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Intractable epilepsy is a type of seizure disorder that is difficult to control. The condition causes recurrent seizures, which are difficult to control with medication. Intractable seizures may not respond to medication or may cause side effects that are intolerable or interfere with the person’s quality of life.
Seizures are caused by abnormal electrical activity in the brain. The brain is made up of nerve cells (neurons) that send electrical messages across connections (synapses) to other nerve cells. In someone with intractable epilepsy, clusters of nerve cells in the brain malfunction and send out abnormal electrical signals. This causes other nerve cells to fire off abnormal signals at the same time, which leads to a seizure.
What Happens in Intractable Epilepsy?
There are two stages of intractable epilepsy. During the first stage, you may experience seizures that aren’t controlled by medication. This may happen even if you are taking several medications at once. In this stage, you may also be a candidate for surgery or other treatments to get rid of your seizures completely.
In the second stage of intractable epilepsy, you will not respond to any treatments — even surgery or other radical procedures — and continue to have seizures. You can still live a healthy life in this stage if you work with your doctor to manage your condition.
How Is Intractable Epilepsy Diagnosed?
There are several ways that a doctor can diagnose intractable epilepsy. One of the first steps in diagnosing intractable epilepsy is to rule out any other potential causes of the seizures. For example, it’s important to test for conditions like electrolyte imbalances and brain tumors, which can cause seizures. The doctor will also likely look for signs of other neurological problems, such as aneurysms and stroke. Intractable epilepsy is often caused by a lesion in the brain, so doctors will perform a cerebral angiogram to look for abnormal blood vessels which may be feeding an area that’s causing seizures.
When these other issues have been ruled out, the patient will likely undergo an electroencephalogram (EEG), which is a test that checks for electrical abnormalities in the brain. The EEG will also let doctors know if there are any abnormalities in the rhythm of the brain waves that aren’t necessarily causing seizures at that moment.
There are other tests your doctor may use as well to determine if you have intractable epilepsy, including magnetic resonance imaging (MRI) and positron emission tomography (PET). These tests help your doctor see if you have abnormal brain activity outside of epileptic events.
How Is Intractable Epilepsy Treated?
The treatment for intractable epilepsy will be based on the type of epilepsy the patient has, but in general, most treatment plans include both medication and surgery. The first-line medications used in the treatment of intractable epilepsy are anticonvulsants. These drugs are often prescribed with the goal of reducing seizures and controlling symptoms such as memory problems and mood swings. In some cases, an anticonvulsant may only be used to help reduce seizures or control pain.
Treatment may also include the use of other medications to help with secondary symptoms or other problems that result from having intractable epilepsy. For example, if a patient has depression or mood swings, antidepressants might be used in addition to anticonvulsants. Patients with intractable epilepsy should also consider lifestyle changes, such as managing stress and getting regular exercise.
If medications do not successfully manage the symptoms of intractable epilepsy, then surgery may be considered as a viable option for treatment. It is important to note that not all patients with intractable epilepsy can benefit from surgical intervention with regard to an improvement in their seizure control. The most common form of surgery used in the management of intractable epilepsy is known as temporal lobe resection surgery (TLRS).
Treatment often involves a combination of approaches including but not limited to the following:
–Pharmacotherapy: antiepileptic drugs (AEDs) are the mainstay for seizure control in patients with intractable epilepsy.
The choice of AED depends on the type of seizures, patient age, comorbidities, drug interactions, and adherence.
–Neurosurgery: Many patients with intractable epilepsy also have seizures arising from eloquent brain regions that are crucial for speech, sensory function and motor control among other functions. A lobectomy or other surgical procedures may be considered to prevent brain damage due to seizure activity particularly when pharmacotherapy fails to achieve freedom from seizures.
–Electroencephalography (EEG): EEG is useful for diagnosing seizure types and epileptogenic foci as well as guiding surgery.
–Cognitive behavioral therapy (CBT): CBT has been found to be effective in reducing seizure frequency.
How Can Parents Help?
Parents can help their children having Intractable Epilepsy by helping them feel normal. Most of the time, children with epilepsy do not need to be treated any differently than other children. However, there are some simple steps you can take to keep your child safe, both at home and in public.
Here are some safety tips:
– Install smoke detectors and learn how to use a fire extinguisher. Make sure everyone in the house knows how to escape in case of fire.
– If your child has frequent seizures, consider putting a fence around your pool or removing it from your property.
– If you have stairs in your home, install gates at both the top and bottom of the stairs, even if your child isn’t crawling yet. Consider placing bumpers on sharp edges of furniture to minimize injury.
– If your child’s condition isn’t something you discuss publicly, you may be surprised at how willing friends and family members are to help if they know about it. You might get offers of assistance from people who don’t quite understand the situation, but who are sincere in their desire to help.
– Look for local support groups for parents of children with intractable epilepsy or rare diseases like Angelman Syndrome or Dravet Syndrome, which often include intractable epilepsy. Being around others who understand what you’re going through can offer comfort and insight into dealing with the disease and its effects on your family life.
What Else Should I Know?
Intractable epilepsy is a serious problem, and it’s unlikely to go away on its own. Even in best-case scenarios, it usually requires years of medication trial and error before the seizures stop.
Intractable epilepsy can also cause other problems that are unrelated to seizures. For example:
Anticonvulsant medications can cause cognitive problems (such as memory loss), kidney and liver damage, weight gain, osteoporosis and other health issues.
Some people with intractable epilepsy develop depression because the condition is so disruptive to their lives.
People with severe intractable epilepsy sometimes have trouble driving or holding down a job. This can lead to financial strain and isolation from others, causing further emotional distress.
If you have intractable epilepsy, you’re not alone. Nobody expects you to handle it by yourself. But there are some things you can do to make your life easier:
Find a neurologist you like and trust, and stick with him or her as long as possible. Your neurologist will get to know your case well and understand the unique challenges you face due to your condition.
Keep records of your seizures — when they happen, how long they last, what happens before/during/after them — so your doctor can give you medication.
