Symptoms
The main symptoms of intractable epilepsy are continuing seizures even when taking anti-seizure drugs. Seizures will vary in intensity and frequency and can last minutes or seconds. They are caused by electrical imbalances in the brain and hyperactive neurons.
Some people with intractable epilepsy may have convulsions, which means they cannot stop shaking. Seizures may also cause:
BlackoutsLoss of bladder or bowel controlStaring into spaceFallingStiff musclesBiting the tongue
Causes
Normal epilepsy drugs may not work well for many reasons, including:
The seizures simply become stronger than the medication when given at medically safe dosage. Poor compliance with medication (missing doses) Complicating factors, such as extreme stress, sleep deprivation, and illness Additional medical conditions, including syncope (a temporary loss of consciousness related to insufficient brain blood flow): Evidence shows that the two conditions are often confused, but there are instances of people having both conditions. One study reported in BMC Neurology found that up to 41. 1 percent of those with epilepsy had drug-resistant epilepsy, and of those, 65. 9 percent had both syncope and epilepsy. Brain abnormalities Genetic causes Medication tolerance: In this case, a medication generally works for a few months and then symptoms return. The cycle will repeat with a new medication. Medications just don’t help some people: Some people may need more than one medication to control seizures, but those additional medications don’t always stop seizures altogether.
In some cases, side effects were to blame, and patients had to discontinue treatment, and in other cases, the drugs themselves were not successful.
Diagnosis
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:
How often you have seizuresHow well you’ve stuck to your treatment regimenIf you still have seizures when properly medicated
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:
Electroencephalogram (EEG) Computerized tomography (CT) scan Magnetic resonance imaging (MRI)
These scans may help your healthcare provider identify previously unknown factors that may influence future treatment decisions, which may involve surgery or an implant.
Treatment
Antiepileptic drugs (AEDs), 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
Some research has shown the ketogenic diet may lessen the number of seizures for some people. This diet is a high-fat, low-carbohydrate one that involves strict monitoring by a dietitian. It usually prescribed for children whose seizures are not responding to medications.
One study reported in the Iranian Journal of Pediatrics shows a success rate of 58.4 percent in children whose epilepsy was previously not well-managed with medication.
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.
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 the vagus nerve, which is in the neck. The goal of treatment is to reduce the frequency and intensity of seizures.
Surgery
Surgery in the brain can control seizures and may involve:
Implanting a device to treat seizuresRemoving the area of the brain causing seizuresDisrupting nerve pathways that promote seizure impulses
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.
Coping
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.
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.
A Word From Verywell
Intractable epilepsy does not always remain medication-resistant. One of the many available treatments may help you manage your symptoms. Additionally, you may benefit from improving your lifestyle. Even without new or specific therapies and/or lifestyle changes, some people’s epilepsy does improve and can eventually be managed by medicine.
