Four Changes I Would Make to my Book
April 2023 Update
It is five years since I published my book outlining a possible limbic system impairment as the root cause of POTS. I have had time to have feedback from both patients and researchers as well as time to think further on the ideas I have put forward. In general, I have had positive feedback from patients, who have found the book instrumental to improving their health and/or recovering, as well as from researchers who found the ideas valuable and of interest.
However, there are some things I would change about the book were I to write it again now. I don’t have time at present to write a 2nd edition and so I am recording these changes here. In some cases, I also made errors in the book which need to be corrected. I would make the following changes:
1. While limbic system impairment / dysautonomia may be the root cause of POTS, this does not mean that a brain rewiring approach on its own will be the most effective at resolving symptoms (although it might, of course, be for some people). Often the root cause of the illness gives rise to numerous secondary dysfunctions within the body which may be difficult to shift with brain rewiring alone. These secondary dysfunctions may require their own specific treatments in order to help the patient move forward. Furthermore, these secondary dysfunctions might stress the brain of their own accord. For example, many POTS patients have low blood volume. This is a highly stressful state for the nervous system. Taking measures to correct it through medication or Oral Rehydration drinks will result in calming the nervous system down. Another example are microclots in ME/CFS that are impairing oxygen uptake into muscles and organs, including the brain, something which, again, stresses the nervous system. Medication, supplements and more mechanical interventions like HELP apheresis, may be important for some patients. Both of these problems can also cause orthostatic intolerance on their own. There are many parts of the puzzle in POTS and related illnesses. One should try to treat each of them so as to reduce the load on the system as much as possible during the recovery period. In the book, I believe I emphasised too much the idea that brain rewiring alone could resolve all symptoms. This may be the case for some people. For others, a multi-lateral approach is crucial. Dan Neuffer in his book, CFS Unravelled, makes strong arguments along this line.
2. In the book, I believe I mistakenly downplayed the link between Ehlers Danlos & POTS, suggesting that EDS was likely triggered for its own genetic reasons separate to the development of POTS. In doing so, I was trying to counteract the idea that there is a key genetic reason for the development of POTS. I still think that is unlikely. However, it is undeniable that many patients with POTS (and related illnesses) tend to develop connective tissue issues. Furthermore, it is also undeniable (from research) that this will worsen orthostatic intolerance (when skin becomes less taut, the blood vessels are less supported in their functions while someone is upright). In my view now, having EDS will make orthostatic intolerance and therefore POTS worse. Furthermore, these particular orthostatic problems may be lifelong, even if a limbic system impairment is corrected.
3. In the book, I suggest that the constant release of norepinephrine/adrenalin will eventually ‘wear out’ the NET protein, the function of which has been shown to be impaired in many POTS patients. Following helpful feedback from a Professor of biology, I would suggest that the more likely result of the excessive norepinephrine on the NET protein is that the NET protein may develop ‘norepinephrine resistance’ (in much the same way as excessive insulin release creates insulin resistance in diabetes). In this case, switching off the excessive norepinephrine release should lead to lessening the norepinephrine resistance and thereby restoring normal NET protein function, improving vascular activity and resolving a key component of POTS symptoms.
4. Finally, I made a basic error for which I can only ask the reader’s forgiveness. In the book, I repeatedly stated that norepinephrine and adrenalin are the same substance. They are not: they are different chemicals. Of course, they are both involved in the ‘flight or fight’ response and this error doesn’t make a major difference to the central argument of the book but, nevertheless, it was an unacceptable error to have made.
Otherwise, after five years, I am still generally in support of the central arguments of the book and, with the above caveats, hope that it can continue to be of support for those recovering from POTS.
While I still think my book has a lot of merit in its emphasis on neuroplastic approaches, like the DNRS, to POTS, I do not fully stand behind its overall argment anymore. For that reason, the book is set at the lowest possible price point on Amazon.
Postural Orthostatic Tachycardia Syndrome (POTS) is currently defined as a ‘syndrome’, a collection of symptoms for which the root cause has not yet been identified. I argue the case for POTS being considered a form of neurological injury to the limbic system. The limbic system is the primitive 'flight or fight' part of the brain which is also the start of the entire autonomic nervous system.
