Experiences with
Topiramate

Topiramate is a medicine used to treat epilepsy. These are also called anti-epileptic medicines.

It can also be taken to help prevent migraine.

Topiramate works by reducing bursts of electrical activity in your brain and restoring the normal balance of nerve activity.

This medicine is only available on prescription. It comes as tablets, capsules and a liquid you swallow.

If taken during pregnancy, topiramate can increase the risk of birth defects and learning and behaviour problems in your child. Topiramate is not recommended if there's a chance that you could become pregnant.

For women and girls of childbearing age, if there are no other suitable treatments and you do need to take topiramate for epilepsy, your doctor will enrol you on the pregnancy prevention programme.

The pregnancy prevention programme aims to stop you from accidently becoming pregnant while taking topiramate. It includes:

an annual review – you should be reviewed every year by your doctor or nurse, who will assess whether you need to continue taking topiramate or whether it's possible to change your medicine
contraception advice – if you are taking topiramate then you must be using reliable contraception, even if you're not currently sexually active

Your doctor or nurse can advise you about reliable contraception. You'll be asked to sign a form to say that you're using contraception and understand the risks of becoming pregnant while taking topiramate.

It's important to get advice from your doctor if:

you become pregnant
you want to plan a pregnancy

Who can take topiramate

Most adults and children aged 2 years and over can take topiramate.

Who may not be able to take topiramate

Topiramate is not suitable for some people. To make sure it's safe for you, tell your doctor before starting to take this medicine if you:

have ever had an allergic reaction to topiramate or any other medicine
have kidney problems, especially kidney stones
have a blood disorder called acute porphyria
have a history of blood metabolic acidosis, where the body produces too much acid or cannot remove it properly
have eye problems, especially glaucoma
have liver problems
are pregnant or trying to get pregnant – girls and women of childbearing age who need to take topiramate must be enrolled on a pregnancy prevention programme. Speak to your doctor about this

Dosage

How much topiramate you take will depend on what you're using it for.

You'll usually start topiramate on a low dose of 25mg to 50mg a day.

This will be increased over several weeks to the usual doses for:

epilepsy – 100mg to 200mg a day, taken as 2 doses
epilepsy (if you take another epilepsy medicine with topiramate) – 200mg to 400mg a day, taken as 2 doses
migraines – 50mg to 100mg a day, taken as 2 doses

In children, the dose of topiramate will depend on your child's weight. Your child's doctor will be able to tell you the right dose for your child.

How to take it

You'll usually take topiramate twice a day. You can take it at any time of day, but try to take your doses at the same time each day.

Try to space your doses evenly through the day. For example, you could take it first thing in the morning and in the evening.

You can take tablets with or without food. Swallow your tablets whole with a drink of water. Do not chew them.

Swallow topiramate capsules whole. If you're giving them to a child you can open them and sprinkle the medicine on a teaspoon of soft food, like porridge or yoghurt.

How long to take it for

Once your epilepsy is under control, you'll usually need to keep taking topiramate for many years.

If you're taking topiramate for migraine you may be able to stop taking it after 6 to 12 months. Your doctor will help you do this gradually.

If you forget to take it

If you forget to take a dose, take the missed dose as soon as you remember. If it's less than 8 hours before your next dose is due, skip the missed dose and take your next dose at the usual time.

Do not take 2 doses at the same time to make up for a forgotten dose.

If you forget doses often, it may help to set an alarm to remind you. You could also ask your pharmacist for advice on other ways to help you remember to take your medicine.

If you take too much

Taking more than your prescribed dose of topiramate can lead to serious side effects.

you take more than your prescribed dose of topiramate and you:

feel dizzy or sleepy
have difficulty talking
have blurred vision
have stomach pain
feel depressed or your behaviour changes

Go to 111.nhs.uk or call 111

Call 111 if you're asking about a child under the age of 5 years.

If you need to go to A&E, do not drive. Ask someone to drive you or call 999 and ask for an ambulance.

Bring the topiramate packet or leaflet inside it, any remaining medicine, and any other medicines you take.

Common side effects

These common side effects of topiramate may happen in more than 1 in 100 people. They're usually mild and go away by themselves.

There are things you can do to help cope with them:

Stick to simple meals and do not eat rich or spicy food. It might help to take your topiramate after a meal or snack.

Do not drink alcohol, as this will make you feel more tired. If you feel dizzy, stop what you're doing and sit or lie down until you feel better. Do not drive, cycle or use tools or machinery.

