{"id":75391,"date":"2025-05-10T13:09:44","date_gmt":"2025-05-10T11:09:44","guid":{"rendered":"https:\/\/visualjournalism.de\/?post_type=magazin&p=75391"},"modified":"2026-10-09T11:54:03","modified_gmt":"2026-10-09T09:54:03","slug":"narcolepsy","status":"publish","type":"magazin","link":"https:\/\/visualjournalism.de\/en\/magazine\/after-dark\/narcolepsy\/","title":{"rendered":"Narcolepsy: when sleep becomes an illness"},"content":{"rendered":"\r\n
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\n\tAfter dark<\/a><\/div>\r\n

\r\n Narcolepsy: when sleep becomes an illness <\/h2>\r\n\r\n
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Sudden attacks, hallucinations, leaden tiredness: student Livia Sommer looks for answers in a sleep lab.
\nBy Antonia R\u00f6hrer<\/a> (text), Anton Vester<\/a> (photos)<\/strong><\/p>\n <\/div>\r\n \r\n

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It feels like chewing gum.<\/strong> Like chewing gum stuck to the inside of her skull. Livia Sommer* is trying to fight off an approaching sleep attack. The gum stretches longer and longer; she tries to stick it back with her thoughts and so stay awake. It doesn\u2019t work. At some point there\u2019s a \u2018pop\u2019 and the gum comes away from the bone. A feeling as if worlds were blurring. She is aware of what\u2019s happening around her, and at the same time she is dreaming. Sommer falls asleep \u2013 in the middle of the university library in Hannover\u2019s city centre. Yet again.<\/p>\n\n\n

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\n \"Student\n \n Hannover, June 2024<\/span>\n <\/div>\n\n

Student Livia Sommer<\/strong> (name changed) in the TIB university library \u2013 she has often suddenly fallen asleep here while studying.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n\n\n\n



The feeling that<\/strong> feels like chewing gum is nothing new to her: sleep now governs Sommer\u2019s everyday life. She falls asleep several times a day, wherever she happens to be \u2013 in lectures, at work, in the car. Around 40,000 people in Germany who have narcolepsy suffer similar sleep attacks. Now the neurological disorder is a possibility for the student too. That\u2019s why today Sommer is heading to one of the three neurological sleep labs in Lower Saxony: the one at Lindenbrunn Hospital in Coppenbr\u00fcgge. In one of the clinic\u2019s two beds, doctors will test tonight whether Sommer, as suspected, has the \u2018sleeping sickness\u2019.<\/p>\n\n\n

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\n \"Livia\n \n Coppenbr\u00fcgge, Lindenbrunn Hospital sleep lab<\/span>\n <\/div>\n\n

On the first day <\/strong>of her hospital stay, head of department Dr Evers conducts the admission interview and explains the tests ahead.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n\n\n\n

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At the moment I\u2019m in a solid, middling-to-bad phase. <\/strong>When I got the appointment here last year, I thought: I hope I don\u2019t die before then.<\/p>\n <\/blockquote>\r\n\r\n

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\n\n \"Sommer\n\n \n

Nurse Marie Drebing<\/strong> attaches the first two electrodes around the eyes \u2013 they measure Livia\u2019s eye movements while she sleeps.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n <\/div> \n\n\n \n\n \n \n\n

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As a reminder of how to wire up the head,<\/strong> nurse Marie Drebing uses a sketch.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n <\/div> \n\n\n \n\n \n<\/div>\n\n\n

Sommer is being wired up.<\/strong> The 24-year-old sits on the edge of her bed in the sleep lab in a T-shirt and pyjama bottoms. It\u2019s 8 p.m., and everything is ready for the polysomnography, the examination that will decide part of Sommer\u2019s future. \u2018Degreasing, roughening, optimal conductivity\u2019 it says on the cream that nurse Marie Drebing is applying to her face. Next come the white adhesive electrodes: one on the chin, two behind the ears, two either side of the mouth, one on the forehead and two above and below the eyes. Belts are fastened tightly around the patient\u2019s body \u2013 as tightly as is comfortable \u2013 because the sensors in them will measure her breathing overnight. Next step: plaster in her hair. The nurse takes a green and an orange cup electrode and presses them on. They measure the student\u2019s brain activity while she sleeps. Drebing runs a cable around Sommer\u2019s head to just below her nose: a small device there measures whether she breathes through her mouth or her nose. A microphone next to her larynx, electrodes on her legs, and done. Not much of her face is visible any more: her nose peeks out between the cables and her glasses.<\/p>\n\n\n\n

