People with epilepsy, a condition characterized by seizures (also known as convulsions), commonly experience changes in memory and cognition. Cognition is the process of thinking, reasoning, and remembering.

One type of epilepsy in particular, called temporal lobe epilepsy, has been linked to memory loss due to its effects on a brain structure called the hippocampus. The type of memory loss may vary. For example, people may forget about appointments or taking medication. Others may remember the distant past but have trouble remembering what happened last week.

So how, exactly, does epilepsy affect memory, and is there anything people can do about it?

What Types of Seizures Affect Memory?

Temporal lobe seizures are most closely associated with memory loss or cognition problems. This is because the temporal lobe is the home of the hippocampus, the part of the brain responsible for creating and storing new memories. However, according to the Epilepsy Society, any type of seizure has the potential to cause memory problems. If a person tends to have focal seizures (seizures that only affect part of the brain), the effect of the seizures will vary depending on where in the brain the seizures happen. If these focal seizures do not originate in or near the hippocampus, they have less of a chance of affecting memory. The frontal lobe is also important for memory, and damage to this area may result in memory impairment.

Generalized seizures, which affect both halves (or hemispheres) of the brain, can also affect memory. According to the Epilepsy Foundation, individuals who have mostly primary generalized seizures (such as absence, myoclonic, or tonic-clonic seizures) are less likely to have memory issues than those who have partial seizures (especially where the frontal or temporal lobes are involved).

The Hippocampus and Memory

The hippocampus is a small curved structure of the brain that lies deep inside the temporal lobe (the part of the brain on either side of the head, behind the ears). It is responsible for certain types of memory and learning. Specifically, the hippocampus transforms short-term memories into long-term memories. This process is called memory consolidation. Seizures that start in the hippocampus (or spread to it) can cause problems with memory.

The hippocampus also helps with remembering (a process known as memory recall or retrieval). When a person tries to recall certain types of memory, the hippocampus helps to retrieve the information from the brain’s cortex to enter it into an active state in the person’s mind. This is why damage to this region can potentially impair the details of past memories.

Because seizures can permanently affect the cells in the hippocampus, memory loss can become permanent.

Declarative Memory and Epilepsy

The memories most frequently affected by seizures are declarative memories. Declarative memories are of particular facts or events. These are further broken down into episodic memories (events from a person’s life) and semantic memories (facts or general knowledge). Research has shown that only episodic memory is affected by temporal lobe epilepsy and semantic memory is not. People will be more likely to forget events from their past but will be more likely to remember general information about the world. Verbal memory deficits in a laboratory setting have also been noted in individuals with epilepsy. Children with epilepsy are also susceptible to memory deficits.

Epilepsy Medications and Memory

Medications people take for epilepsy — antiepileptic drugs or antiseizure medications — can also cause memory problems. Many people experience drowsiness when on antiepileptic drugs. This causes concentration problems that affect short-term memory and make it more difficult to learn new information. If you are concerned about how your medication is affecting your memory, you should talk to your doctor. However, never discontinue taking medication without consulting your doctor first.

How Do Memory Problems Affect People’s Lives?

Memory problems can seriously affect the day-to-day well-being of people living with epilepsy, as well as decrease their quality of life. This is why early and efficient seizure control through medications is critical in order to preserve memory as much as possible.

According to the Epilepsy Foundation, there are two approaches people with epilepsy can take to improve their memory. One is an indirect approach, through which people improve their memory by focusing on factors such as seizure control. The second is a direct approach, through which people treat their memory problems with medication (such as stimulants) or with strategies to change behaviors and improve memory recall.

Strategies To Improve Memory

People with epilepsy may wonder if there is anything they can do to help them improve their memory or remember things. One strategy recommended by a member of MyEpilepsyTeam is to write down important information after having a conversation with someone.

One study showed that a memory-rehabilitation or memory-training program can help individuals with epilepsy who struggle with memory problems. Another study found that the drug memantine helped improve memory outcomes in people with focal epilepsy. These effects could also have been due to practice by the study participants, and these results should be interpreted cautiously.

Surgery for epilepsy has also been shown to have varied impacts on epilepsy-related memory problems. For instance, one study found that children with temporal lobe epilepsy who had temporal lobe surgery had mixed results when it came to their memory tests. Specifically, the study found that surgery improved attention or working memory scores, some verbal episodic memory tasks, and naming-test performances. However, children with left temporal lobe epilepsy had worse verbal memory results, and children with right temporal lobe epilepsy had worse visual memory results.

Memory improvement strategies for people with epilepsy are also possible through working with allied health professionals like occupational therapists, physiotherapists, and speech-language pathologists. They can help people learn recall strategies and memory compensatory behaviors, and they can help mitigate some of the other neurologic effects of epilepsy.

What Are People With Epilepsy Saying About Memory?

People on MyEpilepsyTeam sometimes discuss their experiences with epilepsy and memory problems. For instance, one member wrote, “It seems like most of my memory loss started in the last three years.” Another member asked, “Since having epilepsy, do you have trouble remembering things?” They further elaborated, “Each time I have a seizure, it’s like more and more of my memory is taken.” However, another member said that memory does come back, to some extent.

In another daily post, a member explained that they are, “Still recovering from five seizures I had a week ago. Still having trouble remembering everything.” Another member wrote, “I’m so tired of not remembering.”

Memory loss is common in people with epilepsy, and it’s frustrating. Finding a community of people who are experiencing the same things you are going through may help you cope.

Building a Community

MyEpilepsyTeam is the social network for people with epilepsy. On MyEpilepsyTeam, more than 99,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Are you living with epilepsy? Share your experience in the comments below, or start a conversation by posting on MyEpilepsyTeam.