Experiencing or witnessing a focal seizure can be a frightening experience. Focal seizures can happen out of the blue, and a person may be disoriented or confused in the aftermath. Preparing yourself, and those around you, for the possibility of seizures can help you stay safe.
Mary Ray, co-founder of MyEpilepsyTeam, spoke with Dr. Rodney A. Radtke, professor of neurology at Duke University School of Medicine, to better understand how to prepare for and manage focal seizures when they do occur. Dr. Radtke is a former director of the Duke Comprehensive Epilepsy Center. His research focuses on the genetic aspects of epilepsy.
The conversation has been edited and condensed for clarity.
Focal seizures begin in a small area of the brain and then spread to create the symptoms. The older terminology called them partial seizures. There are three categories, or types, of focal seizures.
There's the focal aware seizure [focal onset aware seizure] which used to be called a simple partial seizure. It could be a tingling. It could be a jerking. It could be a feeling in your stomach, but you're aware of it. You can talk. You can interact with your environment.
The next seizure type is focal with impaired awareness. The older term for that would be complex partial seizure. Here the individual progresses to where they don't interact with the environment normally. They may talk, they may look, they may do things, but they're not aware of what they're doing. And when the event is over, they're almost always amnestic.
The third type is a focal seizure that progresses to bilateral tonic-clonic activity or a generalized convulsive seizure. It may start with a focal aware seizure that then progresses into the focal seizure with impaired awareness and then progresses into the tonic-clonic seizure. The symptoms that manifest are dependent on where in the brain the seizure starts and then how far or how fast it spreads.
Many patients with epilepsy are worried that the seizures are harming their brain. There isn't clear damage to the brain in most individuals. There are exceptions to that rule, particularly if you have a lot of hard, convulsive tonic-clonic seizures. As a general rule though, I'm not worried about that seizure harming your brain. I'm much more worried about that seizure impacting your quality of life or your safety.
For the most part, seizures happen without cause and you're unable to predict it. The three [triggers] that we hear most commonly are excessive alcohol, sleep deprivation, and excessive stress.
People with epilepsy have an increased incidence of anxiety. Does anxiety cause a seizure? No. It can contribute. Anxiety may contribute a little bit to your seizure risk, but it's really not a precipitant. [Excessive alcohol, sleep deprivation, and excessive stress] can increase the risk of having a seizure. They don't cause epilepsy, but they may lessen the control or increase the risk of having a breakthrough seizure.
It is rare for somebody to have a truly triggered seizure where something happens in their environment and it actually causes the seizure.
When you have epilepsy, you're very motivated to try to do things to improve seizure control. There are certainly people who have changed their lifestyle, changed their sleep patterns, [reduced] stress, [avoided] excessive alcohol.
It is not clear that diet impacts on seizure risk. It's not clear whether exercise or physical conditioning impacts on seizure risk. The way [diet and exercise] may impact on overall health [and] mental health, certainly could potentially impact [seizure risk]. But there's really not a tight association between what I eat and my risk for seizures or my physical activity and risk for seizures.
You certainly can also seek guidance from your doctor about things you can do to improve the quality of your sleep. There's always sleep hygiene. There are medicines that can help people sleep, and there's also something called cognitive behavioral therapy for insomnia — which is actually more effective than the medicines and it empowers the individual to sleep better.
We have about 25 different antiseizure medicines that we can use to treat focal seizures. The majority of people with focal seizures will be controlled with medicine, but there's a subset that won't. [For] that subset, we look at other treatment options.
Sometimes we look at epilepsy surgery, where we're trying to identify where the seizures come from and perform surgery to remove the scar or abnormal area of the brain that may be giving rise to the seizures. There's also something called neuromodulation which are basically stimulators — the vagus nerve stimulator, deep brain stimulator, responsive neurostimulation — which are devices that stimulate the nervous system that can further increase seizure control. But the mainstay of the great majority of people with focal seizures is the use of antiseizure medicine.
When someone presents with something that may be a focal seizure, it is important to sort out what it represents. We do tests, a brain MRI scan, and an EEG or electroencephalogram, trying to give us information as to whether the event in question is likely a seizure. But the most important bit of information is history obtained from the patient and history obtained from the observer. And oftentimes, it's the observer history that provides the most conclusive evidence that this represented an epileptic seizure.
We do want to diagnose epilepsy early, and the main reason for that is so that we can treat you to prevent additional seizures, but we also want to get it right. And so it's more important that we understand and be confident we know what we're dealing with, and then initiate treatment and hopefully effectively control the events.
