The duo from Vanderbilt University discussed the lack of awareness for functional seizures, their differences in treatment, and what needs to change about their current management.
This is part 2 of a 2-part interview. To view part 1, click here.
Recently published findings from researchers at Vanderbilt University suggest that there are associations between functional seizures and cerebrovascular disease, as well as posttraumatic stress disorder (PTSD) and sexual assault trauma. These type of seizures are unique because they are not specific to just neurology and epilepsy, but border psychiatry as well. As a result, there are gaps within treatment and a number of associated negative stigmas that lead to poor clinical care, according to Lea Davis, PhD.
Davis, an associate professor of medicine at Vanderbilt Genetics Institute, and investigator of the study, noted that these seizures are often misdiagnosed, and can lead to incorrect treatment. Finding a specialist that crosses over on both the neurology and psychiatry side of clinical care can also be a great challenge for patients with functional seizures. Davis’s colleague and lead author of the study, Slavina Goleva, echoed much of what Davis had to say, adding that patients are sometimes wrongly accused of faking their functional seizures when in reality their issues were already misdiagnosed and misrepresented from the start.
Goleva, a graduate student of Molecular Physiology and Biophysics at Vanderbilt University Medical Center, and Davis, sat down to discuss a few of the take-home messages from their study. In part 2 of this interview, they detail the lack of awareness about the effects of trauma, issues with stigmatization, and ways to mitigate functional seizures going forward.
Lea Davis, PhD: For folks who study or treat trauma, this doesn’t necessarily come as a surprised. But for a lot of people, it is surprising to realizing that trauma doesn’t just have negative effects on the mind, but actually has negative effects on the brain. We’re starting to understand how trauma gets under the skin, so to speak. It can have some important implications ranging from understanding the impacts of acute and severe trauma to microaggressions experienced chronically over a lifetime. Functional seizures, like we previously mentioned, are at the boundary of mental health and neurology, and provides us a window to begin to understand how the 2 are related. But I don’t think the story ends there, I see it more of a starting place if anything.
Lea Davis, PhD: That’s really the million dollar question. Integrated care is essential here. The other essential piece is reducing that diagnostic odyssey time. That is, from my perspective, largely an issue of awareness. Because the diagnosis can actually be made in a straightforward way, once you get the patient to the right provider, with the right equipment to be able to do the video EEG. Reducing that diagnostic time and increasing our approaches to integrated care are 2 essential pieces. But above that, we just need better and more treatment options for people with functional seizures. Right now it is very limited. Additional resources invest in clinical trials and further research is going to be paramount in seeing improvements in patient care.
Slavina Goleva: Reducing the stigmatization would really help. If you think about the odyssey to diagnosis a patient, almost essentially 80% of them start with a misdiagnosis of epilepsy. If you start having seizures, you think you’re having epilepsy, you get put on anti-epileptic drugs for quite some time, and they don’t work. Then you’re referred to an epilepsy monitoring unit, to which you’re then diagnosed all of a sudden with a functional seizure disorder, which can go by several different names. Essentially, you thought you had epilepsy for 8 years.
For a lot of these patients, it can be really hard. They don’t know what this disorder means. It can be hard to accept the diagnosis because it is so stigmatized, but that’s getting better. In the past, a lot of these patients haven’t been believed because there’s no accurate electrical signaling that can be detected on an EEG. They’ve been accused of making up the seizures or faking them, which is completely untrue. It is a subconscious process. I do think however, the more research we do on this disorder and continue to spread awareness, the easier it’ll become to live with and get better treatment options.
Lea Davis, PhD:Absolutely, I think the fact that it doesn’t sit in a specific bucket is definitely a contributor. We have always had this historical separation between psychiatry and neurology. A lot of those conditions that sit at the boundaries of those specialties end up falling through the cracks, and you see that clinicians may not have the full set of tools to be able to diagnose and treat the condition. Unfortunately, for a lot of folks to who experience the symptoms in those boundary conditions, this long diagnostic odyssey is not unheard of, and is actually quite a common story.
The stigma experienced by these patients is also not unheard of. Even in the medical system, being able to find providers who are cross domain competent and can do the treatment or even be able to put together the right team to do the treatment can be challenging when you’ve got all those barriers. That includes the long time to diagnosis, the need for a team, the stigma that goes along with you, and having a complex condition that’s hard to diagnose.
Slavina Goleva: I think that’s actually the first time I’ve ever thought about that, and to me it sounds like a great idea. I’m not sure practically the best way to make it happen, but in theory it’s a great idea for counseling centers to help promote awareness. They too themselves need to be aware that if someone comes to them and is experiencing seizures, that they could potentially be experiencing functional seizures. Additionally, having this awareness includes being able to talk to patients about the neurological effects of trauma so that if a patient starts experiencing them, they aren’t blindsided or caught off guard.
Lea Davis, PhD: We are working with our colleagues in neurology to dig more into understanding the relationship with cerebrovascular disease that we’ve identified. My hope is that other groups will do that as well. Like I said, it’s definitely a relationship that needs validation, replication from an outside data set. We need to see if this was something that was unique to the way we ascertain or collect our functional seizure patients, for example, would be an important thing to test.
The other thing I want to highlight is that the relationship between mental health and physical conditions is not restricted to conditions like functional seizures, Tourette’s, or other neurological traits. Despite it being very profound in those conditions, its actually true across pretty much all health. We have really separated mental health from the rest of our health. One of the things my group is interested in, and something we try to promote, is understanding the relationship between the 2 can be critical to the treatment of both. That’s just something I wanted to emphasize.
In terms of future directions for this study, we are also working on a genetic study right now that Slavi (Slavina) is leading. Hopefully the results of that will be out sometime over the summer or at least certainly by the end of this year.