Being open and honest about the fear of seizures
December 20, 2008. The last day of fall, though winter had been here for the past month and we are now in the middle of it. The snow is deep and the nights are cold. What’s so special about this day? Bob Kuster has not had a seizure for one year. “It’s like a sense of pride, like all the testing, medicines and doctor visits were worth it.”
When Bob started getting his seizures almost 20 years ago, he was drinking heavily and at the time had been drinking for 10 years. He had had a couple of head injuries, but nothing that made him lose consciousness or require medical care.
He didn’t even know he was having seizures, “I just didn’t feel right.” He had several visits with his doctor, but nothing showed up on his tests or his visits. Then, on one of his visits, he had a seizure in front of his doctor. “That actually came in handy, at least we knew what the problem was.”
Bob’s seizures are petit mal seizures with partial complex seizures. This means he would mostly “space out,” but would also just lose consciousness and fall down. The whole thing would last less than a minute, but he would be confused for 10-15 minutes afterward. Confusion and fatigue after a seizure are common depending on the type of seizure.
The seizures caused some memory problems for him. He worked in a shipping and receiving department and had to unload trucks. He would sometimes forget where some of the things went. He had also had a few injuries due to his falls during his seizures. He showed up for work with a broken wrist, but told his co-workers he had tripped over a toolbox. He eventually ended up losing his job and his driver’s license. He had several seizures in public, one on a city bus with lots of passengers. “When the paramedics came, I was ashamed because I couldn’t answer their questions.”
He had another seizure at a bus stop and one when he was riding his bike. That time he fell off a 4 foot wall and landed on the concrete below. During all of this, he felt fearful of having another seizure, but his overriding feeling was shame. “I was too embarrassed to talk to anybody about it.” His friends were afraid to be around him as they didn’t know what to do when he had his seizures.
Seizures are often preceded by an aura, which can be a sound, smell or some other sensation. Bob’s aura was a feeling of intense fear for a few seconds, then his seizure would follow immediately. The aura wasn’t long enough to give him time to sit or lie down.
He was referred to Neurology and had scans of his brain and had an EEG (electroencephalogram) or “brain wave study.” Those were normal. He wore an EEG monitor and that finally picked up one of his seizures. Since he first started having his seizures, he has been on at least 3 seizure medicines at all times. He quit drinking and stopped all caffeine. He was referred to 2 specialty centers in the Twin Cities and had a VNS (vagus nerve stimulator) implant done.
This is like a pacemaker that’s implanted in the chest muscles and sends a signal to a wire wrapped around the vagus nerve in the neck. During this time, he was still having seizures every day and was being set up to have surgery on the affected part of his brain.
Fortunately, with the combination of the VNS and changing his seizure medicines, he has finally been seizure free and has not needed surgery. He still lives in constant fear of having another seizure, but has been active in the support group at the hospital. They meet the second Tuesday of every month. He has finally been able to talk about his seizures and has talked to a group of pharmacy students and talked to a group at the college. “It’s like I finally came out of the closet and I can finally talk about my seizures without being ashamed.” He welcomes the chance to help others with seizures and knows he has a lot to offer for those needing support and first hand information about epilepsy.
A seizure is a sudden change in electrical activity in the brain and presents itself as motor (muscle), sensory or behavioral changes.
There does seem to be a genetic link and family history increases the risk 3 fold. In the U.S., there are 181,000 people with their first seizure per year. 4 million people have had a seizure and 2.5 million people have a seizure disorder.
Kids can get seizures with fevers. While this does not mean they will have epilepsy later on, kids under age 2 and adults over 65 have higher rates of epilepsy than other age groups. Alcohol and recreational drugs can cause seizures, as can strokes, heart disease, brain tumors, Alzheimer’s disease, trauma and infections.
Most of the time the cause is not known. There are more than 30 different types of seizures and about 60 percent of people with epilepsy have focal or partial seizures like Bob’s. Epilepsy is most often a treatable condition, mostly with medicines, but in rare cases surgery is needed. All seizures may not be stopped, but they can be decreased in frequency.
If someone is having a seizure, the main thing you need to do is to keep them from falling and safe from injury. Do not stick anything in their mouth as this can cause damage to teeth and lead to jaw problems. Do not try to hold them down or move them. Stay calm. Most seizures last 60-90 seconds.
Call 911 if it lasts more than 3 minutes or if the person is pregnant, no matter how long the seizure lasts. Being there to let them know they are safe as they come out of the seizure is the sign of a true friend.
For many people with epilepsy, the biggest hurdle is what others will think and say. This is often a bigger fear than the seizures. But people with epilepsy can live normal lives and can be a great resource for others. There are websites and foundations that are very good sources of information and can dispel myths and fears.
These sites include:
Much of the factual information here is from those sites. Being open and honest with friends and family will lessen their fears and make them more easily able to help keep you safe during seizures. Support groups are open to anyone whether they have epilepsy or not. Your provider or your local hospital can help you get in touch with them.
Bob is looking forward to another year free of seizures. His positive attitude, quick sense of humor and willingness to help others makes him a natural teacher for those looking to understand epilepsy better.
You’re a good man and a good friend, Bob Kuster.
Arne Vainio, M.D. is a Family Practice Physician at the Min-No-Aya-Win Human Services Clinic on the Fond du Lac Ojibwe Reservation in Northern Minnesota. He can be reached at firstname.lastname@example.org.