to keep mentally active. Reading, listening to books on tape, solving puzzles, playing chess, listening to music, playing music yourself, or learning a new skill (e.g., through YouTube, or online courses) are some ways to keep the mind active and engaged. Everyone is different and has different tastes, so these mental activities will be personal and perhaps unique. - Nature: We are realizing more and more that nature has the potential to give us a sense of peace, balance and sometimes awe and wonder. Keeping safety in mind, some patients might benefit from going out into nature (e.g., the backyard, a park, or if feasible, walking a safe trail). When doing this, the cellphone should be put away, and patients should focus on their surroundings, from the smallest plant or leaf or the vastness of the sky or a field, the sounds of nature, the smells, and much more. If walking, try walking mindfully (paying attention to how your body moves, what you see around, what sounds you hear). If sitting, pay attention to all the sights and sounds, the colors and shapes, and allow yourself to feel the calm.
- Push back on the isolation that can accompany PNES: Gently but firmly, it is important to push out of the limited comfort zone that develops with PNES. We are social beings and whenever possible, it is healthy to spend time with people who you love and who love you. Allow yourself to enjoy the time spent with your friends, caregivers, or family members while you recover. You may need a buddy to exercise or to go to a store; allow yourself to appreciate that person and the time spent together. You may want to learn more about the PNES community, or to volunteer (sometimes this can be done from home), or to take a course or join a club.
I hope this has given you some food for thought and that you may start thinking about how to care more for yourself as one of the important pathways to recovery.
https://pneseducation.thinkific.com/collections/education-for-patients