Years of exhaustion and hallucinations... and one doctor revealed her illness

-Amy Clifton has three children and a loving husband, but she suffered from a rare sleep disorder that led her to consider ending her life. She says: “My children asked me in tears: Will you ever regain the energy to play with us?

“I felt hopeless, and I thought I was a burden on my family and that their lives would be better without me.” Amy began suffering from insomnia, nightmares, and extreme daytime sleepiness at the age of four, but she was diagnosed with narcolepsy type 1 about three decades later.

In her childhood, she was described as lazy, and doctors attributed her symptoms in adolescence to hormonal changes, while they considered her hallucinations to be night nightmares. This disease results from a lack of orexin in the brain, a substance that helps regulate sleep.

She said: “I would hear voices and see lights and shadows and people or creatures in my room that would terrify me, and I would ask myself: Have I lost my mind? The strong emotions would cause her muscles to suddenly go limp, a condition known as cataplexy, a symptom of narcolepsy type 1.”

She said: “My hands were weak and I would drop things, and when I laughed my head would shake and my knees would fail me, so I learned to hold on to something so as not to fall.” Despite the worsening of her suffering, doctors did not determine the cause. Rather, they incorrectly diagnosed her hallucinations and drowsiness as symptoms of bipolar II disorder, even after she was admitted to the hospital at the age of 29 after contemplating suicide.

She said: "The medications made me feel like a zombie, and my condition did not get better, but rather got worse. I was no longer the mother or wife I wanted to be."

Amy kept searching for answers to no avail, until she lost the will to live. Her husband, Peter, commented: “I had to constantly remind her to keep fighting and keep moving forward.”

Honeymoon Surprise Amy met Peter at a Christian college in Michigan. He noticed that she took frequent naps and had nightmares, but he did not realize the extent of her suffering until during their honeymoon in the US Virgin Islands.

Peter said: “I was watching her fall asleep smiling, and suddenly she sat up and punched me hard in the face.” Amy explained that she saw a man in the corner of the room and tried to call for help, but she suffered from sleep paralysis.

When she regained her ability to move and saw Peter bending over her, she panicked and hit him on the nose. For years, the incident on their wedding night has been a source of laughter at parties, despite Amy and Peter's inability to explain it.

Today, they know that they are “pre-sleep hallucinations,” which are one of the most prominent signs of narcolepsy of the first type. Peter said: “In the early years of our marriage, I would get up in my underwear and scan the rooms of the house, expecting to encounter someone, and then I would lie awake with my heart pounding and my blood pressure rising.

Today, I turn on the light and listen, and we are reassured that there is no danger and we go back to sleep, instead of inspecting the house room by room.” Intermittent sleep deprivation is linked to: The lack of sleep also gets worse after having children.

New challenges: Children and the Covid-19 pandemic Peter and Amy had their first child three years after their marriage, but she was waking up at night like her mother. Amy said: “Since she was a baby, my daughter has never slept more than a few hours at a time.

“Today, she is nine and has distinct attacks of partial cataplexy.” Two years later, they had twins, a boy and a girl, and Amy’s chances of rest were diminished.

Then the pandemic hit, after the family moved to a new town. Peter said: “Amy spent her time at home while I worked, with only her parents helping her, as we did not have a supportive circle of friends.

When the twins grew up and we felt that we were able to manage our affairs and meet new people, the lockdown was imposed.” Amy’s fatigue worsened despite her naps, while those with narcolepsy suffered from severe exhaustion that was difficult for others to understand.

Dr. Shelby Harris, a sleep psychologist, explained that fear of others' judgment leads many people to hide their symptoms. When the twins were two years old, she had thoughts of harming herself, so she asked Peter to take her to the hospital, where she spent six days.

But doctors again misdiagnosed her, linking her hallucinations and sleepiness to bipolar disorder. Misdiagnosis of narcolepsy is common for this disease, and it may take between 8 and 15 years to reach the correct diagnosis. 'I'm not losing my mind' At age 30, a doctor diagnosed Amy with narcolepsy type 1 after noticing her knees giving way when she laughed, a condition known as cataplexy.

“Finally, I felt like someone believed me,” she said, now 34. “I wasn’t losing my mind, I was suffering from a treatable medical condition.”

But the insurance company refused to cover the drug sodium oxybate, which relieves hallucinations, interrupted sleep, and cataplexy attacks, due to inconclusive sleep test results that were affected by the noise of construction work. Although her doctor, neurologist Aubrey Quinnell, confirmed the diagnosis based on her medical history and symptoms, the insurance decision is still under appeal.

Meanwhile, I received the medicine for free until the end of the year through a patient assistance program. Hope, grief, and advocacy for patients After more than a month of treatment, Amy regained some of her energy, her hallucinations disappeared, she began sleeping 5 to 6 hours straight, and enjoyed her time with her family, according to Peter.

But the drug's effect may diminish over time, which may force her to undergo medical procedures to qualify for "ofburexton," which the US Food and Drug Administration recently approved for use to treat the symptoms of type 1 narcolepsy. Ofburexton is the first drug to directly target orexin deficiency, and clinical trials have shown that it relieves all symptoms of narcolepsy, from cataplexy and hallucinations to disturbed nighttime sleep, extreme daytime sleepiness, and sleep paralysis.

Peter said: "We tried new medications several times, but we have to wait until the drug stabilizes to know its true effect." Amy realizes that narcolepsy will accompany her throughout her life, as there is no cure for it, but rather treatments are limited to alleviating its symptoms.

“When I was first diagnosed, I thought I would recover and regain my energy to be the mother I wanted to be,” she said. “I didn’t realize that narcolepsy was a chronic disease.” She added: “I sometimes mourn the life I could have lived without narcolepsy.

“When I regain my energy and can accomplish tasks, play with my children, share their moments, and feel joy, I glimpse the person I could have been, but I can't stay like this.” Amy can't bring back the years of suffering before her diagnosis, but through her work with advocacy groups like Project Sleep, she seeks to spread awareness of narcolepsy, speed up its diagnosis, and improve treatment opportunities.