As nighttime approaches your heart beats faster as your anxiety level rises. “What if a seizure happens tonight? What if no one is there to help?” Whether you are patient or caregiver, the fear of nocturnal seizures can be intensely disturbing.
SUDEP and the Cycle of Fear
Physicians are often reluctant to discuss with patients and their families the possibility that people with epilepsy can die unexpectedly. However, research shows that frequency of occurrence of sudden unexpected death in epilepsy (SUDEP) ranges from approximately 1 in every 3000 patients per year, depending in part on seizure severity and frequency. While that statistic is fortunately low, it holds a place of prominence in the minds of many patients and their families. And because SUDEP typically happens at night, anxiety and fear of being alone and helpless during a nocturnal seizure may compromise sleep quality in patients with epilepsy, thus increasing the likelihood of seizure activity. So it seems that for many epilepsy patients there develops a cycle: fear of nighttime seizures = insufficient sleep = increased seizure activity.
Our Family’s Story
Bryan, my 16-year-old son, and I know the anxiety associated with nocturnal seizures all too well. After two years of partial complex seizure activity Bryan’s doctors’ decided to change his medication. We all hoped the medication change would bring positive results. Instead, we were extremely disappointed as Bryan proceeded to experience a series of serious tonic clonic seizures and intermittent partial complex seizures. While the partial complex seizure activity was somewhat tolerable -- the grand mal seizures were not. Not only were the seizures themselves severe in nature, but the after effects were as well. Typically, following a grand mal seizure, Bryan would experience intense nausea and profuse vomiting. Fortunately, he was always surrounded by family and kept safe due to our ability to either help him through the seizures or call for an ambulance. There were of course times when no matter how many safety measures we took Bryan still suffered physical injury as a direct result of a grand mal. In fact, as a consequence of one seizure he smashed his chin on a tile floor, and had to be stitched back together by a plastic surgeon.
Although we were anxious about the unpredictable nature and severity of Bryan’s seizures, we derived a sense of comfort knowing that we could be there physically and emotionally to help Bryan during and after a seizure. As a result, Bryan felt empowered knowing his family and friends were near. But, it was the night that frightened me. As bedtime drew nearer the fear level would rise not only for me, but for the entire family, because we were terrified Bryan would have a seizure and we would be unable to save him in time. For me, nighttime meant hours of fear, tossing and turning and drifting in and out of sleep. As a registered nurse (R.N.) my worst fear was losing Bryan due to SUDEP. As a psychotherapist, I had a deep concern for his emotional health during this period. As a mother, my heart ached to find a better way to help him navigate through this complex and scary time in his life. Since Bryan looked to me for love and comfort, as well as to provide him with a feeling of safety, I knew I had to come up with a safety plan.
Creating a Safety Plan
Bryan and I discussed possible ways to deal with our anxiety. My bedroom door would be left open with the hope that I would hear him. He would try to be alert to any “aura” that might indicate a pending seizure. In addition, Bryan’s doctors suggested we use a baby monitor during the night so that I could hear if and when Bryan had a nocturnal seizure. However, the suggestion of a “baby monitor” to my 16-year-old was met with great negativity! Teenagers crave privacy and preservation of dignity and the use of a baby monitor would violate that privacy. More importantly, I knew from past experience that baby monitors were great tools in detecting loud sounds, but did not guarantee that I would awaken during one of Bryan’s seizures. So, those first nights after creating our safety plan we agreed that he could sleep on my bedroom floor, as a precaution. Knowing I was there helped him to sleep. Knowing he was there eased my anxiety. But believe me, I couldn’t fall asleep for fear I wouldn’t awaken when he needed me.
The Seizure Monitor
Frustrated, I decided that since we live in an age of amazing technological advances, there must be a monitor somewhere that can be used in this type of situation. I went to my computer and “Googled” my way to peace of mind for my son and myself. Typing in the words “seizure monitor” delivered the website that would be the answer to our dilemma. There were 2 seizure monitors available outside of the United States. I explored both and found the specifications of the EasyLink UKMedpage 5 Epileptic Bed Seizure Monitor to be best suited to our needs. Mike Dines, EasyLink’s Owner, was very happy to describe the seizure alert monitor he manufactures. Mike explained that he would be happy to take my order and mail the monitor to me. We waited about a week for it to arrive. It was worth the wait! We were very pleased to see that the monitor was simple to use. A small sensor is placed between the mattress and boxspring. The main monitor box is placed on the bedside table. The monitor box has control levers that allow you to raise or lower the sensitivity to movement and sounds. This enables you to adjust the sensitivity level of the monitor to your usual level of seizure activity and sounds. A third component is a wireless alarm box which sits on the caregiver’s bedside table. It will alert the caregiver to consistent sounds and movement near the patient’s bedside monitor. There is an 8-second delay which allows for the usual turning during the night or the occasional cough. Consistent sounds or motion for more than 8 seconds causes the wireless alarm which sits on the caregiver’s night table to sound loudly. The alarm also emits strobe lights. The combination of flashing light and loud sounds is sure to wake even the soundest of sleepers. Added benefit to the alarm is that it allows for privacy for both patient and caregiver since it is not an intercom. Important to some is the fact that those who experience very mild motor activity, or those weighing under 20Kg (44 lbs) have the option of adding an additional bed sensor which will increase the monitor‘s sensitivity to movement.
When the monitor arrived at my home, I set it up and prepared to test its ability to alert me. I made sure to do the first test when Bryan was not at home. I went to his room, got into his bed and reenacted the seizure activity I had witnessed him display during his seizures. I wanted to be sure that his level of movement and typical sounds would be picked up by the monitor. I was overjoyed that it worked wonderfully. I would suggest this practice test to anyone using the monitor. The patient does not witness himself in the process of a seizure. We know how the seizure typically presents itself and are better able to assess the setting for the monitor. Also, EasyLink UK recommends frequent retesting of the monitor to insure it is working properly.
The Apnea Monitor
Additionally, we purchased an Apnea Alarm from EasyLink UK, which we have found very easy to operate. The alarm is used to detect breathing movements of a baby or adult. Should breathing cease for more than 20 seconds, the alarm emits a sound which alerts the caregiver. A flat sensor pad is placed under the mattress and an extension cord allows the alarm to be placed in the caregiver’s room.
Empowerment Results in More Restful Sleep
While we still feel some concern regarding nocturnal seizures we no longer feel helpless and fearful of falling asleep. Building an arsenal against the possible dangers that seizures impose has empowered our family.
Empower Your Family
Knowing that you have done your best to design a plan to address any possible event will decrease anxiety and aid you in reclaiming much needed sleep. That sleep may be just the ammunition you need to inhibit that next seizure. Adequate sleep is vitally important to everyone with epilepsy. The following are some tips to follow in creating a safety plan:
- Have your entire family learn seizure first aid and CPR. Knowledge is power!
- Arrange furniture so that a fall out of bed will not cause head trauma.
- Purchase a pillow designed to decrease the possibility of suffocation.
- Discuss you concerns with your doctor and have him help you make a PLAN.
Seizure Monitor and Safety Resources