60-70% of all people diagnosed with epilepsy will gain seizure control with antiepileptic medication. Others may find that the medication does not stop their seizures but they may be less frequent.
When seizures continue to recur even with medication other treatment options are explored. These options, along with medication are discussed in detail below:
- Anti Epileptic Medication
- Vagus Nerve Stimulation
- Diets (including the Ketogenic Diet)
- Alternative or complementary therapies
Choosing the right AED will depend on the type of seizures, age, gender and many other individual factors. That is why observation is so important when diagnosing a seizure. The aim of treatment with AEDs is to completely control seizures without side effects. If this is not possible, the goal is to reduce the frequency or intensity of seizures with the least possible side effects. Taking a single drug [monotherapy] is preferable. If the drug of choice doesn’t control seizures, or if unwanted side effects occur, then a second drug may be tried and the first is usually withdrawn. Only when seizures are resistant to single drug therapy should a combination of drugs [polytherapy] be necessary
For a list of the common AED’s used in Australia please see the Royal Children’s Hospital (Melbourne) website.
Commencing medication does not always mean that it must be taken for life. Regular medical reviews are recommended and many people need medication for a limited time, usually a few years.
Click here for more information on AED’s.
Seizure control is the best indication that your medication is working. Poor seizure control may indicate that your current dose may need adjusting. One way, especially with the older drugs, that your doctor can establish how much medication you need is to measure how much of it is present in your blood. Other blood tests that check major organs such as liver and kidneys as well as bone marrow can also be performed. Poor seizure control may also indicate that your current medication is not working effectively and your doctor may want to change it.
Generic Drug Warning
A generic drug is a drug based on a branded product but made by a different manufacturer. Often pharmacies will offer you the option of a cheaper alternative to the prescribed brand, these are known as generic drugs. Research suggests that the very small difference between the two drugs (your prescribed drug and the generic brand drug) may cause problems with people who have epilepsy if they are switching from one to the other. Whilst the chemicals in both drugs are the same there can be a alight variation due to the manufacturing processes, for the vast majority of drugs this has no impact on the person taking the medication. However due to the way AED’s work even the slightest variation in the drug can cause problems and increased side effects.
Most tablets have unwanted side effects for some people. These can be the result of interactions with other medications, both over-the-counter medications and prescription medications. Side effects can occur when you have other illnesses that are exacerbated by the particular antiepileptic medications you are using. Side effects can also be experienced or worsened because you are not taking the tablets you have been prescribed in the way the doctor asked you to take them. For example missing tablets and taking extra doses to try to make up for what you have missed can be a disaster.
However, the most common reason for side effects is simply the interaction of your chemistry and that of the medications you are taking. While we are all different, many of the medications prescribed for us over our lifetime will be well tolerated. Yet a significant number of us will eventually find ourselves taking a tablet that does not agree with us – in other words being confronted by unwanted side effects. Fortunately, with antiepileptic medications, most disappear after the first few weeks of therapy and serious side effects are uncommon. Unwanted effects may include drowsiness/fatigue, insomnia, nausea, and weight gain, vision changes and unsteadiness and rash. Some medications may also affect emotions, behaviour, memory or the learning abilities of children. Of course some side effects are quite good. Weight loss can be seen as good, even if unintended, while weight gain is usually seen as an unwanted side effect.
Some side effects however go on for too long and show no signs of lessening. Some are especially unpleasant or severe and should not be tolerated at all. When you start taking a new medication your doctor should tell you what side effects to look out for and when to become concerned. Some reactions will require immediate attention such as allergic rash. It is important that you are aware of what might go wrong. You should read the product information sheet that is now packaged with most medications or your local epilepsy counsellor can give you a list of side effects. This is not the same as looking for trouble. It is about being sensible and not keeping things hidden that your doctor would want to know about.
Most side effects can be overcome and many will simply go away of their own accord, but some are rather more serious and you should discuss any concerns at all with your health professional. They will often be able to put your mind at rest and you will be pleased that you asked and saved yourself unnecessary worry and stress, both of which can add to the difficulty of gaining full control of seizures.
It is important to know your medication, its brand name, prescribed strength and dose, and be aware of possible unwanted effects. Open discussion with your doctor about what to expect from your medication and the impact of any side effects and seizures on your quality of life is the best way to manage drug therapy.
Taking your medication as prescribed is the cornerstone of your treatment therapy. Changes to your dose should only be made in consultation with your doctor as too much medication can lead to unwanted effects while too little medication can increase seizure frequency. It is important that you take your medication at the specified time/s each day while taking your medication with fluids and with food will avoid heartburn or indigestion.
The following strategies may help you to remember to take your medication at the required times:
- Take your medication as part of your daily routine, such as just before bed or with your breakfast in the morning, maybe when you are cleaning your teeth.
- Keep your tablets on top of your pillow or in the kitchen, somewhere you know you frequent often.
- Set a reminder on your digital watch or in your phone
We can all miss doses, however missed doses can lead to increased seizures. Antiepileptic medications vary in the way they are absorbed, processed and stored in the body. Neurologists now agree that you should take the missed dose as soon as you realise you have missed a dose, even if this isn’t until the next does is due. That is, you should catch up. The risk of this is minor overdosage, the symptoms of which are not serious and will last no more than a couple of hours, while the risk of not doing so is a seizure. Make sure you discuss this with your doctor. Better still, don’t miss a dose.
