Waunakee’s Erin MacMillan has lived with epilepsy for 32 of her 37 years, and each of the five medications she’s taken presented serious side effects.
“I work as a nurse and the side effects make it difficult to do my job,” she says, and then provides a glimpse of the disease’s daily imposition. “Word recall can be hard. Rashes. I ended up in the hospital for four days because of a medication reaction, and was in metabolic acidosis (a chemical imbalance during which the body produces too much acid). But the changes my cognition are the biggest issue.”
When a nutritionist in her clinic mentioned that UW Health’s epilepsy program recently began treating adult epilepsy patients with a modified Atkins diet to control seizures, MacMillan immediately set up an appointment with UW Health neurologist Elizabeth Felton.
More Fats, Fewer Carbs
“Dietary treatment of epilepsy has been around for more than 100 years,” says Dr. Felton. Her interest in the diet bloomed as she became acquainted with its long history during her residency at Johns Hopkins.
“Many years ago researchers found starvation made epileptic seizures go away, but obviously that’s not something that’s sustainable,” she says with a smile. “It’s the state of ketosis that helps, and you get into a state of ketosis by having the body use fat for fuel rather than carbohydrates or glucose.”
To do so, patients must drastically reduce their carb intake. They’re allowed 20 grams per day.
“A slice of white bread has 15 grams of carbohydrates,” says Adult Epilepsy Dietary Therapy Clinic dietitian Kayli Siow. “Half of a banana is already 15 grams. There are going to be a lot of traditional foods they won’t be able to have. It’s a huge commitment.”
But after meeting with Dr. Felton and Siow, MacMillan felt confident that she could acclimate to the modified Atkins diet’s strict demands.
“It was very thorough,” she says of the initial meeting. “We discussed the diet and what was expected of me. I felt very comfortable leaving the appointment. I felt like I could do it.”
Big Dietary Change
Instead of breads and pastas, MacMillan would have to derive the vast majority of her diet’s calories from high-fat, low-carb foods like meats, eggs, avocado, mayonnaise and heavy whipping cream, and naturally low-carbohydrate foods like green vegetables.
“I used to eat sandwiches, and lots of pasta and rice,” she says, adding with a rueful laugh, “People bring donuts to the clinic all the time. I had to stop that.”
The food substitutions Siow introduced helped MacMillan stick to the diet.
“I give them alternatives,” Siow says. “We use sugar substitutes – SPLENDA@, Truvia@, Equal. We have nut flours, like almond and coconut flour, which are lower in carbs than all-purpose flour. There are a lot of sugar-free syrups and fruit extracts to flavor foods and desserts.”
“There were a lot of substitutes,” MacMillan says, “so it didn’t feel like I was missing out on too much.”
“We tell our patients it’s going to be different but it’s definitely doable,” Siow says. “It’s a treatment that’s been proven effective.”
It certainly has been for MacMillan. Prior to adopting the modified Atkins diet, she experienced two to three auras – mild seizures – every week. And since?
“I had two auras the first week and have not had one since,” she says. “It’s amazing.”
Reduction in Seizures
MacMillan’s dramatic improvement may not be typical, but Dr. Felton says a significant number of patients for whom anti-seizure medication has failed could benefit from diet therapy.
“About half of patients have a 50 percent or greater reduction in seizures,” she says. “It’s not perfect but the majority of patients that start the treatment already have intractable epilepsy, which means they’ve tried at least two (and typically many more) medications and they’re still having seizures, so the chance of another medication helping their seizures is pretty low.”
One concern is cholesterol. The primary staples of the diet are high-fat, so Dr. Felton monitors blood lipids carefully.
“We give suggestions for using healthier fats so the cholesterol doesn’t go up,” she says, and adds that with many patients, cholesterol increases initially, plateaus and then returns to a normal level within a year. “Typically, it doesn’t cause major problems. But it’s something we monitor to make sure it’s not increasing too much.”
Siow mentions that some diet therapy patients feel sluggish and experience mild headaches and dizziness in the first week or two.
“I say, ‘Hey, for the past years your body has been using carbs for fuel. Now you’re telling your body to use fat. You’re going to feel different. Give your body some time to adjust.'”
For MacMillan, any adjustments she had to make have been more than justified by her seizure-free life. She encourages any epilepsy patients who have struggled to control their seizures to ask their doctors about the modified Atkins diet.
“I think it should be part of the conversation for anyone with epilepsy,” she says.