Normalizing depression in epilepsy: Screening, diagnosis, treatment - Dr. Rosa Michaelis

Nearly 1 in 4 people with epilepsy experiences depression, which affects quality of life, seizure control, and adherence to treatment. Depressive symptoms - including suicidality - are one of the strongest predictors of poor quality of life in people with epilepsy, and they can be overlooked or minimized both by people with epilepsy and by clinicians. Sharp Waves spoke with Dr. Rosa Michaelis about the role of neurologists in discussing, screening, diagnosing, and treating depression as a crucial part of patient care.

Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

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Transcript

Dr. Rosa Michaelis: [00:00:00] My name is Rosa Michaelis. I'm a neurologist and psychotherapist at a level four epilepsy center in Bochum, Germany, and there I'm responsible for integrated mental healthcare, so things like screening, making and comm communicating, diagnoses, treatment planning. I really enjoy that part of my work.

Nancy Volkers: Thank you for joining us. So we're here to discuss depression awareness and treatment considerations in people with epilepsy. So I'd like to start with just some background information. How common is depression in adults? We are talking specifically about adults today. Is it more common in certain age groups with certain types of epilepsy or anything like that?

Dr. Rosa Michaelis: Yeah. Thank you. Well, depression is one of the most common psychiatric comorbidities in epilepsy. The pooled point [00:01:00] prevalence is around 23%, and it affects people across all ages, seizure types, and epilepsy syndromes. Some subgroups do stand out: For example, people with temporal lobe epilepsy tend to have a higher risk. Really overall, the key message is depression is very common and we need to keep this in mind for every person with epilepsy, regardless of their age or specific diagnosis. 

Nancy Volkers: So you said, “pooled point prevalence.” For people who are not clinicians who are listening, can you explain that?

Dr. Rosa Michaelis: Yeah. Absolutely. So that's looking at the population at a given point in time and pooling data from various papers.

Nancy Volkers: So it's sort of a point-in-time snapshot, 23% of people with epilepsy have depression at any given point in time. Which is quite high. 

Dr. Rosa Michaelis: Yes.

Nancy Volkers: So is there any evidence about the [00:02:00] etiology of depression? Does it stem from the same sort of underlying cause as the epilepsy, or is it caused by the epilepsy, or is it both? And second question, I guess would be, does it matter when you go to treat it?

Dr. Rosa Michaelis: Mm-hmm. Yeah. Excellent question. So depressive symptoms may present before the diagnosis, even before the first seizure. So that tells us that it's not just a reaction to the experience of seizures or living with epilepsy. It might actually be part of the underlying brain changes. And when we look at mood regulation, we are looking at a complex web of interacting factors, like always in neuropsychiatry, including brain networks, neurotransmitters, seizure activity, anti-seizure medications, [00:03:00] and lived experience embedded in social context. So awareness of that complexity does help us to understand different research perspectives and also treatment options.

Nancy Volkers: What's known about how depression affects epilepsy treatment and outcomes? 

Dr. Rosa Michaelis: Well that's a that's a big question. The short answer is, depression affects everything. It's been linked to lower medication adherence, poorer seizure control, and even higher risk of developing drug-resistant epilepsy.

Nancy Volkers: And what about just in general? Obviously, it's going to affect quality of life no matter who you are, but how specifically in people with epilepsy does depression affect quality of life?

Dr. Rosa Michaelis: Yeah. Yeah. It definitely affects quality of life. It's consistently lower in those with depression, even if the seizures are well controlled. So across studies we see that [00:04:00] same finding, that depressive symptoms turn out to be one of the strongest negative predictors of quality of life. So even people who are seizure free but have depression report a significantly lower quality of life, compared to seizure free patients without depression.

So depression again is not just a byproduct of seizure frequency, but it's an independent factor that we really need to take seriously. 

Nancy Volkers: And so the last impact question is mortality risk, which obviously is a serious risk factor. Can you talk a little bit about what's known about how depression affects mortality risk? 

