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

I have been sick for over 16 years and haven't been able to get any real solid answers as to why. I ordered this book after my primary doctor asked if anyone has ever said anything to me about autonomic nerve dysfunction. I have a medical background so I read both parts of this book (the patient side and the physician side) as tears were streaming down my face because I felt like I had won the Powerball! The more I read, the more I realized that I have been sick a lot longer than 16 years! I've been to Mayo Clinic and saw a lot of "top doctors" if you will, but nobody could tell me anything concrete. I've been told everything was in my head, I'm a hypochondriac, a drug seeker, because we can't find anything wrong, therefore you can't be in as much pain as you say you are so why do you need to be on pain meds?...you have Crohn's disease then nevermind you don't. You have celiac disease, followed up by nope we were wrong again, numerous wrong diagnosis after wrong diagnosis, to finally we know there's a problem but we don't know what it is, blah blah blah! I didn't get diagnosed with POTS until 2014 after going to Duke University Hospital. My rheumatologist sent me to an electrophysiologist after I passed out and ended up fracturing my orbit and nose really bad even though she knew I had a history of syncopal episodes. Fast forward to 2015 and moving back home to St. Louis. I found a new primary care doctor because my old one had retired. I tend to go into new appointments with a chip on my shoulder because of past experiences, but something in my gut told me to stick it out with this new PCM. He has been by my side for well over a year and a half trying to figure out what has been going on, and never once did he try to send me for a psych evaluation! About six months ago he started really doing his research on this topic because he was watching me deteriorate, and told me that I'm just not "wired" properly. He dissected my medical records from as far back as 2001 and happened to dive further into autonomic nerve disorders. I now have an appointment with a specialist in February to see if he can help. I'm starting to see light, if just a glimmer at the end of the tunnel! Thank you for writing this book! I feel like it is about my 16+ year struggle. I am at the more severe end of the spectrum and I am not able to work and had to get a service dog for numerous reasons. I really wish they went more in depth into the autonomic nerve system in medical and nursing school because more people need to know that such a thing does exist! The book is already in circulation with my friends and helping them understand that just because I don't look sick, doesn't mean I am not. Also, explaining to them how I can be fine one minute and not ok the next! I highly recommend this book to not only patients but physicians as well!

As a medical doctor and a POTS patient I was thrilled to read this book. It is medically accurate with chapters writtien and edited by some of the leading academic minds in the world who are at the forefront of research and treatment of Dysautonomias and POTS. It was recommended to me by my own POTS Doctor. I ordered and read it immediately. I have given out copies to my other specialists who have felt at a loss on how to best help. This information is not taught in medical school or most residencies, yet is imperative to know. This book has helped my doctors feel empowered to treat me and recognize other patients who are similarly affected. It helped educate my own family too.This book is divided in a unique way. On one side of the page is the text intended for the treating physician. The other side of the page is the same information written in laymen's terms. As a doctor, I found it easy and quick to read. Thank you for publishing this fantastic book!

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!!!

If you know nothing about dysautonomia and have POTS, it would be fabulous. The main writer for patients has POTS. One of the main medical writers, writes mostly about POTS. I read medical journals, so read the medical side and I learned very little new. The idea is great but not the detail I needed about non-POTS dysautonomia. It's a horrible disease for everyone, not just POTS patients. I finished it feeling less than.

Truly amazing book, an insight into Dysautonomia, informative and educational for both the patient, family and clinicians. I am newly diagnosed with PoTS and have learnt so much about myself, my strength and my timeline of symptoms that I had no idea co-existed with this condition. This book asks you questions directly and triggers thought, it also rules out myths and anxieties that come with having a long term chronic and 'invisible illness'. It's a must read!

Excellent book, on many levels, it helped with understanding links with gastroparesis and hypermobility amongst many other things. The chapter on connective tissue problems, POTs and mast cell disease sounded so rare, I didn't think it applied to us, but as the symptoms in my child unfolded over several months before our ours without this book I would not have been alerted to the diagnosis and treatment. Another excellent book is in the unlikely title never bet against occam by dr Afrin

Great book with clear format for both patient & Doctor. Lots of information, easy to understand. This book was recommended by my consultant & explains a lot & showed me, I was not alone with this illness.

great buy, very informative would highly recommend

Very informative. The side of the page which is meant for medical professionals is still very readable for patients and provides all the useful info. Great if you've just been diagnosed or to take along to show your doctor.