Episode Transcript
Interviewer: Getting a proper diagnosis and effective treatment for epilepsy can be a difficult process since it's rare that a seizure is probably going to happen while you're in the doctor's office. For patients struggling to find answers about their condition, long-term epilepsy monitoring might be able to give answers that will help them get control over their seizures.
To help us better understand long-term epilepsy monitoring, we're talking with Dr. Amir Arain. He's a neurologist who specializes in caring for people with epilepsy. He's also a professor in the Department of Neurology at University of Utah Health.
Purpose and Patients of Long-Term Epilepsy Monitoring
Dr. Arain, what type of patient is this type of monitoring for?
Dr. Arain: It is for the patients who we suspect have epilepsy or mimickers of epilepsy. We bring them in to admit them for three to five days. During that time, we take them off the seizure medication. The idea is to provoke an episode or seizure so we can confirm the diagnosis of epilepsy.
Benefits of Epilepsy Monitoring Units over Outpatient EEGs
Interviewer: So without an epilepsy monitoring unit, how would a patient get an epilepsy diagnosis, and how does the epilepsy monitoring unit then make that easier or give you more information to help the patient with their epilepsy?
Dr. Arain: As I mentioned, the diagnosis of epilepsy is more clinical. Certainly, the EEG, the electroencephalography where they put wires on the head to record brain activity, helps in confirming the diagnosis.
Outpatient EEG has limited utility. It may turn out to be normal in several patients because outpatient EEG is done only for 20 minutes to maybe an hour.
So on the other hand, epilepsy monitoring unit, we admit patients for three to seven days and monitor them continuously. And during that time, this is a controlled environment, always being monitored by nurses and EEG techs.
We take them off the seizure medicines to provoke a seizure so we can see what's the nature of the seizure, whether it is epilepsy or a mimicker of epilepsy. And if it is epilepsy, we can also find out if it is focal epilepsy or generalized epilepsy. And depending on those, we can consider future modalities for treatment.
Interviewer: So at the epilepsy monitoring unit, not only do you have the ability to detect if the patient does have epilepsy, because, in the 20 minutes that they're at an EEG elsewhere, they might not have a seizure. We've all had that frustration of not being able to get the thing that we want diagnosed, diagnosed. And it also can give you more information to help the patient achieve a more normal life after epilepsy.
Dr. Arain: Exactly. Certainly, in patients where the patient is suffering from seizures in clinic, and we have done EEGs and several times EEGs come out normal, the patient is not convinced that they are having seizures. So we have to bring them in to confirm the diagnosis by recording an episode. And that also helps in further changing the treatment options.
Role of Epilepsy Monitoring in Surgical Considerations
Interviewer: Are there other services that an epilepsy monitoring unit offers patients that they're not able to easily get elsewhere?
Dr. Arain: Yeah. Another thing is that if we're considering them for epilepsy surgery, we need an epilepsy monitoring unit. The patient is admitted, so we can pinpoint where exactly the seizure focus is. And at times we cannot pinpoint the seizure focus. And then a surgeon usually puts electrodes directly inside the brain and we do EMU monitoring again to confirm it.
Duration of Stay and Seizure Monitoring
Interviewer: And how long is a typical stay in an epilepsy monitoring unit?
Dr. Arain: About three to seven days. It depends. If you get seizures within three or four days, then the patient goes home. Otherwise, we can extend it to up to seven days.
Interviewer: And is one seizure enough to get the information you need?
Dr. Arain: So just for the diagnosis confirmation, one seizure is enough to know what kind of seizures these are or whether this is epilepsy or not epilepsy. But for epilepsy surgery monitoring or epilepsy surgical consideration, we need at least four to six seizures.
Interviewer: And how does this information help the surgeon then? What kind of outcomes?
Dr. Arain: So during that time when we record four to six seizures, we confirm and pinpoint where exactly the seizure focus is. And then in addition to other outpatient modalities that we do in preparation for epilepsy surgery, EMU is very helpful, certainly. With every four admissions in the epilepsy monitoring unit, we get one epilepsy surgery.
Coordination with Healthcare Providers
Interviewer: How does an epilepsy monitoring unit such as this work with the patient's healthcare providers like primary care physicians or neurologists to coordinate that care for patients?
Dr. Arain: Often they refer the patient to an epileptologist here. An epileptologist sees the patient and then admits them to the epilepsy monitoring unit. After the diagnosis is made, we send a formal report to the patient's primary care provider and general neurologist. This way, they know what's going on and what are the next steps they're going to take.
Repeat Admissions and Diagnostic Challenges
Interviewer: After somebody comes to an epilepsy monitoring unit, and says they are a distance away since there aren't many of them in the United States and likely somebody might have to travel, are they going to have to return?
Dr. Arain: So most of the time when they come and get admitted, we are able to confirm the diagnosis or record seizures. I would say 80% to 85% of the time we are able to record seizures. But 15% of the time it happens that during the whole stay, they may not have a seizure. Often, in that case, we have to repeat the admission.
Driving Restrictions and Seizure Provocation
Interviewer: So one concern that a patient might have is because they're going to have seizures in the monitoring unit that will reset their driving restrictions. Is that the case or not?
Dr. Arain: Typically, when they have seizures, they are not allowed to drive for about three to six months in different states. But the seizures that are recorded in the epilepsy monitoring unit, are provoked. And they are not counted against driving.
Post-Monitoring Life and Treatment
Interviewer: And for individuals that come to a long-term monitoring unit and get the diagnosis and they find out the type of epilepsy they have, and then the treatment is decided, whether it's medication or surgery, what does their life look like afterward?
Dr. Arain: I think it's life as usual, as before the epilepsy monitoring unit. They go home and after the monitoring is done, we put them back on the seizure medications. They go home and then follow up in the clinic.
Success Rates and Comparison with Other Diagnostic Methods
Interviewer: And what's the rate of success for a patient that goes to a unit such as this versus that perhaps might have gotten their diagnosis and treatment elsewhere?
Dr. Arain: I would say it's very high. At least success for recording a seizure is about 80% to 85% likely that we will be recording the seizure, and we'll confirm the diagnosis.
Interviewer: When a patient visits a long-term monitoring unit, do they tend to be somewhat frustrated at this point in their journey?
Dr. Arain: Certainly. Some patients are frustrated because they have been going to doctor to doctor in order to get a diagnosis. Sometimes it is not clear that these are seizures, and they end up going to a cardiologist thinking this is a cardiac-related episode. Sometimes they go to a psychiatrist thinking this is a psychiatric condition. And so they are frustrated.
They have been all around and not getting a concrete answer. So sometimes they are frustrated, but they do feel better once they get a diagnosis in the epilepsy monitoring unit.
Contact and Referral Information
Interviewer: Final thought for somebody listening right now? What would you say to an individual who's thinking about making an appointment or asking for a referral to the clinic?
Dr. Arain: So epilepsy is a common neurological condition, second only to stroke. If one is having episodes like this, which are not clear, make an appointment with your primary care doctor and maybe a general neurologist. And if they don't have an answer for you, come to an epilepsy center so we can get to the bottom of it.
Interviewer: Can you be contacted directly, or do you need to have a doctor's referral?
Dr. Arain: We need to have a doctor's referral in most cases, but sometimes you can just directly contact us through our website.