Diagnosis and Management of Psychogenic Non-epileptic Seizures

Podcast Transcript

Dr. Alex Rae-Grant:  Neuro Pathways, the Cleveland Clinic podcast for medical professionals exploring the latest research discoveries and clinical advances in the fields of neurology and neurosurgery. Welcome to another episode of Neuro Pathways. I'm your host, Alex Rae-Grant, neurologist in Cleveland Clinic's Neurological Institute. In an effort to explore the latest advances in neurological practice, today we're talking with doctors Jocelyn Bautista and Becky Tilahun about diagnosis and management of psychogenic non-epileptic seizures. Dr. Batista is a staff neurologist and Dr. Tilahun is a clinical psychologist. They work side by side at Cleveland Clinic's Epilepsy Center. Welcome to Neuro Pathways.

So our listeners can get to know you better, let's start with an easy question for each of you. Tell us where you're from, where you trained, and how you landed at the Cleveland Clinic. Jocelyn.

Dr. Jocelyn B.:  So I grew up in the Midwest, in Chicago suburbs. I trained at the University of Illinois and then Washington University for medical school. I did my neurology training at Yale University and I've been here at the Cleveland Clinic ever since my epilepsy fellowship 20 some years ago.

Dr. Alex Rae-Grant:  Well, let's not talk about those things. Becky, what about you?

Dr. Becky Tilahun:  I'm originally from Ethiopia. I was trained as a psychologist at the Fuller Graduate School of Psychology in California, in Pasadena, California. I've always been interested in health psychology. That means you can be a psychologist with a specialty of working with patients with medical problems. And more recently, about six years ago, I was trained in chronic pain management, and was very similar was managing patients with psychogenic seizures, conversion disorder, so that was my training was mostly actually at the Cleveland Clinic in the specialty, in treating patients with somatoform disorder or somatization disorder. So that's how I ended up being here, working in the Epilepsy Center.

Dr. Alex Rae-Grant:  Psychogenic non-epileptic seizures or PNES, this can be a complex problem for patients and providers to understand or recognize. Given that's the case Dr. Bautista, can you start by explaining to our listeners what the difference is between epilepsy and PNES?

Dr. Jocelyn B.:  Epileptic seizures and psychogenic non-epileptic seizures can have many similar features, convulsive type movements, staring with unresponsiveness, patients may describe lapses in time. Their symptoms and signs can be similar. But epileptic seizures are caused by abnormal epileptic activity or epileptiform discharges in the brain. Whereas PNES is often due to underlying psychological or psychiatric conditions.

Dr. Alex Rae-Grant:  So I understand upwards of a third of the patients that we see at the Epilepsy Center in the epilepsy monitoring unit have PNES. That's quite a large percentage of the practice. If I was a provider with a patient experiencing what looked like seizures, what should I be looking for as an indication that might actually be PNES and not epilepsy?

Dr. Jocelyn B.:   So certainly if you have a patient with seizures that are not responding to traditional treatment for seizures, that can be a clue. Patients who've had multiple normal EEGs can be another clue. Sometimes particular features that the patient or the family may describe, convulsive type movements lasting 10 minutes or longer, or the patient describing convulsive type movements with preserved awareness, those can be signs that the patient may actually have PNES.

Dr. Alex Rae-Grant:  But it can be hard sometimes to tell them apart.

Dr. Jocelyn B.:  It can be hard.

Dr. Alex Rae-Grant: Yeah.

Dr. Jocelyn B.:  And certainly whenever there's a question of the diagnosis or the appropriate treatment, it's always appropriate to refer a patient to a comprehensive epilepsy center.

Dr. Alex Rae-Grant:  And so if I was to refer a patient to a center like yours, what would I be telling the patient about the evaluation and what you guys would put them through?

Dr. Jocelyn B.:  So it often does require an inpatient video EEG evaluation that records the seizures themselves. It often requires that to be certain of the diagnosis.

Dr. Alex Rae-Grant:  So what aspects would you see on the EEG that would tell you it's PNES and not a seizure problem?

Dr. Jocelyn B.:  So it would be the absence of epileptiform discharges on the EEG during a typical seizure like event.

Dr. Alex Rae-Grant:  So you don't have to record one of their spells or more of their spells. So I expect that presenting this kind of diagnosis to a patient needs to be handled somewhat delicately. How do you guys approach that in your practice?