Dr. Rosa Michaelis: Absolutely. So when we talk about depression, we also need to talk about suicidality. So compared to the general population, it's clearly and significantly increased in epilepsy, and risk factors include depression or history of depression. [00:05:00] But suicidality can also emerge in those without any obvious mood disorder. Especially in the context of frequent seizures, treatment resistant epilepsy, or even right after the initial diagnosis. 

Nancy Volkers: Thank you. So, I'd like to talk about diagnosis at this point. Are there any guidelines or recommendations available for diagnosis specifically in people with epilepsy? 

Dr. Rosa Michaelis: So I will give you a slightly longer answer, and I start with screening because that's where everything begins, at least for me. And then I'll talk about how these conversations about symptoms themselves can already be therapeutic.

And after that I'll share how evidence-based guidelines approach treatment from mild to severe depression and how we involve patients in the process. [00:06:00] And finally I'll touch on some very practical issues like access to psychotherapy, the value of online options, and the fact that anti-seizure medications themselves can strongly influence mood.

So first of all, we should screen systematically, ideally right at diagnosis and then again at follow up visits, especially after major treatment changes. And for that, I really like the NDDIE, the Neurological Disorders Depression Inventory for Epilepsy. It's quick, just six questions, and it screens both for depression and suicidality. It's simple to score and it's validated in many languages. 

Now there, there's one item on the NDDIE: “I'd be better off dead.” That item is particularly important. So if patients indicate at least “sometimes: (for that question’s response), we need to ask about it. And here [00:07:00] I would really like to emphasize that asking about suicidality does not increase the risk. It's often a relief for patients. It kind of opens the door for real conversation, and this is actually the first step in suicide prevention. From there we can explore the actual level of risk. Are there previous suicide attempts, either by the patient or in the family? Is there a specific intent or even a plan? And of course we must look at protective factors, so what keeps this person here? What connects them to life?

This conversation initiated by a high score on the NDDI-E is, as I said, more than just diagnostic. It's also therapeutic. So sitting down, being curious, maybe using the diagnostic criteria of depression as a guide to help us structure the conversation. Are there persistent low moods, loss of interest, trouble [00:08:00] feeling joy, reduced energy? Many people blame themselves for these symptoms or feel hopeless. So beyond ticking boxes, the very act of naming what's going on and saying, “This is common, this is a treatable condition,” can already reduce shame and bring hope when it comes to treatment.

I follow evidence-based guidelines. In Germany, we have both general ones and epilepsy-specific ones for the treatment of depression. Both distinguish between depression with mild, moderate, and severe symptoms. 

For mild and moderate depression, we decide together with the patient in a shared decision-making process whether to start with psychotherapy or antidepressant medication. Some patients want to talk, review their lives, some don't, and that's okay. First choice medications are SSRIs. They are not associated with [00:09:00] seizure worsening in people with epilepsy. And psychotherapy, especially CBT (cognitive behavioral therapy), has been shown to be as effective as an SSRI in epilepsy. 

For severe depression, a combination of antidepressants and psychotherapy is recommended. 

Driving restrictions may make it even harder for people with epilepsy to access in-person psychotherapy, so providing access to guided or unguided online therapy, that’s with or without support from a mental health professional, and app-based interventions can be incredibly valuable to improve access bridge gaps that we honestly see in healthcare systems across the globe, even in high-income countries. 

And of course, many anti-seizure medications can have negative psychotropic side effects. So whenever we see relevant mood changes, we need to take a close look at the current medication to see if we [00:10:00] can adjust dosages or switch to an ASM with a more favorable mood profile.

Nancy Volkers: So depression can make a person feel very alone. Is there any evidence that joining a support group or finding like-minded people online, other people with epilepsy to talk to that that helps at all? Maybe not clinically, but is that ever part of a treatment plan? 

Dr. Rosa Michaelis: Absolutely. Social support has actually been shown, not just in epilepsy, but in general, to be protective against depression and in epilepsy it is also in regard to seizure-related disability. 

