Sleep was taking over Anna’s life. Despite multiple alarm clocks and powerful stimulants, the young Atlanta lawyer could sleep for thirty or even fifty hours at a stretch. She stopped working and began losing weight because she couldn’t stay awake long enough to eat. Anna’s doctors didn't know how to help her until they tried an oddball drug, connected with a hunch that something produced by her body was putting her to sleep.
The Woman Who Couldn’t Wake Up tells Anna’s story—and the broader story of her diagnosis, idiopathic hypersomnia (IH), a shadowy sibling of narcolepsy that has emerged as a focus of sleep research and patient advocacy. Quinn Eastman explores the science around sleepiness, recounting how researchers have been searching for more than a century for the substances that tip the brain into slumber. He argues that investigation of IH could unlock new understandings of how sleep is regulated and controlled. Eastman foregrounds the experiences of people with IH, relating how publicity around Anna’s successful treatment helped others form a community. He shows how a group of patients who felt neglected or dismissed united to steer research toward their little-known disorder.
Sharing emerging science and powerful stories, this book testifies to the significance of underrecognized diseases and sheds new light on how our brains function, day and night. It is essential reading for anyone interested in sleep and sleep disorders, including those affected by or seeking to treat them.
This book is personal for me: I was diagnosed with idiopathic hypersomnia (IH) in early 2024, about 2 1/3 years after first seeing a doctor about feeling sleepy all the time. So, I'm truly delighted that there's a whole book about this condition! I learned a TON about topics I hadn't even thought to research about.
I was especially interested in the scientific research that has been done to try to figure out the causes of IH - and the mechanisms of sleepiness in general. It surprised me that we really don't understand sleepiness at the most basic level. Is it a molecule? An area in the brain? A pathway? What's "normal," anyways? Sleep is surprisingly hard to study, and it was cool to see the creative ways that scientists have tried to tease apart the mystery. For example, think about all the logistical problems solved in the process of doing MRIs on people while they're waking up.
I was also really interested to learn how sleep pathology has evolved over time, especially the complicated relationship that IH has with narcolepsy types 1 and 2. We understand narcolepsy type 1 so much better than we did three decades ago - turns out it might be an auto-immune disease! But, on the other hand, there remain concerns with the diagnostic criteria for narcolepsy type 2 and IH and even the definitions of the different disorders. I hope the next 10 years will see a lot of exciting change in this field, especially as acute and long COVID continue to reshape the landscape.
Patient communities have also been extremely important, and I enjoyed learning about the individuals and networks who have contributed to the current growth in awareness and research
On the treatment side of things, the book offered an interesting window into how American drug development, insurance systems, and medical-social tradeoffs. For example, I didn't realize how impactful the US's orphan drug program has been in incentivizing drug development for rare diseases. On the other hand, how do you offer relief for an imprecisely-defined, underdiagnosed sleepiness disease without opening a wide door for recreational abuse? Unfortunately, those concerns have often excluded people from life-changing treatments and even discouraged research in the first place.
All in all, this book is interesting because it really doesn't offer many answers. This is a scientific story in progress, summarizing where we've been so far and current directions. I found it easy to read, although my biology background definitely helped with the denser chapters about mechanisms. It was a great way for me to catch up on the state of the field. Now I want to figure out how to read ongoing primary research from the scientists featured!
My major complaint is that the organization of the book makes no sense to me. Neither fully chronological nor thematic, It made me want to cut it up with scissors and re-arrange it into a more logical order. Other than that, the writing was good. I would recommend it to anyone with idiopathic hypersomnia, a related sleep disorder, or other challenges with feeling chronically sleepy; to our loved ones who want to understand us better; and to anyone who is curious about the medical and scientific mysteries of sleep.
The Woman Who Couldn't Wake Up by Quinn Eastman is a fascinating and sobering look at sleep disorders, especially that of idiopathic hypersomnia, and debilitating effects. As a sleeping disorder sufferer I can relate to Anna whose case is discussed in detail. I did not realize people can sleep up to 50 hours at a time; I struggle to sleep at all. Dangers involved are many and it was discovered that her case was akin to constantly being sedated for a colonoscopy. Going to bed not knowing you may sleep two days, missing meetings and meals would be horrifying. After testing it was discovered Anna had a benzodiazepine-like substance in her body. Another patient is Lloyd who risked his health for an experiment of flumazenil implants. Interesting stuff. Imagine sleeping away much of your life!
The sleep studies and other tests are intriguing, having been through many myself. The photographs add a personal touch. I really appreciate learning more about GABA receptors and like that there are Snooze Cruises and success stories. The author writes about the "spoon theory" which is familiar to those with chronic illnesses and/or sleep disorders.
Those interested in how the body functions with(out) sleep and medical studies ought to read this book. It is science heavy so would especially appeal to those affected by sleeping disorders.
My sincere thank you to Columbia University Press and NetGalley for providing me with a digital copy of this compelling and informative book.
This was very very very long for me. I think that if you have no knowledge of sleep disorders than this may be more engaging than for me who knew a lot of the information already. However, I think that same group of readers may have difficulty fully understanding the material.
Not my favorite book in terms of science comm. but interesting nonetheless
As a caveat I read this in hopes that I could learn more about mechanism or sleep that I could use to treat the opposite problem. The book is not concise which means I'm mostly flip through it as it mostly wasn't for me but it did seem to match similar books on other health topics in terms of quality and entertainment value