I argue that this neurological injury is best conceived of as a state of 'hard-wired crisis' following an antecedent trauma. The traumas that lead to such a crisis state are varied and can include a viral illness, pregnancy, surgery or psychological trauma (or a combination of different kinds of trauma) - in short any kind of event that the autonomic nervous system might 'register' as traumatic.
I believe that limbic system dysfunction is also responsible for many 'knock on' (or 'secondary') health effects on the body and that it can explain many aspects of pre-existing scientific research into POTS including: NET protein deficiency (which is responsible for blood vessel constriction problems and resulting elevated heart rate upon standing), low aldosterone and poor sodium retention (which are primarily responsible for low blood volume problems) and mast cell activation problems (which are responsible for the excessive release of histamine in many POTS patients). I spell out why I believe limbic system dysfunction can cause all of these problems (and more) in detail in the book and on my Youtube channel. As the limbic system is also the part of the brain which processes stimuli, the limbic system dysfunction theory can also explain why many POTS patients are sensitive to stimuli including light, sound and smell.
If it is correct that POTS is caused by a limbic system impairment, then a potentially effective treatment exists in the form of the Dynamic Neural Retraining System (DNRS), an intensive six month, neuroplasticity based, limbic system rehabilitation programme. The DNRS program was originally created by Annie Hopper to treat another neurological injury to the limbic system called Multiple Chemical Sensitivity (MCS), a condition in which the smell centres of the brain (which are rooted in the limbic system) enter a state of chronic hyper vigilance following (usually) an initial dangerous chemical exposure. The DNRS program was later found to be effective, however, for those with POTS as well as MCS, thereby pointing to a possible shared neurological origin.
I myself recovered from POTS by following the DNRS program. I am now setting about systematically gathering evidence of others who have recovered from POTS as a result of following the DNRS. Below you will find both written and video testimonials of recovery.
Research by the Universities of Calgary and Alberta into the DNRS program and its effectiveness for a range of other limbic system conditions (Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity) is soon to get under way. This study will also include POTS, thereby testing the limbic system impairment hypothesis.
The DNRS program can either be taken as part of an intensive five day in-person program or via a DVD programme. You can find out more information about you can obtain the DNRS program below.
POTS: What It Really Is & Why It Happens
Blurb: Postural Orthostatic Tachycardia Syndrome (POTS) is currently defined as a ‘syndrome’, a collection of symptoms for which the root cause has not yet been identified. This book aims to rectify this by arguing the case for POTS being considered a form of neurological injury to the limbic system following an antecedent trauma, such as a viral illness, pregnancy, surgery or psychological trauma (or a combination). Patrick Ussher himself had POTS but recovered by following a limbic system rehabilitation program (originally developed to treat Multiple Chemical Sensitivity) called the Dynamic Neural Retraining System (DNRS). After recovery, he set about mapping the idea of a limbic system impairment onto pre-existing research into POTS and found that it could explain many key findings including: NET protein deficiency (which is responsible for blood vessel constriction problems and resulting elevated heart rate upon standing), low aldosterone and poor sodium retention (which are responsible for low blood volume problems) and mast cell activation problems. This book will simultaneously act as a guide for those interested in using the DNRS as a treatment for POTS and also as a call for further research into the potential efficacy of the DNRS for treating POTS.
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. The book (POTS: What It Really Is & Why It Happens) and Youtube channel are the results of that research. He is pictured right with Annie Hopper, founder of the DNRS, at the Institute for Functional Medicine's Conference on Neuroplasticity in June 2017.
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 founded and edited the blog for the Stoicism Today project and has 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.
His personal website is: www.patrickussher.com
About the DNRS
Six Month Limbic System Rewiring Program That Targets The Root Cause of POTS
About the DNRS
The Dynamic Neural Retraining System (DNRS) is a six month limbic system rehabilitation program that treats the root cause of a range of health conditions that are arguably caused by limbic system impairment following a trauma, broadly understood. Those conditions include Multiple Chemical Sensitivity, Chronic Fatigue Syndrome, Electro-Magnetic Hypersensitivity, Fibromyalgia, Food Sensitivities, Postural Orthostatic Tachycardia Syndrome, among others. Many who take the program have more than one of these conditions and yet find the program effective for the range of conditions they may be suffering from.
