She Lives With Seizures, and Public Stigma, Every Day
THURSDAY, Nov. 21, 2019 (HealthDay News) -- Most of the time, Eva Wadzinski is a typical college student. Then suddenly, she isn't.
Wadzinski has epilepsy and has disruptive seizure clusters as often as 40 times a day.
They are not typical "Hollywood" seizures where people convulse (tonic-clonic seizures), making it harder for people to understand what she's going through. Instead, Wadzinski has a variety of what's called focal seizures.
"I might scream or laugh very loudly. Sometimes, I rock back and forth. People don't always understand what seizures can look like, and it can be perceived as if I'm on drugs," Wadzinski explained.
She has no warning that a seizure is coming, but has learned that if she is stressed or hasn't had enough sleep, she's more likely to have a seizure. She's also more likely to have a seizure if she hasn't eaten in a while, and her blood sugar levels are dropping.
"I'm exhausted after a seizure. I can sleep for five hours," she said.
Wadzinski said having seizure clusters can be very isolating. She's had to change high school four times and colleges twice. "I've had someone yell at me. Kids have gotten up and moved to a different chair in class. You definitely feel like you're by yourself. Sometimes, I just have to ignore everyone," she said.
She tries to keep a sense of humor about her illness, but it's hard. She said she has a great support system in her family, and at the end of a tough day, she knows she can go home and vent.
Wadzinski said she wishes that more people would try to understand and be empathetic to a person having seizures. "The person having a seizure feels embarrassed or stressed already. I wish people would just have a little more human decency," she added.
Seizures are caused by abnormal electrical activity in the brain, according to Dr. Page Pennell, president of the American Epilepsy Society. The person having them cannot control them.
Pennell said there's currently no set definition for seizure clusters in epilepsy. Some experts define it as three or more seizures in a day, and others define it as two or more seizures in a six-hour period. What's important to know, she noted, is that people who have seizure clusters often have multiple seizures in a single day.
With seizure clusters, she said, one seizure triggers another, and then another.
This isn't the case for most people with epilepsy, however.
"Two-thirds of people with epilepsy have good control of their seizures, but some people are drug-resistant and can't get complete control of their seizures," Pennell said.
Wadzinski has tried seven different medications, and has undergone two brain surgeries to try to get her seizures under control. From a high of up to 40 seizures a day when she was 15 years old, she's down to 10 a day with her current medications.
Pennell said, "I think one of the hardest parts of living with seizure clusters is the unpredictability. You can have 20 good days, and then have seizures on the 21st. You don't know what's coming. You can't drive. You have to worry about work and school."
And, on top of that, Pennell explained, there is a stigma unfairly associated with epilepsy. "People feel uncomfortable with it, but it can be treated and it should be considered like any other medical condition," she said.
If you know someone with epilepsy, including seizure clusters, she suggested learning more about it. Pennell said you shouldn't try to hold someone down or restrain them during a seizure. "Try to speak to them calmly, and keep them in a safe environment. Just be with them," she advised.
Learn more about seizure clusters from the Epilepsy Foundation.
SOURCES: Eva Wadzinski, 21, Chicago; Page Pennell, M.D., president, American Epilepsy Society, and professor, neurology, Harvard Medical School, and director, epilepsy research, Brigham and Women's Hospital, Boston