SUDEP risk factors and my wakeup call

I got a wake up call when I attended the American Neurological Association’s Annual Meeting. At the meeting I heard Alica Goldman, MD, PhD, of Baylor College of Medicine present her research on SUDEP or Sudden Unexpected Death in Epilepsy. She began her talk with a note on how the incidence of SUDEP is grossly underestimated and could affect a range of 5% to 18% people with epilepsy.

When applied worldwide, we are looking at a range of 3,250,000 to 11,700,000 deaths.

In the US that translates to a range of 121,000 to 396,000 deaths each year.

Additionally, people with epilepsy are 24 times more likely to die than the general population. But that wasn’t what blew me away.

SUDEP Risk Factors

I sat in shock as she presented her findings on the risk factors associated with SUDEP as determined from animal studies. I had always understood that SUDEP was something that only impacted people who had refractory epilepsy. But if Dr. Goldman’s animal models hold true in humans, then I was misled.

According to Goldman’s animal model research, increased risk factors include the following:

• Polytherapy (on more than one anticonvulsant)
• Long duration of treatment
• Gender (males at slightly higher risk)

Neuro-Cardiac Connection

She also spent a great deal of time focused on the role of the neuro-cardiac connection. When someone is pronounced dead it is known that the person has stopped breathing or the heart has stopped. It is also known that seizures are associated with prolonged and severe respiratory depression. I have to admit, the science on this is a bit over my head. However, Maromi Nei, MD, published a piece that dovetails nicely with Dr. Goldman’s research.

My Wakeup Call

The risk factors were too familiar for my comfort level.

1. I am also on more than one medication to control my seizures.
2. I have been on anticonvulsants for more than half my life and will be on them forever.
3. Oh yeah, forgot to mention, I have a family history of cardiac disease.

The only thing working in my favor right now is that I am a woman!

I can’t do anything about the polytherapy. I can’t do anything about the duration of treatment. But I can improve my cardiac and lung function.

Translation: I need to start running. ugh

Running2live

Every time I think about running I am overwhelmed with dread. You would think I would be out there every day, right? No, I am a body at rest. (you know, a body in motion will remain in motion, while a body at rest– oh you get it.)

Recently, my husband suggested I might want to blog about my reason for running and my progress. He offered it as a motivator, I of course took it to a new (unnecessarily complicated) level.

I’m going to add a section of the site called Running2live and keep you all in the loop on how I’m doing. DON’T expect a lot. It is really cold here. And I REALLY hate running.

But I love my husband and daughter and want to spend as much time with them as I can. Any suggestions are welcome!!

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

See Full Bio

Epilepsy