\n Without enough orexin, the brain is left half asleep, half awake \u2014 turning type 1 narcolepsy into a serious, potentially life-threatening condition that can steal a person\u2019s ability to work, drive, manage family responsibilities and live a full, active life.\n <\/p>\n
\n In elementary school, Amy was branded lazy. As a sleep-deprived teen plagued by mood swings and irritability, she was dismissed as hormonal \u2014 her pediatrician prescribed birth control. Distressing hallucinations that often occur with narcolepsy were written off as childish \u201csleep terrors.\u201d\n <\/p>\n
\n \u201cWhen I was a teenager, I\u2019d be asleep and hear someone talking to me through the window. I\u2019d 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,\u201d Amy said. \u201cI was terrified, and when I would finally realize they weren\u2019t real, I was like, \u2018Am I going insane? Why am I seeing these things that aren\u2019t here?\u2019\u201d\n <\/p>\n
\n Strong emotions could suddenly cause Amy\u2019s muscles to give way \u2014 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.\n <\/p>\n
\n \u201cMy grip would fail suddenly, and I would drop things,\u201d Amy said. \u201cMy 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.\u201d\n <\/p>\n
![\"Amy's](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/screenshot-2026-10-08-at-12-43-05-pm-20261008165657932.png\")
<\/p>\n
Amy’s laughter over a startled dog triggers an episode of partial cataplexy.\n <\/p>\n
![\"Amy's](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/screenshot-2026-10-08-at-12-43-05-pm-20261008165657932.png&q=w_860,c_fill\")
<\/p>\n
Amy’s laughter over a startled dog triggers an episode of partial cataplexy.<\/p>\n
0:24<\/p>\n
\n 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.\n <\/p>\n
\n \u201cThe medications they gave me for bipolar made me feel like a zombie,\u201d Amy said. \u201cThen I thought, \u2018These meds aren\u2019t helping me feel better, I\u2019m feeling worse. I\u2019m not the mom I want to be. I\u2019m not the wife I want to be.\u2019\u201d\n <\/p>\n
\n No matter where she turned for help, there were no answers. Amy slipped into despair.\n <\/p>\n
\n \u201cShe lost the will to experience life,\u201d said Amy\u2019s husband, Peter Clifton. \u201cI had to remind her, \u2018Remember to keep fighting, remember to keep going.\u2019\u201d\n <\/p>\n
\n 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\u2019t realize the depth of her struggles. That changed during their honeymoon in the US Virgin Islands.\n <\/p>\n
\n \u201cIt was our first night together,\u201d Peter said. \u201cThere\u2019s nothing in the room. I\u2019m 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.\u201d\n <\/p>\n
\n Amy\u2019s perspective was different. \u201cThere was a man in the corner of the room, which always terrifies me. I tried to yell for help, but I couldn\u2019t \u2014 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!\u201d\n <\/p>\n
![\"Peter](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/img-0393.jpg\")
<\/p>\n
\n For years, their wedding-night mishap drew laughs at parties, though neither Amy nor Peter could explain why the visions happened. Today they know \u201chypnagogic hallucinations<\/a>\u201d are a key sign of type 1 narcolepsy. Amy has an episode nearly every night.\n <\/p>\n \n \u201cIt\u2019s rare when it doesn\u2019t happen,\u201d Peter said. \u201cIn the early days of our marriage, I\u2019d get up in my boxers and go look through all the rooms, expecting to jump somebody. Then I\u2019d be up for a while \u2014 my heart pumping, my blood pressure rising.\n <\/p>\n \n \u201cToday, I can turn on the light and listen, and we both realize there\u2019s nothing to worry about and pretty much fall back to sleep,\u201d he said. \u201cI\u2019m not \u2018SEAL Team Six\u2019 going through the house clearing every room anymore.\u201d\n <\/p>\n \n Still, interrupted sleep leads to sleep deprivation,<\/a> which studies have linked to chronic illness<\/a>, depression,<\/a> anxiety<\/a> and an increased risk of suicidal thoughts<\/a>. And, as every parent knows, sleep deficits only grow worse when children arrive.