The program was developed by Canadian Annie Hopper who devised it to recover from Multiple Chemical Sensitivity, Electromagnetic Sensitivities and Fibromyalgia. The program was later found to work for other conditions, including POTS. It is available in a DVD series and also in in-person programs.
You can find more about the Dynamic Neural Retraining System (DNRS) and their DVD or In-Person Seminar Programs here.
Please note that the author of this website, Patrick Ussher, does not work for the DNRS. This website contains affiliate links which means that Patrick Ussher receives a small percentage of DNRS sales referred from this website, at no extra cost to you.
A One Hour Talk Which Makes the Case for Considering POTS a Form of Limbic System Dysfunction
POTS Recovery Videos
Video Testimonials & Interviews of POTS Recovery using the Dynamic Neural Retraining System
Lauren Dinkel's Recovery Story
Reprinted from the book:
Lauren Dinkel developed POTS after contracting mononucleosis at the age of 19. She had POTS for over four years before she found the DNRS. In the last of those four years, her condition had deteriorated to the point that she could not stand up at all, was in a ‘tilt-in-space’ wheelchair, in constant pain and unable to eat more than a handful of foods. Her heart rate in a supine position was around 135 BPM. Light and sound would give her migraines. Lauren’s hair had begun to fall out, she had become skin and bones, and she had lost all hope. Her mitochondrial cell function was on the level of an elderly woman. Her family tried everything. Lauren visited over 35 specialists and countless alternative medical practitioners, and her parents spent over $100,000 outside of their medical insurance in trying to find the answer to their daughter’s suffering. POTS was not the only condition Lauren was diagnosed with. She was also diagnosed with Fibromyalgia, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Multiple Sleep Disorders (including atypical narcolepsy), Pollen-Food Allergy Syndrome along with Mast Cell Activation Problems, Movement Disorder and Non-Epileptic Seizures, Multiple Chemical Sensitivity, Electromagnetic Hypersensitivity Syndrome, Depression and Anxiety.
Lauren attended the DNRS workshop in April 2013. Within days, she was out of her wheelchair, and she never used it again. She applied herself with relentless diligence to the program and, although in the first few months, many things were still physically very challenging for her, the speed of her overall recovery was nothing less than extraordinary. Six months after taking the program, an orthostatic test showed that Lauren no longer had POTS, with a supine and standing heart rate both in the 70s. Lauren felt that she was “100% recovered” slightly under a year after taking the DNRS program. As of early 2016, Lauren no longer uses the DNRS program, is fully free from POTS, is happily married, and is the proud mother of a young, healthy boy. You can read more about Lauren on her own inspiring website: http://wheelchairtorollerblades.com
Brittany's Recovery Story
Reprinted from the book:
Brittney was sick for four years. She was diagnosed with Lyme disease, POTS/dysautonomia, MCS, EMF, food allergies, PTSD, anxiety disorders and depression. She saw neurologists, cardiologists, endocrinologists, naturopaths and other alternative practitioners. She had a team of medical support and extended family support which meant that there was someone with her 24/7. At the worst of her illness, she did not see the outside of her house for over a year and a half. She spent over $300,000 in pursuing different treatments, some of which helped a bit but some of which also made her condition much worse. She was in tremendous pain, unable to stand, and she would go into convulsions if she attempted to walk. Interestingly, from the point of view of this book’s hypothesis, she felt that her nervous system was ‘constantly firing off’. She also had blurry vision and was unable to eat more than five particular foods for over 18 months. Her condition deteriorated to the point where any treatment or supplement might send Brittney to the emergency room.
Brittney ordered the DNRS DVDs having heard about Lauren’s website. Within the first three to four days of practicing the program, her mood improved, and she no longer felt so ‘stuck’. After several weeks, she was able to walk again, and she also gradually expanded her diet, gaining 15 pounds over six months. At that point, she attended the DNRS in-person workshop travelling on her own, reporting that her chemical sensitivity was ‘completely gone’. She even had her first glass of wine in five years! She is now getting her life back, as she puts it, ‘in ways I could never have imagined’.