Nancy Volkers: You mentioned SSRIs and how they are safe and people with epilepsy. 

Dr. Rosa Michaelis: Because people still think it's on the list, that it's a side effect of SSRIs to have seizures. So that's always important to mention. 

Nancy Volkers: What [00:11:00] about anti-seizure medications and their effect on depression? How should clinicians take depression into account when they're looking at ASMs? 

Dr. Rosa Michaelis: Yeah. that's a really important question. Because anti-seizure medications don't just decrease seizures. Many of them can also impact mood, and we should always keep this in mind when starting medication.

So medications like topiramate and zonisamide can increase the risk for depressive symptoms. For topiramate, we know that slowing the titration speed may significantly reduce the risk of developing depression in patients with a history of depression. That's a powerful lever that we can use to reduce the risk of side effects. And some ASMs have mood-stabilizing or even anxiolytic properties, like lamotrigine or [00:12:00] gabapentin. So such favorable psychotropic properties may also have a beneficial impact on adherence, which has been shown particularly for lamotrigine. So there obviously is also that interaction side.

Enzyme-inducing ASMs, like carbamazepine, phenytoin, phenobarbital, may lower SSRI levels. And on the other side, some SSRIs can slightly raise the levels of certain ASMs. Citalopram, escitalopram, and sertraline are the SSRIs with the lowest interaction potential. 

Overall, if there are uncertainties that need clarification, I recommend to check possible interactions. There is actually a recent special issue on pharmacotherapy or psychiatric comorbidities in Epilepsy and Behavior that brings together many comprehensive articles and tables on [00:13:00] that particular topic. 

Nancy Volkers: Oh, excellent. I can put a link to that in the show notes.

Dr. Rosa Michaelis: I was hoping you could do that. 

Nancy Volkers: Yes, we can do that. We can link to all sorts of things in the show notes. Okay, so we've talked about medication and a little bit about social support. Are there other lifestyle factors that are important in managing depression in people with epilepsy?

Dr. Rosa Michaelis: Yeah. So they are crucial: Exercise, regular sleep, balanced diet. These are universal mood supports. We all benefit from cultivating these in our lives, but in epilepsy, they may actually also help with seizure control. And as we've already touched upon social support as protective against both depression and seizure-related disability.

What's especially important though, is when we start talking about [00:14:00] this, bringing up lifestyle resources right from the time of diagnosis can really help strengthen a person's sense of self-efficacy. So the feeling that there are things I can do that make a difference. And that's a critical message. We have effective medical treatments to rely upon, and we also want to empower people with epilepsy to see that their own actions and daily choices can meaningfully improve their wellbeing.

So it's about balance. From my perspective, we aim for seizure control and at the same time, we help patients build a toolkit for their wellbeing. So they don't hold onto the thought that a good life has to wait until seizures are gone. 

Nancy Volkers: Excellent. Thank you. So this also made me think of a question that you may or may not be able to answer.

Sleep is already very difficult for some people with epilepsy. Exercise can be difficult. People are [00:15:00] afraid to do it or they don't have access to safe exercise.

And in people with depression, it's also very difficult, right, for people to eat a balanced diet and get good sleep and it's sort of a vicious cycle, I guess, is what I'm getting at. When you're depressed, you don't necessarily want to go exercise and eat salad. Are there strategies that you can share to get someone started on this?

Dr. Rosa Michaelis: Yeah, absolutely. That's an excellent question because really what is not helpful is to just tell people, “Well, this is what you should do: A, B, C” – because that obviously increases pressure. I mean, we ourselves know that in our day-to-day lives that someone tells us, “Well, have you thought about exercising a bit more and eating more healthy?” Then you're like, “Ugh.”

So what has been shown in [00:16:00] general to be more effective is so-called motivational interviewing, where you start with an open question to elicit the resources that people already have in their lives, that they have cultivated things, maybe also that give them joy, like going for a walk, or a certain type of food that they really feel nourishes them. 

