POTS Read online

  POTS

  WHAT IT REALLY IS & WHY IT HAPPENS

  Patrick Ussher

  Copyright © Patrick Ussher (2017)

  Disclaimer

  Please note that the contents of this book are not intended as a substitute for medical advice or treatment. Any person with a medical condition requiring medical attention should consult a qualified medical practitioner. The author of this book does not accept any liability for injury, losses or damages which may occur as a result of following the recommendations made in this book.

  Dedicated with all my love to Mum

  (August 25th, 1950 - April 6th, 2015)

  I kept my promise.

  About the Author

  Patrick Ussher followed the Dynamic Neural Retraining System, an intensive six-month limbic system rehabilitation program, to recover from POTS. After he recovered, he set about mapping the idea of POTS as a form of limbic system impairment onto pre-existing scientific research into the condition, to see if it could be the ‘missing link’ which could explain the root cause of the condition. This book is the result of that research.

  Patrick was also part of the Stoicism Today project from its inception in 2012 until 2016, a collaboration of academics and psychotherapists which provided modernised Stoic resources based on the ancient Greco-Roman philosophy as a way of life. Patrick contributed to the development of three ‘International Stoic Weeks’ (2012-2014), which were widely featured in the media including on BBC Radio, and in newspapers such as The Guardian, Forbes and The Telegraph. Patrick edited the blog for the Stoicism Today project (https://blogs.exeter.ac.uk/stoicismtoday) from 2012 until 2016 and has also edited two books: Stoicism Today: Selected Writings (Volumes One & Two). Patrick has a BA and MA in Classics from the University of Exeter, U.K., and currently lives in Dublin, Ireland.

  Table of Contents

  About the Author

  Introduction

  Notes

  Chapter One: Where We Are Now

  Chapter Two: What Is Really Going on in POTS and Why It Happens

  Chapter Three: Explaining the Whole Elephant (or How Limbic System Malfunction Can Explain Everything We Know About POTS)

  Chapter Four: Rewiring the Limbic System & A Biological Hypothesis for Recovery

  Chapter Five: A Potential Protocol For Recovery and Outline of a Trial to Test this Hypothesis

  Addendum: General Points About Recovery and the DNRS Program

  Endnotes

  Introduction

  This book has two aims:

  One aim is to present a new theory for the origins of POTS and, in light of this new theory, to suggest that it is possible to correct the underlying cause. The presentation of this hypothesis is primarily aimed at those medical researchers who work in the field of dysautonomia in the hope that they will see the merits in what is put forward, and design a research program to test the efficacy of the Dynamic Neural Retraining System (the ‘DNRS’) for POTS.

  In addition, the book also aims to give hope to the person currently suffering from POTS that their condition may finally have an explanation and that, if they are convinced with that explanation (regardless of whether a research trial into the efficacy of limbic system rehabilitation for POTS has taken place), they may still be able to find an effective treatment in the form of the DNRS program. In line with this, this book also hopes to act as a guide for those using the DNRS program as a treatment specifically for POTS.

  I wish to make clear at this point, however, that this book does not, in and of itself, present the step by step methods by which to treat the condition using neural retraining methods. This book is an hypothesis: it is not, in itself, a ‘how to guide’. The limbic system rehabilitation program as offered by the DNRS is best placed to provide that guide. If you have POTS and you think that the thesis I am putting forward might point to the underlying cause of the condition, then the decision to pursue the DNRS as a treatment - whether through their DVD set or in-person program - will be a decision for you to make.

  Let me say more so as to explain the rationale behind this book. I myself had POTS but I recovered using the Dynamic Neural Retraining System, an intensive six month ‘brain rewiring’ program. It was developed by Annie Hopper, who herself had a form of brain impairment known as ‘Multiple Chemical Sensitivity’ (or ‘MCS’), but recovered from that condition by applying specific brain rewiring exercises which later became the basis for the DNRS program. Hopper developed that program for those suffering with MCS but later found that it could also work for those with POTS. I was one of those with POTS for whom it worked (although, interestingly, I had also become moderately sensitive to chemicals before taking the program).

  Once I had recovered, I set about attempting to understand why a ‘brain rewiring’ program might have led to my recovery, and that of others, from POTS. I read widely about POTS and it seemed to me that the principal findings on the condition to date could be explained once the idea of a physical brain impairment in the limbic system was taken into account. I became more and more certain that I had not recovered as the result of a ‘placebo effect’ but rather that brain dysfunction was indeed the ‘missing link’, the factor which rendered the ‘mysterious’ nature of POTS explicable.

  I do not have any medical qualifications nor do I have a background in science. I am aware that as a result I present the hypothesis in quite a broad and general way. There are certain claims I make which are based on ‘lived experience’ (both of myself and of others whose progress I have followed in their own recovery journeys). There are other times when I make points which are (I hope) ‘scientific common sense’. However, I admit that I may have got some things wrong even if the hypothesis is, as I believe it is, along the right lines. I hope the reader will forgive any errors made and remember that my real hope is that a researcher may take this hypothesis on one day, refine it and make it as ‘scientifically sound’ as it needs to be. Although I do try to write throughout with a degree of certainty, I am not at all tied to individual points I make if scientific investigation shows them to be wrong or misplaced in some way.

