Sex, men and epilepsy

•  Introduction
•  Puberty
•  Sex life
•  Fertility
•  For further information
•  Summary of epilepsy medicines and the effects they may have on your sex life

Introduction

Many men with epilepsy have normal sex lives and father healthy children. This information is to help those few men with epilepsy who may have problems.

We hope this information will do two things:

• give people more information about epilepsy and sex
• make it easier for men with epilepsy, their partners and professionals to talk to each other about epilepsy and sex.

At the end of this information, you will find further contacts, if you have questions that are not answered here.

Puberty

Puberty is when your body changes from a boy to a man. Your body begins to produce sex hormones and these cause your body to change. Most boys begin puberty between 10 and 15 years of age, but some start earlier and some later. Everyone grows and changes at different rates.

1. Can puberty cause epilepsy?

Puberty itself doesn’t cause epilepsy. However, some people start having seizures during their teenage years. This could be due to the changing hormones.

Some epilepsy syndromes are known to begin during teenage years. (A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition.)

Epilepsy syndromes that may begin during teenage years include juvenile myoclonic epilepsy and juvenile absence epilepsy.

More information about juvenile myoclonic epilepsy is available from Epilepsy Action.

2. Can puberty affect my epilepsy?

You might feel more stressed or anxious than usual during puberty. Stress and anxiety may trigger seizures in some people.

If you start having more seizures than normal, it’s worth talking to your family doctor or epilepsy specialist.

Sex life

Most people with epilepsy have normal sexual relationships and their epilepsy doesn’t get in the way. However, it’s not unusual to worry that your epilepsy might affect your sex life.

Some people worry that they’ll have a seizure during sex. The fact is, seizures during or immediately after sex are extremely uncommon.

Before starting a sexual relationship

It’s important that you don’t feel stressed, worried or pressurised into having sex. Stress and worry might make you more likely to have a seizure.

Sexual problems in men

Any man might have problems with sex from time to time. Sexual problems include loss of interest in sex, difficulty getting and staying aroused (also called impotence) and problems with fertility (your ability to make babies).

Common causes of sexual problems for any man include stress, tiredness, illness, alcohol and having a long-term medical condition. However, having epilepsy, or taking epilepsy medicines, may also occasionally cause these problems. Below is more information about ways in which epilepsy may do this.

Ways in which epilepsy or epilepsy medicines may cause sexual problems

Here is some information about two ways in which epilepsy may affect your sex life:
1. Losing interest in sex
2. Having difficulty in getting and staying aroused

1. Losing interest in sex

• Your own feelings about your epilepsy might make you lose interest in sex.
• Your concerns about how your partner feels about your epilepsy might make you lose interest in sex.
• You may be taking an epilepsy medicine that can cause you to have less interest in sex. Epilepsy medicines that have been reported to cause this possible side-effect include carbamazepine, clobazam, clonazepam, oxcarbazepine, phenytoin, phenobarbital, pregabalin, primidone and topiramate.
• You may have lower testosterone levels than usual (see Epilepsy and testosterone below).

2. Having difficulty in getting and staying aroused (impotence)

• You may be taking an epilepsy medicine that can cause impotence. Epilepsy medicines that have been reported to cause this possible side-effect include carbamazepine, clonazepam, gabapentin, oxcarbazepine, phenobarbital, pregabalin, primidone and topiramate.
• You may have lower testosterone levels than usual (see Epilepsy and testosterone below).

Epilepsy and testosterone (the male sex hormone)

Testosterone is a male hormone, produced by your body. It is responsible for many things that affect your sex life. These include your interest in having sex, your ability to have sex and your fertility. If you have low testosterone levels, this may cause you to have problems with your sex life.

Any man can have low testosterone levels. But there are also two reasons why having epilepsy may make your testosterone levels lower than usual.

1. When you have seizures, this might lower the amount of testosterone in your body. Your testosterone levels are particularly likely to be low if you have a type of epilepsy called temporal lobe epilepsy.

More information about temporal lobe epilepsy is available from Epilepsy Action.

2. Some epilepsy medicines make your liver work harder than usual. This can have the effect of reducing the amount of testosterone in your body. Epilepsy medicines that make your liver work harder than usual include carbamazepine, oxcarbazepine, phenobarbital, phenytoin, primidone and topiramate.

If you have low testosterone levels due to having seizures or epilepsy medicine, it is not clear just how much your sex life could be affected. More research into this is needed.

Treating sexual problems

If you have any worries about your sex drive, or your ability to have sex, you are not alone. It’s really worth talking to your family doctor. They will look for ways to help you. For most men with sexual problems, a treatment can be found. Your family doctor may:

• consider any emotional causes, then recommend sex therapy, psychotherapy or relationship counselling
• consider any physical causes that are not related to epilepsy, then suggest suitable treatment.

If your family doctor thinks your sexual problems might be connected to your epilepsy or epilepsy medicines, they will usually refer you to an epilepsy specialist. Your epilepsy specialist may:

• try to improve your seizure control, by changing the dose of your present epilepsy medicines
• suggest changing to a different epilepsy medicine, that is not known to cause sexual problems. These include lamotrigine and levetiracetam
• suggest trying a different medicine as well as your epilepsy medicine.

Fertility (making a baby)

Some research suggests that men with epilepsy may not be as fertile as men who don’t have epilepsy. This can make it more difficult to make a baby.

Ways in which epilepsy may affect your fertility

• You may be taking an epilepsy medicine that can reduce the amount of sperm you produce or affect the quality of it. Carbamazepine and oxcarbazepine may cause this side-effect. There is also a small amount of evidence to suggest sodium valproate may affect how much sperm you produce.
• You may have lower testosterone levels than usual (see Epilepsy and testosterone above).

Treating fertility problems

If you are trying for a baby and your partner is taking a long time to get pregnant, speak to your family doctor. There could be many reasons for this, related to either you or your partner.

If your family doctor thinks that your epilepsy or epilepsy medicines are a possible cause, they’ll usually refer you to an epilepsy specialist. The specialist may make changes to your epilepsy medicine, to see if that helps.

If you are concerned about the quality or quantity of your sperm, speak to your doctor. It is easy for them to do a test to check your sperm.

For further information

For relationship issues you could contact:

Relate
Tel: 0300 100 1234
Website: relate.org.uk

For friendship and dating you could contact one of these organisations:

Outsiders club
Tel: 020 7354 8291
Website: outsiders.org.uk

You’re able (online community)
Website: youreable.com

For more information on sexuality, impotence and fertility:

Sexual Advice Association
Tel: 0207 486 7262
Website: sda.uk.net

Family Planning Association
Tel: 0845 122 8690
Website: fpa.org.uk

Institute of Psychosexual Medicine
Tel: 020 7580 0631
Website: ipm.org.uk

Outsiders Sex and Disability Helpline
Tel: 0707 499 3527
Website: outsiders.org.uk/helpline

Summary of epilepsy medicines and the effects they may have on your sex life

1. Epilepsy medicines that may reduce levels of testosterone levels

Carbamazepine, oxcarbazepine, phenobarbital, phenytoin, primidone and topiramate.

2. Epilepsy medicines that have been reported to cause loss of interest in sex

Carbamazepine, clobazam, clonazepam, oxcarbazepine, phenytoin, phenobarbital, pregabalin, primidone and topiramate.

3. Epilepsy medicines that have been reported to cause impotence

Carbamazepine, clonazepam, gabapentin, oxcarbazepine, phenobarbital, pregabalin, primidone and topiramate.

4. Epilepsy medicines that may reduce the amount or quality of sperm

Carbamazepine, oxcarbazepine and possibly sodium valproate.