POTS - Together We Stand: Riding the Waves of Dysautonomia

This book is complete, thoughtfully written and incredibly useful for anybody with POTS (or parents of POTSies). The author understands the syndrome first hand, and gives plenty of personal tips. It is a godsend even if you don’t have a POTS diagnosis yet (which can take months if not years), giving ideas for coping with the syndrome. While reading, I kept wanting to thank the author for her thoroughness and vulnerability in sharing real experiences. Don’t bother buying other books. This one does it all.

I was diagnosed with POTS earlier this year. There are very few books written about POTS, especially for the patient. I learned great tips in this book for managing this illness, such as: rinsing your legs in cold water before you get out of a shower, not taking a hot shower, and how helpful compression stockings may be. The book was not edited, but as a person disabled with many chronic illnesses I understand that money can be tight, and I know that an editor can be expensive, as one reviewer commented. One other reviewer mentioned that the author is coming out with a proofread book soon. When people cut the author down, they have to remember, like someone else already said, Jodi Epstein Rhum is a fellow POTSie, and we know what it's like to live with it, so cut her some slack. Though the book has typos and repeats some information, it still holds a treasure trove of information about POTS, what to expect when dealing with it, and getting help when you need it. The first half of the book is written by Jodi. She talks about her personal experience, things she's learned caring for herself and her family (all of whom have POTS), and dealing with children with POTS. The last half of the book was written by medical professionals, and I learned a lot from them, too. I highly recommend this book. Just because some words are misspelled and some sentences are grammatically incorrect, doesn't mean that her story and the information she gives is faulty. If you have POTS, you are a friend or family member of someone with POTS, or you are an educator of a child or teen with POTS, then you NEED to read this book!

For anyone who is interested in POTS (Postural Orthostatic Tachycardia Syndrome) and learning about what it is in very simple and layperson terms, I can't say enough about this book, written by one of our own, Jodi Epstein Rhum, and with the medical portion edited by Svetlana Blitshteyn, MD (an exceptional neurologist and POTS specialist in New York). I have only started reading it, and am so impressed I had to let people know it was out there. You can get it on amazon.com. For anyone who has POTS, or has a loved one with POTS; also for medical professionals who wish to know what it is, and what life is like for the patients who have to deal with it. I've been unable to work due to POTS for over 2 years now. This book is very important to us, because there's not a lot of information out there about POTS, and we are desperately trying to spread awareness of this debilitating syndrome. Although it is invisible to those looking on, it is very real to those experiencing it. Research has shown that patients with POTS have a quality of life similar to those with congestive heart failure or chronic lung disease. An amazing book, thank you Jodi! ~Stacy Lynn Reed (California)

I have POTS caused by EDS and have purchased several books regarding my conditions. This book written by a mother of children that has this condition is the best written since a neurologist that is a POTS specialist co-wrote it with her. She gives a lot of insight and allows you to see you are not crazy. I highly recommend this book to anyone that has POTS or to any family member that needs to learns how to manage a loved ones emotions and give them an understanding of what they go through.

This is the first book I have come across about POTS, a condition I have been diagnosed with, but given little help for. It is an essential part of anyone's library who has or knows someone who has this condition. It helps explain the many complexities of POTS, and the various ways sufferers are afflicted. The book contains useful information for suggested treatments, support, different age groups. It covers a wide range of topics, many of which have been very useful to me. I am still testing some of the suggested remedies, and just in reading it, I do not feel as alone. It is amazing that there is so little known about this condition -- and that so few doctors have even heard of it! Such has been my experience -- and, even for the so-called experts, there is a wave of disagreement about what POTS is and how to treat it. Thank you for this book which helps clarify so much!

This is an excellent book that compiles information and resources for POTS patients, family members, teachers, employers and even our local doctors who may not be POTS experts. This book contains all of the info I wish someone had told me the day I was diagnosed. When I think about how much time, effort and frustration this will save future patients from suffering through, it brings a smile to my face. This book is progress for dysautonomia awareness. A few ther reviewers commented on the typos, but I don't think that is a big deal. It is the content and substance of this book that make it worthwhile. And regardless, I have heard that the author is working to fix the editing.

LOVE IT, LOVE IT LOVE IT. I was just diagnose with Dysautonomia and needed to know more about it. Well let me tell you when I started to read the book it was like reading my childhood health issues I mean almost to a T. I cried and I couldn't believe that finally after all these years I finally found out what was wrong with me. Ms. Epstein wrote the book like a pro. I feel for her and her children and hope that eventually they get better. If you have heart issues, low blood sugar, if you faint, get migraines and more and no Dr. can find out what is wrong with you, get this book you will be surprise of everything that Dysautonomia covers. THANKS AGAIN FOR THIS BOOK MS. JODI EPSTEIN RHUM Veltiana

EASY TO READ AND UNDERSTAND. MY DAUGHTER HAS P. O. T. S., AND THIS HAS ENABLED ME TO UNDERSTAND THINGS. AS SHE LIVES IN CANADA, I OFTEN FORGET WHAT I WANT TO ASK HER, SO THE BOOK IS VERY HANDY

This syndrome is very hard to diagnose and very few doctors seem to know anything about it. After going through all the mis-diagnoses in the book, we finally found a GP recognized POTS and referred us to a specialist. If you have POTS you NEED to have this book. There are a couple of support organisations (such as Potsuk.org), but it seems this book has everyhting I have been able to find on the internet - all here in one place. Thank You Jodi !

Easy to read and dip in and out of. Full of helpful ideas and tips. A great starting point for anyone with POTS or their families.

Very well written novel. Thank you.

Wrote my son care plan for school from this and the school took it on board.