In Australia, approximately 14,000 people are diagnosed with epilepsy each year [i] and around 250,000 people are currently living with epilepsy. That’s over 1 per cent of the population, so chances are most people know someone with the condition.
What many people don’t know is that about 1 in 3 people with epilepsy still continue to have seizures despite treatment. This is often called medication or drug resistant epilepsy, sometimes refractory or intractable epilepsy.
According to the International League Against Epilepsy, medication resistant epilepsy may be defined as: [ii]
“When a person has failed to become and remain seizure free with adequate trials of two tolerated and appropriately chosen and used anti-seizure medication schedules (whether used as single therapy or in combination) to achieve sustained seizure freedom.”
Having medication resistant epilepsy and poorly controlled seizures can be a heavy burden and significantly affect quality of life. Despite the development of many new anti-seizure medications in the last 20-30 years, these figures have not changed and there is still the same proportion of the epilepsy population that continue to have medication resistance. Thus, there is a conclusion that medical resistant epilepsy is biologically determined and innate in some forms of epilepsy. [iii]
This does not mean that if your seizures are continuing you have medication resistant epilepsy. Sometimes there are other reasons such as:
- The diagnosis is wrong. Misdiagnosis is relatively common [iv]
- The medication is not the right choice for the seizure or epilepsy type
- Your lifestyle may be affecting your seizures (eg stress, poor sleep, alcohol) or you may not be aware of all your seizure triggers, or not avoiding them as best as you can
Why is it important to recognise medication resistant epilepsy?
People with medication resistant epilepsy not only experience frequent seizures but also are affected in other ways and can have diminished quality of life. They can face other issues such as undereducation or learning difficulties, underemployment and unemployment, social isolation and mood, mental health or psychiatric problems. They also face increased risk of other medical problems, injuries, and the possibility of seizure-related death.
Gaining seizure control is not always about medication. There are other treatments available for people with medication resistant epilepsy. Failure to acknowledge medication resistance may prevent people from seeking alternative treatments that might be effective, such as surgical or dietary therapies.[i]
People with medication resistant epilepsy should seek an opinion from an epilepsy specialist to discuss possible alternative treatment options.
Figure 1 Living with medication resistant epilepsy. Adapted from: Tang, F., Hartz, A., & Bauer, B. (2017). Drug-Resistant Epilepsy: Multiple Hypotheses, Few Answers. Frontiers in neurology. (ASD = Anti-seizure drugs)[i]
Let’s talk about medication
Medication is the mainstay of epilepsy treatment. It is the first line of therapy. The aim of medical epilepsy treatment is to stop all seizures with the lowest medication dose of the fewest number of medications (ideally just one) and with the least side effects. The neurologist will choose a medication that is appropriate for your type of epilepsy.
A typical approach goes a bit like this:
Treatment usually starts using one (appropriate) medication at a low dose, which is increased slowly, until your seizures stop or unacceptable side effects creep in. If your seizures are not controlled with this medication, or side effects are intolerable, a different one is added and the first slowly reduced and withdrawn. If your seizures are not controlled with a single medication, then another one might be added to be used in combination.
People with medication resistant epilepsy often experience:
- Frequent medication changes,
- Taking two or more medications simultaneously,
- Different medication side-effects,
- More frequent visits to the doctor, emergency department or hospital visits
All of which can take a physical and emotional toll.
With regard to medical management, clinical evidence shows that people who do not respond to two anti-seizure medications have only a small likelihood of controlling their seizures with any additional anti-seizure medications.vi
When seizures don’t respond to medication, what other options are there?
Firstly, if you haven’t already done so, get a referral to an epilepsy centre. There you will see an epileptologist – a neurologist that specialises in epilepsy. The epileptologist may be able to then:
- Suggest a more appropriate medication or some of the newer epilepsy medications
- Investigate if epilepsy surgery is a possible option. Some epilepsy types are suitable for surgery to help control or stop seizures
- Find out if vagus nerve therapy is an option. Vagus nerve stimulation is a pacemaker like device implanted to treat seizures that don’t respond to medications or when surgery is not possible. (Vagus Nerve Stimulation (VNS), Deep Brain Stimulation (DBS) and Responsive Neurostimulation (RNS) are all treatments that fall under the category of Neuromodulation. (DBS and RNS are relatively new and limited availability in Australia)
- Consider dietary therapies. The types of diets currently being used are the ketogenic diet, Modified Atkins Diet, or low glycemic diet. Usually, people on a dietary treatment will still take anti-seizure medication as well
- Discuss any lifestyle changes that may help.
There is no one treatment that’s right for everyone. People respond differently to medication and other forms of treatment. If you do have trouble with seizure control, seeing an epileptologist is a good step to finding out what other treatment options may be suitable for your type of epilepsy.
What other treatments are available?
Management strategies of medication resistant epilepsy fall into three main groups: anti-seizure medications, epilepsy surgery, and alternative treatment strategies which includes vagus nerve stimulation, ketogenic diet, and lifestyle changes. While seizures cannot fully be prevented by lifestyle changes alone, they can improve your health and quality of life, and consequently improve seizure control. For treatment purposes, each person’s circumstances need to be taken into consideration when selecting the appropriate management strategy.
Listen to Professor Patrick Kwan answering some of your questions about medication resistant epilepsy. Ask the Expert. Many thanks to LivaNova for making our Ask the Expert series possible.
Next interview in the series is with Professor Terry O’Brien.
[i] Tang, F., Hartz, A., & Bauer, B. (2017). Drug-Resistant Epilepsy: Multiple Hypotheses, Few Answers. Frontiers in neurology, 8, 301. https://doi.org/10.3389/fneur.2017.00301
Engel J., Jr (2016). What can we do for people with drug-resistant epilepsy? The 2016 Wartenberg Lecture. Neurology, 87(23), 2483–2489. https://doi.org/10.1212/WNL.0000000000003407
[i] Krauss, G. L., & Sperling, M. R. (2011). Treating patients with medically resistant epilepsy. Neurology. Clinical practice, 1(1), 14–23. https://doi.org/10.1212/CPJ.0b013e31823d07d1
[i] https://www2.deloitte.com/au/en/pages/economics/articles/economic-burden-of-epilepsy-australia.html
[ii] https://www.ilae.org/files/ilaeGuideline/Definition-of-Drug-Resistant-Epilepsy-2009-1528-1167.2009.02397.pdf
[iii] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613191/pdf/npj14.pdf
[iv] https://www.sciencedirect.com/science/article/pii/S1059131116302977
