Intractable epilepsy occurs in one-third of patients¹ with epilepsy and refers to the type of epilepsy with symptoms that can’t be controlled with medication. But what causes intractable epilepsy, and if medicine doesn’t work, how can it be managed?
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Epilepsy² is a condition that occurs when the brain changes from normal activity to cause seizures. A seizure is the main sign of epilepsy, and a person can be diagnosed with epilepsy if they have had at least two seizures.
Most seizures are short, lasting from seconds to just a few minutes. Some are even hard to notice; the person having a seizure might just seem distracted or confused or look like they're staring absentmindedly at nothing in particular. Other seizures are stronger, causing the person to fall or shake, affecting their quality of life.
Intractable epilepsy is another name for uncontrolled or refractory epilepsy. This is epilepsy that can’t be controlled through anti-seizure medications. This occurs in around a third of patients with epilepsy.
However, some debate surrounds the actual frequency of intractable or uncontrolled seizures. A patient has intractable epilepsy if two or more anti-epileptic drugs fail to prevent seizures of more than every six months in the year before the final follow-up or if the patient has had resective epilepsy surgery or callosotomy after the failure of two or more anti-epileptic medications.
As you can imagine, the variety of cases diagnosed as intractable cases is quite large. The definition of interference with quality of life can differ from patient to patient or physician to physician.
Recently, the epilepsy community has begun to hope that all patients will eventually be able to achieve no seizures and has thus proposed that the term be renamed to drug-resistant epilepsy.
This would require a person failing to become seizure-free following adequate trials of two anti-seizure medications to be diagnosed with intractable epilepsy.
Various factors can cause epilepsy. These include:
Loss of oxygen to the brain
In most people with epilepsy, the cause of their epilepsy is unknown. This is called cryptogenic or idiopathic epilepsy and occurs in 2 out of every 3 people with epilepsy.
Intractable epilepsy occurs for four main reasons:
The diagnosis is wrong
The treatment is wrong
Lifestyle factors affect seizure control
Nonresponse of seizures to treatment
Because it’s common not to know the cause of your epilepsy, it’s often challenging to diagnose or cure it. Brain scans are commonly performed in patients with epilepsy.
However, unless you have a seizure during the exam, it can be difficult to tell if the brain activity occurring at the time of the scan is what typically happens in someone with epilepsy.
As a result, misdiagnosis of epilepsy is common. In one study³, the misdiagnosis rate was as high as 26.1%, with incomplete history and misinterpretation of the EEG (electroencephalogram) results given as primary reasons for misdiagnosis.
Out of 92 patients with intractable epilepsy, 12 were diagnosed as not epileptic.
From this study, 16 of the 92 refractory patients became seizure-free when the appropriate medication was trialed. At the same time, another 25 had significant improvement following optimized treatment or surgery.
This study eventually concluded that, among the study’s participants, misdiagnosis of those with epilepsy is common, and this causes the wrong treatment to be given an alarming amount of the time.
However, it does give hope to people with intractable epilepsy that another medication routine might help prevent symptoms.
Epilepsy can be broadly grouped into generalized, focal, or both. Generalized seizures occur on both sides of the brain and usually cause the person to stare into space, collapse, or go into spasm. On the other hand, focal seizures occur in one section of the brain.
A person can also experience both generalized and focal seizures. This is the third type and is known as secondary generalized epilepsy⁴.
The symptoms of intractable epilepsy don’t differ from those with not intractable epilepsy. The difference comes from whether the seizures can be managed medically.
Intractable (or drug-resistant) epilepsy is considered unmanageable after at least two appropriate medicine trials.
Following the recommendations of this study on the misdiagnosis of intractable epilepsy, the first port of call should always be to try another anti-seizure medication regime.
However, if that doesn’t work, you may wish to consider the following alternative management options:
Know your epilepsy—have you been diagnosed appropriately?
Be certain to take medication as prescribed
Don’t take any other medications without checking with your doctor
Keep a record of seizures and try to avoid triggers
Get at least 7 to 8 hours of sleep per night
Keep a healthy diet and weight
Don’t drink alcohol excessively or abuse other substances
Lower stress levels
Get a good support network
Keep in touch with your doctor
Get help for emotional regulation
Use memory strategies for memory problems
Because intractable epilepsy isn’t managed well with medicine, it’s essential to manage the condition through lifestyle choices as much as possible. You also have the option for surgical treatment but this only works for patients with seizures in the brain’s temporal lobe.
Vagus nerve stimulation or changes to diet are two options that can also help control intractable epilepsy. These are less evidence-based treatments but have been shown to work for some patients, so if no other options have worked, these could be for you.
See a doctor as soon as possible if you’ve had a seizure (or think you’ve had one). Some causes of seizures can be traumatic for the brain; seeing what’s happening as soon as possible is crucial.
Intractable epilepsy is a form of epilepsy that can’t be managed through medication. This type of epilepsy may be common, or its prevalence may be high due to misdiagnosis because of a lack of understanding of this condition.
Thankfully, alternative management and treatment options can help to control seizures caused by intractable epilepsy.
Epilepsy | NIH: National Institute of Neurological Disorders and Stroke
Drug-resistant seizures | Epilepsy Foundation
Frequently asked questions about epilepsy | Centers for Disease Control and Prevention (CDC)
The epilepsies and seizures: Hope through research | NIH: National Institute of Neurological Disorders and Stroke
Symptoms | NHS
Managing epilepsy well checklist | Centers for Disease Control and Prevention (CDC)