My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Sunday, April 15, 2012

POTS: Together We Stand Riding The Waves of Dysautonomia

***This book review is cross-posted at Please Tape Me Back Together and The Lovely Bookworm.

POTS: Together We Stand Riding The Waves of Dysautonomia
by Jodi Epstein Rhum with Svetlana Blitshteyn, MD

ISBN-10: 9781466371507
506 pages

© 2011

Health, Fitness & Dieting > Disorders & Diseases > Physical Impairments


POTS: Together We Stand Riding The Waves of Dysautonomia by Jodi Epstein Rhum and Svetlana Blitshteyn, MD

I  bought this book because I have POTS, or Postural Orthostatic Tachycardia Syndrome, and wanted to learn more about this type of Dysautonomia.  I did learn a lot, but I didn't learn nearly as much as I expected to.  While the book offered a great deal of information, it could have been one third of the size and still got all the same information across.  Most of the facts or physician's opinions are restated over and over again, making what already may be a hard book for some sick people to read, even harder.  The book is heavy, which may make a difference to some readers, as some of us can't lift a book this heavy to read, especially not on bad days.  I suggest pilling pillows next to your head to rest the book on.

The best tip I learned from this book is to take cool showers and then at the end of the shower to spray my legs with cold water to decrease the size of my blood vessels.  This really works well, and I haven't passed out in the shower since doing this.  

Much of this book applies to parents of children with POTS, which only helps a small subset of POTS sufferers.  It gives quite a few home workouts to do, but I am unable to do them because of the extent of all of my disabilities.  The ending is written by physicians, but much of what they say repeats what has been said in other parts of the book.  Also, there are recipes, but the recipes either require expensive ingredients or lots of preparation a person with POTS may be unable to do.  One of the things that bothered me the worst is the many, many spelling and typing errors.  I understand the book is self-published, but couldn't someone have edited it?

I am giving the book three stars instead of two because it does give a lot of good information, it's just that that information is repeated many times and for the most part found online just as easily.

Jodi Epstein Rhum has a B.S. in Education from the University of Illinois. She is a former middle school teacher who has devoted her life to POTS awareness. She has a mild case of POTS, and has three children with POTS, one of those has Ehlers-Danlos Syndrome, as well. She is a mother, teacher, and a patient.

Dr. Svetlana Blitshteyn is a board-certified neurologist who specializes in POTS and other autonomic disorders in Williamsville, New York. Her neurology residency was done at May Clinic, and she currently serves as Clinical Assistant Professor at Buffalo School of Medicine and Biomedical Sciences. She serves as the medical advisor for Dysautonomia Information Network. She was also featured in the documentary "Changes:Living with Postural Orthostatic Tachycardia Syndrome," and has published in many scientific journals on the topic of POTS, headache, and other neurologic disorders.

Jodi Epstein Rhum author of POTS: Together We Stand Riding The Waves of Dysautonomia

Svetlana Blitshteyn, MD author of  POTS: Together We Stand Riding The Waves of Dysautonomia   

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