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EDITOR’S NOTE: “Overcoming the Odds” is a series celebrating everyday people who battle extraordinary adversities with honesty, courage and resilience. Amy Clifton has three beautiful children, a loving husband and a rare sleep disorder that drove her to consider taking her life. “My kids would cry and say, ‘Mommy, are you ever going to have enough energy to play with us again?’” Amy said.
“I felt lost and hopeless, genuinely believing I was a burden to my family and that they would be better off without me.” By age 4, Amy was battling insomnia, nightmares and overwhelming daytime sleepiness. Yet it took nearly three decades for doctors to diagnose and adequately treat her type 1 narcolepsy . The condition occurs because the brain is starved of orexin, a key chemical that stabilizes sleep.
Without enough orexin, the brain is left half asleep, half awake — turning type 1 narcolepsy into a serious, potentially life-threatening condition that can steal a person’s ability to work, drive, manage family responsibilities and live a full, active life. In elementary school, Amy was branded lazy. As a sleep-deprived teen plagued by mood swings and irritability, she was dismissed as hormonal — her pediatrician prescribed birth control.
Distressing hallucinations that often occur with narcolepsy were written off as childish “sleep terrors.” “When I was a teenager, I’d be asleep and hear someone talking to me through the window. I’d see lights going on and off under my door, shadows going under the door and even people or creatures standing in the corner of my bedroom,” Amy said. “I was terrified, and when I would finally realize they weren’t real, I was like, ‘Am I going insane?
Why am I seeing these things that aren’t here?’” Strong emotions could suddenly cause Amy’s muscles to give way — a condition called cataplexy and a hallmark of type 1 narcolepsy. Amy has partial catalepsy, which only impacts certain muscles instead of freezing the entire body. “My grip would fail suddenly, and I would drop things,” Amy said.
“My body froze when I heard a loud noise, and when I laughed, my head would nod and my knees would buckle. I quickly learned to hold on to something when that happened to keep from falling.” Amy's laughter over a startled dog triggers an episode of partial cataplexy. 0:24 • Source: CNN Amy's laughter over a startled dog triggers an episode of partial cataplexy. 0:24 Yet doctor after doctor failed to identify the true cause of her symptoms. Even when the toll led to suicidal thoughts and hospitalization at age 29, specialists misdiagnosed her hallucinations and sleepiness as bipolar 2 disorder.
“The medications they gave me for bipolar made me feel like a zombie,” Amy said. “Then I thought, ‘These meds aren’t helping me feel better, I’m feeling worse. I’m not the mom I want to be.
I’m not the wife I want to be.’” No matter where she turned for help, there were no answers. Amy slipped into despair. “She lost the will to experience life,” said Amy’s husband, Peter Clifton.
“I had to remind her, ‘Remember to keep fighting, remember to keep going.’” Amy and Peter began dating at a Christian liberal arts college in Michigan, when she was a freshman and he was a junior. As their relationship grew, he knew she often napped and had occasional nightmares, but he didn’t realize the depth of her struggles. That changed during their honeymoon in the US Virgin Islands.
“It was our first night together,” Peter said. “There’s nothing in the room. I’m smiling down at her while she drifts off to sleep.
Suddenly she sits up and punches me in the face. I mean, she really slugged me.” Amy’s perspective was different. “There was a man in the corner of the room, which always terrifies me.
I tried to yell for help, but I couldn’t — I was paralyzed, another part of narcolepsy. When I was able to move and saw Peter leaning over me, I was so freaked out that I punched him in the nose. I felt horrible about it!” For years, their wedding-night mishap drew laughs at parties, though neither Amy nor Peter could explain why the visions happened.
Today they know “ hypnagogic hallucinations ” are a key sign of type 1 narcolepsy. Amy has an episode nearly every night. “It’s rare when it doesn’t happen,” Peter said.
“In the early days of our marriage, I’d get up in my boxers and go look through all the rooms, expecting to jump somebody. Then I’d be up for a while — my heart pumping, my blood pressure rising. “Today, I can turn on the light and listen, and we both realize there’s nothing to worry about and pretty much fall back to sleep,” he said.
