Migraine; Inside a World of Invisible Pain

by Maria Konnikova

New York Times best-seller (The Biggest Buff, The Confidence Game, Mastermind) and New Yorker writer Maria Konnikova delves into the mysterious ailment that she and 39 million others suffer from in the U.S. alone: Migraine, a disease that is still little understood, yet debilitating to its sufferers. Konnikova takes a clear-eyed look at migraine’s history, diving into current theories and more recent approaches—and offers a deeply personal account of what it’s like to experience migraine, usually with little warning and always to a level that is devastating to a degree.

Eighteen percent of women are thought to suffer from migraine, and Konnikova thinks that it’s not a coincidence that the ailment has not gotten the medical investigation that it deserves. It is unfortunately far too common to see medical data gaps where a predominantly female patient population is concerned.

Informative and entertaining, Migraine is an Audible Original for those who suffer from migraine and those with sufferers in their lives—which would amount to just about everyone.

Genres: Nonfiction, Audiobook, Science, Health, History, Memoir, Medical

Audiobook

First published December 16, 2021

Reviews

[Sammy · Rating 5 out of 5]

Honestly, it would have been beyond great if my neurologist had given me even the tiniest fraction of the information found here when he diagnosed me. Instead of "You have migraine" before all but shoving me out the door. No explanations, no advice, no guidance on where to go for any questions, just a piece of paper with a medication printed on it that would prove not to work (yet to find one that does, frankly) and a "goodbye", leaving me bewildered in the hallway wondering what I had done (possibly in a former life) to the man to inspire such an uncaring, unhelpful attitude.

I wish I could say this was an unusual experience, but I've found this to be the treatment to expect as standard when dealing with medical professionals in the town where I live. So being left with only a name of what ails you (which half the time is so unfamiliar you've forgotten it already by the time you've dug out something to make a note on), you find yourself left to your own devices in figuring out first of all what the term means, and then what you can do to at least minimise the disruptive effect it has on your life.
In this situation you'd think the internet is your friend, but it turns out that is far from true. For even the simplest of ailments there are countless different, and usually conflicting, ways of dealing with it, and no two people seem to be able to agree on anything. This counts for medical websites just as much as "user generated" ones. And migraine is far from simple...

So should you find yourself in that situation when it comes to migraine, this is the book you want. It provides a good overview if nothing else (seriously, I've been dealing with this for the better part of a decade now, and had no idea that so many of the "other" things I was suffering from were actually common effects of migraine!), and it's especially good at making you feel like you are not alone, and someone out there understands what you're going through. Once you have a grasp of the scope of this thing, you can look into whichever parts are most relevant to you personally at leisure, but first, you need to know what to look for!

So very glad I listened to the audiobook today. It's set my mind at rest about several things, and has given me an idea of where to go from here.

In the meantime, I'm joining the masses that are waiting for the "it gets better with age" thing to kick in...

[Jan · Rating 4 out of 5]

Start with awareness, and use this book. No, you will not find answers, remedies, or cure-all solutions; in fact, Konnikova actively explains that these are not solutions for all people because migraine (yes, that is singular) is far more complex than many have understood. Instead, many can read this and learn more about historical contexts, social implications and biases, and genuine pain people suffer because of migraine. Again, this is an excellent introduction because it addresses a need for awareness and learning. Glancing through the comments, I discovered other readers who wished family members would read this and survivors who could relate. I found many gems throughout this book, my favorite being the repeated emphatic --> Listen to those with migraine. Their stories are real. Their experiences need to be validated.

[Brittany · Rating 5 out of 5]

I feel guilty about even thinking about attending to myself. You power through, not because you aren't in pain, but because it's the only option. Because you'll be met with a complete lack of understanding if you don't.

I wish I could make so many people listen to this. It's only 2 hours long or so, but it paints such a vivid picture about what living with migraine is like. You very rarely are given the option to stop. Life goes on, with or without you, and so you push through most of the time, despite feeling like someone has your head in a vice, taking a drill or an ice pick or something equally traumatic to it. For hours. Days, usually. My longest recorded migraine is 53 hours, and that's still significantly shorter than so many people have to deal with.

53 hours, and I should count myself lucky.

Most of this review is just going to be quotes, I'm pretty sure, because this was so vastly, incredibly relatable. I was cooking the entire time I was listening to this and just nodding away, because it felt like I could've been telling my own story. Especially this bit about not being able to put the pain into words, despite that sort of being your thing:

I'm a writer. Words are what I do, and words often fail me when talking about what migraine--to me--feels like, what it is. "English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache," wrote Virginia Woolf in 1926 in her migraine-inspired essay 'On Being Ill'. "The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her. But let a sufferer try to describe a pain in his head to a doctor, and language at once runs dry. There is nothing ready-made for him. He is forced to coin words himself." At least when words fail me, I'm in good company.

