In Australia, approximately 14,000 people are diagnosed with epilepsy each year [i] 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 still continue to have seizures despite treatment. This is often called medication or drug resistant 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 very much affect one’s quality of life. Despite the introduction of many new anti-seizure medications in the last 20-30 years, there is still the same proportion of people with epilepsy that continue to have medication resistance. [iii]
However if your seizures are continuing it does not always mean 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 your 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
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]
Why is it important to recognise medication resistant epilepsy?
People with medication resistant epilepsy not only have ongoing seizures but also are affected in other ways and can have poorer quality of life. They may face other issues such as under-education or learning difficulties, under-employment 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 other treatments that might be effective, such as surgical or dietary therapies.[v]
People with medication resistant epilepsy should seek an opinion from an epilepsy specialist to discuss possible alternative treatment options.
Let’s talk about medication
Medication is the mainstay of epilepsy treatment. It is the first line of therapy. The aim of medical epilepsy medication is to stop all seizures with the lowest dose and the least amount of 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 unwanted 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 at the same time,
- Different medication side-effects,
- More 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
What to do if seizures don’t respond to medication
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 glycaemic 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.
Lifestyle
While seizures cannot fully be prevented by lifestyle changes alone, improving your health, wellbeing and quality of life, can help with improving seizure control. Each person’s circumstances need to be taken into consideration when selecting the appropriate management strategy.
Click here to read more about self management and lifestyle changes.
Factsheet – Drug Resistant Epilepsy
Ask an Expert Series with LivaNova
Listen to some experts in the epilepsy field answering some of your questions about medication resistant epilepsy. Go to our Video page to view the interviews.
Many thanks to LivaNova for their support in making our Ask the Expert series possible.
[i] Deloitte. (2020) The economic burden of epilepsy in Australia https://www2.deloitte.com/au/en/pages/economics/articles/economic-burden-of-epilepsy-australia.html
[ii] Kwan, P., Arzimanoglou, A., Berg, A. T., Brodie, M. J., Allen Hauser, W., Mathern, G., … & French, J. (2010). Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies.
[iii] Krauss, G. L., & Sperling, M. R. (2011). Treating patients with medically resistant epilepsy. Neurology: Clinical Practice, 1(1), 14-23.
[iv] Oto, M. M. (2017). The misdiagnosis of epilepsy: appraising risks and managing uncertainty. Seizure, 44, 143-146.
[v] Krauss, G. L., & Sperling, M. R. (2011). Treating patients with medically resistant epilepsy. Neurology. Clinical practice, 1(1), 14–23.
Engel J., Jr (2016). What can we do for people with drug-resistant epilepsy? The 2016 Wartenberg Lecture. Neurology, 87(23), 2483–2489.
