The Dysautonomia Project
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Introduction
Calling all spoonies! This book is for you. The Dysautonomia Project, by Kelly Freeman, David S. Goldstein, and Charles R. Thompson is all about dysautonomia and some of its comorbid conditions. If you don’t know, I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and this is a type of dysautonomia. Dysautonomia is an umbrella-term for any disfunction of the Autonomic Nervous System. I know that’s a lot of big scientific words but it, basically, means having an abnormal ability to maintain homeostasis (a big word for sameness). Symptoms of dysautonomia include, dizziness, fatigue, gastrointestinal problems, fast/slow heart rate, headaches, and brain fog. Because of this, it can be difficult to function in every day life.
POTS & Dysautonomia
For people with POTS, their symptoms are specifically related to going from lying down to an upright seated or standing position or being in an upright position for an extended period of time. When in an upright position, a person with POTS’s blood pools in the abdomen and other areas instead of circulating around the body with ease like it should. Some people will pass out or just feel like they’re about to pass out. Some people get headaches and others don’t. Some people have an upset stomach and others don’t. The main requirements for having POTS is a tachycardia related to going from laying down to standing and feeling like you’re about to pass out when you do so. Being diagnosed with POTS or dysautonomia doesn’t mean you’re going to experience every possible symptom. One person with dysautonomia can have a completely different set of symptoms than another. On top of that, this condition is usually written off as anxiety by many doctors because they have never heard of and/or received proper training on dysautonomia. I am lucky enough to have heard about it early on in my process of seeking treatment and have a neurologist who specializes in headaches and dysautonomia. Even so it would have been really helpful to have learned all of the doctor-managing and doctor-finding skills, before I started on my chronic illness journey. There are so many things that seem like common sense to me now but it’s only because of trial and error with doctors appointments that I learned it. That is why if you have, suspect you have, or know someone who has a form of dysautonomia chances are they have never heard of this book unless they went through trial and error like I did and found an amazing neurologist who told them about it.
If you aren’t already convinced, let me tell you so more about it. Each chapter includes information for patients and informations for physicians. It’s like this so any medical professional that reads it is able to gain accurate knowledge at a level they need and understand to be able to better recognize it in their patients. The patient section includes the same general information without as much medical jargon. This way you won’t feel lost or like you need to look up a new word every sentence. I covers everything from what dysautonomia is, common comorbid conditions, how to find a doctor who can actually help you, what type of testing and treatment to expect, to what different symptoms look like on a day-to-day basis. Dysautonomia is a disease that varies from person to person. Each individual living with dysautonomia, even with the same version, will have very different symptoms. Some people may have non-stop headaches and others will have never had one in there life. Some people may pass out and others may only experience pre-syncope (the stuff that happens before you pass out that makes you feel like you’re about to pass out).
Before reading this book, I thought I knew everything I needed to know about POTS, but I quickly found out I was wrong. There were symptoms that I didn’t even know weren’t normal. For example, I thought everyone experienced pins and needles and/or numbness in their distal (farther away from the torso) extremities and face whenever they aren’t moving for a little bit. Apparently, that’s not normal. I also learned that there were treatments for POTS I had never even heard of. I haven’t even come close to running out of treatment options!
Conclusion
To those of you living with dysautonomia, I want you to know that there is hope. There are ways to manage your symptoms, even if it doesn’t seem like it. There are doctors who have heard of and treat dysautonomia, albeit very few. There are easy and inexpensive lifestyle changes you can make like drinking more water and increasing your salt intake that make a difference in symptoms. If you haven’t been diagnosed, yet, it is possible. I would love to talk to you about your experiences with dysautonomia, if you have it. You are not alone! You may feel alone, but know that there are other spoonies like you, with dysautonomia.If you are interested in reading The Dysautonmia Project, you can by it here (this is an affiliate link)! I can’t wait to hear all of your responses to reading this book! I hope you’ll love it as much as I do!
Make sure to stay safe, drink plenty of water, and eat all the salt (well not all of it)! That’s all for this week but if you need me, I am only an email away!