The world doesn't want to believe you when you try to describe it anyway, so there's hardly a point half the time. You're either exaggerating a normal headache or making it up to try to get out of something. The number of times I've tried to explain to people what a migraine attack feels like, only to get something like "Oh yeah, I get bad headaches sometimes too!" back is disheartening.

Nevermind the full-body shivers, the full-body pain and sensitivity, the fatigue, the nausea, the photo-, osmo-, and phonophobia, the vertigo, the lightheadedness or confusion, the auras - and so many more symptoms, because attacks are as diverse as the people who get them - all lasting for days. But yeah, sure, it's 'just a bad headache.' There's so little understanding of why migraine attacks happen, what causes them, how to stop them - because there's so little funding given to it, in no small part because a majority of sufferers are female and therefore often not taken seriously, accused of being hysterical. And because, as Konnikova notes that people will genuinely tell you, "It won't kill you."

No, it just feels like it might sometimes. Which we're just supposed to live with, apparently.

(... Reading this back, this review sounds very bitter. Which I suppose I am. Sorry about that.)

[E · Rating 3 out of 5]

3 stars. Listened to this as an audiobook on Audible. Interesting but it was a very basic overview and mostly anecdotal. I know that migraines still are misunderstood but I think this book would have benefitted from more research or maybe speaking to more experts. I sometimes get a sharp shooting pain in my right temple and right eye that ends up being an awful headache and I’ve often wondered if it’s related to migraines, so I did find this somewhat interesting. The writing was decent, the narration was good but it was lacking something. This felt more like a short NYT article than a short book.

[Emily · Rating 4 out of 5]

I’ve been dealing with migraine for a long freaking time at this point in my life. I’m not a chronic sufferer experiencing around 9 migraine days a month. Isn’t that fun? You can spend 25-30% of your month at suboptimal functioning, and still count yourself in the lucky category of migraineurs. Anyway, this piece wasn’t such a revelation for me because I spend a lot of time thinking and reading about migraine, but it was a delight to have it all so concisely together. One thing that did startle me what the possibility that infant colic also has a basis in migraine. My kid screamed on and off for her first three months and now as a teenager has standard migraine. I do also like that Konnikova covers abdominal migraine which I call nausea-led migraine, during which the need to vomit hits long before the head pain starts. It was a game changer for me when I realized my somewhat frequent “food poisoning” was just another variation on a theme. I really recommend this to everyone, mostly so I never have to hear the words “bad headache” again.

[Helena · Rating 1 out of 5]

There are some good points about people's opinions of migraine sufferers, the fact that it's yet another way in which (especially women's) health issues are brushed to the side and not studied enough, etc. Sadly the author relies on swearing, sarcasm without humour, and rants about every day experiences like walking into a department store to emphasise her point.

As someone with multiple "invisible" illnesses, I understand being angry and frustrated with your healthcare experiences and other people's perceptions of you and your conditions, but if I'd known the rant vs science and history % before I read it, I wouldn't have bothered adding it to my library.

[Buffy · Rating 1 out of 5]

Get off the elevator!

This book is one part light science, and five parts rant. If you need validation for your migraine pain, this is for you. “The department store isn’t designed around me! I had to pretend I wasn’t sick at a dinner! I had to share an elevator with someone wearing perfume for like 30 floors and it stopped at every level!!!”

*eye roll* Then get off the damn elevator.

[Nell · Rating 4 out of 5]

For sufferer's of migraine, you might actually find something interesting here.
A word of warning: it may trigger a migraine. It did threaten to, for me, towards the end. Apparently this is actually not as silly as it sounds, and is touched upon in the last chapter.

[Chris Boutté · Rating 5 out of 5]

If you’ve ever suffered from migraines or know someone who does, you need this book. Maria is one of my favorite psychology writers, so I was a little skeptical going into this book because it’s different from her others. Maria surprised the hell out of me with how great this book is, and now I see she can write about just about anything. Personally, I used to suffer from migraines regularly that were so bad that I’d throw up, and now they’re far less frequent. I never understood what was happening or why, and in this short book, Maria breaks it all down. With a blend of her personal experience and a ton of research, Maria explains the history of trying to understand migraines, the treatments, and why it’s so hard to pin down what’s causing them. I learned so much from this book even though it’s such a short read. It’s amazing how much she was able to pack in. I think this will help all migraine sufferers and also help others understand if they have a loved one who suffers from migraines.