Dr. Jocelyn B.:  So typically we deliver this diagnosis in the epilepsy monitoring unit, after we've recorded the episodes in question. And every physician has sort of a different style, different phrases, analogies we might use. But the main message we want to convey is that these are real symptoms and that this is a condition that we see quite a lot. As you mentioned earlier, 30% of our patients in the monitoring unit are diagnosed with PNES. So this is certainly a condition that we've seen and that we've treated and it can get better.

It's important to try to make that connection between emotions and psychological distress and how that can be converted to physical symptoms such as non-epileptic seizures. And it's incredibly important to take your time and to deliver the diagnosis with empathy for what they've been through and for what this has done to their lives, and to be as patient as possible and constantly checking with them after you've explained something to check for their understanding.

So it does take time, but it's crucial. Delivering the diagnosis effectively can actually be therapeutic in the short-term. Whereas if it's not delivered effectively, the patients can go away angry and the seizures will likely get worse.

Dr. Alex Rae-Grant:  So it's a really important phase, what's going on. Let me ask though. Once you have made this diagnosis, how does your team manage the care of these patients and what kind of typical treatment plan do you have for them? Maybe Becky, I'll ask you to fill that one.

Dr. Becky Tilahun:  So once these patients are diagnosed with non-epileptic seizures, we actually try to stay away from the psychogenic diagnosis initially, just so that patients are not defensive or surprised. But once they are diagnosed and they were informed by the epileptologist, I get the chance to see them while they are in the inpatient monitoring unit. This increases the chance of them coming back for the outpatient program, because it's easier to go back to a psychotherapist when you already met them and you feel, maybe you feel comfortable with them. So we make that connection while they are in the hospital and then they come to the outpatient clinic.

The treatment program that we provide is a CBT-based program. This is developed at the Brown University mainly by an expert in non-epileptic seizures, Dr. Curt LaFrance. And this workbook has 12 chapters. We meet the patients 12 times. And some of the topics covered are risk factors that cause non-epileptic seizures. So these patients learn how to express emotions, how to relax. They get trained in relaxation training. These patients get trained in how to assertively communicate their needs. Most of these patients are not very good in asking for their needs. So we really equip them with tools so they can go home and manage stressful events on their own. It's not the type of therapy where you go and talk about different stressors and the therapist helps you.

In addition, this program is really about equipping patients to know how to handle stressors, problems on their own. So it's about empowering them, increasing their self-efficacy. So they finish this 12 week program. Then we transfer them maybe to an outpatient therapist that will continue to provide supportive counseling based on what they need. Maybe if they have, for example, post-traumatic stress disorder (PTSD) that is comorbid with a conversion disorder, the non-epileptic seizure, they have to continue doing counseling. So that's kind of how we finalize their treatment.

Sometimes we do family counseling, couples counseling. Sometimes if the problem is within the family unit, providing additional counseling is very important. So we make sure that we address different areas that is believed to be contributing to the symptom.

Dr. Alex Rae-Grant:  I guess from your respective positions in this, seeing this population, what are some of the biggest challenges with diagnosing, treating PNES? I mean, what would be the real big problems in this field?

Dr. Jocelyn B.:  Probably the biggest problem is access to mental health care, access to providers who feel comfortable treating this diagnosis, who have an interest in treating this diagnosis, who are trained to treat. That was our biggest issue before Dr. Tilahun joined our center. And it's still a big issue because many of our patients are not able to come back. They are not from the immediate area or they live out of state. They're not able to return weekly. And so finding them providers closer to their home, it remains a big challenge.

Dr. Becky Tilahun:  The challenge from the psychological perspective has been just helping patients accept the diagnosis. This is a neurological symptom. And for patients to understand that some stressful event in their past can make their body react in a such a violent way or cause them some very significant sensory or motor functioning losses can be very confusing. And so it's difficult for them to really see this as a psychiatric issue. They remain unconvinced a lot of times. So it's really helping them, again, to acknowledge that this is a psychological problem is one of the challenges.

Other challenges for providers for us is when we don't see the typical risk factors. These patients are supposed to, or most of the time have some major stressful event in their childhood, or currently major losses, life altering experiences, and when you don't see that, it's hard even for the provider to get convinced. So kind of, again, being patient in helping these patients accept that this still can be an expression of unresolved emotions. And for this type of patient, the problem might be they're just not very good in dealing with emotions, in acknowledging, or their coping mechanism might be what's the problem. So that is other kind of challenge in working with these patients.