I can't tell you how helpful home videos or cellphone videos have been in understanding unexplained events [in undiagnosed people]. And then the individual or family member takes a cellphone video, sends it to us in an email, and we're able to understand what transpired. It markedly increases our ability to be confident [in a diagnosis of epilepsy]. We know whether we're dealing with epilepsy or not.
[Some] people with focal epilepsy will have a warning sign before they lose awareness. The others will simply lose awareness and the lights go out and then they're unaware of their surroundings.
[Individuals who have a warning sign experience] an aura where they have a sensation that, “Oh, my seizure is coming on.” And what that really is, it's the focal aware seizure before it progresses into the focal seizure with impaired awareness.
The patient may experience a rising feeling in their stomach, or they'll suddenly be fearful without cause, or they'll have the vague sensation that they've had before, and they know that it's leading to a seizure. That's basically the focal aware seizure starting, and then it progresses into the harder seizure which the patient may call their seizure. But even the aura is a seizure.
When you have epilepsy, obviously one of the most worrisome things is the danger you may be in during a seizure. A small number of people will have that warning, that focal aware seizure or that aura for 30 seconds or 60 seconds. And they obviously can pull over if they're driving, get to a place of safety, lay down, try to prevent the risk of injury or harm. But that's really only a small percentage of the people with focal seizures.
Most people just get a few seconds of warning and maybe they'll be able to call their partner to tell them that it's happening, but then it quickly progresses to loss of awareness. It's difficult for the individual with epilepsy to protect themselves. The seizures often happen without warning. They happen in an unpredictable fashion. And that's part of what makes it so disabling.
When an individual does go in a seizure, they for the most part lose the ability to communicate. And then, frequently after a seizure, they'll be confused for a period of time and may not communicate effectively. And so many patients, particularly those without complete control or with uncontrolled seizures, do get a medical alert bracelet and wear it so that the individual who discovers them on the floor can potentially identify that they do have epilepsy.
If you're around somebody who has a seizure, the important thing is to protect them. You keep them from falling out of the chair. You keep them from hitting their head on the floor. You do not try to restrain them. You don't try to put anything in their mouth. You allow the seizure to run its course. And then once the seizure’s over, you roll them on their side, you let any blood or drool come out of their mouth, and then you let them wake up.
You stay with them until the individual with the seizure gets their wits about them and you feel safe allowing them to be alone, or escort them to the emergency room, or whatever may be appropriate. Many times, individuals with epilepsy are confused afterwards. They may want to get up and walk around. Don't try to restrain them. Let them do what they want to do as long as it doesn't put them in harm's way. Allow them to walk around the house, but don't let them fall down the stairs, and you let them regain their normal degree of alertness.
It really is those in the environment that provide the safety. There's the post-seizure phase where they're confused and disoriented. They do not have judgment or the insight to [protect] their safety.
What I frequently hear from an individual with epilepsy and their family is, “What should we do when they have a seizure? Do we need to call the emergency response people? Do we need to take them to the emergency room?”
There are three things that would make me want you to call an ambulance or to seek emergency medical help [for someone with an established diagnosis of epilepsy]:
If you have back-to-back seizures, that's worrisome. [If] you're worried about the third, fourth, and fifth one, you should call the emergency personnel.
The second one is if they go into that hard, convulsive seizure, and it lasts five minutes or more. I like the observers to time the event with a clock. And if it gets more than five minutes, then you call the ambulance.
The third thing is if the individual, during the seizure, falls, hits their head, and you want them evaluated for their head injury, call the ambulance.
It's really difficult for an individual who's going to have a seizure now to warn their environment that something's going to happen. More importantly, in many cases, is being open about having seizures. Telling your co-workers, telling your school friends so that they're part of the solution, if [you have] a seizure. Maybe help them understand how to help take care of somebody who's having a seizure and also maybe prevent the need for summoning emergency medical personnel or carrying the individual to the emergency room if there's someone in the environment that knows the story and knows the individual's history.
When someone has been diagnosed with focal epilepsy, it's a very disturbing time. One of the worst things about epilepsy is the loss of control. And so, the best way to take control of your life is to be compliant with the instructions and the treatments that are initiated by your caregivers. And medicine is at the center of that. The great majority, 70 percent of the people with new onset of focal seizures, will come under complete control and can continue to live a full life and can work and marry and have children and do all the things that one expects of themself.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsy, more than 93,000 members come together to ask questions, give advice, and share their stories with others who understand life with seizures.
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