Epilepsy in women

What is epilepsy?

Epilepsy is a condition that affects the brain and is characterised by recurrent seizures.

About one in 10 people experience at least one seizure during their life, but doctors usually only diagnose epilepsy if you have more than one seizure or they believe there is a high likelihood you will have more seizures.

Epilepsy can start at any age and is more common than most people realise, affecting about one person in 100.

What is an epileptic seizure?

Normal electrical activity happens in our brain all the time – it’s our brain cells communicating with each other.

When there is a sudden burst of intense electrical activity in our brain, however, this causes a seizure. That interrupts normal brain activity so communications between our brain cells become confused and an epileptic seizure results.

There are many different types of seizure. How they affect the person having a seizure depends on the part of the brain that is effected and how far the disturbance spreads.

Why does someone have epilepsy?

Known reasons someone might develop epilepsy include:

• Traumatic injury to the brain (for example caused by a head injury, an infection of the brain, or a stroke)
• A problem with brain development before birth
• A brain tumor
• Genetic factors
• In resource-poor countries, parasitic infections, such as neurocysticercosis, can also lead to epilepsy.

For many people diagnosed with epilepsy, a cause will not be identified, but this field of research is always improving. There has been great progress in brain imaging technologies, such as MRI, which has helped many people to identify the cause of their epilepsy. It is also now believed that genes can play an important role in determining who develops epilepsy. Genetics research is continuing to improve understanding of which genes cause which type of epilepsy, which may help lead healthcare professionals to the best possible medical management for patients.

How is epilepsy treated?

Most people with epilepsy are prescribed anti-seizure medications (ASMs) to try to control their seizures. As the name suggests, the medication doesn’t cure epilepsy – it works to help control seizures.

An ASM can either stop seizures altogether or reduce their frequency and severity. The doctor may need to try different ASMs or prescribe a combination, before finding the best option.

If the ASMs don’t work, or don’t work well enough, other options for treatment include vagal nerve stimulation (VNS), following a ketogenic diet, or brain surgery. In certain situations, brain surgery may be considered as a treatment option even for individuals who have responded to medications.

Despite all the treatments available, about 30% of people with epilepsy will continue to experience seizures.

Side effects of epilepsy

Epilepsy is a neurological condition that can lead to a variety of side effects, depending on the type and severity of seizures. Common side effects may include:

• Confusion
• Memory problems
• Fatigue
• Mood changes such as anxiety or depression.

Seizures themselves can cause:

• Temporary disorientation
• Muscle stiffness or twitching
• Loss of consciousness.
• Long-term effects might include:
• Cognitive challenges
• Sleep disturbances
• In some cases, injury from falls or convulsions during seizures.

It’s important for individuals with epilepsy to work closely with their healthcare providers to manage these side effects and improve their quality of life.

Why is epilepsy different for women?

Being a woman with epilepsy comes with a unique set of issues. This is especially noticeable when a woman reaches puberty, and/ or becomes sexually active.

For example, epilepsy can affect a woman’s sexual development and menstrual cycle. Aspects of puberty, menopause, birth control, and fertility can be impacted by epilepsy, so it is really important to consider your epilepsy when preparing for pregnancy and motherhood.

What are hormones and how do they affect epilepsy?

Hormones are chemical substances in the blood that control many of the processes in the body. It is known that female reproductive hormones (estrogen and progesterone) influence seizures.

These hormones fluctuate during a woman’s lifetime – especially at puberty, during the monthly menstrual cycle, while taking hormonal birth control, when pregnant, and at menopause. Many women also experience hormonal disorders, such as polycystic ovary syndrome or diabetes, which cause additional hormonal changes.

These fluctuations in hormones mean women often encounter changes to their seizures, especially during times of significant hormonal change.

How does puberty affect epilepsy?

As mentioned above, hormonal changes during puberty may affect seizure frequency in young women and girls.

In addition to this, physical growth during puberty can cause the levels of anti-seizure medication in blood to change, resulting in changes in seizure frequency or pattern. If that happens, doctors must alter the dose of the medication.

Some young women find that seizures stop at puberty. Others find that their seizures start when puberty hits.

People with epilepsy should keep taking the ASM their doctor prescribes. If they stop suddenly, that could result in seizures or a life-threatening condition known as status epilepticus. Adolescents are more likely than people of other age groups to suddenly stop taking their medication, so it is especially important that young people are informed about the risks.

Even reducing the dose of prescribed ASM without supervision can result in problems. Discussing any issues with your doctor, including side effects that are of concern to you, can be helpful.

What do I need to know as a woman with epilepsy?

• Your seizure type and the risks that are associated with your seizures.

Track your seizures – note when they occur and what might have been a trigger. You a seizure diary app to help (there are a few available) or a wearable device – these are relatively new to the market.

• Observe if you experience seizures at specific timed during your menstrual cycle and talk to your doctor if so. You could have catamenial epilepsy.
• If you’re having sex-related problems such as a low sex drive, check with your doctor to see if this might be caused by your anti-seizure medication.
• Know the importance of careful pregnancy planning and use of folate (folic acid) even if you are not planning to become pregnant.