  Let me say a few more words of introduction. The fact that there are so many physiological problems occurring in the POTS patient - from tachycardia to NET protein deficiency to low aldosterone to mast cell activation problems - has often made it appear a ‘mysterious’ condition to both researcher and patient alike. It is, simply put, very hard to identify what must be the root cause when there are so many varied and often seemingly disparate symptoms. Prof. Raj, of the University of Calgary, himself a specialist in the field of dysautonomia, makes a very good point in this regard. He has described the attempt to understand POTS as being akin to the task of several blind men attempting to identify an elephant in front of them.[1] Depending on where they touch, they come up with different answers. Is it a wall? A snake? A rope? A spear, tree or fan? The same is true of POTS, depending on which aspects of the POTS patient one studies. Is it a form of extreme deconditioning? A form of neuropathy? A form of blood vessel dysfunction? A cardiac problem? All of these, and many more, have been suggested, by both medical researchers and patient groups.

  I believe that the elephant analogy holds true. Perhaps we have been like the blind men, unable to see what is actually in front of us. Indeed, rather than focussing on different parts of the ‘elephant’ separately, we need some way of taking the whole ‘elephant’ into account and of explaining why it is acting the way it is as a whole. And that is the aim of this book: to present an hypothesis which explains the ‘whole elephant’. I believe that so far research, although it has identified various crucial physiological problems, has been looking at the branches of the tree rather than at its roots. I argue in this book that there is one root cause and that its treatment can and should le
ad to the return to health of all the POTS ‘branches’.

  I believe that limbic system impairment - a very physical impairment to that part of the brain - can explain the key findings in POTS to date, including NET protein deficiency (the root cause of blood vessel constriction problems upon standing up in POTS patients and resulting elevated heart rate), low aldosterone and sodium retention levels (the main contributory factors to low blood volume in POTS patients), mast cell activation problems and much more besides, including conditions that often overlap with POTS, such as Fibromyalgia, Irritable Bowel Syndrome (and other digestive issues), Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. The case of Multiple Chemical Sensitivity is especially important. For, even though MCS has been rarely mentioned in connection with POTS up until now, the DNRS was actually originally developed, as I mentioned above, as a treatment for that condition. What was found subsequently however is that some patients with both MCS and POTS who followed the DNRS program actually recovered from both conditions, a fact which suggests a shared neurological origin in the limbic system. Sometimes important advances in scientific understanding happen ‘by accident’ and I believe this to be one of those cases.

  And the link between MCS and POTS is significant for other reasons too. This is because MCS is obviously a neurological condition affecting the limbic system. Why? MCS usually (but not always) occurs after some kind of chemical poisoning and leads the parts of the brain which process smell - which are firmly rooted in the limbic system - to rewire themselves into a chronic state of hypervigilance following that trauma, leading the sufferer’s sense of smell to change drastically. Indeed, the person with MCS soon finds all chemicals to be noxious (in some cases to the point of anaphylactic shock). The reason this is obviously neurological is that it is clearly a condition that affects sensory perception and sensory perception is, of course, processed neurologically by the limbic system. Given this, the fact that the DNRS has led to the recovery of those with both MCS and POTS points to the fact that both share a similar neurological origin, even if the reasons why either condition might develop are different and even if different parts of the limbic system are adversely affected primarily. I will have more to say on the link between MCS and POTS in the main argument of the book.

  The book also takes seriously the significance of there usually being a traumatic triggering event (understood broadly to include physical traumas, such as a viral illness or Lyme disease) that precedes POTS. Indeed, there is a medical consensus that POTS is preceded by a traumatic event or that it can build progressively as a result of more insidious traumas over a longer period. However, the significance of the condition being preceded by a traumatic event has not, I believe, been grappled with yet fully. Given the fact that there usually is a preceding trauma and that this is an observable constant, it really must hold the key to understanding the true nature of the condition. I believe that it does and that these traumas can explain in very clear ways, as we shall see, why POTS is actually a form of limbic system impairment.

  On this book’s companion website (www.whatpotsreallyis.net), the reader will find additional evidence which supports the book’s main ideas, in the form of testimonials by those who have used the DNRS as an effective treatment for POTS. I hope that this ‘anecdotal evidence’ will in turn inspire others to consider using the DNRS as a treatment for their own POTS and also that it may inspire researchers to investigate the DNRS as a possibly effective treatment for the condition.

  Two other expressions of gratitude. I would like to express my admiration for Annie Hopper for her work in designing the DNRS program so skilfully with limbic system impairment in mind. Without the courage to have developed it first of all to treat MCS, it might never have come to pass that its efficacy for POTS would have become known. And I would also like to express my admiration for Lauren Dinkel, one of the first with POTS and MCS to recover using the DNRS, and whose inspiring website (http://wheelchairtorollerblades.com) I stumbled across when I was unwell and seeking treatment options. Before I started the DNRS program, I wrote to her: ‘Lauren, let’s beat POTS!’