Important things to remember when taking AED’s:
- Usually AED’s are started slowly with the dose gradually increasing
- Talk to your doctor inf you are experiencing strong side effects
- Never give your medication to anyone else, nor should you try another persons medication
- Keep your medication in a cool, dry place our of each of children
- Keeping adequate supplies of your medication on hand and a spare prescription at home or with your chemist will save you from running out at an inconvenient time
- Throw away any medication you are no longer using or take them to a pharmacy for safe disposal
- Other medications may interact with your AED’s causing an increase in seizures or unwanted side effects. Always discuss with your doctor, dentist or pharmacist even when buying over-the-counter medications.
- Alcohol does not mix with some AED’s and may trigger a seizure, check with your doctor before you consume alcohol
- Vomiting and Diarrhoea can alter the level of medication in your bloodstream
- Never suddenly stop your medication, it can lead to an increase in seizures as well as putting yourself at risk of status epilepticus (prolonged seizures) which can result in brain damage or death.
Epilepsy is sometimes caused by an area of abnormal brain tissue. There are many reasons why an abnormality occurs and it may be unimportant unless it causes seizures. The size and position of the area, referred to as the epilepsy focus, varies between individuals. If surgery can remove the epilepsy focus, seizures can often be prevented. The chance of successful surgery and the risks of complications differ for each patient.
Surgery is usually only used where medication fails and is not intended to be a substitute for medication. If surgery is considered to be a possible treatment for your epilepsy, several months of extensive testing and counselling are undertaken before surgery is performed. Your doctors will then discuss with you, the possible outcomes from surgery in your case, so that you can make an informed choice.
Vagus Nerve Stimulation
Vagus nerve stimulation (VNS) is a treatment for uncontrolled epilepsy. VNS reduces the frequency and severity of epileptic seizures with the insertion of a pulse generator, similar to a heart pacemaker, under the skin on the chest that sends intermittent electrical signals to the brain by stimulating the left vagus nerve in the neck. The pulse generator is programmed to stimulate in two ways. It is individually programmed to automatically stimulate in the background, typically ON for 30 seconds and OFF for 3 minutes. It is not fully understood how VNS works, but the theory is that the VNS over time modulates nerve pathways involved in seizures.
Implanting a vagus nerve stimulator is generally only considered if antiepileptic drugs are not controlling the seizures satisfactorily and other surgical options have been ruled out. The operation to implant a vagus nerve stimulator takes approximately two hours with the device implanted under the skin just below the left collar bone or close to the armpit.
Not all types of epilepsy will respond to this treatment. While results are mixed, there seems to be a significant number of people with this device whose seizure frequency has reduced radically or whose seizures have stopped altogether. Your neurologist can determine if this treatment is an option for you.
The Ketogenic diet is a strict, medically supervised diet that may be a treatment option for some children with epilepsy. It involves a restricted fluid, high fat and very low carbohydrate and protein diet that ensures the body will burn fat rather than carbohydrate and protein for energy, thus producing ketones. In some ways, the diet mimics the bodys metabolic state during fasting or illness. This high ketone state (ketosis) decreases seizure activity in some circumstances by mechanisms, which are not fully understood. The diet deliberately maintains this build up of ketones by a strictly calculated, individual regimen with rigid meal plans.
The ketogenic diet is not a “natural therapy”. Less is known about the beneficial and adverse effects of the ketogenic diet than other treatments for epilepsy eg. antiepileptic medications, surgery. The ketogenic diet has not been subjected to the usual clinical trials that establish efficacy and safety of a treatment for a medical condition.
The ketogenic diet is generally only suitable for children with poorly controlled seizures. Assessment by a paediatric neurologist experienced in epilepsy management and monitoring of the diet and drug therapy is a prerequisite. Generally, young children with mixed myoclonic seizure disorders are thought to respond best to the ketogenic diet. Some centres have reported success with adult patients and patients with other epilepsies.
For more information about the Ketogenic Diet visit the Epilepsy Queensland website.
Modified Atkins Diet
The Modified Atkins diet is a special high-fat diet that is used for difficult to treat seizures. Heavy cream, butter and vegetable oils provide the necessary fat. The diet allows all protein rich foods such as meat, chicken, eggs and fish. It completely eliminates sweets such as lollies, biscuits and desserts. Other carbohydrate rich foods such as bread, potatoes, rice, pasta and cereals are not allowed in the first month on the diet then may be introduced later.
The Modified Atkins Diet is less restrictive than the Ketogenic Diet. It allows unlimited amounts of protein foods and fats are encouraged.
Children and teenagers with uncontrolled seizures may be helped by the diet. There is no way to predict beforehand whether it will be successful. Children with feeding tubes and infants should be commenced on the Ketogenic Diet as there is a special formula designed for this purpose.
Information from Epilepsy Queensland. For more information on the Modified Atkins diet click here.
Alternative or Complementary Therapies
Complementary therapies may assist a person with epilepsy by improving overall health and wellbeing. However, research does not suggest that complementary therapies are likely to improve seizure control in most cases. In some situations they have been shown to trigger seizures.
If you believe that using a complementary therapy in conjunction may be of benefit, discuss this with your doctor. It is recommended that you do not stop you antiepileptic medication unless advised to do so by your doctor.
Source: Epifile: An Epilepsy Management Manual. Epilepsy Australia Ltd. Updated June 2013 and the Epilepsy Australia Webpage.
All information contained within this page is to the best of our knowledge accurate and useful. It is not meant to substitute direct contact with your local health professionals.