When I was first diagnosed with my multiple chronic conditions, I wasn't sure where to turn for useful, and reputable, information. Over time I have come to read a lot of different books and websites, and had many advised by medical professionals. These are my go-to books and websites on different chronic illnesses, all full of helpful information on tests, diagnoses, treatments and lifestyle changes that may help manage symptoms.
POTS – Together We Stand: Riding the Waves of Dysautonomia
POTS - Together we Stand is a really informative books that covers all things related to postural orthostatic tachycardia syndrome (POTS), as well as dysautonomia more broadly. Written as a collaborative effort of doctors, teachers, counsellors, parents and patients, it provides a comprehensive overview of the basics of the condition: the different types of POTS, diagnostic criteria, symptoms and associated conditions such as chronic fatigue syndrome and orthostatic hypotension.
Aside from the ‘medical’ aspects of POTS, this book has really helpful sections on how to cope with the emotional and practical difficulties that the condition may bring. The ‘helpful hints’ section has chapters on disability benefits, job accommodations and more, while the ‘nutrition’ section includes information on nutrition, as the name suggests, as well as POTS-friendly recipes – think lower carb and higher salt with lots of nutrient-dense whole foods.
The chapters on alternative therapies and exercise give advice on more natural treatments, while the ‘inspiration’ chapter is a thoughtful and inspiring set of personal narratives, poems and ways to raise awareness. This book is packed with information and practical advice, and a lot of its content involves lifestyle changes that my medical team didn’t speak to me about. A great read if you are newly diagnosed with POTS, or if you want some extra support or information as a person who has had the condition for longer.
US link: POTS - Together we Stand
UK link: POTS - Together we Stand
Never Bet against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
Never bet against Occam is written by Dr Lawrence Afrin, one of the world’s leading doctors on the condition mast cell activation syndrome (MCAS). This is a huge book, packed with detail, which you can dip in and out of as needed as the chapters are quite distinct in their focus.
The book comprises information of all the elements of MCAS: diagnosis, symptoms and treatment. It covers all the ways that MCAS may affect the body, and associated conditions with the condition, ranging from interstitial cystitis to musculoskeletal symptoms, amongst others. The chapters are interwoven with case-studies of patients seen by Dr Afrin, which highlight the complexities of the condition, and how it manifests in very different symptoms for different people. There is also an extensive glossary of medical terms, what they mean and how to pronounce them – super helpful!
US link: Never Bet against Occam
UK link: Never Bet against Occam
Mast Cells United
Mast cells united is also a huge book packed with information, and one that takes a holistic approach to understanding this condition and methods of potential treatments for those with MCAS. Written by a sufferer of MCAS, this book contains both a personal story of living with MCAS, but also a wealth of information on the symptoms, associated conditions and treatments of the condition.
Rather than simply focusing on conventional treatments, which does have its own chapter, Mast Cells United also has dedicated chapters to natural treatment options, dietary considerations and holistic healing, which covers exercise, psychological treatments, trigger elimination and much more. A really helpful book that is a 'must' for those newly diagnosed as well as persons more familiar with the condition.
US link: Mast Cells United
UK link: Mast Cells United
Mast Cell-Friendly and Low Histamine Cooking: Diet Guidance and Recipe Collection
From the highly-researched Swiss Interest Group, histamine intolerance food compatibility list, which provides the basis for the low histamine recipes on this blog, this book provides detailed information on mast cell disorders and also a recipe collection that uses low histamine foods. Particularly good for those that are new to this form of diet.
50 Things You Can do Today to Manage Migraines
Written by a migraine sufferer, 50 things you can do today to manage migraines provides a holistic approach to migraine treatment and symptom management. As the name suggests, it covers 50 distinct points, and this is set out over eight chapters. The first chapter provides an overview of what migraine ‘is’, as well as the different types, and possible triggers. Chapter two focuses on the relationship to food, while chapter three focuses upon supplements. The chapter ‘mind over migraine’, chapter four, looks at the role of stress, and provides particularly helpful tips for decreasing stress levels through changes to day to day thinking and activities.
Chapter five looks at migraines and hormones, and chapter six focuses upon other triggers such as sleep issues, posture and seasonal changes. Medication and complementary therapies are covered in the final two chapters. 50 things is a great initial read if you are newly diagnosed with migraine, as well as being a useful resource for persons who have suffered with the condition for longer. It is easy to dip in and out of when you want to read up on a particular issue, or get new ideas for management of your symptoms.
Heal your Headache: The 1-2-3 Program for Taking Control of your Pain
This book has a comprehensive approach to migraine treatments, but also has a three-step programme to help control pain - as the name suggests! Written by Dr Bucholz, Heal your Headache covers the basics of ‘what is migraine?’ as well as the different types of migraine and their symptoms. Beyond head pain, the book details that migraine can cause vestibular symptoms, auditory symptoms, motor symptoms, cognitive symptoms and more. Personal stories are given to highlight the very different way that migraine can affect us.
The majority of the book puts forward Dr Bucholz’s ‘1-2-3 programme’ of migraine treatment. Step one involves trying to avoid using the ‘quick fix’ of painkillers (acute treatments) too often, and the problem of rebound headaches. The second step focuses on trying to reduce triggers. As the book details, there are many potential migraine triggers, some avoidable, others not. It is all about trying to reduce those that you can, such as medication triggers, dietary triggers, stress and sporadic sleep, amongst others. Step three is called ‘raising your threshold’, which focuses upon raising the threshold at which you would ‘tip over’ into a migraine. This involves the use of preventative medications, and the book details the different types available (although not newer medications now available such as the anti-CGRP treatments).
US link: Heal your Headache
UK link: Heal your Headache
Migraine and headache
Postural orthostatic tachycardia syndrome
Interstitial Cystitis / Bladder Pain Syndrome
Mast cell activation syndrome (MCAS)
Swiss Interest Group Histamine Intolerance (SIGHI) (low histamine diet list)
- the SIGHI food list is available in a number of languages on their website.
Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this is simply my story and the resources that are helpful to me.