There's a lot of magic in active listening. So asking that question, “Well, what gives you strength? What gives you joy? What do you really like doing, or what have you liked doing? What nourished you? What gave you strength in the past?” And then you just listen. 

When people talk about it, they, they will feel reminded of how these things gave them joy, gave them strength and they might then also talk about obstacles that they now face in implementing these things.

But it's always more helpful to give people [00:17:00] the conversational space to come up with these things by themselves, and also name the obstacles, so that they can weigh obstacles and advantages of resources they already know. And then we as humans are just so much more convinced by the things that we hear ourselves say and the conclusions that we make.

And once the person has named these things, then they own it. And people then will find ways to let these things naturally grow again in their lives. 

Nancy Volkers: Excellent. Thank you.

So my next couple of questions are about the role of clinicians. How can clinicians improve awareness and reduce stigma in their daily practice?

Dr. Rosa Michaelis: By asking. By making mood questions as routine as seizure counts. [00:18:00] When we ask, people talk. And by just naming depression as a common and treatable condition that can relieve patients. They feel seen and cared for.

Nancy Volkers: Yeah, that's a great point that, I feel like the people with epilepsy that I've spoken with have often said there are things they want to talk about, but they don't know how to bring them up. And they don't know if they'll get an answer. They don't know if it's okay to bring up.

So having it start with the clinician, I feel like gives it more of an acceptance that yes, this is normal. 

The other question is kind of the same, but what, what role can neurologists specifically play in managing depression in people with epilepsy? Since the goal is to improve quality of life and reduce seizures, and it sounds like successfully managing or working to successfully manage depression can go a long [00:19:00] way in reaching those goals.

So what can neurologists do? 

Dr. Rosa Michaelis: Given the shortage of mental health professionals, neurologists absolutely need to start the process. Screen, discuss results, initiate first-line treatment. If we wait for perfect access to psychiatry before acting, then our patients suffer in the meantime.

And it's enormously helpful when we don't have to reinvent the wheel for every single patient, by building integrated mental health care pathways locally so that responsibilities are clearly defined and established. From a patient's perspective, it actually seems best when these services are available on site, because if someone is already struggling with low drive, it can be really hard for them to access care.

[00:20:00] And it's also important to remember that psychotherapists, for example, don't need highly specialized epilepsy expertise to be effective. Standard CBT skills can already make a difference. What helps a lot is when we as neurologists make ourselves available to consult with mental health specialists if they have epilepsy-related questions.

 So I would say that the neurologist's role is both clinical and coordinating. We are here to recognize depressive symptoms early, start evidence-based treatments, and also try to make sure that there's a clear accessible path into mental health care. 

Nancy Volkers: Great. Thank you so much. Is there any other takeaways or points that you wanted to make that we haven't covered?

Dr. Rosa Michaelis: Yeah, maybe just to summarize or repeat [00:21:00] that depression in epilepsy is common and treatable, and it's part of our job to find and treat, and that often only becomes realistic when we develop and establish interdisciplinary care pathways in our own clinical settings. And when that works, in my experience, it's not only the patients who benefit, but our own professional lives are enriched as well, gaining depth, humanity, and even joy. 

Nancy Volkers: Excellent. Thank you so much for joining me. Really appreciate it. 

Dr. Rosa Michaelis: My pleasure. 

RESOURCES

NDDI-E screening tool for depression (PDF, English) 

NDDI-E screening tool for depression, Spanish – Table 3 includes two Spanish versions, one developed in Argentina and one in Spain

Herramienta de detección de depresión NDDI-E, español – La Tabla 3 incluye dos versiones en español, una desarrollada en Argentina y otra en España

ILAE clinical practice recommendations for the medical treatment of depression in adults with epilepsy (Epilepsia, 2021)

Epilepsy & Behavior special issue: Pharmacologic treatment of the common psychiatric comorbidities of epilepsy: Practical strategies