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“I have intractable epilepsy,” shared one MyEpilepsyTeam member. “Meds since age 13, and two neurosurgeries later, still having seizures at age 59.” Drug-resistant epilepsy (DRE) is sometimes described as intractable, uncontrolled, severe, or refractory epilepsy. DRE is diagnosed when seizures remain uncontrolled after failing two appropriately chosen and tolerated anti-seizure medications (ASMs).
If you or your child has DRE, it can be hard to predict when the next seizure will happen. While intractable epilepsy can be difficult to treat, it’s not always impossible. Keep reading to learn more about DRE and how it’s managed and treated.
People with DRE can experience uncontrolled seizure symptoms, such as:
The main sign of DRE is that medications can’t control how often seizures occur or how severe they can be.
Studies show that a large proportion of people with epilepsy don’t have their seizures controlled by ASMs, according to a 2021 review. In the studies reviewed, about 25 percent of children and 15 percent of adults diagnosed with epilepsy had DRE.
DRE isn’t a specific seizure disorder, which makes it difficult to predict who’ll have it. However, it’s more common in certain groups. Studies show that children have a higher risk of DRE if they have the following risk factors:
In contrast, studies show that people with genetic generalized epilepsy (GGE) have a lower risk of DRE. GGE is a subtype of general epilepsy that includes conditions like childhood and juvenile absence epilepsy, juvenile myoclonic epilepsy, and epilepsy with generalized tonic-clonic seizures alone.
Since intractable epilepsy isn’t a specific type of epilepsy, the seizures can look different from person to person. There are two main types of seizures — generalized and focal.
People with focal seizures may be more likely to develop intractable epilepsy than people with generalized seizures.
DRE is diagnosed using tests similar to those used for diagnosing other forms of epilepsy, such as MRI scans and electroencephalograms (EEGs). You may see an epilepsy specialist, called an epileptologist or a neurologist, at an epilepsy center.
Your doctor may ask questions to find out why your medication isn’t working. For example, your medication might be interacting with other medications, or you might be using the wrong drug, taking the wrong dose, or not taking it regularly. Other reasons for inadequate treatment might include exposure to seizure triggers such as flashing lights, illness, lack of sleep, or increased stress.
DRE is typically diagnosed after two suitable ASM trials fail. A MyEpilepsyTeam member described their experience: “I have tried eight or nine medications and was only able to tolerate three of them without terrible side effects, and those haven’t been able to control my seizures.” If you still have seizures after trying two ASM regimens, seeing an epilepsy center early can help you get specialized treatment faster.
Additionally, your doctor must rule out other conditions that can mimic seizures, including:
Finding the right treatment may be difficult, but there are several options available for people with DRE. One MyEpilepsyTeam member shared, “Given my 32 years of experience living with intractable epilepsy, I have seen that it’s trial and error for effective treatment and management.”
Before trying more invasive treatments, your doctor may suggest changing or adding new ASMs, formerly referred to as antiepileptic drugs or anticonvulsants, to your treatment plan. These drugs can be used alone or in combination with other medications. ASMs work by controlling the electrical activity in your brain. Different types of ASMs do this in different ways, such as affecting the movement of ions or chemical messengers in your brain.
If you’ve already tried two ASMs and they didn’t work, there’s a lower chance that a third drug will be effective in treating DRE seizures. In that case, your doctor may recommend other, more invasive DRE treatment options.
Your doctor may recommend a type of surgery called resective epilepsy surgery to remove the part of your brain causing seizures. This procedure can be helpful if doctors know the exact area of the brain that’s causing the seizures.
A corpus callosotomy can also be effective in reducing seizures. During this procedure, a surgeon cuts the nerve fibers that connect the two halves of the brain, called the corpus callosum. This type of surgery may be offered to those with generalized seizures that affect both sides of the brain and don’t respond to medications.
Laser interstitial thermal therapy (LITT) is a minimally invasive surgery that uses heat to destroy brain tissue or cells that are causing seizures. LITT is becoming more common for treating people with DRE.
For people who can’t or don’t want to have brain surgery, electrical stimulation may be an option. This type of therapy involves implanting a device in your body that uses electrical activity to reduce seizures.
Options for electrical stimulation include vagus nerve stimulation (VNS), in which a device placed in the chest sends regular pulses of electrical energy to the brain through the vagus nerve in the neck. Other options, such as deep brain stimulation and responsive neurostimulation (RNS), use electrodes implanted in the brain to try to reduce the number of seizures you have.
Some people with epilepsy caused by problems related to metabolism (the way the body turns food into energy) may benefit from special diets. For example, people who have trouble getting glucose to their brain (known as GLUT1 deficiency) may do better on a high-fat, low-carbohydrate diet like the ketogenic diet or the modified Atkins diet. A low glycemic index treatment (LGIT) diet, which limits foods that cause rapid spikes in blood sugar, may also help manage drug-resistant epilepsy. If you or your child is making significant dietary changes, it’s important to do so under the guidance of your health care team.
If you have a type of vitamin-dependent epilepsy, your doctor may recommend supplements such as pyridoxine (vitamin B6) to manage the condition.
Children and adults who aren’t seizure-free may need extra support. DRE may change or get worse over time. “I have intractable epilepsy. For many years, I just had the odd tonic/clonic seizure. For the last 20 years, they’ve changed in seizure frequency and type,” one MyEpilepsyTeam member said.
Unfortunately, the life expectancy of people with DRE may be lower than that of people without DRE. Sudden unexpected death in epilepsy is higher in people with more symptoms of epilepsy. Ways to reduce this risk include getting seizures under control by taking medications as prescribed and following up closely with your medical team.
Even with treatment, DRE can have negative consequences, including:
Talk to your healthcare team about the goals of your epilepsy treatment options. Together, you can find an epilepsy treatment that improves your quality of life with as few side effects as possible. You might also consider joining a clinical trial studying a new treatment for DRE.
On MyEpilepsyTeam, people share their experiences with epilepsy, get advice, and find support from others who understand.
Do you have drug-resistant epilepsy? Let others know in the comments below.
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Is Refractory Epilepsy The Same As Intractable Epilepsy?
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I've got a vns plus I take 4 drugs. It seems to cycle throughout my life at times I have fewer at other times I have lots of breakthrough seizures. Than they stop and I have a breather. No time limit… read more
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