POTS - Together We Stand: Riding the Waves of Dysautonomia

by Jodi Epstein Rhum, Svetlana Blishteyn (Editor)

Second Edition POTS - Together We Riding the Waves of Dysautonomia is a collaborative effort of many doctors, teachers, counselors, parents and patients who wove this tapestry. Initially conceptualized as a survival guide for children, teens, young adults and parents; it quickly transcended into this unprecedented, critical volume. This encompassing work responds to the many desperate and heartbreaking pleas of those affected by dysautonomia; included are clear explanations of medical information, evidenced-based research, best practices for clinical diagnoses and treatment options, alternative/complimentary medicine approaches, non-medical strategies, coping techniques, helpful tips, patient rights and options, and inspiring narrative accounts of people living with the syndrome around the globe. The book contributors and its readers join hand in hand to represent the POTS dysautonomia community's shared struggles and hopes, concerns and endeavors, unequivocally serving as a living testament that "Together We Stand." This is the 3rd Edition!

Genres: Health, Nonfiction, Medical

506 pages, Paperback

First published December 4, 2011

Reviews

[Tara · Rating 3 out of 5]

Contains a lot of good information, but seems to be written more for teens with POTS or parents of teens with POTS. Would have been helpful if she had included more chapters on topics relevant to adults with POTS: relationships, parenting, career choices, financial struggles, etc.

[Maggie · Rating 3 out of 5]

This book is really helpful for people who, like me, are struggling with POTS. My only issue with this book is how poorly written it is. The grammatical mistakes drove me CRAZY, making this book seem unprofessional and hard to read. I have a hard time recommending this book to others because of the grammar, even though it is very informative. Can I trust the information in a book written by an author who did not take the time to fix her errors or proofread? With that being said, if you can get past the hard to read and choppy sentences in some sections of this book, it is very helpful in learning about dysautonomia.

[Ali · Rating 3 out of 5]

Some of the tips are helpful, but many are not.

Also, this woman focuses on POTS that is severely debilitating, whereas I'm looking for something for moderately debilitating cases.

However, because POTS is not well know (at all) this book is really the only one out there for people with the condition. In this manner, I appreciate it greatly.

[Kylie Potter · Rating 4 out of 5]

I loved how much information this book has! I do see some people recommending that their doctor purchase a copy of this book, and while I love most of the information it contains, I would probably want some things corrected before distributing it to a doctor who has never heard of POTS before. For instance, page 341 is short section written by a physical therapist detailing workouts for POTS patients. He mentions that POTS causes a sharp drop in BP. This is the total opposite of what POTS is. POTS diagnostic criteria requires a sharp increase in heart rate WITHOUT a drop in BP. This is confirmed multiple other times throughout the book (there are 2 instances in my highlighted section). There’s another story I highlighted which rubbed me the wrong way. It’s a mother talking about how therapy for her children with POTS included not acknowledging their POTS behaviors (i.e. “whining,” claiming they can’t do something or symptoms are acting up, etc.). I was flabbergasted that even made it into the book. A lot of POTS patients mask their symptoms because of the general disbelief they are faced with by the general public regarding their symptoms. Others usually minimize what POTS patients are going through and can make them feel alone and misunderstood. Not acknowledging your child’s symptoms will not “make them go away” or help them cope better. What sort of logic is that? It just teaches the child to be quiet when they are having a flare-up and possibly over-exert themselves, leading to an even worse flare-up. This sets a horrible precedence for later in life when they may have to ask for school and/or work accommodations or speak up about their illness otherwise. The entire book focuses on how symptoms are not psychological. They are physical and able to be measured. While focusing on symptoms can undoubtedly make them worse in certain scenarios, those symptoms shouldn’t be entirely discounted or ignored by a parent. Embracing the symptoms and listening to your body is one of the first steps to coping with POTS to make sure you are listening to what your body needs and not pushing yourself too far. Some of the personal anecdotes really didn’t sit right with me for reasons such as this. There were multiple parental accounts where I got an icky vibe. Anyway, I did like this book and I will keep it on-hand to reference information in the future, but I won’t re-read some of the personal stories.