A third issue might be these patients to begin with have difficulty with emotional areas, accepting that they can have stress. That's a big thing. They are not very comfortable talking about mental illness, going to counselors. That's not a comfort area for them. So here we are telling them that you do have this psychiatric issue, or you do need to go to a counselor and that's what actually caused them to develop this problem in the first place.

So for them to get to a point where they accept these areas that's very much out of their comfort zone is a challenge that we have to help them overcome in a safe, trusting kind of relationship with a psychotherapist.

Dr. Alex Rae-Grant:  You deal with a large population of people with PNES. How is that done? How do you deal with a large group? What are the mechanisms that you bring to bear to do that?

Dr. Becky Tilahun:  And I think the fact that even we are here together, the interdisciplinary collaboration is a big one. Having as epileptologist to help clarify sometimes symptoms that might be confusing. Patients might continue to question, is this psychological or is this, do I have epilepsy? And sometimes we might even wonder are we missing something? And so working very closely was an epileptologist, a psychiatrist, a social worker and other neurologist to rule out other explanation of the symptoms really enables us to do this work.

Because if you're doing this in a private practice setting and you're wondering maybe this patient have a comorbid issue, you're not in a good place to do the treatment. But we can quickly give our opinions, perspectives, to really focus on the fact that this is actually a psychological issue and we need to address that. So the collaboration I think is one of the main one. Being able to see patients in the EMU before even they go home I think, that's also another, another I think very important part of this program.

I think thirdly having this workbook that is specifically designed for this program and being able to provide that is also very helpful. This is evidence-based program. It was tested in different settings that this workbook has been very effective in reducing seizures, and I think that is also part of I think our success in helping these patients, is having that training and the support from the workbook. Being able to use the workbook has been very helpful.

Dr. Jocelyn B.:  Yeah, I think it's very important for the patients to have met the psychologist while they're in the monitoring unit right after being given the diagnosis and to have such a smooth transition to outpatient treatment. I think that is one of the reasons why we're able to treat. And I think just having the whole EMU, all the nurses and everyone who works there educated about the diagnosis and the patients feel that they're finally getting answers. I mean so many of them have been jumping from hospital to hospital, doctor to doctor, trying to find answers. And so I think when they finally feel that there's a whole center here who is able to tell me what my diagnosis is and what the treatment should be, then I think that helps.

Dr. Alex Rae-Grant:  So any additional insights that you would give providers who don't typically see or treat PNES, but may suspect they have a patient with the condition? Other ideas for them or strategies that they could think of?

Dr. Jocelyn B.:  Dr. Tilahun mentioned this earlier, that we like to stay away from the term psychogenic non-epileptic seizures. When I was in training years ago, the most common term for this was pseudoseizures. And there still are many doctors who think of this as pseudoseizures. And the problem with that, even though the original medical term wasn't meant to imply anything fake about them, that there is a misconception among many in the medical community that these patients are faking their symptoms and they're faking their seizures.

And that is really very damaging to patients when they get that impression from providers, that they're not being taken seriously, that their symptoms are not considered genuine. So many of them have been traumatized already. This is just yet another form of trauma that the medical community is inflicting.

So I think that it is important to realize that these are true symptoms, that the patients do not have control. But there is treatment. And whenever you do suspect this diagnosis, you should refer them to a place that can treat them.

Dr. Becky Tilahun:  I think I would like to add to what Dr. Bautista said in terms of the empathy and how gentle we need to be with these patients. These patients, we have to realize these patients are hurting patients. They have a history of trauma, losses, just very fragile. They have depression. And most of the time our experience has been these patients feel very judged or mistreated by the providers, by the neurologists. And so we have to be very careful treating these patients as very delicate and not telling them the diagnosis and just sending them to another provider, or being dismissive and harsh and kind of punitive without intentionally doing so. So being very honest and direct with these patients, but doing it with a lot of care and gentleness and empathy is very important.

Dr. Alex Rae-Grant:  Well, Jocelyn, Becky, thank you so much for joining us today. It's been a very insightful conversation. Thank you for all your work with these patients and with the Epilepsy Center. Thank you for coming today.

Dr. Jocelyn B.:  Thank you.

Dr. Becky Tilahun:  Thank you.

Dr. Alex Rae-Grant:  This concludes this episode of our Neuro Pathways podcast. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast. Subscribe to the Neuro Pathways podcasts on iTunes, Google Play, Spotify, SoundCloud, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website, consultqd.clevelandclinic.org/neuro, or follow us on Twitter @CleClinicMD, all one word. That's @ C-L-E clinic M-D on Twitter. Thank you for listening. Please join us again soon.