Having a baby can be an exciting time for many parents. But for women with epilepsy, becoming pregnant and having a baby may be a little more complicated.

With the right information and support, however, most women with epilepsy can have successful pregnancies and deliver healthy babies.

The key to a healthy pregnancy and safe delivery is knowledge and early preparation. If you have epilepsy and you’re considering having a baby, it’s crucial to understand potential issues around pregnancy, such as:

• getting medication right
• understanding risks that can be avoided if you’re pregnant.

Not every woman wants to have a family, but it is important that all women with epilepsy who may be sexually active are equipped with information about epilepsy and contraception, even those who already have children.

Wherever you are on your journey, we have information to support you.

What is catamenial epilepsy?

Catamenial epilepsy is a phenomenon in certain types of epilepsy, specific to women and people who menstruate, in which seizures happen more often at certain points of the menstrual cycle.

Neurologists now recognise this pattern of seizures happening in parallel with the menstrual cycle and are finding new ways to help women who are affected.

When does it happen?

Catamenial epilepsy can occur at any phase of the menstrual cycle. For some women, seizure frequency increases just before their period or during the first few days of bleeding. This is thought to be caused by the sudden drop in progesterone at this time. Others see seizure frequency increase when they ovulate (mid-cycle). In this case, experts believe the rapid rise in estrogen levels at this time causes the issue. In some women, seizures happen more often in their mid- to late-cycle. This type of catamenial epilepsy is more commonly observed in women who do not ovulate regularly, which may be due to certain hormonal disorders.

How do I check if I have catamenial epilepsy?

If you think your periods and your cycle may be affecting your seizures, you can keep a diary that tracks both your seizures and your menstrual cycle for two or three cycles. You can track your menstrual cycle by making note of when your period starts and ends. You can then ask your doctor to review it.

If a medical review of your seizure/ menstruation diary reveals an increase in seizure frequency during one phase of the menstrual cycle, your doctor may diagnose catamenial epilepsy.

Will epilepsy affect my sex life?

Anyone can have issues around sex at times, and people with epilepsy are no exception. Studies have shown that up to a third of women with epilepsy have problems with sex, for example:

• low interest in sex
• difficulties in being able to reach orgasm
• pain or discomfort during sex, due to vaginal dryness or vaginal spasms.

We don’t fully understand yet all the complex causes for sexual problems and how they may relate to epilepsy, so consult your doctor if you have any questions or concerns.

Will my anti-seizure medication affect my sex life?

Some ASMs can cause cosmetic side effects such as acne, hair loss, or excessive hair growth, which can have an impact on self-esteem. This may affect how women with epilepsy perceive their sexual attractiveness or value, which may consequently reduce sexual desire.

It’s important to try to accept yourself as you are and come to terms with your epilepsy, so you’re empowered to develop an intimate relationship with a partner.

Any ASM can cause sexual difficulties but, while you may find one medication causes you problems, another ASM may not. If you have a problem, ask your doctor if you can try a different ASM.

Do I need to worry about seizures during sex?

Having a seizure during sex is a real fear for some people with epilepsy. It is particularly the case for those people whose seizures are triggered by excitement or physical activity.

For most people with epilepsy, the likelihood of having a seizure during sex is no higher than at any other time. Nevertheless, it’s good to talk with your partner about your fears and explain what they need to do if you have a seizure during sex. Good communication will help you both to handle this fear.

Can I resolve the sexual issues my epilepsy is causing?

Epilepsy can have effects on sex, and sex can have effects on epilepsy. Many people with epilepsy enjoy a satisfying sex life. Sex can release stress and help relax people, which in turn can reduce seizure frequency.

When seizures are under control, people seem to have improved sexual desire and few problems with arousal, so don’t ignore a problem when a solution could be close at hand.

You may feel embarrassed talking with your doctor about sexual problems, but when you speak openly, your doctor can understand your issue and help you overcome it.

Remember: depression, anxiety, tiredness and stress can also cause sexual problems, so consider getting help if you are experiencing difficulties with your mental health.

Epilepsy and menopause can interact in ways that affect both seizure activity and overall health. Hormonal changes during menopause may influence the frequency and severity of seizures, while the experience of menopause can also impact epilepsy management. Here are some key points to consider:

Hormonal fluctuations

The decline in estrogen and progesterone during menopause can lead to changes in seizure patterns. Some women may experience an increase or decrease in seizure frequency.

Medication adjustments

Changes in metabolism during menopause may require adjustments in anti-seizure medications to maintain effective control.

Mood and cognitive changes

Menopause can exacerbate mood swings, depression, and cognitive issues, which are also common in epilepsy. Managing both conditions simultaneously may require a multidisciplinary approach.

Sleep disturbances

Both epilepsy and menopause can contribute to sleep problems, which in turn can trigger seizures. Addressing sleep quality is crucial for overall well-being.

Bone health & osteoporosis

Both epilepsy and menopause increase the risk of osteoporosis, a health condition which results in the weakening of the bones. Women with epilepsy should be particularly cautious, as some anti-seizure medications can contribute to bone density loss.

Working closely with healthcare providers during menopause is essential for women with epilepsy to adjust treatment plans and maintain a high quality of life.