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Microsleep: too tired to drive<\/h2>\n\n \n <\/div>\n\n \n\n\n\n\n

\u2018At the moment I\u2019m in a solid, middling-to-bad phase<\/strong>. When I got the appointment here last year, I thought: \u201cI hope I don\u2019t die before then,\u201d\u2019 says the student. For almost three years she has been unable to control when she falls asleep during the day. She has sleep attacks almost every day: she nods off whenever her body decides to, helplessly at the mercy of her own sleep. The attacks usually last between five and 20 minutes, and on bad days they happen several times. \u2018The thing is, there\u2019s absolutely nothing I can do to stop myself falling asleep,\u2019 she says. Sommer has tried a lot: caffeine, walking around, keeping busy. But all these strategies only delay falling asleep. That\u2019s when it can get really dangerous. \u2018Sometimes I had to stop while driving because otherwise I\u2019d have ended up in a ditch from tiredness. Now and then I had microsleeps too,\u2019 says Sommer. That\u2019s why she now prefers to keep her foot off the accelerator. Driving without medication could even have legal consequences. If the student were diagnosed with narcolepsy, that could change \u2013 because the symptoms of the neurological disorder can be treated with tablets. \u2018I hope I get the diagnosis. Then at least I\u2019d have an answer and, with the medication, could take part in life a bit better again,\u2019 says Sommer.<\/p>\n\n\n \n\n

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The patient\u2019s room is<\/strong> recorded by a live camera throughout the polysomnography. The images provide information of their own that can later be revealing alongside the measurements.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n <\/div> \n\n\n \n\n \n \n\n

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The measurement begins in the sleep lab:<\/strong> Marie Drebing checks the electrodes. Brainwaves, breathing, and eye and leg movements are among the things measured. The monitoring image shows the patient looking at herself on her phone for the first time.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n <\/div> \n\n\n \n\n \n<\/div>\n\n\n

Nurse Drebing presses a black button<\/strong> on the box on Sommer\u2019s stomach to which all the cables are connected. Recording begins. Sommer is now under full observation; the camera above the bed also records every single movement she makes. \u2018The measurement will get going within ten minutes,\u2019 says the nurse. The camera transmits its footage to the computer in the next room. The measurement is just starting there: coloured lines trace across the screen from left to right. Heart rate, breathing and Sommer\u2019s brainwaves. In the middle of the screen: the patient in black and white, looking at herself in her smartphone\u2019s front camera. Drebing clicks through the system to check that the electrodes are picking up all the signals. \u2018Everything\u2019s green and every line is visible. That means it\u2019s all recording. I\u2019m happy,\u2019 she says. Now it\u2019s airplane mode on, and time for bed.<\/p>\n\n\n

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\n \"Sommer\n \n <\/div>\n\n

As the recorded data shows,<\/strong> Livia fell asleep at 10.22 p.m. on the first evening.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n\n\n\n

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When I fall asleep,<\/strong> I\u2019m still aware of what\u2019s going on around me, but at the same time I\u2019m somehow already dreaming. The two mix in a very strange way.<\/p>\n <\/blockquote>\r\n\r\n

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Nurse Marie Drebing<\/strong> checks whether the electrodes are picking up signals. The first impression is confirmed: all the electrodes are transmitting data.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n\n\n\n

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Hypnagogic hallucinations: Sommer sees things that don\u2019t exist<\/h2>\n\n \n <\/div>\n\n \n\n\n\n\n

