Table of ContentsView AllTable of ContentsSymptomsCausesDiagnosisTreatmentCoping
Table of ContentsView All
View All
Table of Contents
Symptoms
Causes
Diagnosis
Treatment
Coping
Intractableepilepsyis diagnosed when someone has had years of uncontrolledseizures. This means medication no longer works well enough to control their episodes, and their seizures are frequent, severe, and affecting their quality of life.
Research shows that up to 40% of people who have epilepsy will eventually develop intractable epilepsy, also called drug-resistant epilepsy or refractory epilepsy. In some cases, changing to a different antiepileptic drug (AED) is all that is needed. But when that’s not enough, other treatment options includevagus nerve stimulation(VNS), the ketogenic diet, and surgery.
This article explains the criteria for diagnosing intractable epilepsy, along with what may cause it. It also covers the symptoms of intractable epilepsy, treatment options, and tips for coping when you or someone you love has intractable epilepsy.
Verywell / Cindy Chung
Symptoms of Intractable Epilepsy
Some people with intractable epilepsy may have convulsions, which means they cannot stop shaking. Seizures may also cause:
Is Intractable Epilepsy Life Threatening?Yes, intractable epilepsy can be life threatening. People with intractable epilepsy are 13 times more likely to die of epilepsy-related causes than people with controlled (seizure-free) epilepsy. About 40% of intractable epilepsy deaths are due tosudden unexpected death in epilepsy(SUDEP). People with intractable epilepsy are also more likely to die from fatal injuries during a seizure, such as drowning and suffocation.
Is Intractable Epilepsy Life Threatening?
Yes, intractable epilepsy can be life threatening. People with intractable epilepsy are 13 times more likely to die of epilepsy-related causes than people with controlled (seizure-free) epilepsy. About 40% of intractable epilepsy deaths are due tosudden unexpected death in epilepsy(SUDEP). People with intractable epilepsy are also more likely to die from fatal injuries during a seizure, such as drowning and suffocation.
What Causes Drug-Resistant Epilepsy?
Normal epilepsy drugs may not work well for many reasons, including:
Diagnosing Drug-Resistant Epilepsy
Typically, you must be diagnosed with epilepsy for a considerable amount of time before it can be labeled intractable. Your healthcare provider will consider factors such as:
Much like when you went through the initial diagnostic process for epilepsy, you can expect a variety of tests and scans once your epilepsy is declared intractable. These can include:
These scans may help your healthcare provider identify previously unknown factors that may influence future treatment decisions.
How Do You Treat Refractory Epilepsy?
Antiepileptic drugs, as single or combination treatments, are a first-line of treatment prescribed to manage seizures.When one medication does not work, another is attempted. Unfortunately, the success rate becomes reduced after numerous AED failures.
Generally, after multiple AED failures, healthcare providers will start looking at other ways to treat and manage seizures. Additional treatment options after medication failure may include lifestyle changes, VNS therapy, and surgery.
Diet Changes
According to one 2018 review, as many as 55% of children with drug-resistant epilepsy are free of seizures within three months of starting a keto diet. The results of similar studies vary, but are generally promising.
2:13The Ketogenic Diet and Epilepsy
2:13
The Ketogenic Diet and Epilepsy
The Ketogenic Diet for Epilepsy
Improving Sleep
Seizures are sensitive to sleep patterns. When people with epilepsy don’t sleep well, it is more likely they will have seizures. Lack of good quality sleep may also increase the frequency and length of seizures.
It is, therefore, important to develop consistent sleep habits, including getting at least eight hours of sleep every night, and going to bed and getting up at the same times.
How Getting Sunlight in the Morning Can Help You Sleep Better
VNS Therapy
Vagus nerve stimulation (VNS) therapy involves a small electric device, much like a pacemaker. The device is implanted under the skin of the chest and sends electrical impulses to the brain through thevagus nerve, which is in the neck. The goal of treatment is to reduce the frequency and intensity of seizures.
Surgery
Surgery in the braincan control seizures and may involve:
Surgery to treat intractable epilepsy is not for everyone. It is only an option if the part of the brain causing the seizures can be identified. Moreover, the area to be removed must not be one that affects important functions, such as speech, touch, and movement.
Intractable seizures are difficult to live with. You may not be able to drive, go to work, or take part in activities you enjoy because of your seizure risk. You may have to face considerable lifestyle changes, at least until you find treatments that reduce your seizure frequency.
It’s important to develop healthy coping strategies for multiple aspects of your life—emotional, physical, social, and practical. Anepilepsy support groupmay be helpful.