POTS Recovery, Interview #2: The Story of Jared
In this interview, the second in a series of interviews of those who have recovered from POTS using the Dynamic Neural Retraining System (DNRS), I talk with Jared about her recovery.
Jared was in a wheelchair for a whole year at the worst of her struggles with POTS, which she developed following exposure to mold. She also had severe mast cell activation problems. With the exception of eight foods which she could eat, any other food would lead to severe reactions. She also had chemical sensitivity and electro-magnetic hypersensitivity. In this interview, she shares with us the worst of her illness and how she got better by following the DNRS program.
POTS Recovery Interview #3: The Story of Nick
In this interview, I talk with Nick from New Zealand who had POTS for a period of 18 months before recovering using a brain rewiring program known as 'The Switch'. We cover the symptoms he experienced, the triggering trauma, and the recovery process that unfolded following retraining the primitive part of his brain that had been affected by the initial trauma. His standing heart rate at its highest when he had POTS was 150 and just before this interview it was 82.
POTS Recovery Interview #4: The Story of Michelle
In this interview, Michelle shares her story of POTS recovery using the limbic system retraining program The Dynamic Neural Retraining System (DNRS).
Written Testimonials of Recovery from POTS
Added Here As I Receive Them
(I hope a second edition of the book will include these and additional future testimonials)
1. Hope (Sarah)
I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in 2014 although I had been experiencing symptoms for over 18 months prior to diagnosis.
I had been a very fit, active person up until 2011 when I contracted several tick borne infections which left me extremely unwell. I was bedbound, in horrific pain with sensitivity to both sound and light due to severe neurological involvement. My heart was affected, as were my kidneys, musculoskeletal system and gastrointestinal tract.
It became clear after some time on treatment for the tick borne diseases (TBD) that my autonomic nervous system had also been affected. I was weak and dizzy, had poor sleep, headaches, experienced prolonged episodes of heart palpitations and when I stood up my heart would race for a long time afterwards. Neurological assessments confirmed a diagnosis of POTS in addition to the TBDs. It was suspected that the catalyst for developing postural orthostatic tachycardia syndrome was one or all of the tick borne infections.
My day-to-day life at this stage was very challenging. The severe fatigue that I was experiencing dramatically affected what I could do. Movements and transitions from lying down to standing had to be carried out very slowly. I would often need to lie down very suddenly or I would faint. I was experiencing other symptoms related to the TBDs but although these began to improve with treatment, the POTS symptoms worsened and were hugely debilitating. Heat exacerbated the symptoms as did my menstrual cycle.
To support my autonomic nervous system I adjusted my diet, paced my activity and planned things as best as I could. I used lifts and escalators. I spent long periods lying down. Limiting stress was easier said than done as the TBD treatment was very hard and I was unable to work so there was a great deal of financial stress. My friends and family fundraised and most of my energy was put into researching TBDs which resulted in me going to see an infectious disease specialist in the USA about 2 years after I was infected. I saw good improvements across the board on the new medication regimen but remained severely fatigued with brain fog, palpitations, insomnia and anxiety.
A friend of mine forwarded me a recording of a lecture that Annie Hopper had given to the AAEM (American Association of Environment Medicine) in October 2013 regarding limbic system rehabilitation. As a scientist I was intrigued by the possibility that with certain exercises the limbic system could recover. I listened to the lecture and it became more obvious that many of the clinical signs I was experiencing, including all those grouped under the diagnosis of POTS, could be linked to a limbic system impairment. The same friend went on to start the six month Dynamic Neural Retraining System program and, after witnessing her success with it, I decided to take the plunge.