As your body gets used to topiramate, these side effects should wear off. If they do not wear off after a few weeks or you feel dizzy all the time, speak to your doctor.

Drink lots of fluids, such as water or squash, to avoid dehydration. Signs of dehydration include peeing less than usual or having dark, strong-smelling pee. Do not take any other medicines to treat diarrhoea without speaking to a pharmacist or doctor.

If you're taking the combined pill or progestogen-only pill, and you have severe diarrhoea for more than 24 hours, your contraception may not protect you from pregnancy. Check the pill packet to find out what to do.

If this continues, speak to your doctor.

Try to eat at your usual meal times even if you do not feel hungry. If this becomes a problem, speak to your doctor or pharmacist.

Speak to a doctor or pharmacist if the advice on how to cope does not help and a side effect is still bothering you or does not go away.

Serious side effects

Tell your doctor or call 111 now if you:

get blurred vision, have difficulty seeing and eye pain – these can be signs of glaucoma (these symptoms usually happen in the first month of starting topiramate)
get pain in your back, belly or side, a burning sensation when you pee, or cloudy or smelly pee – these can be signs of kidney stones and a kidney infection
feel sleepy, lose your appetite and have an irregular heartbeat – these can be signs of metabolic acidosis
think your child is not sweating – some children taking topiramate may not sweat enough in hot weather, causing their body temperature to rise

Serious allergic reaction

In rare cases, it's possible to have a serious allergic reaction (anaphylaxis) to topiramate.

Meds New IA (H4) - serious allergic reaction

These are not all the side effects of topiramate. For a full list, see the leaflet inside your medicines packet.

Topiramate and pregnancy

Topiramate has been linked to a small but increased risk of birth defects for your baby if you take it during pregnancy. Children born to mothers taking topiramate may have an increased risk of learning and development problems as they grow older.

If there's a chance you could become pregnant while taking topiramate, your doctor will enrol you on a pregnancy prevention programme.

If you think you might be pregnant and you're taking topiramate, contact your doctor or nurse as soon as possible.

If you have epilepsy and become pregnant, do not stop taking your medicine without talking to your doctor first. Epilepsy can become a lot worse if you suddenly stop your medicine.

Your doctor will review your treatment. It may be possible to change your epilepsy medicine to something that is safer in pregnancy. However, sometimes topiramate may be the most effective treatment, or the only treatment available, even if you're pregnant.

Your doctor will discuss what's best for you, based on your condition and the risks and benefits of topiramate.

There are many treatments for migraine that can be used during pregnancy. Your doctor should be able to offer you an alternative treatment to topiramate.

Topiramate and breastfeeding

If your doctor or health visitor says your baby is healthy, you can take topiramate while you're breastfeeding.

Topiramate passes into breast milk, and it can sometimes build up in your milk. This could make your baby sleepy or irritable, or make it difficult for them to feed. There has also been one report of it causing diarrhoea in a breastfed baby, but most babies will not have any side effects.

It's important to keep taking topiramate to keep you well. Breastfeeding will also benefit both you and your baby.

If you notice that your baby is not feeding as well as usual, or seems unusually sleepy or irritable, has diarrhoea or you have any other concerns about them, talk to your pharmacist, midwife, health visitor or doctor as soon as possible.

Topiramate and fertility

There's no evidence to suggest that taking topiramate causes fertility problems in either men or women.

However, speak to your doctor or specialist if you want to try to get pregnant, as they will want to review your treatment to see whether topiramate is still the right treatment for you. It's important to use contraception to avoid getting pregnant while waiting for a review by your doctor.

Meds New IA (H2) - Pregnancy non-urgent care card

Cautions with other medicines

There are some medicines that may affect how topiramate works or topiramate may affect how they work.

Tell your doctor if you're taking any of these medicines:

medicines used to treat diabetes, such as metformin, glibenclamide or pioglitazone
medicines used to treat depression or anxiety, such as venlafaxine or amitriptyline
medicines for heart problems or high blood pressure, such as diltiazem, hydrochlorothiazide or propranolol
antipsychotic medicines, such as risperidone
any other epilepsy medicines

Mixing topiramate with herbal remedies and supplements

Tell your doctor or pharmacist if you need to take high doses of vitamin C or calcium supplements. Taking these supplements can increase a risk of kidney stones.

Do not take St John's wort, the herbal remedy for depression, while you're being treated with topiramate. It may make topiramate less effective.

There's not enough information to say that other herbal remedies and supplements are safe to take with topiramate. They're not tested in the same way as pharmacy and prescription medicines.

Meds New IA (H2) - Cautions with other medicines alert