Taryn Sargent, then 20, nodded off only briefly, but the timing couldn’t have been much worse. She was driving on the highway from Kenyon College in Ohio with her sister Andrea, and the momentary lapse of consciousness brought the rear end of the semitrailer too close to avoid. Sargent swerved hard, avoiding a double-fatal.
But the car clipped the back of the semi, skidded, flipped, and rolled. When they came to rest, Andrea had a deep cut on her foot; Taryn had sustained a major brain injury and would remain unconscious for eight days.
She would recover from that accident in 1999, but not without an enduring complication: damage to her temporal lobe triggering epileptic seizures. Sargent moved to Colorado in 2001, where the neurology team at UCHealth University of Colorado Hospital on the Anschutz Medical Campus (UCH) took over her care.
Over the next 15 years, Sargent’s providers tried medication after medication, only to find that none really worked. Her seizures continued at a pace of 10 to 20 per month. These were simple or complex partial seizures during which she typically remained conscious but temporarily lost much of her ability to perceive and interact. They could strike anytime. It happened once when she was running a race, and when she came to, she found herself alone in a neighborhood having missed a turn. She also found that the seizures often could leave her feeling depressed.
Reducing carbohydrate intake
In late 2016, Sargent’s neurologist at the time, Dr. Cornelia Drees of the University of Colorado School of Medicine, suggested an anti-seizure solution that had been described in modern medical literature as early as 1921 – and itself was a wrinkle on an anti-seizure therapy dating back 2,400 years. The ketogenic diet was designed to mimic the fasting that Hippocrates had described as a way to stem epileptic seizures in the 5th century BC. It works by sharply cutting carbohydrates, reducing protein intake, and replacing those calories with fat. The body, deprived of those carbohydrates and the glucose they break down into, starts breaking down fat for energy.
Sargent’s seizures became less frequent and, within months, Drees’s colleague Dr. Mesha-Gay Brown launched what is today UCHealth’s Adult Epilepsy Diet Center, the only anti-seizure diet center focusing on adults in the Mountain West and one of about a dozen such centers in the country. Sargent became one of its first patients.
The UCHealth Adult Epilepsy Diet Center operates through a weekly half-day clinic at UCH on Wednesday mornings. Patients arrive with differing motivations, says Dr. Naveed Chaudhry, the CU School of Medicine neurologist who leads the center. Reducing the number and intensity of seizures is a universal goal, he says, but some patients also aim to taper or eliminate anti-seizure medications that can slow cognition, hamper memory, and cause weight gain even if they do work.
As to why they do work – and why they work better for some than others – neither Chaudhry nor anyone else in the medical community can say for sure. Suspected mechanisms include direct effects of ketones, neurotransmitter and ion channel regulation, bioenergetic and mitochondrial changes, glycolytic restriction/diversion, fatty acid oxidation and, you guessed it, tricarboxylic acid cycle effects and enhanced ATP production.
Chaudhry is working to help medical science inch toward an answer, though. He’s teeing up a study to better understand the gut microbiome of consenting Adult Epilepsy Diet Center patients to see if the diet impacts specific gut flora.
‘Epilepsy diet’ reduces seizure frequency
While data is sparse for adult compared to pediatric patients, the odds of a carbohydrate-starved diet decreasing seizures are favorable. This has been borne out at the UCHealth clinic, Chaudhry says. On average, 30% to 60% of adult patients on the center’s diets see their seizure frequency fall more than 50%.
The center puts most patients on one of two diets: a modified Atkins diet (MAD) or the low glycemic index treatment diet (LGIT). A standard U.S. diet is comprised of about 50% carbohydrates, 35% fat, and 15% protein – amounting to about 250 grams of carbohydrates per day, says Holly Sullivan, one of the center’s two clinical dietitians. Diets with fewer than 50 grams of carbohydrates a day are considered very low-carb, she says.
The modified Atkins diet, the stricter of the two, calls for 6% carbohydrates, 30% protein, and 64% fat. This diet aims to limit carb intake to about 20 grams a day – roughly the amount of a single slice of bread. The low glycemic index treatment diet limits patients to 10% carbohydrates, 30% protein, and 60% fat, but those carbohydrates can’t come from high-glycemic foods – foods that the body processes quickly into blood sugar – such as grapes, bananas, white rice, and potatoes. As those numbers show, fat is a major part of both diets.
“This is the clinic where we ask, ‘Did you have bacon with that?’” said Sullivan.
She and fellow clinical dietitian Meghan Perkins could, in theory, also prescribe strictest of the diets – the classic ketogenic diet (CKD). But allowing just 4% carbohydrates (with 6% protein and a whopping 90% fat), is so demanding that the only adults that can typically comply with it are being tube-fed, Sullivan says.
The clinic treats these diets like the medical therapies they are, says Stacey Wilson, the Adult Epilepsy Diet Clinic physician assistant who sees Sargent and other patients. At the start of these diets and then periodically going forward (the intervals range from six weeks to six months), patients do blood and urine testing that checks kidney and liver function, complete blood count, and concentrations of vitamins and minerals such as ferritin, zinc, magnesium, phosphorus, and selenium – many of which can be lacking because grains typically supply them. They check electrolytes such as chloride, potassium, and phosphorus because the diets can increase blood acidity. They look at ketones to see the degree that the diet is triggering ketogenesis, and they also keep a close eye on cholesterol, Wilson says.
That’s critical, Chaudhry, says, because these diets can increase the risk of cardiovascular disease, and if the numbers go up, patients may need to start on statins, modify the diets, or stop them entirely.
A modified Atkins diet helps
Sargent went on the modified Atkins diet in late 2016 and saw her seizures diminished sharply in both frequency and magnitude. Three months in, she fell prey to a Taco Bell craving. It yielded a crunch-wrapped Taco Supreme, a double-decker Taco Supreme, a hard-shelled taco, and, a few hours later, a seizure that had her friend calling 9-1-1.
“I realized then that the diet was working and I couldn’t break it,” she said.
Despite “dreams of Hostess cherry pies,” she stuck with the modified Atkins diet. This former devotee of delivery pizza has learned to hop online when she has cravings. There she finds low-carb recipes and makes them for herself.
“If you want a hot dog bun, I can guarantee there will be something online that’s Atkins-friendly,” she said. “I just made a lemon poppy seed Bundt cake. If I want a cheesecake, I will find a way.”
The monitoring the clinic does has made a difference for her. A shoulder injury in December 2021 affected her ability to cook for herself, and that combined with other factors caused her cholesterol numbers to spike. Wilson and Sullivan transitioned her from the MAD to the low glycemic acid treatment diet to bring those numbers back down. The seizures stayed under control.
Chaudhry says some patients start on the less-strict LGIT diet. Even that represents a big lifestyle change, and for some, it may be as far as they can go.
“We try to see where the patient is coming from and where we can realistically get them to,” he said.
Sargent has also done more than just diet to keep her seizures in check. In 2019, she had a microburst vagus-nerve stimulator (VNS) device implanted at UCH as part of a clinical trial. The combination has cut back her seizures to two to three a month, and they’re milder now, too, she says.
She still has the occasional Taco Bell craving, she admits. But a life largely unshackled from seizures is a small price to pay for foregoing the occasional Crunchwrap Supreme.