Epilepsy

Epilepsy is a neurological condition that affects the brain’s electrical activity, causing repeated seizures.

Imagine your brain as a city with perfectly synchronized traffic lights controlling the flow of cars—these lights are like the electrical signals that make your thoughts and body function. With epilepsy, some of these lights malfunction, leading to a sudden surge or halt in electrical signals, like a “traffic jam.” This causes seizures, which can affect your awareness, provoke uncontrollable movements, or lead to unusual behaviors or falls.

Seizures vary greatly in type and intensity. Some are mild, such as brief moments of confusion or small muscle twitches, while others are more severe, involving convulsions. The symptoms of epilepsy differ from person to person. Here are some common signs of epilepsy:

• Sudden confusion
• Staring spells
• Uncontrollable movements or stiffness of the arms and legs
• Psychological symptoms like recurring hallucinations, feelings of déjà vu, or sudden unexplained fear
• Loss of consciousness in some cases

These symptoms might be mild or severe and are determined by the location in the brain of the sudden electrical burst. Seizures can last from a few seconds to several minutes and don’t always involve visible convulsions; some may appear as brief periods of disorientation or staring. A person is diagnosed with epilepsy if they experience sudden seizures that happen repeatedly.

During pregnancy, hormonal and physiological changes can affect the brain’s electrical balance, sometimes increasing the frequency of seizures. Lack of sleep, stress, and changes in medication levels can also trigger more seizures, especially if you had frequent seizures before pregnancy.

Epilepsy can affect anyone, at any age. Rarely, a woman can experience her first seizure during pregnancy. This occurs in less than 1 out of 100 pregnancies and is caused by the changes in your body that can trigger symptoms that were previously absent or unnoticed.

If you notice any unusual episodes, such as unexplained confusion, memory lapses, or involuntary movements, it’s important to seek medical advice promptly.

Women with epilepsy can have healthy pregnancies, especially if the condition is controlled. In fact, with proper management, more than 9 out of 10 women with epilepsy can have successful pregnancies and good outcomes for both mother and baby.

The best chance of having a healthy pregnancy is to plan your pregnancy at least 1 year in advance. Effective management of your epilepsy – like keeping the ‘traffic lights’ in sync to prevent disruption – is key to ensuring the best possible outcome.

Uncontrolled seizures can significantly increase the risk of injury, premature labour and miscarriage. In addition, certain anti-seizure medications (ASMs) can increase the risk of birth defects and developmental problems if not carefully selected and monitored. If you suddenly find out that you are pregnant, you should contact your doctor immediately to see if your medication needs to be adjusted to take account of your new condition.

Miscarriage, congenital malformation “tooltip”, premature birth and other complications can occur in any pregnancy for many different reasons. This is known as the background risk. Here, we compare this background risk with the risks associated with taking the drug.

The table below provides a summary of the main risks associated with uncontrolled seizures during pregnancy compared to the background risk seen in women without epilepsy or with a stable condition. Remember, these risks are relative and can be influenced by factors like the mother’s age, genetics, ethnicity, lifestyle, and other medical conditions. Having an open conversation with your healthcare team can help you understand your personal risks and manage them effectively.

Most women with epilepsy can safely breastfeed their babies. Breastfeeding has many benefits for both you and your baby, and in most cases, it is encouraged. While some anti-seizure medications (ASMs) do pass into breast milk, the amount is usually low and not likely to harm your baby and thus, considered compatible with breastfeeding.

Your healthcare team will help you weigh the benefits of breastfeeding against any potential risks, so you can make an informed decision to promote a safe experience for both mother and baby.

If you have any questions related to breastfeeding, don’t hesitate to talk with a doctor, pharmacist, midwife, or a lactation consultant.

Consider establishing an ‘epilepsy management’ plan with your partner and your healthcare team, just as you would for preparing for childbirth. You should do this either before your pregnant or early in the pregnancy. Identifying your seizure triggers early and discussing ways to manage them – especially fatigue and stress – can help you maintain your well-being throughout your pregnancy. This preparation allows you to quickly implement family support to avoid exhaustion.

While medications are the primary and most effective treatment for epilepsy, some people may also manage their seizures through lifestyle changes, dietary approaches, or other non-medication therapies. However, these alternatives might not be suitable for everyone and are often used in complement with medication, not as a replacement.

For some individuals, with mild epilepsy or specific seizure triggers, some techniques might help reduce seizure frequency including:

• Stress-reduction techniques (e.g. mindfulness, meditation, yoga)
• Adequate sleep
• Ketogenic diet
• Staying hydrated
• Regular physical activity

Additionally, screening for anxiety  and depressive disorders,  which are frequently concomitant with epilepsy, is recommended during pregnancy and in the post-partum period. It can be easy to forget self-care during pregnancy, make sure to take time for yourself and take practical steps to prioritize both your health and well-being. 

Working closely with your healthcare provider before and throughout your pregnancy is essential to ensure the best possible outcomes for you and your baby. They will help to determine the best approach for your epilepsy. Most people with epilepsy require medication to fully control their seizures, and stopping or avoiding medication without medical guidance can lead to uncontrolled seizures, which can be dangerous.

It’s important to take your medication exactly as prescribed to ensure the best control of your seizures, especially during pregnancy. Regular follow-ups with your healthcare provider are essential because your medication dose may need adjustment. If you experience any concerns or issues, don’t hesitate to discuss them with your healthcare provider, who can help adjust your treatment plan to keep you and your baby safe, whether you’re pregnant or planning to become pregnant.

Making informed health decisions also involves considering the current state of scientific knowledge. Here are some research limits found by our committee of experts on the quantity and quality of studies on epilepsy during pregnancy:

• Limited Large-Scale Studies: There aren’t many large, controlled studies on epilepsy during pregnancy because it’s difficult to conduct these kinds of studies ethically and safely with pregnant women.
• Lack of Long-Term Follow-Up: Many studies focus only on the immediate outcomes of pregnancy, without tracking how children develop as they grow older.
• Underreporting: Some studies rely on women’s own reports or incomplete medical records, which can miss important details about how often seizures happen or the effects of medications.
• Diverse Populations: Research often includes women with different types of epilepsy and medications, making it hard to apply the findings to everyone. There’s also a need for more studies addressing cultural and socioeconomic differences.
• Genetic Factors: Further research required to understand epilepsy genetic predispositions.
• Psychological Impact: More studies needed on the emotional effects of epilepsy during pregnancy.

These limitations mean that while we know a lot, there’s still much to learn about how best to manage epilepsy during pregnancy.

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