Nausea, drowsiness, spasms, hallucinations: the symptoms followed William Woods University student Lisa Sandford for years.
"None of this made sense to me until I got a diagnosis,"she said.
The final piece of Sandford's chronic illness puzzle clicked into place just last week. Ever since a blow to the head in middle school, Sandford has faced a variety of baffling symptoms — not to mention skeptical doctors and side effects from wrongly prescribed medications.
Now, she told an audience of students Tuesday, she finally has diagnoses that make sense and medication that works.
It all started in sixth grade.
"I was a track runner," Sandford recalled. "It was the first day we were trying the hurdles."
Sandford took a running leap but couldn't quite clear her hurdle. She crashed to the ground, and the hurdle flipped, its base whacking her head. All went black for a moment. Then, she felt warm blood leaking from a wound on her head. The coach called her mother, who drove her to their Detroit home. Sandford didn't go to the hospital until the next day.
Her doctor informed her she had a concussion.
"My teammates told me way, way later that I had been unconscious for about 10 minutes," Sandford said.
A mere 30 seconds of unconsciousness indicates a serious head injury.
Sandford felt OK — at first. By seventh grade, however, something was clearly wrong. She was in a funk, constantly tired.
Her doctor put her on antidepressants. That's when Sandford began having hallucinations.
In eighth grade, her symptoms worsened until she couldn't stay awake in class. Sandford's doctor upped her dosages. She began to suspect the drugs were causing the hallucinations and weaned herself off in ninth grade. The hallucinations stopped, but she was still tired all the time.
"I thought it was just from being a student," she said.
She was constantly busy with classes, homework and extracurriculars, including dance. Surely, she thought, her classmates were equally tired.
By 10th grade, Sandford could barely get out of bed. The headaches she began getting the year before worsened into migraines. Even scarier, her vision seemed to be deteriorating, and her neck was stiffening into a permanent tilt. An ophthalmologist noticed her optic nerves — the nerves leading from the eyes to the brain — seemed swollen.
"He told me, 'There's one condition like that, but it's so rare we don't have to test for it,'" Sandford recalled.
In 11th grade, a new set of symptoms arrived: She started coughing. Coughing so hard, she sometimes hacked up blood. A doctor expected bronchitis, but multiple courses of antibiotics across two months didn't cure her.
But that year was also when she found her first answer, thanks to a neurologist who actually listened.
Sandford learned her head injury had caused her eyes to become misaligned. That was causing her head to tilt as her body tried to compensate and contributing to her headaches. A new set of glasses with a built-in prism correct her eyes' alignment.
"Within five minutes, my neck had its full range of motion again," Sandford marvelled.
Next, he diagnosed her with the same rare ailment her ophthalmologist had dismissed: pseudotumor cerebri, also caused by her brain injury. This disease affects perhaps one in 100,000 people and has symptoms similar to a brain tumor. It's actually caused by a surplus of cerebrospinal fluid, a liquid that cushions the brain and the spine. If there isn't enough cerebrospinal fluid, the brain gets buffeted by the skull. If there's too much, the fluid squeezes the brain and optic nerves, and can even cause blindness.
A spinal tap confirmed the diagnosis.
"My pressure was about double what it should be," Sandford said.
During 12th grade, Sandford got surgery to correct her fluid pressure. The surgeon opened a window in the sheath around her optic nerve, allowing the excess cerebrospinal fluid to drain.
Sandford was able to graduate, but just barely. Her constant pain throughout high school wrecked her grades, but she was determined to continue to college.
At William Woods, Sandford signed up for an ambitious triple-major: equine studies, deaf studies and American Sign Language to English interpretation.
Her freshman year was promising, aside from a riding injury that broke three of her ribs. During her sophomore year, her spine sprung a leak following a spinal tap, causing excruciating low-pressure headaches. She had to convince her doctor it wasn't just another high-pressure problem.
"I told him, I know my body," she said.
Sandford was learning to assert herself.
Her junior year brought another diagnosis: asthma. Her two months of coughing up blood in 11th grade finally made sense. During her senior year, Sandford had an asthma attack so bad it hospitalized her for five days. That's when, yet again, a doctor made a mistake: He added borderline personality disorder to Sandford's chart. She had never received such a diagnosis — she'd never seen a psychiatrist.
Her plea to have the diagnosis removed went unanswered, she learned later. It was an error that almost proved catastrophic.
Last summer, a coworker accidentally slammed a door on Sandford's head. Just like that, she was back in middle school — but even worse. Sandford began having seizure-like symptoms, where her whole body would freeze and shake. Her hallucinations were back. Classes became marathons of sleep-wake-sleep-wake. Her speech slurred and she found herself unable to interpret sign language properly.
A neurologist told her it was panic attacks. An epilepsy specialist said it wasn't, but couldn't solve the mystery. A hospital stay in September only made the situation worse: Seeing borderline personality disorder on her chart, a doctor decided it was all in her head.
"Probably the most bizarre thing he said was, 'Getting hit in the head by a door triggered a psychological trauma from your childhood involving a door,'" Sandford remembered.
Sandford was done with doctors who wouldn't listen. She sought a second opinion with a neurologist. Last week, her diagnosis finally arrived. Turns out it was all in her head — more specifically, in her brain. Sandford has type-1 narcolepsy. Suddenly, all her symptoms made sense.
The doctor told her the blows to her head had caused a lesion on the hypothalamus, a part of the brain that regulates sleep.
"Basically, what it is, is the sleep switch in your brain is faulty," Sandford explained.
Boredom, strong emotions and sleepiness trigger "microsleep" events for Sandford. Her "seizures" were her body locking up the way it does during deep, dreaming sleep. Those hallucinations were hypnagogic hallucinations, the same kind many people get when drifting off.
Thanks to her new medication, Sandford only feels those symptoms for a few minutes each day, instead of hours on end.
Sandford encouraged her audience to be persistent, firm, honest and polite with doctors, seeking second opinions when necessary.
"Doctors make mistakes too," she said.
Keeping a journal of symptoms and when they arise may aid doctors in spotting patterns. Bringing along a friend or family member who's witnessed your symptoms can help, too. Sandford suggested researching medical terminology to help describe the symptoms.
"You don't want to say, 'My tummy hurts,'" she said. "You want to be able to tell the doctor you have a sharp, lingering pain in your lower-left abdomen."
Knowing about different diagnostic tests, such as various types of imaging, may also be useful.
After a diagnosis, Sandford encouraged finding an organization dedicated to that type of illness. She recently found Wake Up Narcolepsy.
As for friends of those with chronic illnesses, Sandford counseled listening and understanding.
"Don't compare yourself," she said. "I hate it when people say they're probably as tired as I am."
She also advised against offering unsolicited advice.
"I hope (fellow) students will learn how to listen to their bodies when they're having health problems, advocate for themselves and encourage others in similar situations," Sandford added.