Don’t think of a diagnosis of intractable epilepsy as an endpoint. It doesn’t mean treatments won’t work for you, just that you haven’t found the right ones yet. Keep working with your healthcare provider to find something that helps.
Coping With Epilepsy
Summary
Intractable epilepsy, also called drug-resistant epilepsy, refers to epilepsy that does not respond to antiepilepsy drugs (AEDs). Up to 40% of people with epilepsy eventually develop intractable epilepsy. While the exact cause is not always known, intractable epilepsy can develop due to poor compliance to medications, genetic reasons, co-occurring conditions, or another reason.
Treatment may involve a combination of diet and sleep pattern changes, as well as specialist therapies like vagus nerve stimulation (VNS) or surgery. In many cases, intractable epilepsy can be resolved once the right treatment plan for an individual is found.
12 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Shin JW.Management strategies for refractory status epilepticus.J Neurocrit Care. 2023;16(2):59-68. doi:10.18700/jnc.230037UChicago Medicine.New treatment options for people with drug-resistant epilepsy.National Institute of Neurological Disorders and Stroke.Epilepsy and seizures.Rheims S, Sperling M, Ryvlin P.Drug-resistant epilepsy and mortality—Why and when do neuromodulation and epilepsy surgery reduce mortality.Epilepsia. 2022 Dec;63(12):3020-3036. doi:10.1111/epi.17413Johns Hopkins Medicine.Refractory epilepsy.Tomson T, Zelano J, Dang Y, Perucca P.The pharmacological treatment of epilepsy in adults.Epileptic Dis. 2023 Oct;25(5):649-669. doi:10.1002/epd2.20093Imdad K, Abualait T, Kanwal A, et al.The metabolic role of ketogenic diets in treating epilepsy.Nutrients. 2022 Dec;14(23):5074. doi:10.3390/nu14235074Martin-McGill K, Jackson C, Bresnahan R, Levy R, Cooper P.Ketogenic diets for drug-resistant epilepsy.Cochrane Database Syst Rev. 2018:11(1). doi:10.1002/14651858.CD001903.pub4Stirling R, Hidajat C, Grayden D, et al.Sleep and seizure risk in epilepsy: bed and wake times are more important than sleep duration.Brain. 2023 Jul;146(7):2803–2813. doi:10.1093/brain/awac476Nobili L, Frauscher B, Eriksson S, et al.Sleep and epilepsy: A snapshot of knowledge and future research lines.J Sleep Res. 2022 Aug;31(4):e13622. doi:10.1111/jsr.13622González H, Yengo-Khan A, Englot D.Vagus nerve stimulation for the treatment of epilepsy.Neurosurg Clin N Am. 2019 Apr;30(2):219-230. doi:10.1016/j.nec.2018.12.005Ghaffari-Rafi A, Leon-Rojas J.Investigatory pathway and principles of patient selection for epilepsy surgery candidates: a systematic review.BMC Neurol. 2020 Mar;20(1):100. doi:10.1186/s12883-020-01680-wAdditional ReadingAneja, Jain P.Refractory epilepsy in children.Indian J Pediatr. 2014 Oct;81(10):1063-72. DOI: 10.1007/s12098-014-1533-1.Krauss GL, Sperling MR.Treating patients with medically resistant epilepsy.Neurol Clin Pract. 2011 Dec; 1(1): 14–23. DOI: 10.1212/CPJ.0b013e31823d07d1.Kwan P, Brodie MJ.Early identification of refractory epilepsy.N Engl J Med. 2000 Feb 3;342(5):314-9. DOI: 10.1056/NEJM200002033420503.Sinha S, Siddiqu KA.Definition of intractable epilepsy.Neurosciences (Riyadh). 2011 Jan;16(1):3-9.Ungar A, Ceccofiglio A, Pescini F, et al.Syncope and epilepsy coexist in ‘possible’ and ‘drug-resistant’ epilepsy (Overlap between Epilepsy and Syncope Study - OESYS).BMC Neurology. 2017 Feb 28;17(1):45. doi: 10.1186/s12883-017-0822-5.