  Here’s to hoping that we may have done just that.

  Notes

  A. Contact information for the DNRS can be found here: https://retrainingthebrain.com/contact-us/

  B. The Book’s Youtube Channel (‘What POTS Really Is’)

  The principal parts of the book are also contained in a one hour YouTube talk, and a variety of other shorter talks on the channel also consider other aspects of the ideas put forward in the book.

  C. Gathering Evidence for the Efficacy of the DNRS for POTS

  If you have used the DNRS for at least six months to treat POTS, please consider blogging about your experience or creating a Youtube video.

  Please also consider submitting a written testimonial of your experience of using the DNRS as a treatment for POTS to the book’s companion website (www.whatpotsreallyis.net) via the email [email protected]. I hope to publish a second edition of this book in the future which will contain testimonials of those who have treated their POTS effectively by following the DNRS - your testimonial could be one of them.

  I welcome emails from readers of the book. Please note, however, that I may not be able to answer every email due to other work and time constraints.

  Chapter One: Where We Are Now

  The new hypothesis in this book takes the most significant existing scientific findings concerning POTS and attempts to explain them by reference to a hitherto unconsidered root cause. In order, therefore, to put forward this new hypothesis, we must first consider the research on the condition to date. In this chapter, I outline the main aspects of the current medical research on POTS, including a discussion of the acronym itself, the status of the condition as a ‘syndrome’, current thinking on what kinds of events tend to ‘trigger’ the condition and typical methods used to treat it. I will then proceed to the most important part of this chapter which will entail considering, in detail, the two main hypotheses to date as to its biological causes, namely that of ‘deconditioning’ and that of ‘NET protein deficiency’, thereby laying the groundwork for the rest of this book.[2] I note here that I am aware that there are other hypotheses that have been put forward regarding the condition’s cause. There are, however, good reasons for limiting our discussion to NET deficiency and to deconditioning at this point. This is because both of these theories potentially relate most obviously of all to the pronounced heart rate increase upon standing that one sees in the POTS patient. In terms, therefore, of explaining why this cardiac elevation is present, it makes sense to focus on these two theories first of all. However, other aspects of research into what is going wrong at a physiological level in POTS patients will also be considered in chapter three.

  POTS: An Overview of its Symptoms and the Significance of the Term ‘Syndrome’

  Let us start our discussion where most discussions of POTS start: by explaining what the acronym stands for. The letters “POTS” do not, in fact, seek to do anything other than describe some of the more pronounced symptoms of the condition. Let’s consider each word in turn:

  - ‘Postural’: This implies that the symptoms are particularly manifest depending on the body’s position or ‘posture’.

  - ‘Orthostatic’: This defines in what kind of posture these symptoms are most manifest, namely when the body is ‘orthostatic’ or ‘upright’

  - ‘Tachycardia’: This refers to the fact that, upon standing, the patient has a fast heartbeat.

  Taken together, we may say simply that when the patient stands up their heart beats unusually faster than normal. We can add that the standard medical definition suggests that the heart rate of the POTS patient increases by 30 beats or more from supine to standing within the space of 10 minutes. Prof. Raj describes these essential criteria as follows:

  “The most striking physical feature of POTS is the severe tachycardia that develops on standing from a supine position. Blood pres
sure and heart rate must be measured in both postures and should be taken not only immediately after standing but also at 2, 5 and 10 minutes as occasionally patients have a delayed tachycardia. Normal subjects commonly develop a transient tachycardia within the 1st minute of standing that should not be mistaken for POTS. A sustained heart rate increase ≥30 beats per minute is considered diagnostic of orthostatic tachycardia.”[3]

  For example, if a patient has a resting heart rate of 85 BPM (beats per minute) when lying down and this increases to, say, 115 BPM (or more) upon standing, then that person meets the diagnostic criteria for POTS. There is, as many readers will know from personal experience, a particular kind of test that measures this ‘heart rate differential between supine and standing’ with particular accuracy, and that is the ‘tilt-table test’.

  It is, of course, normal for the heart rate to increase upon standing up in everyone, for the heart has to work harder to pump blood to the brain in response to the extra work of being upright. However, in the person without POTS, the heart rate usually only increases between 10 to 20 beats from supine to standing, not 30, 40, or even 50 beats more, as is seen in the case of the POTS patient. As Prof. Raj has written of the heart rate increase upon standing in the healthy person: the ‘…assumption of upright posture results in a 10-20 beat per minute increase in heart rate.’[4] Similarly, Wieling and Groothuis write that under normal circumstances:

  “Orthostatic pooling of blood begins almost immediately upon the change from the supine to the upright posture and is estimated to total 300-800 mL; the bulk of total change occurs within the first 5-10 seconds. In humans, orthostatic adjustments are provided by an effective set of blood pressure regulatory mechanisms. They maintain blood pressure at an appropriate level for perfusion of the vital organs, even for the brain, which is located above the heart. To achieve this, the regulatory systems increase heart rate, cardiac contractility and vascular tone to stabilize blood pressure at the level of the heart and brain.”[5]