Drugs and treatments

Antiepileptic drugs

Is this need for medication going to go on forever?

Whatever you do, don’t despair. The drugs you take are calming the chemicals in the brain that cause the seizures. Depending on what type of epilepsy you have, if you haven’t had a seizure for two years your doctor may discuss the possibility of gradually stopping your medication. (If no one mentions it, just ask).

Why is everyone always asking me if I have taken my medication?

You know how important it is to take your meds exactly the way your doctor explained. If something about them is upsetting or irritating you (unwanted side effects) go back and tell your doctor. You may well find that the side effects settle as your body adjusts to them, but if not there’s a huge range of antiepileptic drugs to choose from and something different may suit you a whole lot better.

It’s especially important not to get frustrated, depressed and then stop taking your medication. All that usually does is set off more seizures. (And that will also happen if you keep skipping doses.) If you’re tempted to stop taking your meds, have a good cry until you feel less sorry for yourself, then put on music that cheers you up, and remember what happens with uncontrolled seizures. Not only can they be very dangerous, but they’ll restrict your life a good deal more than taking your meds has.

By the way, using a pill box makes it easier to remember if you’re on track. There are dozens of different designs – even pill boxes with built in alarms to remind the truly flaky. www.medicaltags.co.uk

What should I do if I forget to take my medication?

If you forget to take a dose of medication and you remember within three hours of the usual time, take the forgotten dose immediately. If you remember only at, or around the time the next dose is due, just take your usual dose.

Coming off the drugs. (Medication withdrawal)

Your doctor is only likely to suggest having a go at this if you’ve gone at least two years without a seizure. You’ll talk it over together. Things to consider are:

• what kind of seizures do you have?
• does your medication give you horrible side effects?
• are you soon likely to be living on your own?
• is driving an important part of your life or job?
• would you be able to continue in your work, or with your studies, without too much difficulty if your seizures returned?

If you both decide it’s worth trying, between you you’ll work out a way of gradually cutting down the drugs until you’re off them completely. But you do have to bear in mind the risks there’d be in your having a seizure because you’ve withdrawn medication. So all this has to be thought about very carefully indeed.

Isn’t there any other way of dealing with epilepsy other than tablets?

As tiresome as it may seem, medication just does work best for almost everyone. But there are a few people who don’t respond well to antiepileptic drugs, and for those, a few other treatments have been developed and might work. These include brain surgery, a treatment called ‘vagus nerve stimulation’, and a therapy based on what you eat.

Surgery

Brain surgery is only suitable for a small number of children and young people with epilepsy. It should be considered if taking two different types of medication hasn’t worked, and if your seizures start from some particular part of your brain where the surgery will not cause any problems.

For further information you can go to www.gosh.nhs.uk and look under information sheets.

Vagus nerve stimulator (VNS)

The word Vagus comes from the Latin word for wandering, and this nerve does cover a pretty wide area of the body. Its job is to transmit messages between the body and the brain.

Surgeons can place a very small device (rather like a heart pace-maker) into the chest under the collar bone. It’s about the size of a £2 coin. This device has the job of stimulating the vagus nerve in hopes of having a good effect on seizures.

To find out more, visit www.cyberonics.com

Dietary therapies

The one you’ll probably hear about most frequently is the ketogenic diet. This means that what you eat is high-fat and low-carbohydrate and the amount of protein in the diet is tightly controlled.

It is sometimes used for those who haven’t done well taking medication. It’s a fairly complicated diet which is only used when you are under the supervision of both a neurologist and a specialist dietician.

Although the exact way the diet works is not known, the diet alters the body’s metabolism by replacing glucose with fats as a major energy source. The broken down fat produces ketone bodies, and it is these that are thought to help to alleviate seizures. Ketones are natural substances found in the blood and urine and are formed from the breakdown of fats.

The diet has to be worked out exactly for each individual person. There are now newer alternative diets as well. One is the ‘modified Atkins’ diet, and another is the low glycaemic index (or low GI) diet.

You can learn more about these diets if you visit:
www.matthewsfriends.co.uk but remember, you can only go on these diets with the agreement of your doctor.