I am always looking for good resources for patients. I am particularly interested in books/articles which would be helpful for my patients who are ‘aging out’ of pediatric care. My young adults are getting ready to move on and would benefit from some adult-focused headache reference material. Some of my kids do need follow up and care from an adult headache provider. We refer them to other clinics, depending on their geographic location and to our best knowledge of the local providers. But many kids really no longer need the management or help of a headache provider. They have learned their good habits, have an appropriate medications (which can be managed by their primary care), and are doing well. We have guided them through their adolescence and early adulthood, they are stable and ready to move on.
But it’s nice to give them a ‘parting gift’ of a reference to reinforce what they have learned and is adult-focused. If there is significant (or frequently mentioned) migraine in the family, a reference can be helpful. There are several books I have found to be helpful. Typically I would make a copy of the book’s cover so it is easy for them to find.
The first good book I found is “The Migraine Brain” written by Carolyn Bernstein, MD and Elaine McArdle, originally published in 2008. Dr. Bernstein is a headache specialist in the Boston area. This book focuses on migraine in particular but is appropriate for anyone with headaches. The beginning sections of the book, Part 1, are concerned with diagnosing the headache, talks about the different types of headache, and then dives into the history and layman’s pathophysiology of migraine. It talks about the migraine stages, triggers, and especially good is the chapter on hormones and migraine. Dealing with hormones across the lifespan is excellent information for my young women, and something I am not knowledgeable enough to talk about.
Part 2 of this book is about managing the migraine as an adult- finding a provider, appropriate medications (rescue and preventive) and other interventions, how to navigate emergency situations, as well as complementary and alternative treatments. As an adult with migraine, it is important to have a good grasp of your own needs, medications that work for you. It is also important to have a provider who has a good understanding of migraine- whether that is your PCP or headache specialist. The book does a nice job reviewing what the adult migraineur needs in a provider to get the best care, how to get the right provider. The complementary and alternative suggestions include discussion about yoga, massage, acupuncture, therapy, and supplements. Because this book came out in 2008, Botox was only mentioned in passing as it had not yet approved at that time. Also not mentioned were occipital nerve and trigger point injections. Understandably, the brand-new medications targeting the CGRP receptors are not included.
Part 3 is all about self-care and wellness. It focuses on everything we focus on in my clinic- sleep, hydration, healthy diet, exercise and mental health and with good detail. The message it gives is all about how to live a fulfilling and functional life despite having migraine. It is affirming to read that the guidance you are giving the kids is consistent with that given to the adult with migraine. The challenges of adulthood- work, family, achieving balance- are discussed and have a different flavor that what we discuss in the pediatric world. This information is excellent for my patients moving into adulthood, but also for their parents/family members who struggle with migraine.
I thought the book was practical, thorough, informative and helpful, but could use an updated version to include Botox, injection procedures and the newer drugs and modalities. It was generally easy for the layperson to understand. The section on women-specific health needs was excellent. There were some good resources in the appendix. And included throughout the book were personal stories of individuals with migraine, which are so helpful in keeping the information real. It is sad to note that the Women’s Headache Center that Dr. Bernstein had created is closed, as it was a wonderful resource for the patients. She is still in practice in the Boston area, and continuing her compassionate approach to her patients.
“Understanding your Migraines, A guide for patients and families” by Morris Levin MD and Thomas N. Ward MD is a more recent book, published in 2017. The authors are both neurologists and at one time worked together to co-direct the Dartmouth Headache Center in New Hampshire between 1998 and 2004. While this book is predominantly about migraine, it does touch on the other headaches.
The first several chapters describe the primary and secondary headaches, and then focus in on migraine. The authors talk about how a diagnosis is made, the nature and cause of migraine. This is a nice overview for the layperson. The next few chapters talk about the impact of migraine on the patient’s lives, followed by migraine rescue medications and then non-pharmacological rescue strategies. They then move into a discussion of the armament of the usual migraine preventive medications. This is followed by a chapter on non-pharmacological approaches, including supplements and exercise.
There are short chapters about pediatric migraine and pregnancy concerns. The next chapter is about chronic migraine, and the information is a bit more multidisciplinary, and includes information about Botox for chronic migraine. There is mention of the importance of lifestyle and self-care but not in detail. They next discuss newer treatments including nerve blocks, nerve stimulation, infusions, and start the discussion about monoclonal antibodies, all as overview.
The next 3 chapters focus on headache that are not migraine, such as tension-type, cluster, TAC (trigeminal autonomic cephalalgia), post-concussion, and a short paragraph on new daily persistent headache. (I am biased towards NDPH and wish it got more attention as it is a terrible headache, nearly 25% of my practice). The final chapters, about communication with your medical team and resources, were quite valuable in encouraging patients and families to advocate for themselves and take an active role in their care.
The information in this book is easy to digest and the patient stories are great, really making the information relatable (the best part really). However, despite including some lifestyle interventions and suggestions, the authors did not delve very deeply into this area. Describing and advocating for the multidisciplinary approach to headache care was given short shrift in this book, and for some patients it is the most important part on their journey to wellness. Perhaps eliminating some of the information about headaches other than migraine would have allowed them to spend more space on lifestyle strategies.
The Verdict: Both of these books have a place in patient education for adults with migraine. I thought the more recent book, “Understanding your migraines” was easier and faster to read, but not nearly as comprehensive or full of useful detailed information as “The Migraine Brain”. Considering that “The Migraine Brain” was over 500 pages long, compared to not quite 200 pages for “Understanding your migraines”, I guess that is to be expected. I thought that the emphasis on lifestyle strategies presented in “The Migraine Brain” really brought home the importance of this aspect of care and need for vigilant self -care. I think a book combining the best parts of each would be great- good people stories, clear explanations, information on most current therapies, and a strong emphasis on healthy lifestyle. Now who’s going to write that book?