Epilepsy has been a known condition for thousands of years–there were even cases documented in ancient times–yet it still perplexes clinicians and researchers today. Zhiyi Sha, MD, PhD, M Physicians epileptologist and neurologist and Sima Patel, MD, M Physicians epileptologist, work with epilepsy patients to better understand their condition, find the best treatment plan and improve their quality of life.
“We actually still don’t know why it happens and I always thought that was very interesting. One of the challenges is that it’s highly unpredictable from day to day because you never know when the seizures are going to happen,” Dr. Sha said.
Epilepsy is not a single disease, but rather a group of diseases that manifest a clinical presentation through seizures. The diseases stem from a variety of different causes, including traumatic brain injury, stroke, brain disease, infections, malformations and tumors. Some people also have genetic epilepsy, meaning it’s inherited. If seizures are caused by a wide network, then they’re called “generalized” seizures, but if they originate from a focal area or a specific injury then they are classified as “focal” seizures.
Patients typically start by speaking with a general neurologist or their primary care doctor who would then refer them to an epilepsy specialist like Dr. Sha or Dr. Patel.
“I start with a blank slate and look back all the way from when the seizures start, even through their childhood. ‘Were there any events that would have resulted in abnormal scar tissue in the brain or trauma to the brain?’ You talk about the seizure semiology––how does it present itself and affect their quality of life and daily function. Then, you review all of their medication and other medical conditions. I like to focus on the psychosocial aspects because I think epilepsy really affects daily life, even their ability to drive, work and have relationships,” Dr. Patel said.
The epileptologist compiles the full picture and works through the finer points of care while relying on their surrounding care team to help educate their patients. Since there are so many options, epilepsy treatment is often a team effort.
“I need to dig into all of the details. Which medications worked or which did not. Did they have any allergies or comorbidities? I need to learn a lot on the first visit and then after that we’ll formulate a plan for both the treatment and diagnostic testing. We need a lot of effort from the nurse team and it’s really a team effort. Nurses will usually give a comprehensive education about treatment and options. Neuropsychologists and pharmacists can also inform people about options,” Dr. Sha said.
Some patients have one seizure every few years whereas some have dozens every day. It’s challenging to predict when the seizures will happen because there are no indicators available to clinicians like with other medical conditions, such as diabetes, where an individual can check their blood sugar multiple times per day to assess their health.
Most patients go through two important brain tests: magnetic resonance imaging and an electroencephalogram. Some patients also require blood work to determine other biological markers. These tests, in addition to their medical history, determine the next steps. Treatment plans depend on a wide range of data to ensure that they meet each individual’s unique needs.
Patients need to trust you and your character. That’s when they’re going to listen to you. It is a huge honor for someone to listen to you about medications or about brain surgery and device surgery. They’re really putting a lot of trust in you so you have to be very sensitive to what their needs and personal goals are. That’s one of the parts that I feel most passionate about and I have fun with outside of the hard science of all of it.
Some medications can be used toward focal epilepsy but aren’t effective for generalized epilepsy, making selection of the proper medication a tricky process.
“A lot of times, medication alone will work and epilepsy as a whole can be controlled by it, but there’s one third of patients that can’t, so we have to look for other treatment options such as surgery or neuromodulators. There are many different treatment options,” Dr. Sha said.
Resective surgery, meaning the removal of one portion of the brain—typically the onset zone—can be applied in focal epilepsy but not generalized epilepsy. Epilepsy experts like Drs. Patel and Sha communicate about different options throughout the ongoing process.
“With the chronic management of patients you really build a wonderful relationship with them. These patients invite you into their lives and it’s a very sacred space when you’re working with them,” Dr. Patel said.