Around 50 million people in the world suffer from epilepsy, and 80 percent live in low and middle-income countries. According to the WHO, 70 percent of people living with epilepsy could live seizure-free if diagnosed and treated properly. In low-income countries, about three-quarters of people with epilepsy may not receive the treatment they need, and it is estimated that in about one-third of cases, epilepsy fails to quickly come under control. This form of epilepsy is termed as refractory seizures. These seizures, otherwise known as uncontrolled epilepsy diagnosis and treatment can be done with seizure medications. The true number of people affected by this form of epilepsy depends on the definition of uncontrolled epilepsy.
What Can Be Termed As Refractory Epilepsy or Uncontrolled Epilepsy: Diagnosis?
Out of the total global burden of the disease, almost 30 to 40 percent of people suffer from uncontrolled epilepsy. Refractory epilepsy is also termed as drug-resistant epilepsy and as per the International League Against Epilepsy, if taking at least two medicines, in combination or separately hasn’t controlled epilepsy, the patient is said to have drug-resistant epilepsy or medically resistant epilepsy. A patient is far more likely to develop drug-resistant epilepsy if the specialist has already tried two medications unsuccessfully. Only 5 to 15 percent of patients tend to respond to the third or fourth medication. When a patient is not taking medicines regularly as prescribed by the specialist or stops them in between, it is termed as non-compliance and cannot be classified as drug-resistant epilepsy.
With about 15-20 percent of the patients, there are possibilities of a misdiagnosis, and their seizures are likely to be non-epileptic seizures or psychogenic non-epileptic seizures. It is also likely that the patients are being treated with carbamazepine (CBZ), a drug that may increase or induce seizures in patients with primary generalized epilepsy or JME. These patients are not drug-resistant to epilepsy medication, but proper diagnosis syndromic, diagnosis appropriate medication, was not chosen by the specialist. Dosage of epileptic drugs is especially important, as the low or high dosage may lead to a different reaction, and cannot be termed as drug resistance as it is actually inappropriate use of medication. Lifestyle factors like alcohol overuse may lead to withdrawal-related seizures, and cannot be termed as true pharmco-resistance.
Other cases that cannot be termed as drug-resistant epilepsy may include drug failure due to efficacy issues like drug allergy. A patient exhibiting status epilepticus in the first diagnosis is more likely to be drug-resistant, and patients with idiopathic relentic epilepsy and benign rolandic epilepsy are more likely to have a better prognosis. Comorbidities can also have an effect on how the patient reacts to certain drugs. These cases must be ruled out to ensure that a patient is accurately diagnosed with drug-resistant epilepsy. There are many side-effects to anti-epileptic drugs such as behavioral issues, suicides, accident risks, pneumonia-related to post-seizure aspiration, depression, anxiety and so on. This may result in significant hurdles in education and marriage, and patients may have to deal with the social stigma surrounding epilepsy.
Uncontrolled Epilepsy Diagnosis and Treatment
Before treating the patient, doctors must be sure that it is actually drug-resistant epilepsy. Then, they must find out the kind of epilepsy, look at their medical history and start investigating the case. When dealing with drug-resistant epilepsy, it is important to look at the medical history of the patient to make a syndromic diagnosis. Then, the doctor should make sure they know how the seizure started, and what the exact manifestations were, and how they evolved. Specialists must take necessary steps to diagnose and treat drug-resistant epilepsy by making sure that it is in fact epilepsy and not an alternative disorder. For instance, epilepsy includes partial-onset seizures, primary generalized epilepsy, and severe symptomatic or progressive seizure types. Alternative disorders that resemble epilepsy are syncope and convulsive syncope, psychogenic nonepileptic seizures, pain reactions, panic symptoms, dissociative episodes, and other psychiatric states, sleep disorders and narcolepsy. This can be evaluated by talking to the patients and observers and noting the duration, responsiveness, behaviours, recovery duration, prodromal symptoms and symptoms of epileptic episodes. MRI scans and EEG videos can be used to determine the type of epilepsy, although facilities to carry out observation are scarce in India, with most centres situated in Southern India.
Some ways that drug-resistant epilepsy can be treated are: for partial-onset seizures, additional monotherapy in case high dosage of anti-epileptic drugs were poorly tolerated previously, adjunctive treatments with a complementary anti-epileptic drug, look at patient profiles and prescribe/match anti-epileptic drug based on factors like comorbid conditions, women of childbearing age, elderly patients, etc. For partial-onset seizures, specialists usually lower side effects caused due to drugs like oxcarbazepine and lacosamide and AED options like topiramate, lacosamide, zonisamide, divalproex, and phenytoin. Many patients can also be given non-medical options like surgery screening, vagal nerve stimulation or diets like ketogenic or Atkins diet. As for primary generalized epilepsy, specialists can consider conversion to monotherapy using topiramate or zonisamide. or adjunctive and additional adjunctive therapies.
For severe symptomatic forms of epilepsy like multifocal and multiple seizure forms, adjunctive therapy using combinations of broad and narrow spectrum anti-epileptic drugs, nonmedical therapy like vagus nerve stimulation or dietary therapy such as ketogenic or Atkins, or third-line adjunctive therapies can be used. If a patient has refractory epilepsy or autoimmune epilepsies, anti-inflammatory drugs are used, and surgery is also a major option provided the lesion is found on one-side, on video EEG. Stimulation therapies can also be used, although as compared to surgery, it only has a 50 percent success rate. Responsive neurostimulation is also a method that is catching up and in some patients, there is up to 90 percent improvement. Refractory options for patients are polytherapy, surgery, ketogenic diet, anti-inflammatory drugs, but surgery can be considered, based on the pros and cons, or stimulation therapies such as vagus nerve stimulation, responsive neurostimulation, theta-burst stimulation, and polytherapy can be considered as alternative options.