What to Know About Telehealth for Epilepsy

Epilepsy is a chronic condition with varied effects—it can be stable with consistent medical therapy, or it may involve frequent treatment adjustments. If you or your child has epilepsy, you can use telehealth for some of your visits to optimize seizure control.

Since the COVID-19 pandemic started, medical offices have implemented many important precautions to maximize infection control and safety. Still, if you are more comfortable staying home, you can use telehealth for some of your epilepsy care. 

When to Use Telehealth for Epilepsy 

There are several aspects of epilepsy care that lend themselves to telehealth. You and your healthcare provider can talk about which situations you can address via telehealth and which situations require an in-person visit.

• Diagnosis: The initial diagnosis of epilepsy involves several assessments, including your medical history, a description of the episodes, your healthcare provider’s observation of episodes if possible, and diagnostic tests, such as electroencephalogram (EEG) and magnetic resonance imaging (MRI). Some assessments can involve telehealth.
• Home monitoring: Prolonged EEG monitoring is used in the diagnostic evaluation of certain types of seizures. Sometimes this testing is done in an epilepsy testing center, and sometimes it is done with an EEG device that your healthcare provider sends home to you. Epilepsy monitoring may involve accompanying video as well.
• Video evaluation of episodes: You may notice that some of your episodes have specific features, occur at certain times of the day, or are associated with certain triggers. You or someone you live with can record episodes when they occur so you can show your healthcare provider during a telehealth visit. 
• Medication management: If you need your medication dose adjusted due to symptoms or side effects or because your levels are too high or too low, your healthcare provider can often decide about these changes via a telehealth visit. Your healthcare provider can also explain how you should take your new medications during your telehealth visit. 

When to Be Seen in Person

When you have epilepsy, some aspects of your care cannot be adequately managed with a telehealth visit. Several situations require prompt in-person medical evaluation and intervention. 

You need to be seen in person in for:

• A skin rash: This can be a sign of a serious, potentially life-threatening reaction to epilepsy medication. 
• A prolonged seizure: A seizure that does not resolve on its own could be status epilepticus, a life-threatening seizure that only resolves with emergency seizure medication. 
• A new type of seizure: If you have a different type of seizure than what you are used to, it could indicate an illness, a change in your condition, or a medication side effect. This may require in-person evaluation and management.
• Loss of consciousness: Seizures associated with loss of consciousness may require intervention, such as respiratory support. 
• Physical injury: Seizures can result in traumatic injuries that should be evaluated and treated in person. 
• Blood tests: Sometimes, the levels of anti-epilepsy drugs (AEDs) can be measured in the blood. You need to get blood tests in person, and your healthcare provider may use these levels to monitor changes and make medication dosing adjustments. 
• Epilepsy surgery: If you have refractory epilepsy (not well controlled with medication), surgery, such as vagal nerve stimulation implantation or responsive neurostimulation system (RNS), could be considered. Some aspects of the surgical evaluation, the surgical procedure, recovery, and most of the follow-up care must be done in person. 

Benefits and Challenges 

Research has shown that telehealth provides a number of advantages in epilepsy care. These include:

• Scheduling: If you need frequent medical visits, using telehealth for some of them can make scheduling easier. This is an advantage that can minimize time missed from work or school.
• Travel: Travel to and from appointments can be time-consuming, especially if you see a specialist who is located far from your home. Also, some people with epilepsy are not allowed to drive and therefore must use other travel modes.
• Video sharing: You may have infrequent seizures or episodes that are hard to describe to your healthcare provider. Recording your episodes and sending them to your healthcare provider can be facilitated via a telehealth platform. 

Challenges 

Among the challenges of using telehealth for epilepsy is that it involves the use of electronic devices. Research shows that patients who have epilepsy are less likely to own these devices than the general population.

Additionally, some patients who have epilepsy express concerns about privacy in the context of telehealth.

How to Prepare for a Telehealth Visit for Epilepsy 

Before you decide if you will be using telehealth for some of your epilepsy care, you need to discuss this option with your healthcare provider. Telehealth may or may not be a good option for you.

For example, if you are recovering from epilepsy surgery and require comprehensive neurological examinations for your follow-up care, your healthcare provider might suggest that you postpone telehealth until your condition stabilizes. However, if your seizures are stable and you require minimal medication dose adjustments, a virtual visit may be suggested.

You also need to determine whether your healthcare professionals have telehealth capability or if you need to find another provider to accommodate you via telehealth.

Preparation for a telehealth visit for epilepsy requires ensuring that you have access to a device that you can use to communicate with your healthcare provider or other members of your healthcare team.

In addition to being able to discuss your medical care via videoconferencing, you may also need to be able to video-record some of your episodes. This can require another step of preparation, in terms of figuring out how to send a video to your medical team.

Before your visit, you can prepare by:

• Keeping a diary, calendar, or record of the type, frequency, duration, and triggers of seizures that you are having
• Having yourself or someone you trust video-record your episodes and sending these videos to your healthcare team
• Monitoring yourself for symptoms of medication side effects
• Getting any lab tests or imaging tests that your healthcare provider has ordered so results will be ready in time for your telehealth visit
• Using an epilepsy monitoring device that is provided to you as instructed by your medical team, such as the Embrace watch and others

What Happens During the Visit 

During your visit, you will be able to discuss your symptoms, any changes in your seizure pattern, and any other concerns you may have. Your healthcare provider will also ask questions about your medical condition that you might not have mentioned.

You may be asked to demonstrate certain actions, such as eye movements, arm coordination, or walking.

In some circumstances, you might need to demonstrate actions that could precipitate a seizure. For example, evaluation of absence seizures, which can be triggered by hyperventilation (breathing fast), has been shown effective in the telehealth setting.

This type of seizure is not usually dangerous, so precipitating it during a telehealth medical visit is an acceptable means of diagnosis—whereas precipitating other types of seizures is not considered safe.

If you have been using an epilepsy monitoring device or if you have taken a video of your episodes, your healthcare provider will look at them either before or during your visit as part of your assessment.

Additionally, your healthcare provider will discuss the results of testing, such as blood tests. If needed, you will have refills or changes made to your AEDs and follow-up visits scheduled.

Summary

Epilepsy is usually a long-term condition that requires chronic management. You can combine telehealth with in-person medical care to optimize seizure control and reduce the risk of side effects from your medication.

You need to make sure that you know what circumstances necessitate urgent attention and that you or someone you live with knows how to get emergency medical care if you need it.