[Titilayo · Rating 3 out of 5]

It was brief overview and reflection about living with migraines.

[Hisgirl85 · Rating 3 out of 5]

3 stars, maybe 3.5 depending on what you're going to get out of the short book. Migraine has chapters that start with a personal story of the author followed by the history of the ailment as it developed. Treatment, knowledge, and stigma throughout the years are discussed.

A qualm I had was that there was no background on non-western medicine besides a failed attempt at getting help through acupuncture and referencing ancient civ (Egypt, Mesopotamia). Which is interesting to me as one negative experience was enough to disparage it, while years following Western medical advice that didn't help (two specific prescriptions that not only didn't work but made it worse) didn't have the same reaction. She had multiple negative results with the same doctor and western medicine, and yet she kept going back expecting a different result. She talks about how there was a stigma that is incorrect and followed b/c of Frued for years, including ads from it, but doesn't see that the same may be said with the view on Eastern medicine. Things get picked-up and passed around and people believe them 100%, even after the truth comes out--carrots for eyes being a military test, msg being bad as propaganda, migraine being a woman's ailment of the mind.

Anyway, I found it interesting if you want to know more about Migraine through the lens of western medicine and the author. I did feel bad for the author's experience with Sherlock Holmes group (having read her book on him), and hope they invite her back. Maybe she can take Gaiman's spot.

[Shannon · Rating 4 out of 5]

Maria, thank you for writing this. It has inspired me to do a little more research and ask my doctor some more questions. My treatment plan is far from perfect, but it could probably be better.

As a migraine sufferer I found this very interesting and validating. I related to many of the insights the author had, especially the "its just a headache" and the insights regarding finding the right treatment. It is crazy to think in this day and age, the medical field still approaches migraine treatment as trial and error because the human brain is still a mystery.

This short audiobook had me nodding in agreement so many times as I had experienced so many of the same or similar situations as the author in finding my own functional solution. If you know someone who suffers from migraine, be kind, it isn't "just a headache". Migraines suck, and unless you've experienced one first hand, you really can't understand the pain and misery those of us who get them experience. As the author points out, each person has different symptoms and treatment. The only thing they share in common is that all migraines are terrible

[Erin Weigel · Rating 4 out of 5]

I’ve suffered from migraine since my late teens, and this book was good validation. It’s also a useful perspective to understand why society views migraine as it does and why doctors still don’t know much about it.

It was a good reminder to be kind and gentle with myself as I experience and manage them because I know I often try to push through them (ha! I never learn) to my own physical detriment. Maybe you do that, too?

Anyways, migraine sucks. But it was nice to hear the author’s personal journey with the illness and to learn from her research.

It’s a fast read so I’d recommend it if you want a little bit of personal memoir, a bit of history, some science, and a bit of compassion and hope mixed together.

[Juliana · Rating 4 out of 5]

It's an excellent introduction to the topic and raises some interesting points to discuss. It isn't trying to solve anything but bringing awareness to the vast amount of things we still don't know about the topic and how bias impacts the reach and treatment.
It made me wonder: are women more likely to have migraine, or are they more likely to be diagnosed with migraine instead?
A short and entertaining audiobook. I'd recommend trying it.

[Brenda · Rating 3 out of 5]

The information about migraine treatments was interesting, but the book focused too much on history of migraines for my taste. I wish more time had been spent on the science. It was discussed but not to the depth I was hoping for.

[Erika · Rating 3 out of 5]

3.5

[Kerran Olson · Rating 4 out of 5]

A good background on migraine research which is easily understood. This feels like a a great starting point for further reading

[Steven Sylvester · Rating 5 out of 5]

Helped me a ton in understanding what my wife goes through with migraines and the inadequacies of modern medicine

[Susan · Rating 4 out of 5]

As someone who suffers from migraine, I felt seen with this.

[Michelle N · Rating 4 out of 5]

Insightful. Quick Audible listen.

[Sandy · Rating 4 out of 5]

Nice to be heard.

[Stacie · Rating 3 out of 5]

An interesting introduction, not to migraines, exactly, more to the fact of the subject of migraines. The author is the narrator and she does a good enough job. Best thing about it is that it indicates that the study of migraines has advanced and is being taken more seriously (at least by some) than it was when I first started experiencing them and decided that I'd just have to deal with them and power through because there wasn't another option.