I opted for the DVD program and I began this in October 2015. To be honest, although I was convinced that I had a limbic system impairment, I was still very sceptical that what appeared to be a very simple program would help. Of course, the DNRS recovery program is actually a big commitment despite its simplicity and rewiring your brain takes much perseverance. Nothing ventured, nothing gained and, as there really was nothing to lose, I opted to participate fully. I wrote to friends and family and explained to them what I was doing and why. I guided them as to how they could support me in the process. I also joined the DNRS forum which was incredibly helpful as I no longer felt like I was on my own: there were others who had progressed in their training and were having great successes.
It was difficult at first to balance the needs of my TBD doctor (who wanted regular updates and daily symptom charts) with the prinicples of the DNRS. This is where I opted to seek support from Christine, one of the DNRS coaches whose family had recovered using DNRS. I think I spoke to her a couple of times over the initial six month period of training.
I was very fortunate in that the oppressing fatigue that I had been living with over the previous 3 years lifted very quickly. I couldn’t believe it and neither could my husband! This was such a huge change for me that it encouraged me to continue and I am so grateful that I saw such positive change so early on as some of the other symptoms were a little more persistent! In any event, I practised as directed for at least an hour a day, reinforced my attitude of gratitude, practised additionally when feeling challenged and learnt to recognise the pathways my brain had previously focused on and confronted them.
Looking back on my recovery process now is such a joy! Within three weeks of starting the DNRS program, I stood in front of fifty academics and presented a lecture about tick borne disease. No problems with dizziness or fatigue. Three months after starting DNRS I drove on my own for 4 hours and stayed with a friend whom I had not seen in four years due to my being essentially housebound. Five months later I was camping with my husband and attended a festival – no longer imprisoned by noise sensitivity and weakness. Eleven months after beginning the program I had started jogging, gone on a holiday with my friends and had work shadowed for a week to assess my capabilities. It is actually quite emotional to revisit these triumphs and I am hugely indebted to Hayley, my friend who brought the DNRS to my attention, and Annie Hopper who developed it in the first place.
My postural orthostatic tachycardia symptoms are almost all gone. I continue to work with the sleep disturbance and some residual effects of some of the tick borne diseases. I should note that after 12 months I stopped my regular hour a day DNRS practice but I am re-inspired by undertaking this review to get back into it to shift those last few TBD issues.
My days now compared to how they were when I started DNRS are very different. I walk, drive, food shop, do household chores and hobbies every day. I make plans to see friends and go places. I no longer have to worry that I’ll need somewhere to lie down to recover. I don’t plan around fatigue. Strong scents, noise and light cause me no problems.
Yes, DNRS takes commitment but the value of this program cannot be underestimated. Go for it!
Sarah is from Kent in the UK. She is a scientist who is fascinated by all things great and small. She is deeply grateful to all the people who have helped her over the last few years, but especially to her husband Nic.
2. Rewiring the Aftermath of Trauma (Patrick Ussher)
For me, POTS syndrome developed over quite some time, starting out insidiously before exploding in full force in February 2015. In that sense, my case was one of occasional traumatic triggers over a longer period of time, each leading to a lower tolerance to stress, finally culminating in a ‘perfect storm’ which tipped my limbic system into full crisis.
Since my teenage years, I was very driven, with a typical ‘type-A personality’. As such, I often overworked, excelling at university but the cost was not, in hindsight, worth it. This overwork tended to lead to minor health problems and I was often tired. I had also been quite anxious, off and on, since 2007 when at the age of 18, I had experienced a devastating emotional trauma. But all that time was fairly manageable for the most part and it seems fair to say that significant limbic system related impairment began for me after a serious car accident in 2011, which I was very lucky to survive but from which I developed Post-Traumatic Stress. After the car accident, life became much more difficult. In addition to flashbacks, nightmares and intense hyper vigilance during any car journey, I also experienced a degree of cognitive impairment. My memory became poor and sometimes I felt curiously ‘vacant’ and cold, as if I were not really present. Rather than ‘accept defeat’ (as it seemed to me then), I ploughed on, doing well in my work, or at least so it seemed from the outside. At this point, interestingly, I found that techniques like mindfulness which had previously helped me in coping with the stresses of life no longer had much of an effect. It was not powerful enough to deal, as I now understand it, with a traumatised limbic system.