\n <\/p>\n New challenges: Children and Covid-19<\/p>\n \n 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.\n <\/p>\n \n \u201cEver 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,\u201d Amy said. \u201cNow, she\u2019s 9 years old and having classic episodes of partial cataplexy.\u201d\n <\/p>\n \n 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.\n <\/p>\n \n \u201cWe\u2019d just moved to a new town. Amy was stuck at home while I worked, with only her parents to help \u2014 we didn\u2019t yet have a community of supportive friends,\u201dPeter said. \u201cThen just when the twins were old enough that we felt in control and could start meeting new people, the lockdown hit.\u201d\n <\/p>\n \n Amy\u2019s exhaustion deepened. Sleeping while two babies and a toddler napped wasn\u2019t enough. For people with narcolepsy, each day carries the bone-deep weariness of 48 to 72 hours of sleep deprivation \u2014 a toll experts say few people understand.\n <\/p>\n \n \u201cThere\u2019s this stereotypical portrayal of narcolepsy as almost a joke,\u201d said board certified sleep medicine psychologist Dr. Shelby Harris, a clinical associate professor at the Albert Einstein College of Medicine in the Bronx.\n <\/p>\n \n \u201cPeople think there\u2019s something wrong with you. You can\u2019t be relied upon. You can\u2019t function in society,\u201d she said. \u201cMany people with narcolepsy are not diagnosed, but often they won\u2019t tell doctors about their symptoms because they\u2019re afraid of being judged.\u201d\n <\/p>\n \n 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.\n <\/p>\n \n \u201cI was told I just a typical, tired mom with twins,\u201d Amy said. \u201cI got to the point I didn\u2019t 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.\u201d\n <\/p>\n Amy would often fall asleep while playing with her children.\n <\/p>\n Amy would often fall asleep while playing with her children.<\/p>\n 0:06<\/p>\n \n 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.\n <\/p>\n \n \u201cShe called me sobbing and says, \u2018I have to go to the hospital\u2019,\u201d Peter recalled. \u201cMy in-laws came over to watch the kids, and I thought, \u2018OK, we\u2019re going to talk to a doctor, and then we\u2019ll be home.\u2019 But Amy was there for six days. I didn\u2019t know what was happening to her. I was praying all the time.\u201d\n <\/p>\n \n Once again, Amy was misdiagnosed. Psychiatrists labeled her hallucinations as manic bipolar episodes and her sleepiness as bipolar depression.\n <\/p>\n \n 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.\n <\/p>\n \n \u201cWe left the hospital, and Amy was still so lost,\u201d Peter said. \u201cI told her, \u2018I am going to hold you, I\u2019ll be that rock in the stream. And you\u2019re going to hold on to me, and we will get through this.\u2019\u201d\n <\/p>\n \n 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.\n <\/p>\n \n \u201cHe listened to my sleep history, when he heard about my hallucinations, he asked, \u2018Do you feel like your knees buckle when you laugh?\u2019\u201d Amy said. \u201cI was like, \u2018Oh my gosh, yes.\u2019 And he told me, \u2018That\u2019s cataplexy \u2014 and I think you have type 1 narcolepsy, a sleep disorder.\u2019\n <\/p>\n \n \u201cFinally, I felt heard and validated. No, I\u2019m not going insane \u2014 I have a medical condition that can be treated. I truly believe he saved my life,\u201d said Amy, now 34.\n <\/p>\n \n 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.\n <\/p>\n \n \u201cIt\u2019s a formula similar to the date rape drug, but at drastically lower potency,\u201d said Amy\u2019s current sleep specialist, Dr. Aubrey Kuehnel, a neurologist associated with University of Michigan Health-West. \u201cIt\u2019s been shown to stabilize and promote deep sleep and I know Amy wanted it so she could stop waking her husband at night.