Epilepsy in women

Being diagnosed with epilepsy is a significant moment in anyone’s life and working out how to live with it takes time.

Women have to contend with additional issues, but information is power, so take the time to understand what you need to know about pregnancy, hormones, sex and more as a woman with epilepsy.

Understanding epilepsy

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 caused by a head injury, an infection of the brain or a stroke
  • A pre-natal (before birth) brain development problem
  • A brain tumour
  • Genetic factors
  • In resource-poor countries, parasitic infection such as neurocysticercosis can also lead to epilepsy

For more than half of people diagnosed with epilepsy, a cause will not be identified, however. It is now believed that genes cause an important role in determining who develops epilepsy. Genetics research is continuing in understand which genes cause which type of epilepsy.

How is epilepsy treated?

Most people with epilepsy are prescribed anti-seizure medication (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 either stops seizures altogether or reduces 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 brain surgery, vagal nerve stimulation (VNS) or following a ketogenic diet.

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

Hormones and epilepsy

Why is epilepsy different for women?

Being a woman with epilepsy is not the same as being a man with epilepsy. This is especially noticeable when a woman reaches childbearing age and becomes sexually active.

Epilepsy can affect her sexual development and menstrual cycle, for example. It affects aspects of contraception and fertility, and is really important to consider when you’re preparing for pregnancy and motherhood.

What are hormones and how do they affect epilepsy?

Hormones are chemical substances in the blood that control some biological processes in the body. We know the female hormones of oestrogen and progesterone influence seizures.

These hormones fluctuate during a woman’s lifetime – at puberty, during the monthly menstruation cycle, when pregnant, and at menopause. That means women often find hormonal changes affect their seizures.

How does puberty affect epilepsy?

During puberty, seizure medication blood levels may also be affected, resulting in changes in seizure frequency or pattern. If that happens, doctors must alter the ASM dose.

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

Adolescents must 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.

Even reducing the dose of prescribed ASM 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.

Understanding catamenial epilepsy

What is catamenial epilepsy?

Catamenial epilepsy is a type of epilepsy, specific to women, 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. That 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 oestrogen levels at this time causes the issue.

For a third group, seizures happy more often in their mid- to late-cycle.

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 cycle. 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 will suspect catamenial epilepsy as the cause.

Epilepsy and sex

Will epilepsy affect my sex life?

Anyone can have issues around sexual performance 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, reporting issues such as:

  • low interest in sex
  • difficulties in being able to reach orgasm
  • painful 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 be related to epilepsy.

Will my ASMs affect my sex life?

Some ASMs cause adverse cosmetic effects and, in turn, those can lead to low self-esteem, making women with epilepsy feel sexually unattractive and reducing sexual desire.

It’s important 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 issues my epilepsy is causing?

Epilepsy can have effects on sex, and sex has effects on epilepsy. Many people with well controlled epilepsy enjoy a satisfying sex life. Sex can release stress, and help relax people, which in turn reduces 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 from a trained therapist if needed.

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

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