From the time of the car accident, health problems related to limbic system impairment grew steadily. Suddenly, I could no longer put on weight no matter how much I ate. I often looked run down. I started to become tired easily and struggled to do a full day’s work. My body started to ache consistently and to feel tender. I started to have a sensitive stomach. Over this period, I practised CBT intensively, as I recognised that I was very hypervigilant following the car accident, and that this hypervigilance was only getting worse. To its credit, the CBT did help with coping and did reduce the distress I felt to some extent, but overall the trajectory continued in a negative direction. Friends and family had little idea of what was going on inside of me at this time as from the outside I did not appear to be struggling.
Towards the end of 2014, things suddenly took a turn for the worse. I became dizzy, and my limbs – especially my legs – often felt ‘heavy’, in a way that was worrying. I started to have allergic, (I now suspect) mast-cell reactions to certain foods, reactions which would leave me in bed, feeling overheated and as if my ‘body did not work’, for several hours at a time. In the background, I had started to notice that there was a light, if constant, release of adrenalin. It was also around this time that I became somewhat sensitive to chemicals, although as my sensitivity was mild by standards (at that point), I merely thought that manufacturers had started to make chemicals more powerful than usual.
The final ‘tipping’ point occurred in February 2015 with the news that my mother was going into palliative care. Although the rational part of my mind could accept this last situation, and was prepared to face it in the best possible way, it actually felt like another part of my brain – the primitive part – had exploded. The adrenalin release became extreme with waves of it washing over me every seven seconds. Interestingly, however, this did not feel like a panic attack. Rather, it felt like an intense physical explosion that was perpetually running itself ‘in the background’. My rational mind could see things quite clearly, and indeed I had a philosophical acceptance of the news and a determination to be at my mum’s side to make her last days as beautiful as possible, but some deep part of me had entered a crisis state and was stuck there. This, as it turns out, is a pretty accurate description of what was actually happening. Although I am not sure, I also feel that I had some kind of viral infection at this time, which probably also contributed to the ‘final storm’.
I returned to Dublin for the two months leading up to my mum’s death in April 2015. Those two months, although they contained blessed moments with her which I will always cherish, were nightmarish. The flight home had further exacerbated my health. My legs now felt like ‘jellied concrete’, heavy appendages that were part of a body that no longer felt my own. At times, I had blurry vision and was very sensitive to motion. Car journeys felt truly bizarre. I was often faint both sitting and standing. My sensitivities to smell, in particular perfumes and exhaust fumes, increased significantly. The reactions to food also worsened. I had rather distressing ‘hypnagogic jerks’ at night, sometimes fifty in quick succession, which prevented me from sleeping. But what I found most difficult was that I was not well enough to visit my mum as often as I desperately wanted to. One journey into the hospital to see her would knock me sideways for days to come.
In the days following her passing in early April, I developed a quiet determination that, somehow, I was going to get better. For by then I was fairly certain what the problem was: all the evidence was pointing to POTS syndrome. I had ordered a HR and BP monitor a few weeks after returning home, and had found that I consistently met the criterion of plus 30 beats per minute upon standing, with a standing heart-rate of at least 120 and often 130 or more. I read nearly every article on POTS that I could find. It is important to mention that despite my own certainty that I had POTS, I was never officially diagnosed as having the condition. I did have a tilt-table test in Dublin in mid-April but this did not actually test me for POTS syndrome but for whether or not I fainted upon standing (I asked the person performing the test if he knew how to test for POTS and he just looked at me blankly – he’d never heard of it). My GP felt it likely I had POTS however and had arranged for me to see Dublin’s one POTS consultant in June. That appointment would have led to a proper test but I postponed that appointment as I had already started to make strides in recovery using the DNRS such that it seemed unnecessary to become entangled in the medical system at that point.
I had become aware of the DNRS as a result of my frantic online research, initially through Lauren Dinkel’s website (wheelchairtorollerblades.com). I was highly sceptical of the DNRS. In fact, the thought once crossed my mind that it was all an elaborate hoax! I was more focussed at that point on following the Levine protocol and a healthy diet, and was unsure how a ‘mind-body’ program (as it seemed to me then) could possibly help me even though I had started to suspect the problems I had were brain related. More specifically, as I was already well versed in CBT and mindfulness, and as I was employing both intensively at that time, I did not think the DNRS would contain anything new that could really make a difference.