\u201d\n <\/p>\n \n Insurance, however, denied coverage for the drug \u2014 which can cost over $12,000 a month \u2014 because one of Amy\u2019s sleep tests was inconclusive.\n <\/p>\n \n \u201cThere was construction noise during the test which we couldn\u2019t control, and Amy didn\u2019t fall into REM sleep quickly enough to meet testing standards,\u201d Dr. Kuehnel said. \u201cBut if you take into account all of her history, including hallucinations and cataplexy, I believe she has a diagnosis of type 1 narcolepsy.\u201d\n <\/p>\n \n An appeal with the insurance company is underway, and Amy\u2019s doctor was able to enroll her in the manufacturer\u2019s patient assistance program, which provides the drug free of charge until the end of the year.\n <\/p>\n \n It couldn\u2019t come at a better time. Amy\u2019s hallucinations have been escalating.\n <\/p>\n \n \u201cThe people I see have always been across the room, by the window or the door,\u201d Amy said. \u201cBut 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.\n <\/p>\n \n \u201cThey tilted their heads and their eyes moved together \u2014 like demons, I thought \u2014 and when I started to wake Peter up, they looked at him and back at me as if they were saying, \u2018He can\u2019t see us.\u2019 That\u2019s when I screamed.\u201d\n <\/p>\n \n Peter bolted upright in bed.\n <\/p>\n \n \u201cIt was blood curdling, like from a horror movie,\u201d he said. \u201cIt was the most terrifying scream I\u2019d 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.\u201d\n <\/p>\n Hope, grief and advocacy<\/p>\n \n It\u2019s 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.\n <\/p>\n \n \u201cThere were times in the past when I couldn\u2019t get Amy out of bed in the mornings, or she\u2019d nap in the afternoon and sleep through dinner,\u201d Peter said. \u201cThankfully, that doesn\u2019t happen now.\u201d\n <\/p>\n \n The most striking change? Amy is no longer plagued by hallucinations.\n <\/p>\n \n \u201cShe is now sleeping five to maybe six hours without waking me up in a panic anymore, which is great.\u201d Peter said. \u201cIt would be nice if she was getting a full eight hours, but I will take what I can get!\u201d\n <\/p>\n \n 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 \u2014 oveporexton<\/a> \u2014 recently approved for type 1 narcolepsy by the US Food and Drug Administration.\n <\/p>\n \n 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 \u2014 cataplexy, disrupted nighttime sleep, excessive daytime sleepiness, hallucinations and sleep paralysis.\n <\/p>\n \n \u201cWe\u2019ve been through the process of taking new medications so many times,\u201d Peter said. \u201cYou have to wait for it to settle in to know the real impact \u2014 you know, what\u2019s normal gonna be like?\u201d\n <\/p>\n \n Regardless of which drug works best, Amy knows her struggle with narcolepsy will be a lifelong battle \u2014 there is no cure, only management of her symptoms.\n <\/p>\n \n \u201cWhen I was first diagnosed, I thought, \u2018I\u2019m going to be fixed \u2014 I\u2019m going to have energy to be the mom that I want to be again!\u2019 I didn\u2019t realize narcolepsy was a chronic condition,\u201d Amy said.\n <\/p>\n \n \u201cThere are times I grieve for the life I might have had without narcolepsy. When I have enough energy to feel alive and awake \u2014 to be productive, play with my kids, be present and feel joy \u2014 I glimpse who I could be all the time. What I grieve is that I can\u2019t stay there.\u201d\n <\/p>\n ![\"Narcolepsy](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/img-5300-20261006160717139.jpg\")
<\/p>\n![\"Screenshot](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/screenshot-2026-10-08-at-12-25-08-pm.png\")
<\/p>\n![\"Screenshot](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/screenshot-2026-10-08-at-12-25-08-pm.png&q=w_860,c_fill\")
<\/p>\n![\"Amy's](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/img-9867-20261006160342234.jpg\")
<\/p>\n![\"Amy](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/10\/260922-as-wellness-amynarcolepsy-photo-246145-0139.jpg\")
<\/p>\n