Living with seizures: As episodes worsen and expenses rise, woman copes with condition that overpowers her lifeMOORHEAD – When Diana Dalluge was just 11 months old she had a convulsion and was paralyzed on her left side for a week. She went through physical therapy and eventually regained feeling and movement on her left side, but she has been dealing with seizures ever since.
By: Tracy Frank, INFORUM
MOORHEAD – When Diana Dalluge was just 11 months old she had a convulsion and was paralyzed on her left side for a week.
She went through physical therapy and eventually regained feeling and movement on her left side, but she has been dealing with seizures ever since.
It hasn’t been an easy road. Dalluge says her seizures are why she could not have children. The 52-year-old can no longer work. And because of her medical bills, she has had to file bankruptcy and lost her home.
Even with medication, Dalluge still has seizures.
Before they strike, she usually gets a sick feeling. If she can drink some cold water in time, it might ward off the seizure.
But she can’t always get that drink.
Dalluge, who lives in Moorhead, remembers a time in fifth grade when her teacher wouldn’t let her get the drink she needed. She had a seizure in the middle of class.
“From then on I was teased,” she said. “All of a sudden I was a freak.”
Only a couple of people dared to be around her, so Dalluge didn’t have many friends, she said.
“People just didn’t understand,” she said. “It’s really sad because they still don’t understand what seizures are. They’re afraid of them.”
Dalluge doesn’t always convulse when she has a seizure. Usually she freezes, stares into space, and starts smacking her lips. Sometimes she yells and pounds with her right hand, she said.
Over the years, Dalluge’s seizures have worsened.
She said they’ve been showing up every couple of weeks, even though she takes her medication regularly. She has also started having grand mal seizures, which involve a loss of consciousness and violent muscle contractions, according to Mayo Clinic.
One recent bout with grand mal seizures was so bad Dalluge couldn’t walk the next day, she said. Pain radiated throughout her back and legs.
Dalluge’s husband of 32 years, Evan Dalluge, is used to his wife’s seizures and knows how to handle them, he said. He also has a medical background, which helps, he said. He used to work at the Regional Treatment Center in Fergus Falls.
“The main thing is to make sure she doesn’t hurt herself,” he said.
Diana Dalluge said her seizures have caused her to give up on many of her hopes and dreams.
“There are many things I would have loved to have done but I just can’t,” she said.
The biggest thing is she wasn’t able to have children, Dalluge said.
“I just love kids,” she said. “That was one dream I had, and it was taken away because of these seizures.”
Dalluge ran a child care operation out of her home in Fergus Falls for more than 20 years. Her husband, who worked nights, helped.
They also had a lot of dogs. One would even go find Evan whenever Diana had a seizure, she said.
“They were our kids,” she said.
Because of her seizures, Dalluge has had trouble keeping jobs since she stopped the child care operation and now she cannot work at all, she said.
“When it gets stressful, the seizures show up,” she said.
She also can no longer drive because her seizures will come on with no warning, she said.
But because her medical bills are so high and she isn’t able to be on social security, Medicare, or Medicaid, she had to file for bankruptcy and lost her home, Dalluge said.
“We fought like crazy to keep that,” she said. “It’s just been killing us something terrible. Just my medicines alone are taking over half our income.”
She takes 10 to 11 medications that cost around $1,400 a month.
She also gets terrible headaches and migraines, especially following seizures, that have to be treated with prescription pain medication and expensive shots, she said.
Dalluge was recently accepted to participate in a prescription assistance company for people who cannot afford their medications called togetherhealth, and she said she hopes that will help lower her costs.
But Diana’s medical problems aren’t the only issue the Dalluges are dealing with.
They also need to get to Mayo Clinic in Rochester, Minn., so Evan can get the testing he needs for a kidney transplant. But they can’t afford it and just recently got their car back up and running, Diana Dalluge said.
“It’s just been one thing after another and now my seizures have gotten worse,” she said. “A person lives with this stuff day after day and year after year.”
“It gets to be a drag on you,” Evan Dalluge added. “It wears you down.”
What to know about seizures
Dr. Amanda Diamond, a Sanford Neurologist who is not Dalluge’s regular doctor, said seizures are more common than people realize.
Ten percent of people will have a seizure at some point in their lives and 2 or 3 percent will be diagnosed with recurrent unprovoked seizures that require daily medication, Diamond said.
Seizures are episodes of disturbed brain activity that cause changes in attention or behavior, according to the U.S. National Library of Medicine.
Some have mild symptoms like staring spells and others involve uncontrollable convulsions. Warning signs before an attack might include feelings of fear or anxiety, nausea, vertigo, or seeing flashing bright lights, spots or wavy lines.
Seizures can be caused by a variety of things from abnormal levels of sodium or glucose in the blood, to brain infections and injuries, choking, fever, poisoning, strokes, or withdrawal from drugs or alcohol. Sometimes no cause can be identified, according to the Library of Medicine.
Diamond said causes also depend on the age of onset. The earlier someone starts having seizures, the more likely it’s caused by genetic factors or is part of another neurologic syndrome, Diamond said.
“As we get older, other changes can happen that potentially could contribute to seizures,” she said.
Most people with chronic seizures are able to take medications to help them lead their lives as they would otherwise, Diamond said. But some have to be wary of situations where they could hurt themselves or others such as working around open flames, sharp objects, heights, or driving, she said.
The most important thing to do if you see someone having a seizure is to stay with the person until the seizure is over and remain calm, Diamond said.
“Most seizures will only last a matter of seconds to a couple of minutes,” she said.
If someone is having a seizure, move nearby objects, keep other people away, pay attention to the duration of the seizure, and do not try to forcibly hold the person down, Diamond said.
“It’s also very important not to put anything in mouth,” she said.
People having seizures cannot swallow their tongues but they can choke if something’s placed in their mouth, she said.
“Just be supportive and make sure that they’re comfortable,” she said.
Readers can reach Forum reporter Tracy Frank at (701) 241-5526