[Helen White · Rating 5 out of 5]

An excellent handbook to the daunting, all-encompassing experience of living with PoTs, dysautonomia or related condition such as chronic fatigue syndrome. "Many times people with chronic illnesses fall into depressive periods. Some consider taking their life for they live in terrible pain (joint pain, stomach aches, migraines, and dizziness). It is difficult going through the day. Hope is also often in short supply. They feel that the pain will be unrelenting". This is the reality confronted by Rhum (here's hoping its one that is about to change as long-covid brings dysautonomia more clearly into focus).

So many people haven't even heard of PoTs or dysautonomia, its near-impossible to describe, people that surround the individual (from teachers/colleagues to friends and even family members) will disbelieve the condition or think it is being exagerated and doctors will scratch their heads of have nothing to offer, as happened to me. If you have it, your life will likely have become much smaller, more cautious, much more prone to "crashes" from minor episodes of overdoing it (which look nothing like other people's idea of strenuous behaviour!) and you will be in mourning for the life you once had.

This valuable book offers headway, albeit a slender foothold, towards understanding what causes the condition, what its myriad symptoms are, how to handle them and when to seek further help. You will feel overwhelmed and confused if this is happening to you and the straightforward chapter headings will talk you through. It will help you formulate an action plan and glean a route, if not out of the terriory then certainly through it. Definitely one to have on your self if you or anyone in your family is living with this.

[Laura Hogge · Rating 3 out of 5]

A good introduction to this lesser-known and understudied world of dysautonomia, for those struggling with (or has a child with) POTS. It was nice to feel some validation.
It’s pretty basic and the grammar is awful.
With all the latest research and with POTS being so so close to being categorized as “autoimmune” I’m hopeful that we’ll get more books out there about this syndrome soon.

[Eileen Record · Rating 5 out of 5]

This book was life changing it truly helped me to better understand not only my children's illness but how to help them cope.

[Janice · Rating 4 out of 5]

Lots of helpful information for someone newly diagnosed

[Poulomy Chakraborty · Rating 4 out of 5]

This book is a simple read and a super power, though it could do better with an updated version because theres a lot more going on in the world of POTS research and coping.

[Danielle · Rating 3 out of 5]

Contains a lot of good and a lot of bad. A plethora of grammatical and spelling mistakes and info that's so much of an individual basis it's useless.

This book also seems like it's written for the scientifically illiterate parents of younger kids with POTS and less for patients themselves. Not to mention...POTS is only one type of dysautonomia yet this author uses the words interchangeably (they're not interchangeable).

Oh well, for now this is all we have. The exercise regimen is useful at least if you have a physical copy of the book

[M.J. · Rating 3 out of 5]

As someone who has POTS I found that it was lacking in many areas. It's difficult to write about POTS when you haven't experienced the disease yourself. Unless you actually have the disease you have no idea how it feels to experience such debilitating symptoms day in and day out.

However I do think it's a good book for teens fighting this disease.

[Nikki · Rating 5 out of 5]

I just finished this book yesterday. I'd definitely recommend it to anyone who has Dysautonomia and to people who know someone dealing with it. It explains things very well and has lots of information and tips on dealing with this condition.

[Christi · Rating 5 out of 5]

THE BIBLE FOR POTS (DYSAUTONOMIA) PATIENTS. GREAT RESOURCE. Broken up in to sections so you can read only those sections that relate to your life. Very informative section on what to do with school aged children, nutrition and nutirients. I refrence it weekly.

[Melissa · Rating 5 out of 5]

Great book. Finally I was able to understand my illness more. It also provides sections where it discusses how to get your family to understand. I recommend this book to anyone who has been diagnosed with POTS / Dysautonomia. Some of the proceeds from this book go to Dysautonomia research.

[Effie · Rating 5 out of 5]

This is a great book for anyone who has Dysautonomia! It's filled with helpful information and is definitely well worth the money. You can't find it in stores, but you can find it on Amazon.

[Carol Shinde · Rating 5 out of 5]

This is an excellent book to learn about dysautonomia. It helped me understand my symptoms a great deal. I am so thankful for this knowledge.

[Kristen · Rating 3 out of 5]

informative & helpful

[Kathy · Rating 4 out of 5]

The formatting of the book is very odd, but it's the only one out there to give in depth information about Postural Orthostatic Tachycardia Syndrome. For that reason, it gets 4 stars.