The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients

This is one of the most valuable tools I have to use with doctors, family, and friends while battling Dysautonomia! It is very informative and uses terms that make it easy to understand!

For two years I have been dizzy, lightheaded, headaches and more. I have been in hospital and seen all kinds of doctors. NO ONE gave me any answers until just recently. They suggested I get this book. I have never heard of dysautonomia until just a couple weeks ago from my doctor. It's a relief to finally have a diagnosis and not be treated like I was a hysterical old woman. This book has told me much more about the disease and given me some hope. I relate to almost the entire book and love that there is a letter inside that can help explain to friends and family what you are going thru. I can't see the autonomic doctor for 6 months. This book has given me some answers while I wait to see this neurologist. It's a bit expensive the book but it's well worth it. I may give it to my doctor once I read the Physicians portion too. Learn all you can if you have this disease and this book is a great start.

I struggle with very severe dysautonomia for many years but not dxd until 2024..has wreaked absolute havoc on my body and life rendering me bedridden (among other autoimmune diseases)..just got this book & couldn't put it down! SO informative and helpful beyond measure! Love the patient/physician pages. Learning so much about the different types, medications (told there aren't any!), tests (told only one , tilt table, & our state doesn't do!), what physiologically happens with each type including neurotransmitters, ie catelcholamines. I've asked MDs for years to check mine (1 Dr did 10 yrs ago 3x, all drastically abn!) & none would, one admitting wouldn't even know what to do about abn results. Now I know am 100% right & will get tested at least by pcp to start! If you or loved one are struggling with this complex, debilitating disease, run to get this incredibly informative, comprehensive book, a game-changer!

A quick read and good general information for those newly diagnosed or unfamiliar with dysautonomia. If you’ve been living with dysautonomia for awhile, this book is probably not going to tell you anything you didn’t already know, but the project itself (dysautonomia project website, events, etc) is a great resource.

I am simply WOWED having read this book!!! I have been trying for literally YEARS to find out what's wrong with me. I have been misdiagnosed and dismissed by the medical field for far too long. I am still waiting to find the right doctor to diagnose me. I also suspect that I have a mast cell disorder amongst other things. Thinking that in time the complex combinations of some of these things will be decided to be a syndrome all of their own as common as they are seeming to be. This book brought me SO MUCH VALIDATION!!!! There are SO MANY suggestions in here as to what to do that I have already discovered on my own to do. YES!!! I am heading in the right direction after all!!!! If you are like me and have been pushing in hard for many years or maybe not so many years...for a diagnosis and just want more information on Dysautonomia conditions then this is the book for you!!! I am SO GLAD I BOUGHT THIS ONE!!!! I finally feel I'm getting somewhere whether is is yet acknowleged or seen by any medical professional. I can move forward and while I continue on my trek for diagnosis I can at least also continue, on my own, to work towards a treatment. One of the writers of this book encourages being an advocate for yourself. Encourages internet research so as to be the best team player along with your physician team. Encourages finding those groups on facebook and other places on the internet for peer patient support which I am finding is VITAL!!!! Times are changing. (hopefully lol) No more can docs just take the first 2 to 3 symptoms and work on them one at a time but the whole entirety of what you are dealing with needs to be looked at and evaluated. I have spent far too many years being told my issues are those of depression or high blood pressure and cholesteral or being given a prescription for something to try and then to come back 2 weeks later. I DON"T HAVE THE TIME to take out of my life anymore for this. It is far too time consuming and let's face it...is not productive in reaching a diagnosis and treatment. I am excited. Things are changing. I am hoping to press forward and be a part of the generation that HELPS the medical field learn how to help patients and help them be able to THRIVE in their health conditions instead of just SURVIVING. This book is clearly in line with this. It would be a great idea to purchase this for the docs on your team. Good health to you readers!!!

Can’t write enough good reasons here to buy it, if you have a loved one with Dysautonomia or you suspect they/you have it, this book is for you. It’s pretty much a necessity for both patient and family/friends, gives great understanding of what Dysautonomia is, what to expect, it’s invaluable for those who will be patients support system on a daily basis and gives you the words on how best to explain this traumatizing condition to your friends family etc This book has helped dispel some of my daughters, and our, fears and anxiety’s. Knowledge is priceless when dealing with something so complex, this book is an answer to prayers. Dr Ian Butler of Houston, our daughters new Neurosurgeon insisted we buy this book, God bless him we will be forever grateful! We will be buying a copy to give to our PC doctor as the book recommends - the amount of doctors specialists neurologists tests MRI’s treatments etc my daughters gone through in 18months, to finally have confirmed diagnosis and answers - there’s no words, we’ve a long way to go still but this book is the best tool you’ll ever need to help spread awareness of Dysautonomia and arm yourself with knowledge & understanding to help loved ones during their battle of living with Dysautonomia. Can’t recommend this book enough, thankful to all those who made it happen!

Wonderful, thorough book. Written very well and easy to read. The 'patient focused' pages have very easy to understand descriptions and the 'physician focused' pages are handy when you want a deeper dive. This type of book should be available for all medical conditions/illnesses/diseases. Brilliant!

A great tool for patients and providers alike told from the perspective of not only experts in the field, but one who lives with dysautonomia. An important read.

A good book for someone newly diagnosed or awaiting diagnosis. Easy to read with ideas to help maintain life and thoughts to prompt medical care.

Fabulous read if you have interest in the subject. Was written with left page for everyone and right pages for practitioners. Written by practitioners themselves and loads of interesting medical science facts.

Highly recommend this book if you or a loved one suffer from this disorder

Very nice information

Livro importante para o paciente e para a família