“I’m not ‘SEAL Team Six’ going through the house clearing every room anymore.” Still, interrupted sleep leads to sleep deprivation, which studies have linked to chronic illness , depression, anxiety and an increased risk of suicidal thoughts . And, as every parent knows, sleep deficits only grow worse when children arrive. New challenges: Children and Covid-19 Peter and Amy welcomed their first child, a daughter, three years after they married.
Sleep was fleeting for both the new parents and the little girl. “Ever since she was a baby, my daughter has struggled to stay asleep more than a few hours, waking up in the night like I do. Fragmented sleep is huge part of narcolepsy,” Amy said.
“Now, she’s 9 years old and having classic episodes of partial cataplexy.” Twins, a boy and a girl, arrived two years later. What little rest Amy got was ripped away. Then the pandemic arrived and the world went silent.
“We’d just moved to a new town. Amy was stuck at home while I worked, with only her parents to help — we didn’t yet have a community of supportive friends,”Peter said. “Then just when the twins were old enough that we felt in control and could start meeting new people, the lockdown hit.” Amy’s exhaustion deepened.
Sleeping while two babies and a toddler napped wasn’t enough. For people with narcolepsy, each day carries the bone-deep weariness of 48 to 72 hours of sleep deprivation — a toll experts say few people understand. “There’s this stereotypical portrayal of narcolepsy as almost a joke,” said board certified sleep medicine psychologist Dr.
Shelby Harris, a clinical associate professor at the Albert Einstein College of Medicine in the Bronx. “People think there’s something wrong with you. You can’t be relied upon.
You can’t function in society,” she said. “Many people with narcolepsy are not diagnosed, but often they won’t tell doctors about their symptoms because they’re afraid of being judged.” Full of self-reproach for her lack of energy, Amy kept searching for help. Yet routine blood tests that checked for thyroid issues or iron and vitamin deficiencies always came back normal.
“I was told I just a typical, tired mom with twins,” Amy said. “I got to the point I didn’t want to get up in the morning. I knew that meant another day of total exhaustion, guilt and shame for not being my best for my kids.” Amy would often fall asleep while playing with her children. 0:06 • Source: CNN Amy would often fall asleep while playing with her children. 0:06 The twins turned two.
Amy spiraled deeper into self-loathing. One day, she realized she was no longer safe from her thoughts of self-harm. “She called me sobbing and says, ‘I have to go to the hospital’,” Peter recalled.
“My in-laws came over to watch the kids, and I thought, ‘OK, we’re going to talk to a doctor, and then we’ll be home.’ But Amy was there for six days. I didn’t know what was happening to her. I was praying all the time.” Once again, Amy was misdiagnosed.
Psychiatrists labeled her hallucinations as manic bipolar episodes and her sleepiness as bipolar depression. Unfortunately, misdiagnoses are common, experts say. A large percentage of people with narcolepsy are told they have epilepsy, attention deficit disorder, mania, psychosis and even schizophrenia.
It can take an average of eight to 15 years to be properly diagnosed, if it happens at all. “We left the hospital, and Amy was still so lost,” Peter said. “I told her, ‘I am going to hold you, I’ll be that rock in the stream.
And you’re going to hold on to me, and we will get through this.’” At age 30, Amy finally found the breakthrough she needed: a doctor who recognized the signs of narcolepsy. It was a fortunate turn, considering most medical school curriculums provide less than two hours of sleep education. “He listened to my sleep history, when he heard about my hallucinations, he asked, ‘Do you feel like your knees buckle when you laugh?’” Amy said.
“I was like, ‘Oh my gosh, yes.’ And he told me, ‘That’s cataplexy — and I think you have type 1 narcolepsy, a sleep disorder.’ “Finally, I felt heard and validated. No, I’m not going insane — I have a medical condition that can be treated. I truly believe he saved my life,” said Amy, now 34.
