Working Through My Fears of SUDEP

One of the many uncertainties of epilepsy that always lingers in the back of my mind is the fear of sudden unexpected death in epilepsy (SUDEP).

This unexpected possibility brings about a mix of fear and anxiety that I grapple with. I find myself thinking about it more often than I'd care to admit, especially when I come across news of someone who has passed away due to this cause.

SUDEP is scary

It's during these times that the fear takes center stage, even overshadowing the brighter moments of my day. The idea that a seizure could potentially lead to sudden death is a distressing thought, triggering feelings of anxiety, stress, and a deep-seated sense of vulnerability within me.

At times, as I prepare to sleep, the fear sneaks in, heightening my awareness of every little sensation, twitch, or movement my body makes.

How do I handle my fear of SUDEP?

Seeking support

The first step I always take in confronting this fear is to speak to my husband. He always agrees to check up on me during the night, providing me with a sense of security and safety I need to sleep through the night. Having him there to watch over me offers a reassurance that goes beyond words.

Also, I always reach out to my church group, which has been continually helpful. Their prayers and words of encouragement became a source of comfort, helping me find moments of peace amid the chaos of my worries. My group is an excellent source of support!

Consulting with epilepsy medical professionals

I like to address most of my fears head on. (My fear of heights is among the exceptions.) So the most recent time I had this fear, I decided to have an open conversation with my neurologist.

We discussed my concerns and my neurologist helped to ease my fears. His expertise and guidance provided me with insights that are invaluable. Hearing his feedback about SUDEP with my type of epilepsy and current medical condition was very calming.

Positive self-talk

When anxiety starts to take over, I remind myself of my progress. I tell myself that I have been seizure-free for many years, thanks to the medication and management techniques I've diligently followed.

This self-talk helps me feel in control and reminds me that I've taken tangible steps to mitigate the risks associated with SUDEP.

Medication

Despite my best efforts, there are instances when anxiety becomes overwhelming. The fear of SUDEP has a way of taking hold, and there are occasions when the strategies I usually rely on simply aren't enough. In these moments I turn to what I playfully call my "happy pill." Being treated by a medical/mental professional professional for anxiety is sometimes needed.

Managing epilepsy fears

I'm still on my journey, and what I've come to realize is that while fear might show up in my life from time to time, it doesn't have to take over.

With the help of these strategies, I regain a sense of control and find peace. Looking ahead, I'm excited for the advancements in medical research to lead to a cure for epilepsy, making this fear a thing of the past.

Until that day comes, I'm holding onto my support systems, maintaining my epilepsy care plan, drawing strength from my spirituality, and empowering myself. Always remember, you are not alone!