Interviewer: Epilepsy is one of the most common neurological diseases in the world, but many people don't know much about the condition until they or a loved one receive a diagnosis.
To help us understand the basics of epilepsy, we're joined by Dr. Amir Arain. He's a Professor and Division Chief of Epilepsy at University of Utah Health.
Dr. Arian, first of all, what is epilepsy exactly?
What is Epilepsy?
Dr. Arain: Epilepsy is a neurological condition. It's a brain disorder, like other chronic brain illnesses, second only to stroke. This is a condition where you have recurrent seizures. Seizures are symptoms of underlying conditions. Seizures are caused by different things. Patients who have epilepsy have tendency to have recurrent seizures unprovoked without any reason.
Interviewer: And how does a person know if they have epilepsy? I mean, the seizure, but what does that feel like? Are all seizures the same?
Dr. Arain: No, not all seizures are the same. There's diversity of semiology, like presentation. A majority of the time, the seizures are presented as staring off, zoning out, altered awareness, fuzzy thinking. And then about 30% of the time, you have the jerking and shaking seizures as well.
Interviewer: And that's kind of what people tend to think about when somebody has epilepsy, is that shaking seizure, but that's kind of one of the less common ones.
Dr. Arain: Exactly. I think people are aware more of generalized tonic-clonic seizure, the shaking seizures more often, and they don't know that patients can present with just staring off or absent-mindedness as a seizure.
Interviewer: And if I'm having one of those types of seizures, do I know that that's what's going on? Am I aware that something is up other than I'm just zoning out?
Dr. Arain: Sometimes they don't know. Sometimes they do. Sometimes they feel an aura or a feeling immediately before the seizure, or sometimes they realize that the time has lapsed. So that's when they can realize that something has happened.
Interviewer: So how would a person know to go and get it diagnosed?
Dr. Arain: If certainly you have any episode like this where you have fuzzy thinking or absent-mindedness and you notice there's a time lapse, I think you should at least talk to your physician.
Interviewer: So there is a time lapse.
Dr. Arain: There is.
Interviewer: You would look at the clock and then suddenly look at it again and minutes would have gone by.
Dr. Arain: Yeah. Seconds to minutes.
Common Causes of Epilepsy
Interviewer: And what are some of the common causes of epilepsy? What's causing this condition? It's a symptom of something that's going on inside of my brain.
Dr. Arain: Exactly. So 60% of the time it's a genetic cause. It runs in families. Forty percent is acquired, and acquisition could be because of a head injury. It could be from a tumor, from a stroke, infection in the brain.
Interviewer: What type of infections can cause epilepsy?
Dr. Arain: Most common is meningitis or encephalitis where you have inflammation of the brain or the coverings of it.
Interviewer: And if somebody has epilepsy, how do you diagnose it for sure?
Dr. Arain: So diagnosis is primarily clinical. History is very good evidence of the disease. Also, EEG is a test where they put wires on the head to record brain activity. That is very supplemental and helpful in aiding the diagnosis.
Treating Epilepsy with Seizure Medications
Interviewer: And when a patient is diagnosed, in your experience, what are the concerns they have then when they find out that they do have epilepsy?
Dr. Arain: So first thing is do they have to be on medication all their life? That's one. Other thing is can they drive or not? Can they have an employment? So these are the main questions, typically.
Interviewer: Those are big questions. And do they have any sort of consistent answer, or does it really vary case to case?
Dr. Arain: So it varies case to case, but majority of the patients, about 65% of patients, are controlled with seizure medication. They have to be on medicine. They can become seizure-free.
As far as driving is concerned, different states have different laws. Majority of the states here have about three months' restriction of driving. If you're seizure-free for three months, then you can restart driving.
And as far as the medication, how long they have to take it, it depends. If they become seizure-free, we typically tend to keep them on the medication for about two to five years, and then slowly taper it off.
Interviewer: So there is a possibility if one is diagnosed with epilepsy and is on the medication, that eventually you could be medication-free and seizure-free.
Dr. Arain: Exactly.
Interviewer: Oh. Did not know that. Is that a common misunderstanding or . . .?
Dr. Arain: Common misunderstanding, yeah.
Interviewer: Yeah, I thought the best that one could do was manage it. I didn't know that there was necessarily a way to cure it.
Dr. Arain: So there is some cure. An epilepsy cure is considered if you have been seizure-free for 10 years, and the last 5 years have been without the medication.
Beyond Medication: Alternative Treatment Options for Epilepsy
Interviewer: And is medication the main treatment option, or are there other treatment options that you can explore?
Dr. Arain: So, as I mentioned, about 65% of patients are controlled with seizure medications. About 35% are not. So they continue to have seizures besides being on anti-seizure medications. Those are the patients who we consider for other modalities as a treatment. And main modality for treatment is epilepsy surgery.
Interviewer: And how effective is epilepsy surgery?
Dr. Arain: So if a person is a good surgical candidate . . . So for that, we evaluate by certain tests to make sure that the person has one single focus where the seizure is coming from in the brain, and it doesn't have any eloquence, meaning that area doesn't have motor function, memory function, or language function. Then the surgeon can go in and remove that area without any untoward defects. And the seizure freedom rate is about 70% to 75%.
Interviewer: And even if surgery is not successful, does it have the opportunity to even reduce the number of seizures . . .
Dr. Arain: Certainly.
Interviewer: . . . in combination with the medication?
Dr. Arain: Exactly.
Interviewer: So even though it might not be considered a success, it could change somebody's life.
Dr. Arain: Yes. It certainly improves your seizures. And there is evidence that previous medications that have failed can be retried after surgery and they can be effective.
Living with Epilepsy: Embracing Normalcy and Overcoming Stigma
Interviewer: So after a person develops epilepsy and they have a treatment plan, what does their life look like after that?
Dr. Arain: I would say life is quite normal. People live normal, healthy life with epilepsy if they take their medications. Initially, after the seizure, they may have restriction for three to six months of not driving.
Because there are still stigmas associated with epilepsy in society, patients get fired from their jobs even though they should not be, so that can be affected. People apply for disability in such a situation. Otherwise, they can live a normal life.
Interviewer: Are there any resources or support groups that you can recommend for people that are living with epilepsy?
Dr. Arain: Yeah, the big support group everywhere is the Epilepsy Foundation, and Utah has its own chapter. They're a good support group. They help also in creating support group sessions. They have other resources as well that they can help the patients. So Epilepsy Foundation is a good source.
The Potential Dangers of Untreated Epilepsy
Interviewer: And untreated, can epilepsy potentially be dangerous?
Dr. Arain: Certainly. Epilepsy is a serious condition. People lose their lives because of that, because of the accidents that can happen if they're not following the driving restrictions. And there is an entity called Sudden Death in Epilepsy where people die in their sleep if they're not taking their seizure medications. So take epilepsy seriously. Please take your medications.
Interviewer: If somebody believes they have epilepsy, what should they do next?
Dr. Arain: So please talk to your physician if you are having any episodes, especially where you have absent-mindedness or obvious seizures, jerking seizures. Talk to your doctor and see what other options are available. If the seizures are not controlled after trying two seizure medications, please come to an epilepsy center.
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