Doctors misdiagnosed her sleep disorder for nearly three decades. She barely survived the wait

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.”

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.

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.”

Courtesy Amy Clifton

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.

Kawee Srital-on/Moment RF/Getty Images

Hollywood plays narcolepsy for laughs. A new report reveals the harm it can cause

“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.”

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.”

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.”

编者按：“战胜逆境”系列旨在颂扬那些以诚实、勇气和韧性与非凡逆境作斗争的普通人。

艾米·克利夫顿有三个漂亮的孩子，一个爱她的丈夫，以及一种罕见的睡眠障碍，这让她一度想要结束自己的生命。

“孩子们会哭着问：‘妈妈，你以后还有精力陪我们玩吗？’”艾米说，“我感到迷茫和绝望，真的觉得自己是家人的负担，没有我会更好。”

艾米四岁时就开始与失眠、噩梦和白天极度嗜睡作斗争。然而，医生花了近三十年才确诊并有效治疗她的1型嗜睡症。这种疾病的发生是因为大脑缺乏食欲素，而食欲素是一种稳定睡眠的关键化学物质。

如果没有足够的食欲素，大脑就会处于半睡半醒的状态——这使得 1 型嗜睡症变成一种严重的、可能危及生命的疾病，它会剥夺一个人工作、驾驶、承担家庭责任和过上充实、积极的生活的能力。

小学时，艾米被贴上了懒惰的标签。青少年时期，她睡眠不足，情绪波动剧烈，易怒，却被归咎于荷尔蒙作祟——儿科医生给她开了避孕药。嗜睡症患者常出现的令人痛苦的幻觉，也被轻描淡写地称为小孩子的“夜惊”。

“我十几岁的时候，经常睡着后听到有人从窗户跟我说话。我会看到门缝下有灯光忽明忽暗，门缝下有影子晃动，甚至还有人或生物站在我卧室的角落里，”艾米说。“我当时吓坏了，最后意识到那些都不是真的，我就想，‘我是不是疯了？为什么我会看到这些根本不存在的东西？’”

强烈的情绪会突然导致艾米的肌肉无力——这种情况被称为猝倒症，是1型嗜睡症的典型症状。艾米患有部分性猝倒症，这种病症只会影响某些肌肉，而不会导致全身僵硬。

“我的手会突然失去抓力，东西就会掉下来，”艾米说。“听到巨响时，我的身体会僵住；笑的时候，我的头会点头，膝盖也会发软。我很快就学会了遇到这种情况时要抓住什么东西，以免摔倒。”

然而，一位又一位医生都未能找出她症状的真正原因。即使在她29岁时，这些症状导致她产生自杀念头并住院治疗，专家们仍然将她的幻觉和嗜睡误诊为双相情感障碍II型。

“他们给我开的治疗双相情感障碍的药让我感觉像个行尸走肉，”艾米说。“然后我想，‘这些药不仅没让我感觉好些，反而让我感觉更糟了。我不是我想成为的那种妈妈，也不是我想成为的那种妻子。’”

无论她向谁寻求帮助，都得不到任何答复。艾米陷入了绝望。

“她失去了体验生活的意志，”艾米的丈夫彼得·克利夫顿说。“我不得不提醒她，‘记住要继续战斗，记住要坚持下去。’”

艾米和彼得在密歇根州的一所基督教文理学院相识，当时艾米是大一新生，彼得是大三学生。随着感情的加深，彼得知道艾米经常午睡，偶尔也会做噩梦，但他并没有意识到她内心深处的挣扎。直到他们在美属维尔京群岛度蜜月，这一切才发生了改变。

“那是我们在一起的第一个晚上，”彼得说。“房间里什么都没有。我低头看着她，微笑着，她渐渐睡着了。突然，她坐起来，一拳打在我脸上。我是说，她真的打了我一拳。”

艾米的感受则不同。“房间角落里有个男人，这总是让我感到恐惧。我试图呼救，但却发不出声音——我动弹不得，这是嗜睡症的另一个症状。当我终于能动弹，看到彼得俯身靠近我时，我吓坏了，一拳打在他的鼻子上。我为此感到非常懊悔！”

多年来，他们新婚之夜的“意外”总能引来聚会上的笑声，但艾米和彼得都无法解释那些幻觉的成因。如今他们才知道，“入睡幻觉”是1型嗜睡症的关键症状。艾米几乎每晚都会发作一次。