[Akeiisa · Rating 3 out of 5]

A short summary of the history of migraines and their medical treatment, including the lack of investment and research and gendered stigma. Konnikova notes that, like herself, most of the researchers she spoke to for this book either suffer from migraines or have someone close to them who does. While I found the book informative, I wanted more substance on the available science. Overall 3 out of 5

[JP Ferreira · Rating 2 out of 5]

What starts as an interesting examination of migraines becomes a diatribe against discrimination against women offering little clarity or hope for the topic at hand.

[Jacqueline · Rating 4 out of 5]

A great short read. It doesn't provide answers or solutions for migraine but it paints a clear picture on how migraine is viewed in society. Being a migraine sufferer, I feel seen and understood. Worth the read!

[Kyra Dawkins · Rating 5 out of 5]

This was such an accessible, fascinating, and thought-provoking read/listen. I had no idea that migraine was so complex. I realize now that my previous understanding of it had been very much tainted by dismissive depictions in popular culture. I definitely recommend this book for people who want a comprehensive albeit brief introduction to migraine. This book may just spark another medical history reading obsession.

[Anni · Rating 4 out of 5]

4.5 stars

So much great history about migraine and many historical figures who suffered, along with the author's own journey from childhood abdominal migraine ("food poisoning") to being diagnosed as an adult, and finally receiving a prescription - the wrong one, as so many of us start out with, but at least getting some relief. There are some breakthroughs happening in the study and treatment of migraine these days, but even though so many of us suffer, not many funds are directed to finding new and good (ie. not terrible side-effects!!) treatments that actually work, or to figure out how to prevent or end, migraine. As a sufferer of Migraine for most of my life, this was a great listen and I am also hoping that not just the CGRP treatments get expanded to my type of migraine (since that treatment would not help me), but that insurance companies will also start to cover my migraine treatments. The out-of-pocket costs are astronomical!

Yes - this is basically an invisible disease. Maria mentions her husband can see her getting a migraine, and a coworker of mine says she knows me well enough after all these years (also a sufferer) that she can see in my eyes when I have one, and we need to be able to have researchers find something for us that works more than a Triptan that lasts for 4 hours and can't be taken again for 24 hours, and Tylenol that doesn't work and kills your liver, or Advil that kills your kidneys (as it has done to me)!! It can be completely debilitating and make you bedridden for many days per month because you are in so much pain you can't move, think, speak, see, your stomach acts up (and yes, frequently the pain is so bad your body can't handle it and you get sick), and you forget everything, not just words from the aphasia. Migraine-brain is the absolute worst.

This book is great and with her influence, perhaps she can reach some of the powers-that-be to get some more funds diverted to Migraine research. I know there has been a lot of advocacy from some great doctors up here in Canada, but the big-guns are south of the border!

[Marwan Elnakeeb · Rating 5 out of 5]

I never knew...

I recently had an opportunity to listen to a someone describing a devastating migraine episode and how it knocked them out completely for several days. They described the nausea, vomiting, severe dizziness, loss of balance, and of course, the head splitting headache that takes destroys their sanity and takes them out of commission for a few days. That person also was incredulous about the physician's choice of prescribing Migraine medication at a low dose for starters. That person had expected a "serious" medical condition diagnosis, extensive testing, MRIs, Bloodwork, CAT-scans, and a real medical prescription to treat the ailment or surgery to remove a tumor. I couldn't form an opinion about the story because I never knew that migraine was such an enigmatic condition or that it is stigmatized. I am honestly baffled by knowing that the medical community hasn't mobilized more resources to research the condition and formulate a treatment for it or that pharmaceutical companies were just slacking behind to create better medications. Maria Konnikova shed a light on something I never knew was a real thing before and she explains it in a way that makes me utterly grateful I haven't had the misfortune of suffering from migraine. This book left me sympathetic to all who have to deal with such a hardship. Great work.

[Caroline Randolph · Rating 3 out of 5]

2.5 stars. I feel like this audiobook might be useful for people that don’t suffer from migraines, so they can attempt to understand the severity and pain that comes with them. As someone who has suffered from migraines since I was a teenager, I didn’t receive any useful information from this book, aside from the occasional line of validation. It wasn’t super interesting to listen to nor was it informative to me.

[James R. · Rating 3 out of 5]

As a lifelone sufferer of migraines, I found this short book to be both interesting and a source of comfort. It's nice to hear from someone else who has similar experiences to me and articulates the pain and frustration that migraines bring. My only criticism would be that I would have liked to have read more from her on this subject.