The diagnosis gave Amy answers but no guaranteed access to treatment. Sodium oxybate, which reduces hallucinations, fragmented sleep and episodes of cataplexy, is a Schedule III federally controlled prescription that insurance will cover only after in-depth sleep studies or a spinal tap. “It’s a formula similar to the date rape drug, but at drastically lower potency,” said Amy’s current sleep specialist, Dr.
Aubrey Kuehnel, a neurologist associated with University of Michigan Health-West. “It’s been shown to stabilize and promote deep sleep and I know Amy wanted it so she could stop waking her husband at night.” Insurance, however, denied coverage for the drug — which can cost over $12,000 a month — because one of Amy’s sleep tests was inconclusive. “There was construction noise during the test which we couldn’t control, and Amy didn’t fall into REM sleep quickly enough to meet testing standards,” Dr.
Kuehnel said. “But if you take into account all of her history, including hallucinations and cataplexy, I believe she has a diagnosis of type 1 narcolepsy.” An appeal with the insurance company is underway, and Amy’s doctor was able to enroll her in the manufacturer’s patient assistance program, which provides the drug free of charge until the end of the year. It couldn’t come at a better time.
Amy’s hallucinations have been escalating. “The people I see have always been across the room, by the window or the door,” Amy said. “But recently I woke to see two people squeezed between Peter and me on the bed.
They were on their stomachs, with their chins on their hands, looking at me with these creepy smiles. “They tilted their heads and their eyes moved together — like demons, I thought — and when I started to wake Peter up, they looked at him and back at me as if they were saying, ‘He can’t see us.’ That’s when I screamed.” Peter bolted upright in bed. “It was blood curdling, like from a horror movie,” he said.
“It was the most terrifying scream I’d ever heard. I turned on the light and she was in hysterics. Thankfully, as soon as the light came on, the people went away.
But it took a long time for her to calm down.” Hope, grief and advocacy It’s been over a month since Amy started the new drug and she is cautiously hopeful. Her energy is up and she is enjoying life with Peter and the children. “There were times in the past when I couldn’t get Amy out of bed in the mornings, or she’d nap in the afternoon and sleep through dinner,” Peter said.
“Thankfully, that doesn’t happen now.” The most striking change? Amy is no longer plagued by hallucinations. “She is now sleeping five to maybe six hours without waking me up in a panic anymore, which is great.” Peter said.
“It would be nice if she was getting a full eight hours, but I will take what I can get!” There is a chance the benefits of her new medication may fade over time. If that happens, she will have to undergo invasive procedures to qualify for a brand new medication — oveporexton — recently approved for type 1 narcolepsy by the US Food and Drug Administration. Oveporexton is the first medication to directly target the loss of orexin in the brain.
Clinical trials showed the drug reduced every symptom of the disorder — cataplexy, disrupted nighttime sleep, excessive daytime sleepiness, hallucinations and sleep paralysis. “We’ve been through the process of taking new medications so many times,” Peter said. “You have to wait for it to settle in to know the real impact — you know, what’s normal gonna be like?” Regardless of which drug works best, Amy knows her struggle with narcolepsy will be a lifelong battle — there is no cure, only management of her symptoms.
“When I was first diagnosed, I thought, ‘I’m going to be fixed — I’m going to have energy to be the mom that I want to be again!’ I didn’t realize narcolepsy was a chronic condition,” Amy said. “There are times I grieve for the life I might have had without narcolepsy. When I have enough energy to feel alive and awake — to be productive, play with my kids, be present and feel joy — I glimpse who I could be all the time.
What I grieve is that I can’t stay there.” Amy cannot reclaim the years she spent in distress while doctors failed to recognize her symptoms. But she hopes to spare others with narcolepsy the same ordeal. As a trained speaker for advocacy groups such as Project Sleep, she raises awareness of the condition and fights for faster diagnosis and better access to treatment.
“Would I rather have this had not happened to the love of my life? Yes, totally,” Peter said. “But you know, she’s done so much with speaking out about her struggle and I think she’s helped a lot of people.
It’s amazing how resilient she is.”
Source: CNN
