Mental health is among the many issues that can affect both children and adults living with epilepsy. While some people may experience few mental health issues, others may suffer debilitating problems of anxiety, depression, or mood disorders. It is imperative that clinicians address and treat these psychiatric symptoms early in the individual’s epilepsy journey to reduce the negative consequences they might have on the long-term quality of life. In fact, many clinicians and patients agree that treating anxiety and depression may help improve the quality of life for people with epilepsy more than reducing seizures.  

This webinar will discuss the prevalence of anxiety and depression among people with epilepsy. Viewers will learn how anxiety and depression impact people with epilepsy in different ways, and that neurologists often have multiple tools at their disposal to help alleviate these psychiatric symptoms. In some cases, the treatment of these symptoms may influence the treatment of the seizures themselves. 

The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.  

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About the Speaker:
Dr. Heidi Munger Clary is an Associate Professor and Epilepsy Fellowship Director at Wake Forest School of Medicine. She is an adult epileptologist whose research focuses on anxiety and depression in epilepsy. The overarching goal of her work is to develop and test strategies for neurology clinic-based action to close the screening, treatment, and outcome gaps for these impactful comorbidities. Dr. Munger Clary is Chair of the American Epilepsy Society Psychosocial Comorbidities Special Interest Group, Chair of the American Academy of Neurology Epilepsy Quality Measurement Workgroup, and Co-Chair of the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy’s Psychiatry Commission.

Q&A with Dr. Heidi Munger Clary

What are recommendations for dealing with anxiety and depression in non-verbal children?

So this is a great question, and this is a really challenging area because a lot of the work that we’ve been doing to try to address it has neglected this area. So, one of the things that needs to happen is we really do need a lot more focus and attention to this area. Now, one of the things that I have heard that can be very helpful in terms of tips from pediatric psychologists is really observing the behavior of the patient. Listening to the family, what is their intuition about how that person is doing? And then trying treatment approaches. I think it’s a real challenging area. Opening a dialogue with the neurologist can be a starting point. But it may really be that for individuals like this, if there’s a specialty clinic focused on neurobehavioral care or care of individuals with behavioral issues and developmental delay, that setting might address those patients’ needs even in an even more robust way. I will say for myself being a neurologist in practice, really trying to address these kinds of topics in a better way over time, we at our center, we’re lucky to have this excellent neuro behavioral clinic.

And I do find that once I run out of some options for potentially optimizing the seizure medications for behavioral effects, thinking about maybe a very commonly prescribed medication, sometimes an SSRI is worth considering. But getting those patients to the specialized care, I think right now is the best thing to do because this is not an area that the neurologists are really well equipped to start managing themselves, but starting the dialogue and getting the referrals and finding those resources in the community that are appropriate, I think, is the most important thing for it right now.

Can you share more about the correlation between hormonal issues and seizures?

I’m trying to think about how to focus it in the mental health area, but one of the things we commonly see in day-to-day epilepsy practices that sometimes seizures are related to the menstrual cycle in terms of the timing of seizures. This may also impact behavioral symptoms as well. I’m trying to think about what the best way to focus this response would be. But if one of the questions is a concern about seizures and hormones, doing some careful tracking of hormonal cycle related changes, whether it be the menstrual cycle or even treatment changes that might affect hormones and seizure frequency can be helpful. In terms of the way I alluded to hormones within the brain, potentially being related to mental health issues, that’s an area that’s primarily in the research zone right now, and doesn’t have a lot of everyday practical clinical implications yet from my perspective.

Do medical treatments for anxiety change for younger people, for teens compared to adults?

So this is an excellent question. So, there is more of a potential concern about whether SSRI, the most commonly prescribed antidepressant category, whether might be higher risk for suicidality in teens than in the adult population. There is a bit more of a regulatory warning associated with these medications in the teen years. So having said that if, for example, a teen is seeing an adult-focused neurologist, or maybe a pediatrician, there might be a bit more reluctance to prescribe. And so there may be more of a recommendation for specialty care. Having said that, SSRIs are used very commonly in teenage people. But I think the level of expertise to make sure that it’s safe and that it’s really the right thing to do is important.

There’s a lot of behavioral approaches, counseling, psychology-based approaches to anxiety management in children and in adolescents. And it seems that there’s a greater emphasis on that when we look at the literature and think about what kinds of treatment recommendations are out there. There also seems to be more psychology resources in many pediatric centers than I have seen in some adult centers. So, to answer the question, the approach may be different, talk to the neurologist and other care providers to see what they recommend. And it may be that more of a specialty-focused approach is appropriate in the pediatric age group.

So it may be that a pediatric neurologist may be more likely to recommend a referral to a pediatric psychologist or a psychiatrist to manage anxiety in either the teenage age group or younger age groups than so then some adult neurologists who might take on the management themselves. This may be evolving over time. Talk to the neurologist and find out what their comfort level is. There are a lot of pediatric centers that have really robust psychology resources. So that’s the potential silver lining to that question. There might be a resource there in a pediatric setting, more likely than an adult.

Does the person raise the issue or should they rely on the neurologist?

We wish that the neurologist would always bring this up. But I think that you can really help yourself, your loved one, your family member. If you have concerns in this area and you bring it up, it’s much more likely to be addressed. Some neurologists may address it as a routine. We know from survey data that sometimes they will only address if it’s raised by the patient. So do not be afraid to raise your concerns. It can really help lead to it being addressed. So I think it’s a great idea to bring it up as the patient.

Speaking on the patient, on behalf of the patient, somebody asked the question, how do you know when for somebody perhaps who’s non-verbal, when you should change a medication or try something else?

And in terms of the question, if we’re thinking about, is there a mental health side effect, a behavioral side effect from the medication, for example, observing behaviors and behavior changes as a medication has been added. For example, one of the medicines I listed as often good for anxiety, Clobazam, sometimes this causes agitation and behavioral problems, and it seems to be more common among intellectually disabled people. So if a new medicine is added, watching your loved one’s behavior and seeing, is something changing that makes me concerned? Bring it up with the neurologist and see. And then if it is the medication, medication could be reduced or taken away, and then you’ll find out if that was the cause.

Now, how do you tell if a medication specifically for mental health is working for your loved one? I think it would be similar to observing the behaviors that were the concern in the first place, and that led to prescribing that medication. Is that improving with the treatment? If it’s not, then it’s time to go back to the prescriber and think about what else could be tried to help.

Does it make sense for families to stay in touch with their provider more frequently as there’s a medication change?

I do think it’s a good idea, specifically, if you notice a change that is of concern. Sometimes people feel like they need to wait until the next visit to bring these kinds of issues. It’s important to know what’s the best way to work together with your neurologist. I do think though that most neurologists, if there’s a problem with the medicine, would rather hear about it sooner to be able to respond than not. But check with your neurologist as well to see what their recommended approach would be.

The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.