Epilepsy is Complicated
I was diagnosed with epilepsy at age six in 1973. After my first seizure, the pediatrician followed protocol and sent me to a neurologist. I saw Drs. Brill and Aaron at Mt. Sinai Hospital in Manhattan, who prescribed anti-epilepsy drugs and treated me until I moved out of state in 1979.
3.4 million people in the U.S. have epilepsy. I was one of the 30% of us whose seizures could not be controlled by medication. Seventeen medications and four decades later, I was able to get my seizures under control with double brain surgeries. During that time, epilepsy treatments expanded: New medications and new technologies including brain surgery and Vagus nerve stimulators were developed. The field is far more nuanced, so in 2010, the American Board of Psychiatry and Neurology created an Epilepsy sub-specialty and accredited fellowships for those studying neurology. These students’ post-graduate work is focused on diagnosing and treating epilepsy. They become epileptologists.
Who needs an epileptologist? Epilepsy patients with complicated cases, including those whose seizures cannot be controlled by medication, those who have negative medication side effects, patients with other conditions that impact their epilepsy, and those who are pregnant or planning to become pregnant. Data shows that one in five people with epilepsy have active depression and 26% have anxiety disorders. Couple these statistics with the 30% of us whose seizures can’t be controlled by meds, those who are planning to get pregnant, or have medication side effects and a lot of people with epilepsy should see an epileptologist. The problem is that where the specialty is relatively new, not everybody knows it exists.
This month’s newsletter was inspired by a recent story about two women with epilepsy who died from seizures. They were both being treated for epilepsy and pregnant at the time of death. Paige Ellis, age 28, was taken to the University Hospital of Wales’ E.R. where Ms. Ellis received her neurological care, but there were no beds. After waiting six hours in the ambulance, the driver offered to take her to a different hospital. By then the seizure had passed, and the Barry Hospital only treated her injured foot. When she subsequently had another seizure at home a few days later, she didn’t go to the hospital because that wait was so long. About a week after that, she died of a suspected third seizure while in bed at home on July 23, 2022.
Ms. Ellis’ death came shortly after that of another pregnant woman who also received neurological care from the University of Wales Hospital. Megan Gardiner, age 25 died on June 4, 2022, following a suspected seizure. Both women had recently been given new epilepsy medications by practitioners at University Hospital of Wales. Their families have joined forces and demanded a formal investigation of the Cardiff and Vale health board that oversees the hospital. “I just want answers,” Ms. Ellis’ partner said. “I want to make sure [Paige] was getting the most care she could have, and I don’t want there to be any people out there who have no idea they’re not getting the right care.” This week the families will meet health board representatives. They have been told the investigation is expected to be complete in October.
I looked up the University of Wales Hospital. It has a Pre-Conceptual Counseling Clinic and an Epilepsy and Pregnancy Liaison Center, but I did not see neurologists who specialize in epilepsy or epileptologists listed on their website. Wales might not offer certification for an epilepsy specialty, but this story makes me think that they should. Perhaps Ms. Ellis and Ms. Gardiner would still be alive had they been seeing an epileptologist.
I was lucky. In the mid 2010’s I received my neurological care at Brigham and Women Hospital, which had epileptologists on staff. By then I’d tried multiple medications, so without my having to ask, my initial neurologist transferred my case to an epileptologist colleague.
I belong to multiple virtual support groups for people with epilepsy, where members frequently seek advice from each other. I see many posts from folks managing multiple health issues, and psychological comorbidities are common. If I respond, I always suggest they work with a neurologist who is also an epileptologist. Because they have more experience in diagnosing and treating people with epilepsy, epileptologists often have more resources at their fingertips, and may also know about more advanced and experimental treatment options.
In addition to lack of awareness, accessibility is an issue. A quick search on MD.com listed epileptologists in only 33 out of 50 states. WebMD.com lists them in all 50 states, but many rural regions only have epileptologists in one major city. Where many people with epilepsy can’t drive, that means this critical care might be inaccessible to those who live far from these metro areas. Epilepsy is complicated but Telehealth appointments are easier to get since the pandemic. I would encourage anybody with epilepsy who needs an epileptologist’s expertise to seek it out, and meet with the practitioner virtually, if necessary. Their skills and care can be life changing and lifesaving.