What books have resonated with your headache disease experiences?
We'd love to host a virtual book club about migraine, cluster headache, and other headache diseases. Answer the following questions to get the conversation started:
- Have you read something that made you think about your personal experiences?
- Was the book written about a specific headache disease or did something in the novel speak to your experiences in general?
- What rating would you give the book?
- What books would you recommend others to read?
I'm currently reading Psychedelic Outlaws by Joanna Kempner. This is her 2nd book - her first was Not Today Migraine. I love the digging and research she did in writing this book- it has been 10 years in the making. This book is many things all rolled into one.
First- she addresses the broken healthcare system that patients struggle to navigate. Headache medicine is highly stigmatized and funding/research is abysmal.
Second - she addresses a movement of patients who figured out doctors had little to offer and they needed to connect and share information. In doing so, they stumbled upon treatments that help with minimal side effects - however, they are labeled Schedule 1.
Third - she addresses the psychedelic history in a way that helps someone like me follow along. She takes the reader on this journey so that you can step into the shoes of the various people involved with each of the different perspectives.
While this does chronicle the history of Clusterbusters, and gives much voice to cluster headache, this book is so much more. It's about a movement - patients who are fed up with not being heard and finding treatments that work for them. It's a whole new way to look at medicine (and the book talks about how we got here!). I'm so inspired and grateful that these early pioneers did what they did because of them- I live a better life.
I do recommend this book, not only if you have cluster headache, but also if you have another headache disease (such as migraine) or even if you have another chronic condition, mental health diagnoses or are just interested in hearing more about why psychedelics are Schedule 1 and how that changed so many things.
I just finished the last page of Joanna Kempner's book Psychedelic Outlaws. A tear is still rolling down my cheek (not something that happens often at all). Words can't express the magnitude of this book, of this life, of this organization called Clusterbusters. I've been attending book club and the book was divided into 4 parts. I'm not going to lie, Part 3 had me wanting to bang my head against a brick wall. It was such a heavy weight to read each word with all the bickering and nonsense going on when there were patients suffering.
I took a deep breath, sat down today, finally finished the last few pages of part 3, and moved on to part 4. Dr. Schindler is an amazing soul and it was captured so well in this book why she has made such a difference in our community.
I will carry this book with me, and when people ask me what I do, I can show them this book- this is what I do - the work never ends, it just continues and shifts. There are still many people out there with cluster headache that are undiagnosed, misdiagnosed, unable to get an oxygen supplier to fill their script for oxygen, insurance refuses to pay for oxygen, Emgality, or other prescription medications and psychedelics are still schedule 1. If you believe they should be schedule 1- I encourage you to read this book, then decide. People suffering need access to whatever works - they need access now. Later may be too late.
WOW! It sounds like this is a powerful and insightful book that sheds light on the challenges faced by those with migraines and cluster headaches, particularly concerning access to effective treatments and medications. You've offered up a truly intriguing abridged description. It's as though the book leans toward required awareness, access, and advocacy, unequivocally contributing to a more compassionate and supportive community for all those affected by these conditions. I hope many in the community get the chance to pick it up and read it. Thank you for sharing.
