In Australia, approximately 14,000 people are diagnosed with epilepsy each year and around 250,000 people are currently living with epilepsy. What many people don’t know is that about 1 in 3 people with epilepsy continue to have seizures despite treatment. This is called medication or drug-resistant epilepsy (DRE).
What is drug resistant epilepsy?
DRE is when seizures are not fully controlled after trying two appropriately prescribed anti-seizure medications and used for an amount of time as determined by the specialist.
Living with drug-resistant epilepsy can be a significant burden and can greatly impact quality of life.
The effects of drug resistant epilepsy
It may not be drug resistant. If your seizures are continuing despite taking anti-seizure medication, it does not always mean you have drug resistant epilepsy. Sometimes there are other reasons for poor seizure control.
Medication is the first step
When you are diagnosed with epilepsy, medication is the first treatment. The aim of anti-seizure medication is to get the best seizure control with the lowest dose and the least amount of unwanted side effects. The neurologist will choose a medication that is appropriate for your type of epilepsy.
When seizures don’t respond to medication, what’s next?
People with drug resistant epilepsy often experience:
- Frequent medication changes,
- Taking two or more medications at the same time,
- Unwanted medication side-effects,
- More frequent visits to the doctor, emergency department or hospital
Studies show that adding more medication is not likely to control this kind of epilepsy.
What to do if your seizures don’t respond to medication
Firstly, if you haven’t already done so, get a referral to a specialist epilepsy centre
There you will see an epilepsy specialist who may be able to:
- Suggest a more appropriate medication or trial a newer epilepsy medication
- Investigate if epilepsy surgery is a possible option. Some epilepsy types are suitable for surgery to help control or stop seizures
- Find out if vagal nerve therapy is an option. Vagus nerve stimulation (VNS) is a pacemaker-like device implanted in the chest to manage seizures that do not respond to medication or when surgery is not possible
- Consider dietary therapies. Examples of diets currently being used are the ketogenic diet, Modified Atkins Diet, or low glycemic diet.
- Discuss any lifestyle changes that may help.
There is no single treatment that works for everyone. Individuals can respond differently to medications and various treatment strategies.
If you have trouble with seizure control, seeing an epilepsy specialist is a good step to finding out what other treatment options may be suitable for your type of epilepsy.
Medication alone isn’t the answer for 1 in 3 people with epilepsy.
Other treatment options after medication failure
Epilepsy Surgery
Epilepsy surgery offers a chance to be seizure-free or have fewer seizures. Surgery may also allow antiseizure medications to be reduced – although ongoing medication is often necessary. This will depend on your circumstances. Only a small number of people are suitable for epilepsy surgery.
Listen here to neurosurgeon Dr Erica Jacobsen answer questions about epilepsy surgery.
Speak with your doctor about surgery as an option for you.
Vagus Nerve Stimulation (VNS Therapy™)
VNS Therapy™ is used for children and adults with focal and generalised seizures with DRE. It is a form of neuromodulation that offers another way to manage seizures and has been proven to be safe and effective.
The VNS Therapy™ System includes a pulse generator that is implanted under the skin and connected via leads to the left vagus nerve in the neck. The generator sends mild pulses through the vagus nerve to the brain.
VNS Therapy™ can lead to fewer and shorter seizures and better recovery after seizures. It can also lead to improvement in alertness, mood, memory, energy levels and general quality of life.
For more information go to What is VNS Therapy™
Dietary Therapies
Dietary therapies have long been used to control seizures in people with severe epilepsies and DRE. The dietary therapies used today are all low in carbohydrates and high in fat.
The classic ketogenic diet was the original epilepsy diet developed for children however it is also used in adults. The modified Atkins diet is a less restrictive diet that helps with seizure control in adults and children. Other diets include the Low Glycemic Index Treatment & Medium-Chain Triglyceride diet
Always speak to your doctor about any treatment changes you are considering & do not start any dietary treatment for epilepsy without advice. These diets are to be closely monitored & you need medical supervision.
DRE poses many challenges and despite the introduction of many new antiseizure medications over the last 30 years, the number of people with DRE has not lessened.
Poor seizure control has been associated with, increased risk of injury and death, difficulties with education and gaining employment, social isolation, anxiety and depression and consequently poor quality of life.
It is important to explore other approaches to treatment if antiseizure medication does not work. Speak to your specialist about this.
Epilepsy Clinics
Fortunately for Australians, there are comprehensive epilepsy centres in nearly every state, allowing for people with drug-resistant epilepsy to be referred to optimise their treatment plan.
It is recommended that Australians with drug-resistant epilepsy should be referred to a comprehensive epilepsy centre to gain a clearer diagnosis, review of their epilepsy and targeted management as soon as possible to improve their seizure control.
If you continue to have seizures, ask for a referral to a comprehensive epilepsy centre for review of your epilepsy as soon as possible.
To find an epilepsy centre in your state, search your state, or contact us on 1300 37 45 37 or email epilepsy@epilepsy.org.au
For more information:
Drug Resistant Epilepsy Factsheet
Listen to epilepsy experts answer your questions about drug resistant epilepsy
Funded by LivaNova Australia. Many thanks for their contribution and advice with this material.
