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Post-Stroke Seizures and Epilepsy: What Stroke Survivors Need to Know
By Angie Read, Founder of Stroke Sisters
Stroke recovery comes with a long list of things we expect to hear about: weakness, speech problems, fatigue, balance issues, memory changes and emotional challenges.
Seizures? Not so much.
So when a stroke survivor experiences one, sometimes weeks, months or even years after her stroke, it can be frightening and confusing. It can also immediately raise another scary question: Does this mean I have epilepsy?
Not necessarily.
Seizures are a recognized complication of stroke, but having a seizure after a stroke does not automatically mean you have epilepsy. Understanding the difference, knowing what a seizure can actually look and feel like and knowing when to get help can make this unexpected part of stroke recovery a little less overwhelming.
Why Can a Stroke Cause a Seizure?
A stroke injures brain tissue. Whether the stroke is caused by a blocked blood vessel (ischemic stroke) or bleeding in or around the brain (hemorrhagic stroke), that injury can disrupt the brain’s normal electrical activity.
A seizure happens when there is a sudden burst of abnormal electrical activity in the brain.
Most stroke survivors will never have a seizure, but they are a known complication of stroke. According to the American Stroke Association, seizures are more likely after a severe stroke, a hemorrhagic stroke, or when the stroke affects the cerebral cortex, the outer layer of the brain.
Early vs. Late Seizures After Stroke
One important distinction is when the seizure occurs.
Post-stroke seizures are commonly divided into two categories:
- Early seizures: Occur within the first seven days after a stroke and are considered acute symptomatic seizures associated with the immediate brain injury.
- Late seizures: Occur more than seven days after the stroke and are considered unprovoked seizures, with a greater risk of recurrence.
This distinction matters because a seizure that happens during the acute phase of a stroke doesn’t necessarily mean someone will continue having seizures.
A seizure that occurs later, after the immediate effects of the stroke have stabilized, may indicate that the injured area of the brain has developed a lasting tendency to generate seizures.
And yes, a late seizure really can happen months or even years after a stroke.
Stroke Sisters admin and stroke survivor Megan Thomas experienced her first known seizure about a year after her stroke. It happened while she was sleeping.
“I just woke up and EMS was in my room,” she recalls.
Her second known seizure was very different. This time, Megan remembers feeling a buzzing sensation in her head before losing consciousness and falling face-first from her chair, breaking her nose.
Her experience is an important reminder that seizures don’t always happen immediately after a stroke, and they don’t always look the way we expect them to.
Does a Post-Stroke Seizure Mean You Have Epilepsy?
No.
A seizure is an event. Epilepsy describes an ongoing tendency to have unprovoked seizures.
According to the International League Against Epilepsy (ILAE), epilepsy may be diagnosed after two unprovoked seizures occurring more than 24 hours apart. It can also sometimes be diagnosed after one unprovoked seizure if a person has a sufficiently high risk of having another seizure.
That distinction can be particularly important after a brain injury such as stroke.
An early seizure triggered by the acute effects of a stroke may never happen again. In that situation, a person would not necessarily be diagnosed with epilepsy.
Late seizures are different because they have a greater likelihood of recurring. Depending on the circumstances and an individual’s risk of another seizure, a neurologist may diagnose post-stroke epilepsy even after a single late, unprovoked seizure.
This is one reason it’s important to see a neurologist after any suspected seizure rather than trying to determine on your own what happened.
Megan also strongly recommends seeking out an epileptologist, a neurologist who specializes specifically in diagnosing and treating epilepsy, particularly if seizures continue or the diagnosis or treatment plan isn’t clear.
What Does a Seizure Really Look Like?
When most of us picture a seizure, we probably imagine what we’ve seen on television: someone suddenly collapsing, losing consciousness and having violent, uncontrollable full-body movements.
That can happen.
But Megan wanted us to make one thing especially clear: real-life seizures can look nothing like what we see on TV.
The National Institute of Neurological Disorders and Stroke (NINDS) explains that seizures fall into different categories, including focal seizures, which begin in one area of the brain, and generalized seizures, which involve both sides of the brain.
A seizure might involve:
- Jerking or twitching of one arm, leg or side of the face
- Sudden stiffening
- Staring and being temporarily unresponsive
- Unusual sensations, smells or tastes
- Tingling or numbness
- Sudden confusion
- Repetitive movements such as lip smacking or picking at clothing
- Difficulty speaking
- Changes in awareness or loss of awareness
- Full-body stiffening and shaking
Some focal seizures can spread to both sides of the brain and cause loss of consciousness and convulsions.
For Megan, the experience can be much more internal.
“It’s like my brain has a control board, but someone pours water on it,” she says.
“I can feel my brain malfunctioning.”
She says it doesn’t hurt. Instead, “it feels like everything is spinning.”
That kind of description is important because a survivor may be experiencing abnormal sensations or changes in awareness without the dramatic shaking many people associate with a seizure. Focal seizures can cause sensory changes, unusual feelings, repetitive behaviors and changes in consciousness, sometimes without the person completely losing consciousness.
This variety is also part of what makes post-stroke seizures tricky. Some seizure symptoms can be confused with other neurological conditions.
New or sudden neurological symptoms should never simply be assumed to be a seizure, especially in someone with a history of stroke. If symptoms could indicate another stroke, seek emergency medical care.
What Should You Do if Someone Has a Seizure?
Seeing someone have a seizure is scary, but there are a few basic things you can do to help keep her safe.