Furthermore, although I was determined to get better, part of me really could not see how it was possible to recover from the position I was in. But I thought I’d give it a go since I had nothing to lose and the online testimonials of ex-POTS patients who recovered following the DNRS were, on the face of it, extraordinary. These were people who had recovered from a much worse situation than I was in. So I ordered it.
I started the DNRS on May 11th,. I remember the result of that first morning’s practice very well. It was as if the doors of my senses had opened – everything became bright and vivid. During the session itself, I remember thinking ‘I was wrong, this program is different’. I felt excited as if I were discovering something very precious, although I was also afraid in case it might not work. I need not have worried. One week after starting the program, what could only be described as a miracle (as it seemed to me, at least!) happened: the constant release of adrenalin stopped. My nervous system had quietened down, after just seven days! This is important as, in the months previous, I had practised meditation intensively often for up to four hours a day. But meditation on its own had not been powerful enough to ‘switch off’ the adrenalin. I know now that this is because the DNRS speaks to the limbic system ‘in its own language’, whereas meditation aims more to observe what is occurring in the limbic system from a distance, albeit compassionately. The latter is a wonderful life skill, but it is arguably inappropriate for those suffering with severe limbic system impairment for whom the focus should instead be on changing the limbic system deliberately in positive directions.
At the same time as the adrenalin stopped, my legs started to feel lighter. On day 8, I went for a walk. Up until that point, I had really struggled with walking more than 10 minutes per day, but on that day I marvelled at my body as I walked up a small hill near where I lived at that time. Were these really my legs? The legs that had felt like heavy appendages up until only a week before? Something special was happening. I started wondering to myself: “If this is where I am on Day 8, where might I be on Day 180?” Hope had returned.
That hope was well placed. Although recovery, especially in the first two months, followed an up and down course, the overall trend was steadily upwards. After just three weeks of brain rewiring, I went on a much longer 45 minute walk up a considerable hill. I could not believe it! There was no one to share my joy with at the top of the hill, although there were some passing sheep, so I made a point of informing them of the significance of the moment. The constant pain in my feet and legs also disappeared after three weeks. Whereas before, I had found it painful for my feet even to touch the ground, one morning that pain just disappeared. The feeling that I was perpetually ‘coming down with the flu’ also went away at that time. I had a lot more energy. At the seven week mark, another extraordinary thing happened: my sensitivity to chemicals reduced dramatically. I went into the bathroom and noticed something, or rather I did not notice something. Whereas before I would have been ‘hit’ by a wave of chemical smells, suddenly I did not smell anything at all. I took the lids off all the bathroom products and started sniffing. Yes, some of them were still very pungent, but I had to take the lids off to smell them, whereas before that would have been unnecessary: I would have smelled them strongly just by being in the room.
It was after around three months of rewiring that, for all intents and purposes, most limbic system related impairment had cleared up. Apart from the occasional extra whiff of perfume (something which still happens today), my sense of smell was normal. There was no inappropriate release of adrenalin and my energy levels were fairly consistent. My digestion was back to normal. My standing heart rate scores were nearly always below 100 and were often in the 80s. My supine to standing heart rate would increase between 12 and 24 beats, and usually between 15-20 – all normal scores. I kept going though with my rewiring for the full six month period as I wanted to hardwire the changes in. I was taking no chances! I kept a quasi-monastic schedule in my brain rewiring: one hour at 8 AM and 45 minutes at both midday and 5 PM, and sometimes 20 minutes before bed. Looking back now, I’m humbled by the discipline I kept in doing this. Finally, I had found a good use for my type-A personality!
Fast forward one year and a half, and I remain without POTS. There have been two or three times over the last year when various difficult events led to a noticeable and fairly steady – if light - release of adrenalin, and occasionally to the return of the hypnagogic jerks. On those occasions, I returned to the DNRS exercises and both cleared up fairly quickly. Basically, the DNRS worked and the changes stuck. These days, I can be sure of having consistent energy for most of the day, unless I have been pushing myself too hard and as long as I have been maintaining a good diet. I like to go for long walks of around 12 kilometres fairly often, something which would have been inconceivable when I was unwell and a ten minute walk necessitated two hours ‘recovery time’ in bed.
