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LIVING WELL WITH EPILEPSY

Self-management

• Living with epilepsy
• Alcohol
• Sex
• The contraceptive pill
• Having children
• Top ten tips for living with epilepsy

Living with epilepsy

Many people have concerns about living with epilepsy. Each person experiences epilepsy in quite different ways depending on the type, frequency and predictability of their seizures. As we have already said, in most cases, medication can stop seizures occurring – or at least reduce them dramatically.

With a bit of forward planning, you can do most things you want to do and enjoy it. By learning to recognise your seizure triggers, you can either avoid them or develop ways to minimise the risk. Sure, certain issues will arise and some lifestyle adjustments may need to be made. But don't become obsessed by them. You can miss out on many wonderful life experiences by restricting your lifestyle unnecessarily. Epilepsy will have an impact on your life, but you can minimise that impact by recognising those issues that affect you and managing them in a positive way.

Alcohol

For those people who enjoy a social drink, epilepsy shouldn't stop you having the occasional beer or two or a glass of wine with dinner. Most people with epilepsy can safely drink a small amount of alcohol, however some people find even small amounts of alcohol can trigger seizures. The credo 'all things in moderation' applies here. Moderate drinking means having two standard drinks a day. A standard drink is equal to:

• one small glass of wine (100ml)
• one glass of full strength beer (285ml)
• one nip of spirits (30ml).

Be aware of the quantity of alcohol you drink and don’t let anyone persuade you to drink more. Alcohol and antiepileptic medications interact in specific ways. AEDs can make you more sensitive to the sedating effects of alcohol while alcohol reduces the effectiveness of AEDs making seizures more likely.

Excessive drinking can result in poor seizure control due to late nights, missed meals or forgotten doses, while ‘hangover’ seizures are likely to occur as the alcohol level in the blood falls. Some antiepileptic medications specifically recommend that you not drink while taking them and some neurologists expect their patients to follow this restriction to the letter – especially until they get their seizures under control. Ask your doctor about the effects of drinking alcohol with the medication you have been prescribed.

Sex

Lots of people worry unnecessarily about whether or not it is safe to have sex when they have epilepsy or when their partner has epilepsy. Millions of people living with epilepsy – either their own or that of a partner – will happily attest to the fact that their sex lives are just fine.

For most of us sex is an important part of our lives and worrying about our sexual abilities or about our sexual performance can lead to sexual problems. So if you do experience a loss of libido or sexual energy speak about it with your doctor. It may just be that the AEDs you are taking are contributing to a reduced desire for sex. If this is the case it is usually easily remedied.

There is evidence that some epilepsy syndromes can reduce libido. It may not be a great worry to some people, but it can be for others. It’s possible that a person with epilepsy will feel less like sex than their partner. It is therefore important that partners talk openly and supportively to one another about this.

For some men, there is evidence that actual arousal, rather than desire, can be adversely affected. This was once thought to be a direct outcome of particular antiepileptic medications for the particular people taking them. It is now understood that for some people it is a direct consequence of their epilepsy. If you have experienced this, tell your doctor. While it is not necessarily something that can be fixed instantly, it is certainly possible that some of the newer antiepileptic medications might be more helpful or that some of the newer medications available for rectifying sexual dysfunction might be of help.

For many of us, sex is a difficult matter to raise with a doctor or counsellor. Nonetheless, if you have concerns about your sex life and the impact of any aspect of epilepsy upon it, talking about it with your doctor or epilepsy counsellor may be the best thing you can do. If they cannot help you they can certainly support you in finding the solutions that you want.

If your doctor or epilepsy counsellor dismisses your concerns as ‘nothing to worry about’ because you are too old or too young, or because they feel that sex really isn’t such an important thing in our lives, then tell them that you disagree. Tell them that you are expecting their support and if they feel unable to assist you with your concerns ask them to refer you to someone who can. If you live in a remote area and specialist services are limited, an epilepsy counsellor at the Epilepsy Foundation of Victoria can help you find out what your options are for seeing another specialist.

The contraceptive pill

Some medications for epilepsy can reduce the effectiveness of the contraceptive pill. Break-through bleeding may indicate that the strength of the contraceptive pill prescribed may not be strong enough. If this happens, use other contraceptive methods until you have seen your doctor.

The oral contraceptive pill will be suitable for most women with epilepsy. In a very small minority of women, however, it may increase the frequency or severity of their seizures. There are reliable alternatives to the oral contraceptive pill, such as an IUD (inter-uterine device), that don’t have any interaction with antiepileptic medication. Remember you have a range of options available to you. Please discuss these with your neurologist.

Having children

Most women with epilepsy are able to have children without complications. Careful medical management is important because seizures during pregnancy and antiepileptic medication may pose a risk to the baby’s health. So if you are planning to become pregnant, we strongly recommend that you discuss pregnancy with your doctor prior to conception. Some forms of epilepsy are inherited but most are not. Your neurologist or a genetic counsellor can give you information about epilepsy and inheritance.

 

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