\u2018When I fall asleep, I\u2019m still aware of what\u2019s going on around me, <\/strong>but at the same time I\u2019m somehow already dreaming. The two mix in a very strange way. I perceive things that aren\u2019t actually happening, or I see things for real that are actually happening in my dream,\u2019 says Sommer. These are called hypnagogic hallucinations \u2013 typical of narcolepsy. Also typical: the sleep attacks. However, Sommer sleeps well through the night, which is usually not the case for people with narcolepsy. \u2018I didn\u2019t know that sleeping through the night could be a problem,\u2019 she says. Another missing symptom is cataplexy \u2013 a sudden loss of muscle tone in which people collapse when they feel strong emotions.<\/p>\n\n\n

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\n \"Sommer\n \n <\/div>\n\n

On the second day<\/strong> another test is carried out: Livia has to try to sleep five times, for 30 minutes each, with 90-minute breaks in between. In the picture she is taking a break in the clinic garden.<\/p>\n<\/figcaption>\n \n <\/figure>\n\n\n\n\n

The next morning, 11.22 a.m.<\/strong> Sommer has completed the polysomnography. Today it\u2019s a multiple sleep latency test: five times, she has to lie down to sleep for 30 minutes each. She has already done the first round, and now Dr Kirsten Wolfgramm, senior consultant in neurology, is analysing the results from the night. \u2018The recordings were good, but you don\u2019t have an early REM phase, as would be the case with narcolepsy,\u2019 the doctor says. Rapid eye movements behind closed lids: that\u2019s what characterises a REM phase. On screen, Dr Wolfgramm goes through the night\u2019s recording step by step \u2013 the REM phases only come later. Many of the symptoms fit narcolepsy \u2013 but many don\u2019t. \u2018Could you stay another night after today\u2019s tests?\u2019 Dr Wolfgramm asks. Sommer can.

*Name changed<\/sup><\/p>\n\n\n\n

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\n TO THE MAGAZINE HOMEPAGE<\/a>\n <\/div>\n<\/div>\n","protected":false},"author":98,"featured_media":50053,"template":"","tags":[373,395,331],"magazinkategorie":[396],"class_list":["post-75391","magazin","type-magazin","status-publish","has-post-thumbnail","hentry","tag-gesundheit-psyche-en","tag-nightlife-subculture","tag-photo-series-en","magazinkategorie-after-dark"],"acf":[],"yoast_head":"\nNarcolepsy: when sleep becomes an illness<\/title>\n<meta name=\"description\" content=\"Sudden attacks, hallucinations, leaden tiredness: student Livia Sommer looks for answers in a sleep lab.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/visualjournalism.de\/en\/magazine\/after-dark\/narcolepsy\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Narcolepsy: when sleep becomes an illness\" \/>\n<meta property=\"og:description\" content=\"Sudden attacks, hallucinations, leaden tiredness: student Livia Sommer looks for answers in a sleep lab.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/visualjournalism.de\/en\/magazine\/after-dark\/narcolepsy\/\" \/>\n<meta property=\"og:site_name\" content=\"Visual Journalism and Documentary Photography\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/people\/wwwfotostudentende\/100065173703897\/\" \/>\n<meta property=\"article:modified_time\" content=\"2026-10-09T09:54:03+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/visualjournalism.de\/wp-content\/uploads\/copyright_Anton-Vester_-6.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2000\" \/>\n\t<meta property=\"og:image:height\" content=\"1429\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@HsHannover\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/\",\"url\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/\",\"name\":\"Narcolepsy: when sleep becomes an illness\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/visualjournalism.de\\\/wp-content\\\/uploads\\\/copyright_Anton-Vester_-6.jpg\",\"datePublished\":\"2025-05-10T11:09:44+00:00\",\"dateModified\":\"2026-10-09T09:54:03+00:00\",\"description\":\"Sudden attacks, hallucinations, leaden tiredness: student Livia Sommer looks for answers in a sleep lab.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/visualjournalism.de\\\/en\\\/magazine\\\/after-dark\\\/narcolepsy\\\/#primaryimage\",\"url\":\"https:\\\/\\\/visualjournalism.de\\\/wp-content\\\/uploads\\\/copyright_Anton-Vester_-6.jpg\",\"contentUrl\":\"https:\\\/\\\/visualjournalism.de\\\/wp-content\\\/uploads\\\/copyright_Anton-Vester_-6.jpg\",\"width\":2000,\"height\":1429,\"caption\":\"Sommer sits in her hospital room. 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