Manage Your Seizures

A seizure is defined as a sudden, uncontrolled electrical disturbance in the brain. It can cause changes in your behavior, movements, feelings, and in levels of consciousness. Having two or more seizures at least 24 hours apart that aren’t brought on by an identifiable cause is generally considered to be epilepsy. There are approximately 40 different types of seizures, and they can be classified in three groups: generalized onset, focal onset, and unknown onset.

Generalized onset seizures, also known as a grand mal or typical seizures, are caused by abnormal electrical activity throughout the brain. During the seizure, the person’s body stiffens and, if standing, they fall to the ground, followed by their limbs jerking in strong, symmetrical, rhythmic movements. Focal onset seizures, also known as petit mal or a-typical, begin in one side of the brain. The person has no loss of awareness of their surroundings during the seizure, and the person may have movements, feelings, or sensations that are out of their control. Unknown onset seizures are not witnessed by anyone, for example when seizures happen while asleep or in a person who lives alone. As more information is learned, an unknown onset seizure may later be diagnosed as a focal or generalized seizure.

My daughter Sarah has struggled with both typical and a-typical seizures for years. They started after her multiple gamma-knife radiation therapies on the brain, and the resulting hormonal, chemical, or biological changes in the brain. Sarah started out with typical grand mal seizures about once every other month, and each lasted a few minutes. In recent times, she has felt the cumulative build up where she can feel that she is due for one. The last of those seizures lasted over 25 minutes, stopped only after administering Ativan by the paramedics, and it landed her in the hospital for a couple of days. Her seizures happened at home, at Starbucks, at work, and while riding in the passenger seat next to her husband. From her perspective, she wakes up somewhere from a seizure, groggy and exhausted, not knowing where she is or what happened. But for those of us who are witnessing from the outside, the seizure has two stages. Loss of consciousness occurs first, followed by muscle convulsions that usually last for minutes.

Sarah had also experienced many a-typical or petit mal seizures. Each would last for a few minutes. These seizures were very different. For one thing, Sarah was relatively aware of what was happening. When she felt an episode coming on, she only had enough time to sit down. This was good in a way, as she was safer, aware and able to log the symptoms and frequency of these episodes afterwards. At first, we called them dizzy spells, then later understood them to be a-typical seizures. Then, those episodes started to increase in frequency, sometimes hourly. The symptoms were changing, too. For example, certain light conditions, sounds, and smells could trigger an episode. Her facial structure changes immediately, in ways I cannot describe. It seems I am looking at a wax figure that resembles her, but is not exactly her. Then, she starts shaking, while looking into space. She has indicated that she can feel her surroundings through a glass-like sensation. After a period of shaking, she gets cold, starts experiencing fear, and lifts her legs off the floor while looking around. When it all stops, she sometimes feels back to her normal self, and sometimes foggy, but always exhausted.

Diagnosing and treating seizures is usually a long term game, and managing any type of seizure requires a specialized neurologist. The neurologist usually starts with a bunch of testing, including MRI in order to look at the brain structure, then an EEG to look at the electrical activities in the brain. This is usually followed by prescribing one or more seizure medications in order to control those seizures. Seizure medications are like muscle relaxers, but for the brain and nerve system. So, the patient may feel foggy and dizzy in the first few days, but those symptoms usually get better in a week or two, depending on the type of medication and doses. Sometimes, medications alone cannot control those seizures, in which case, neurologists may recommend a vagus nerve stimulation implant (VNS). VNS is a device that is similar to pacemaker, which helps regulate heart beat, but a VNS is used to help regulate electrical activities in the brain.

Managing seizures should top the priority list, after medical treatment, and before even managing other symptoms. Thinking about how difficult it is to watch your loved ones deal with seizures will give us a good idea of the urgent help they need from family, friends, and other caregivers. The level of disruption that is caused by seizures, and the constant worries about the next seizure, usually tops the chart. For one thing, those who experience seizures cannot live alone, cannot drive, and may need to be under constant monitoring and supervision. Also, depending on the type of seizure, there may be different steps to take, like staying with the person until the seizure ends and he or she is fully awake, helping the person sit in a safe place, and telling them what happened in calm and simple terms, etc. Finally, once things are calm, ask the patient some questions and take some notes. This includes what they were doing before the seizure, any sensations they felt prior to the seizure, whether they were alert during the seizure, and then monitor how they are feeling after.

If you experience seizures, make sure to follow up with a neurologist, and stay the course of testing and treatment.