“这种情况很少发生，”彼得说。“在我们结婚初期，我经常穿着内裤起床，挨个房间转悠，想着要揍谁一顿。然后我就会醒好一会儿——心跳加速，血压升高。”

“现在，我只要打开灯，听听，我们俩都会意识到没什么好担心的，然后就能安心入睡了，”他说。“我不再是‘海豹突击队第六分队’，挨个房间搜查房子了。”

然而，睡眠中断会导致睡眠不足，而研究表明睡眠不足与慢性疾病、抑郁症、焦虑症以及自杀念头的风险增加有关。而且，正如每位父母都知道的那样，孩子出生后，睡眠不足的问题只会更加严重。

彼得和艾米结婚三年后迎来了他们的第一个孩子，一个女儿。对于这对新手父母和小女孩来说，睡眠都变得异常短暂。

“我女儿从婴儿时期就很难睡超过几个小时，像我一样经常半夜醒来。睡眠断断续续是嗜睡症的主要症状之一，”艾米说。“现在她9岁了，出现了典型的部分性猝倒发作。”

两年后，一对龙凤胎出生了。艾米原本就少得可怜的休息时间也被彻底剥夺了。随后，疫情爆发，世界陷入了沉寂。

“我们刚搬到一个新城镇。我上班的时候，艾米只能待在家里，只有她父母帮忙——我们还没有一个可以依靠的朋友圈，”彼得说。“然后，就在双胞胎长大到我们觉得可以掌控局面，开始结识新朋友的时候，疫情封锁来了。”

感谢艾米·克利夫顿提供图片

艾米的疲惫感越来越强烈。即使两个婴儿和一个幼儿午睡时她也能睡一会儿，但这远远不够。对于嗜睡症患者来说，每天都要承受48到72小时睡眠不足带来的深入骨髓的疲惫——专家表示，这种痛苦很少有人能真正理解。

“人们对嗜睡症有一种刻板印象，几乎把它当成一个笑话，”获得委员会认证的睡眠医学心理学家、布朗克斯阿尔伯特·爱因斯坦医学院临床副教授谢尔比·哈里斯博士说。

Kawee Srital-on/Moment RF/Getty Images

好莱坞拿嗜睡症开玩笑。一份新的报告揭示了它可能造成的危害。

“人们觉得你有问题。你不可靠。你无法融入社会，”她说。“很多嗜睡症患者没有被确诊，但他们往往不愿告诉医生自己的症状，因为他们害怕被评判。”

艾米因为自己缺乏精力而深感自责，她不断寻求帮助。然而，每次例行血液检查，包括甲状腺问题、铁和维生素缺乏症等，结果都显示正常。

“有人说我只是个普通的、疲惫不堪的双胞胎妈妈，”艾米说。“我甚至到了早上都不想起床的地步。我知道这意味着又要经历一天的精疲力竭、内疚和羞愧，因为我没能尽全力照顾好我的孩子们。”

双胞胎两岁了。艾米的自我厌恶感越来越深。有一天，她意识到自己再也无法摆脱自残的念头。

“她哭着给我打电话，说‘我得去医院’，”彼得回忆道。“我的岳父母过来帮忙照顾孩子，我想，‘好吧，我们去看医生，然后就能回家了。’但艾米在医院待了六天。我不知道她到底怎么了。我一直在祈祷。”

艾米再次被误诊。精神科医生将她的幻觉诊断为躁郁症发作，将她的嗜睡诊断为双相抑郁症。

专家表示，不幸的是，误诊现象十分普遍。很大一部分嗜睡症患者被误诊为癫痫、注意力缺陷障碍、躁狂症、精神病，甚至精神分裂症。即使最终能够确诊，也平均需要八到十五年的时间。

“我们离开医院时，艾米仍然很迷茫，”彼得说。“我告诉她，‘我会抱着你，我会做溪流中的磐石。你也要紧紧抓住我，我们一定能渡过难关。’”

30岁那年，艾米终于找到了她需要的突破：一位能够识别出嗜睡症症状的医生。考虑到大多数医学院的课程中关于睡眠的教育时间不足两小时，这无疑是一个幸运的转机。

“他听了我的睡眠史，当他听到我出现幻觉时，他问我：‘你笑的时候会感觉膝盖发软吗？’”艾米说。“我当时就说：‘天哪，是的。’然后他告诉我：‘那是猝倒症——而且我认为你患有1型嗜睡症，一种睡眠障碍。’”

