October is here: Time to indulge in pumpkin spiced delicacies, Halloween decorations, and crisp autumn days. On the more serious side, October is also an opportunity for raising awareness about the risks of Sudden Unexpected Death in Epilepsy, or SUDEP.SUDEP refers to deaths in people with epilepsy that are not due to injury, drowning, or other known causes. So, a person who has a fatal accident while doing something during a seizure like biking does not count as a SUDEP death. According to the World Health Organization, over 50 million people worldwide have epilepsy, and researchers estimate that one in 1,000 of them die of SUDEP annually. Although it’s the largest cause of death among people with epilepsy, doctors are still not certain about SUDEP’s exact root causes.
In 2014, a British nonprofit SUDEP Action launched SUDEP Awareness Day, now known as SUDEP Action Day. Held annually on the third Wednesday in October, SUDEP Action Day aims to empower those with epilepsy by encouraging them to work with their providers to reduce epilepsy and SUDEP risks. SUDEP Action Day also aspires to highlight the need for increased epilepsy research funds, resulting in improved treatment options.
As many readers know from my previous blogs, I had uncontrollable seizures for decades, prior to brain surgery. Fear of SUDEP played a role in my decision and being a parent bolstered my bravery reserves. When the neurologist reminded me, that uncontrolled seizures could lead to SUDEP, I knew surgery was the only responsible option. I couldn’t risk leaving the kids motherless.
Occasionally, SUDEP makes the news when somebody with celebrity status dies from it. In 2022, South African Kwaito musician, Tokollo Magesh Tshabalala died from a seizure at age 45. He was found by a family member after dying in his sleep. In December 2021, former Denver Broncos quarterback Demaryius Thomas was found dead in the shower after suffering a seizure at age 34. In 2019, actor Cameron Boyce died in his sleep after having a seizure at age 20. And in 1998, Olympic gold medalist Flo Jo Joyner suffocated in her sleep after having an epileptic seizure at age 38. But most of the 50,000 deaths per year go unnoticed other than by their grieving loved ones.
This year, we have some hope as we acknowledge SUDEP Action Day, thanks to a new study out the University of Iowa, published earlier this month. The study found that seizures originating in specific parts of the brain’s amygdala region suppress the person’s sense of “air hunger,” or their primal urge to breathe. Researchers found that because people having this type of seizure cannot respond to the lack of oxygen, they don’t breathe, resulting in death due to asphyxiation. This one small finding in the medical research landscape is huge news for the 50 million people with epilepsy. Now scientists researching SUDEP know they should focus on amygdala-brainstem links. Hopefully this will ultimately lead to the SUDEP’s demystification, successful preventative measures, and increased saved lives.
While it’s worth celebrating this on SUDEP Action Day this year, I must also note my frustration at the National Institute of Health’s (NIH’s) concluding statement: “Additional studies are needed to confirm the role of the amygdala in breathing suppression and its involvement in SUDEP.” The NIH funded the University of Iowa’s research. Given their statement, they clearly need to fund a follow up study to confirm the causal relationship between SUDEP and breathing suppression. Additional SUDEP research studies could further elucidate other possible causes, decrease SUDEP, and save more lives. As I’ve blogged before, the NIH allocates disproportionately small amounts of research funding to epilepsy, compared to other neurological conditions. No pun intended, but I’m not holding my breath.
My October newsletter is dedicated to promoting SUDEP Action Day. While epilepsy is mysterious, doctors are certain that the best way to prevent SUDEP is to lower your risk by controlling seizures. Increased awareness about this fatal outcome is the best way to prevent it. If you or someone you know has epilepsy, speak with the neurologist about SUDEP and its risk factors. Apparently, some practitioners worry that discussing these might frighten their patients, but clarity allows us to make informed choices about treatment and lifestyle that reduce SUDEP risks. This is critical for those who have intractable seizures, as they are at highest risk for SUDEP. Reviewing risk factors with your neurologist and taking steps to reduce them is a critical piece of self-care for patients with epilepsy.