When epilepsy is uncontrolled, it indicates the continued occurrence of an unacceptable quantity of seizures despite reasonable treatment. The amount of seizures deemed unacceptable is dependant on the nature of the seizures, the patient’s lifestyle and the consequences of such uncontrolled seizures.
So, what does uncontrolled epilepsy translate to in real life? What does uncontrolled epilepsy mean to those who are affected by it?
Continuing to experience seizures despite treatment, otherwise defined as intractable or refractory epilepsy, becomes a disability. Life becomes limited and circumscribed.
The physical consequences of uncontrolled epilepsy can be quite severe and include shortened lifespan and excessive bodily injury from falls and burns. Although rare, sudden unexplained death in epilepsy patients or SUDEP happens in people who have uncontrolled seizures. Rates of SUDEP are 4-7 times higher in people with medically refractory seizures. There is evidence that uncontrolled seizures can cause brain injury, including nerve cell death and physiological dysfunction.
But the seizures themselves are only part of the problem. In addition to seizures, people with uncontrolled epilepsy suffer from a number of non-physical disabilities.
Emotional and cognitive difficulties are disproportionately high in people with intractable epilepsy. Uncontrolled seizures in children can interfere with their cognition and learning. For example, when absence seizures – brief lapses in consciousness – occur uncontrollably, the child has difficulty in following the instruction of the teacher. When intractable epilepsy is characterized by convulsions, it becomes physically difficult to attend school and not interrupt learning. The after effects of seizures can lead to increased fatigue and inability to focus and concentrate. Behavioral problems, attention deficit disorder and memory deficits are all seen to occur with a higher incidence in refractory epilepsy.
Quality of life is impaired in intractable epilepsy, and relates to seizure control. Psychosocial disabilities, including lower social interaction with reduced marriage rates and reduced employment levels, are more common in people with refractory seizures. Reproductive and hormonal disorders are common in both men and women with uncontrolled epilepsy. Epilepsy that does not respond to reasonable management modalities also becomes a stressor for the patient’s family, caregivers and support system.
The stigma of uncontrolled seizures leads to economic and social discrimination. Majority of adults with uncontrolled seizures are unemployed or employed in jobs well below their level of competence. For most adults, driving restriction is a big limiting factor. People with uncontrolled epilepsy are seldom seizure free long enough to legally drive, thereby limiting their independence and mobility. This in turn limits their social interaction and employment opportunities.
Complete seizure control should be the goal, as seizures potentially constitute a serious threat to health and well-being. And while satisfactory seizure control can be defined as having no seizures, there is much more involved in managing uncontrolled epilepsy.
Treatment should be directed to preventing seizures whenever possible and achieving control early in the course of illness. This requires early recognition of uncontrolled seizures and factors that might contribute to the epilepsy becoming refractory. Some “controllable” reasons by which seizures become uncontrolled may include improper diagnosis leading to improper treatment, inadequate dosage of medication and noncompliance with medications.
There should be no hesitation to consider alternative treatment options when it becomes apparent that the seizures are not responding to anti epileptic medications. If the patient reports unacceptable side effects from a particular medication, then an alternative medication should be started. If use of at least two different medications has not resulted in seizure freedom, referral to an Epilepsy center for more highly specialized epilepsy care is indicated.
Other treatment options include brain surgery and/or implantable devices such as the vagal nerve stimulator. These may be considered in addition to medications to help control the seizures. A special diet such as the ketogenic diet or a modified Atkins diet is also sometimes used to help control refractory seizures.
The risks of uncontrolled seizures outweigh the risks of aggressive medical or surgical therapy. Even if complete control is not possible, decreasing seizure severity and frequency may lessen some of the adverse consequences. The psychosocial complications must also be addressed and treated appropriately, with aggressive early educational and psychological intervention to optimize outcome.
A highly specialized epilepsy center can offer the comprehensive care that is required to manage uncontrolled epilepsy.
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