12 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Shin JW.Management strategies for refractory status epilepticus.J Neurocrit Care. 2023;16(2):59-68. doi:10.18700/jnc.230037UChicago Medicine.New treatment options for people with drug-resistant epilepsy.National Institute of Neurological Disorders and Stroke.Epilepsy and seizures.Rheims S, Sperling M, Ryvlin P.Drug-resistant epilepsy and mortality—Why and when do neuromodulation and epilepsy surgery reduce mortality.Epilepsia. 2022 Dec;63(12):3020-3036. doi:10.1111/epi.17413Johns Hopkins Medicine.Refractory epilepsy.Tomson T, Zelano J, Dang Y, Perucca P.The pharmacological treatment of epilepsy in adults.Epileptic Dis. 2023 Oct;25(5):649-669. doi:10.1002/epd2.20093Imdad K, Abualait T, Kanwal A, et al.The metabolic role of ketogenic diets in treating epilepsy.Nutrients. 2022 Dec;14(23):5074. doi:10.3390/nu14235074Martin-McGill K, Jackson C, Bresnahan R, Levy R, Cooper P.Ketogenic diets for drug-resistant epilepsy.Cochrane Database Syst Rev. 2018:11(1). doi:10.1002/14651858.CD001903.pub4Stirling R, Hidajat C, Grayden D, et al.Sleep and seizure risk in epilepsy: bed and wake times are more important than sleep duration.Brain. 2023 Jul;146(7):2803–2813. doi:10.1093/brain/awac476Nobili L, Frauscher B, Eriksson S, et al.Sleep and epilepsy: A snapshot of knowledge and future research lines.J Sleep Res. 2022 Aug;31(4):e13622. doi:10.1111/jsr.13622González H, Yengo-Khan A, Englot D.Vagus nerve stimulation for the treatment of epilepsy.Neurosurg Clin N Am. 2019 Apr;30(2):219-230. doi:10.1016/j.nec.2018.12.005Ghaffari-Rafi A, Leon-Rojas J.Investigatory pathway and principles of patient selection for epilepsy surgery candidates: a systematic review.BMC Neurol. 2020 Mar;20(1):100. doi:10.1186/s12883-020-01680-wAdditional ReadingAneja, Jain P.Refractory epilepsy in children.Indian J Pediatr. 2014 Oct;81(10):1063-72. DOI: 10.1007/s12098-014-1533-1.Krauss GL, Sperling MR.Treating patients with medically resistant epilepsy.Neurol Clin Pract. 2011 Dec; 1(1): 14–23. DOI: 10.1212/CPJ.0b013e31823d07d1.Kwan P, Brodie MJ.Early identification of refractory epilepsy.N Engl J Med. 2000 Feb 3;342(5):314-9. DOI: 10.1056/NEJM200002033420503.Sinha S, Siddiqu KA.Definition of intractable epilepsy.Neurosciences (Riyadh). 2011 Jan;16(1):3-9.Ungar A, Ceccofiglio A, Pescini F, et al.Syncope and epilepsy coexist in ‘possible’ and ‘drug-resistant’ epilepsy (Overlap between Epilepsy and Syncope Study - OESYS).BMC Neurology. 2017 Feb 28;17(1):45. doi: 10.1186/s12883-017-0822-5.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Shin JW.Management strategies for refractory status epilepticus.J Neurocrit Care. 2023;16(2):59-68. doi:10.18700/jnc.230037UChicago Medicine.New treatment options for people with drug-resistant epilepsy.National Institute of Neurological Disorders and Stroke.Epilepsy and seizures.Rheims S, Sperling M, Ryvlin P.Drug-resistant epilepsy and mortality—Why and when do neuromodulation and epilepsy surgery reduce mortality.Epilepsia. 2022 Dec;63(12):3020-3036. doi:10.1111/epi.17413Johns Hopkins Medicine.Refractory epilepsy.Tomson T, Zelano J, Dang Y, Perucca P.The pharmacological treatment of epilepsy in adults.Epileptic Dis. 2023 Oct;25(5):649-669. doi:10.1002/epd2.20093Imdad K, Abualait T, Kanwal A, et al.The metabolic role of ketogenic diets in treating epilepsy.Nutrients. 2022 Dec;14(23):5074. doi:10.3390/nu14235074Martin-McGill K, Jackson C, Bresnahan R, Levy R, Cooper P.Ketogenic diets for drug-resistant epilepsy.Cochrane Database Syst Rev. 2018:11(1). doi:10.1002/14651858.CD001903.pub4Stirling R, Hidajat C, Grayden D, et al.Sleep and seizure risk in epilepsy: bed and wake times are more important than sleep duration.Brain. 2023 Jul;146(7):2803–2813. doi:10.1093/brain/awac476Nobili L, Frauscher B, Eriksson S, et al.Sleep and epilepsy: A snapshot of knowledge and future research lines.J Sleep Res. 2022 Aug;31(4):e13622. doi:10.1111/jsr.13622González H, Yengo-Khan A, Englot D.Vagus nerve stimulation for the treatment of epilepsy.Neurosurg Clin N Am. 2019 Apr;30(2):219-230. doi:10.1016/j.nec.2018.12.005Ghaffari-Rafi A, Leon-Rojas J.Investigatory pathway and principles of patient selection for epilepsy surgery candidates: a systematic review.BMC Neurol. 2020 Mar;20(1):100. doi:10.1186/s12883-020-01680-w
Shin JW.Management strategies for refractory status epilepticus.J Neurocrit Care. 2023;16(2):59-68. doi:10.18700/jnc.230037
UChicago Medicine.New treatment options for people with drug-resistant epilepsy.