“我终于感到自己的感受被理解和认可了。不，我没有疯——我只是患有可以治疗的疾病。我真的相信他救了我的命，”现年34岁的艾米说道。

诊断结果让艾米得到了答案，但并不能保证她一定能得到治疗。羟丁酸钠可以减轻幻觉、睡眠断断续续和猝倒发作，但它属于联邦管制的第三类处方药，只有在进行深入的睡眠研究或腰椎穿刺后，保险公司才会报销。

“它的配方与迷奸药类似，但效力要低得多，”艾米的睡眠专家、密歇根大学西部健康中心的神经科医生奥布里·库内尔博士说。“它已被证明可以稳定并促进深度睡眠，我知道艾米想要它是为了不再在夜里吵醒她的丈夫。”

然而，保险公司拒绝支付这种药物的费用（该药物每月费用可能超过 12,000 美元），因为艾米的一项睡眠测试结果不确定。

“测试期间施工噪音很大，我们无法控制，而且艾米进入快速眼动睡眠的时间不够快，不符合测试标准，”库内尔医生说。“但如果考虑到她所有的病史，包括幻觉和猝倒症，我认为她被诊断为1型嗜睡症。”

目前已向保险公司提出上诉，艾米的医生也已安排她参加制造商的患者援助计划，该计划可免费提供该药物直至年底。

真是雪中送炭。艾米的幻觉越来越严重了。

“我看到的人总是在房间的另一边，在窗边或门口，”艾米说。“但最近我醒来时发现两个人挤在我和彼得之间，躺在床上。他们趴着，双手托着下巴，用诡异的笑容看着我。”

“他们歪着头，眼睛一起转动——我觉得就像恶魔一样——当我开始叫醒彼得时，他们看着他，又看着我，好像在说，‘他看不见我们。’就在那时，我尖叫起来。”

彼得猛地从床上坐了起来。

“那声音太吓人了，就像恐怖电影里的场景一样，”他说。“那是我听过最恐怖的尖叫声。我打开灯，她就歇斯底里地哭喊。谢天谢地，灯一亮，那些人就都走了。但她花了很长时间才平静下来。”

艾米服用新药已经一个多月了，她谨慎地抱有希望。她的精力比以前充沛了，和彼得以及孩子们一起享受着生活。

“以前有时候早上我怎么也叫不醒艾米，或者她下午睡午觉，晚饭都睡着了，”彼得说。“谢天谢地，现在这种情况不会发生了。”

最显著的变化是什么？艾米不再受幻觉困扰了。

“她现在能睡五六个小时，不会再惊慌地把我吵醒了，这真是太好了。”彼得说。“要是她能睡足八个小时就更好了，不过能睡够我就很满足了！”

她服用的新药疗效可能会随着时间推移而减弱。如果出现这种情况，她将不得不接受侵入性手术，才能获得一种全新的药物——奥维普雷斯顿（oveporexton）——该药最近已获得美国食品药品监督管理局批准用于治疗1型嗜睡症。

Oveporexton是首个直接针对大脑中食欲素缺失的药物。临床试验表明，该药物可减轻该疾病的所有症状——猝倒、夜间睡眠紊乱、白天过度嗜睡、幻觉和睡眠瘫痪。

“我们已经多次经历过服用新药的过程了，”彼得说。“你必须等到药物起效后才能知道真正的影响——你知道，正常状态会是什么样子？”

无论哪种药物效果最好，艾米都知道她与嗜睡症的斗争将是一场终生的战斗——没有治愈方法，只能控制症状。

“当我第一次被确诊时，我想，‘我肯定会好起来的——我肯定会有精力再次成为我想成为的那种妈妈！’我当时并没有意识到嗜睡症是一种慢性疾病，”艾米说。

“有时候我会为没有嗜睡症的生活而感到悲伤。当我精力充沛，感觉自己充满活力、清醒自在——能够高效工作、陪伴孩子玩耍、活在当下、感受快乐——我仿佛看到了自己本该拥有的模样。我悲伤的是，我无法永远停留在那种状态。”

艾米无法弥补那些因医生未能识别出她的症状而饱受折磨的岁月。但她希望其他患有嗜睡症的人能够免受同样的痛苦。作为“睡眠项目”（Project Sleep）等倡导组织的受过专业培训的演讲者，她致力于提高人们对这种疾病的认识，并争取更快的诊断和更好的治疗途径。

“我当然希望我挚爱的人没有遭遇这一切，”彼得说。“但你知道，她勇敢地公开了自己的经历，我觉得她帮助了很多人。她坚韧不拔的精神令人惊叹。”