When Myelin Mussell, a diabetic and health history teacher in Seattle, started having terrible headaches in October 2014, she was worried. Myelin is the fatty insulating sheath that surrounds nerve cells in the brain. “My brain felt like it was on fire,” she says. In total, she thought she had gone through two “full size” seizures in that month. In some way, it seemed like they might be related. I began to suspect I had a problem.” Myelin is essential to the functioning of the brain; the insulating coating forms instantly and effectively when nerve cells react to outside stimuli.
But how does this protective coating form?
At the time, Myelin was getting nervous in response to stimuli and the reaction could have been triggered by anything, including fever or drinking too much alcohol. Myelin is thicker in women. Usually, I wouldn’t notice any big difference if it was thinner in me, but it soon became evident that I had a problem.
By the end of October, she went to the Emergency Room at Swedish Medical Center in Seattle. Doctors diagnosed migraines with no history of migraines; the migraines had been growing progressively worse; and she began to develop a short-term memory loss that prevented her from remembering simple things.
There was no risk of brain damage, they said. They put her on various drugs, including a painkiller and the anti-epileptic drug Topamax. Over the following months, her symptoms progressed to full-blown seizures. By May, she became so anxious about seizures that she was having increasingly painful seizures. A week before her mother walked into the room, Myelin was having a seizure and barely remembers leaving. She had lost so much muscle mass that she had to stay in bed for two weeks, unable to exercise for fear of another seizure. On the day she was finally released from the hospital, she began having milder seizures. But suddenly, they stopped. It was too much for her to absorb. She was put back on Topamax, and, upon her discharge from the hospital, she also started having seizures.
To prevent seizures, Myelin began going through a cycle of thinning her cover, then thickening it. On a 21-day trial, there were four months between seizures. This made it harder to maintain her covered cells. At times, Myelin would have a seizure, then re-injury the thinning cover and have a seizure again. After the patient goes through a trauma like this, it takes months for the coverage to re-build.
Myelin put in a campaign. For four years, she and her doctors worked to produce a diluted version of the hemicellulose, a form of protein that has been used since the 1500s to hold the cover together. Since the mid-1800s, Hemicellulose has been used clinically to keep seizures from recurring and as a therapeutic agent. In the past, the practice has had mixed results. The cover taken from a person’s spleen has been given to try to help her. But often, this works only in the short-term.