National Institute of Neurological Disorders and Stroke.Epilepsy and seizures.
Rheims S, Sperling M, Ryvlin P.Drug-resistant epilepsy and mortality—Why and when do neuromodulation and epilepsy surgery reduce mortality.Epilepsia. 2022 Dec;63(12):3020-3036. doi:10.1111/epi.17413
Johns Hopkins Medicine.Refractory epilepsy.
Tomson T, Zelano J, Dang Y, Perucca P.The pharmacological treatment of epilepsy in adults.Epileptic Dis. 2023 Oct;25(5):649-669. doi:10.1002/epd2.20093
Imdad K, Abualait T, Kanwal A, et al.The metabolic role of ketogenic diets in treating epilepsy.Nutrients. 2022 Dec;14(23):5074. doi:10.3390/nu14235074
Martin-McGill K, Jackson C, Bresnahan R, Levy R, Cooper P.Ketogenic diets for drug-resistant epilepsy.Cochrane Database Syst Rev. 2018:11(1). doi:10.1002/14651858.CD001903.pub4
Stirling R, Hidajat C, Grayden D, et al.Sleep and seizure risk in epilepsy: bed and wake times are more important than sleep duration.Brain. 2023 Jul;146(7):2803–2813. doi:10.1093/brain/awac476
Nobili L, Frauscher B, Eriksson S, et al.Sleep and epilepsy: A snapshot of knowledge and future research lines.J Sleep Res. 2022 Aug;31(4):e13622. doi:10.1111/jsr.13622
González H, Yengo-Khan A, Englot D.Vagus nerve stimulation for the treatment of epilepsy.Neurosurg Clin N Am. 2019 Apr;30(2):219-230. doi:10.1016/j.nec.2018.12.005
Ghaffari-Rafi A, Leon-Rojas J.Investigatory pathway and principles of patient selection for epilepsy surgery candidates: a systematic review.BMC Neurol. 2020 Mar;20(1):100. doi:10.1186/s12883-020-01680-w
Aneja, Jain P.Refractory epilepsy in children.Indian J Pediatr. 2014 Oct;81(10):1063-72. DOI: 10.1007/s12098-014-1533-1.Krauss GL, Sperling MR.Treating patients with medically resistant epilepsy.Neurol Clin Pract. 2011 Dec; 1(1): 14–23. DOI: 10.1212/CPJ.0b013e31823d07d1.Kwan P, Brodie MJ.Early identification of refractory epilepsy.N Engl J Med. 2000 Feb 3;342(5):314-9. DOI: 10.1056/NEJM200002033420503.Sinha S, Siddiqu KA.Definition of intractable epilepsy.Neurosciences (Riyadh). 2011 Jan;16(1):3-9.Ungar A, Ceccofiglio A, Pescini F, et al.Syncope and epilepsy coexist in ‘possible’ and ‘drug-resistant’ epilepsy (Overlap between Epilepsy and Syncope Study - OESYS).BMC Neurology. 2017 Feb 28;17(1):45. doi: 10.1186/s12883-017-0822-5.
Aneja, Jain P.Refractory epilepsy in children.Indian J Pediatr. 2014 Oct;81(10):1063-72. DOI: 10.1007/s12098-014-1533-1.
Krauss GL, Sperling MR.Treating patients with medically resistant epilepsy.Neurol Clin Pract. 2011 Dec; 1(1): 14–23. DOI: 10.1212/CPJ.0b013e31823d07d1.
Kwan P, Brodie MJ.Early identification of refractory epilepsy.N Engl J Med. 2000 Feb 3;342(5):314-9. DOI: 10.1056/NEJM200002033420503.
Sinha S, Siddiqu KA.Definition of intractable epilepsy.Neurosciences (Riyadh). 2011 Jan;16(1):3-9.
Ungar A, Ceccofiglio A, Pescini F, et al.Syncope and epilepsy coexist in ‘possible’ and ‘drug-resistant’ epilepsy (Overlap between Epilepsy and Syncope Study - OESYS).BMC Neurology. 2017 Feb 28;17(1):45. doi: 10.1186/s12883-017-0822-5.
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