According to seizure first-aid guidance from the American Stroke Association, you should stay with the person, protect her from nearby objects that could cause injury, cushion her head and loosen tight clothing around her neck. If appropriate, turning her onto her side can help keep her airway clear.
During a seizure: Do not hold her down and do not put anything in her mouth. Time the seizure if you can. That information can be very helpful for emergency responders and doctors.
Call 911 if a convulsive seizure lasts five minutes or longer, another seizure begins before the person recovers, she has trouble breathing or waking afterward, or she is injured. If this is someone’s first suspected seizure, she should also receive prompt medical evaluation.
The Epilepsy Foundation also offers seizure-specific first-aid information, including guidance for different types of seizures.
And if you’re unsure whether you’re seeing another stroke or a seizure, call 911. Don’t try to figure it out at home.
How Are Post-Stroke Seizures Diagnosed?
A neurologist will want to know exactly what happened before, during and after the episode. If someone witnessed it, her description can be extremely helpful.
Testing may include an EEG (electroencephalogram), which measures electrical activity in the brain, as well as brain imaging and blood tests depending on the circumstances.
Doctors also consider the location and type of stroke, when the suspected seizure occurred and whether something else could explain the symptoms.
Sometimes the answer isn’t immediately obvious.
If seizures are recurring, difficult to control or difficult to diagnose, an epileptologist may provide additional expertise. The Epilepsy Foundation also provides information about epilepsy specialists and epilepsy centers for people who need more specialized care.
How Are Post-Stroke Seizures and Epilepsy Treated?
When treatment is needed, post-stroke epilepsy can often be managed with anti-seizure medication. The American Stroke Association notes that stroke-related epilepsy can often be controlled with anti-seizure medicines.
For Megan, medication has made a significant difference. With the help of anti-seizure medication, she has now been seizure-free for more than a year.
That doesn’t mean the same medication or treatment will work for everyone. Treatment is individualized based on factors including the type of seizures, other medications, possible side effects and a person’s overall health.
Anti-seizure medication also isn’t routinely prescribed to every stroke survivor simply to prevent a seizure that has never occurred. Treatment decisions after an actual seizure depend on factors such as when the seizure occurred, the likelihood of recurrence, stroke location and severity, and the risks and benefits of medication.
If you’re prescribed an anti-seizure medication, don’t stop taking it or change the dose without talking with your healthcare provider.
Living With the Fear of Another Seizure
There’s another part of this that doesn’t always get enough attention: the emotional impact.
After a stroke, many of us already know what it’s like to wonder whether every strange sensation means something is wrong again. Adding a seizure to the equation can make that hyperawareness even worse.
You may worry about being alone. Driving. Taking a shower. Going back to work. Traveling. Exercising. Or simply wondering, What if it happens again?
Megan knows that fear firsthand. But something she told me really stood out:
“Crazy to think that I’m no longer scared of epilepsy even though it’s still there.”
I think that says a lot about what can happen when we begin to understand something that once terrified us.
The epilepsy didn’t magically disappear. Megan learned more about what was happening in her brain, found the right medical care and learned how to live with it. And today, with the help of medication, she has gone more than a year without a seizure.
A seizure or epilepsy diagnosis doesn’t necessarily mean giving up your independence.
Talk with your neurologist about what activities are safe for you and whether you need temporary precautions. Driving restrictions after a seizure vary by state, so it’s important to understand the rules where you live and follow your healthcare provider’s recommendations.
It may also help to keep a record of any unusual episodes or symptoms and note what was happening beforehand. If you’ve been diagnosed with epilepsy, your healthcare team may also recommend identifying factors that seem to make seizures more likely, such as missed medication or lack of sleep.
The goal isn’t to spend your life waiting for another seizure. It’s to understand your individual risk, have a plan and, hopefully, get to a place where the fear doesn’t control your life.
One More Thing Stroke Survivors Should Know
Stroke recovery rarely follows a straight line, and sometimes new issues appear long after we think we’ve figured out our “new normal.”
A seizure after stroke can be frightening. It can feel like one more thing your brain has thrown at you when you’ve already dealt with enough.
But a post-stroke seizure does not automatically mean epilepsy, and post-stroke epilepsy can often be treated and managed.
Megan’s experience is a good reminder of something else: seizures don’t always look like seizures.
If something happens that you think could have been a seizure, tell your neurologist. If possible, write down exactly what happened, how long it lasted and how you felt before and afterward. If someone else witnessed the episode, ask her to write down what she saw too.
And if you’re having ongoing seizures or struggling to get answers, ask whether seeing an epileptologist might be appropriate for you.
Most importantly: When something is sudden, severe or looks anything like another stroke, don’t wait to see whether it passes. Call 911.
More Stroke Sisters Resources
You may also find these Stroke Sisters articles helpful:
Trusted Resources for Post-Stroke Seizures and Epilepsy
Information about seizures after stroke, evaluation and treatment conversations with a healthcare team.
An overview of physical and neurological complications that may occur during stroke recovery.
Educational information about seizure types, epilepsy and neurological evaluation.
Practical seizure first-aid guidance, including what to do and what not to do during an episode.
The clinical definition used to distinguish epilepsy from a single seizure event.
Medical disclaimer: Stroke Sisters is not a medical provider. This article is for educational purposes only and is not a substitute for medical advice, diagnosis or treatment. Always talk with your healthcare provider about your individual situation. If you believe you or someone else may be having a stroke or another medical emergency, call 911 or your local emergency number.