Of course, life is life and it ain’t plain sailing. I still have quite a driven character, although this has lessened considerably in the last two years (and I’m really working on it! Its time is limited!). And I am still prone to anxiety, especially in social circumstances, something which I find frustrating. I also still have PTSD related symptoms, although these have softened significantly in some regards. Learning how to live well and healthily is an ongoing process. The DNRS does not turn you into a super human but rather into someone with a neurotypical limbic system (or ‘neurotypical enough’). I do have to live within limits, and if I exceed those, I know about it fairly quickly. That has always been the case however and most people have to live within limits – it’s only in the movies that people get away with a high-paced life. The main point is I have my life back, I don’t have POTS, and for that I will forever be grateful to Annie Hopper and the DNRS.
3. Rise Up (Allison Adams)
For me, I didn’t know my journey had begun until I was already in it. I thought I had a temporary bug. I thought I would wake up one day and it would be over. Little did I know, it was just the beginning. I was spiralling down and down and just when I thought I had hit rock bottom, things would get worse.
I have heard that you never know when your last good day is. At the time, it is just another good day. I was stuck in a rut of wondering if I would ever have that “good day” back again. Could I play another sport again? Would I be able to stand again with ease? Questions like these spiralled in my head as I replayed torturous events in my head over and over again.
I wasn’t even sure what was wrong with me. With such an array of symptoms, doctors didn’t know where to start with me. I received blanket diagnoses with no true cure and was passed from specialist to specialist. Everyone wanted to tell me it was “in my head” or that it would go away with time.
In my journey to find a diagnosis, I went to 25 different specialists in 2 different networks (not including blood tests, halter monitors, echocardiograms, EKGs, tilt tests, hearing tests, balance tests, CT scans, MRIs, and so many trips to the ER that I lost track). This all happened over a period of over 6 years! In January 2015, after much research, I brought the diagnosis of POTS to my doctor whom indeed confirmed this. However, determining the culprit did not mean I had found a cure.
By this point, I was 28 years old, married, and my husband and I had moved back in with my parents so that they could help care for me. Now that I had a diagnosis of POTS, I was sent to a new specialist, a neurologist. From there, we began experimenting to find the perfect recipe of medications that would help. I started various dosages of propranolol, midodrine, venlafaxine, and fludrocortisone. I was told to just “try and walk more”. We tried various techniques of raising the head of the bed to try and train my body to be upright again and prescription compression stockings. Nothing seemed to do the trick and some things even made my symptoms worse.
My life was rapidly getting narrower and narrower. I could barely stay standing for 15 seconds. I had to sit on the bathroom floor just to brush my teeth. I rarely had enough energy to get dressed in the morning let alone to leave my house. My doctor and I decided it was time that I got a wheelchair.
Adjusting to my new limitations was a double-edged sword. On the one hand, I felt I was doing the best with my circumstances and on the other it had felt like I had given up. I was a prisoner to my own body. I was using a shower chair, struggled to lift my hands above my head to wash my hair, and was using room temperature water followed by freezing water before I ended my shower due to incredible heat intolerance. Sometimes I didn’t leave my house for weeks at a time. When I did leave, it was for very minor short trips and I would need someone with me who could help with my wheelchair. I couldn’t lift anything - I couldn’t even hold my own purse. I remember one time being at the store, using the electric shopping cart and my body was so weak that I could barely push the button to move forward – I nearly passed out.
I was now also diagnosed with leaky gut and malnourishment. I could barely eat anything anymore. When I could eat, I was living off unseasoned chicken and white rice. I was reacting to almost every food. I tested allergic to tomatoes, tree nuts, cows milk, and 12 environmental allergies that I never had until adulthood. My doctor advised that I avoid artificial sugars, eggs, gluten, MSG, and GMO products on top of my other restrictions. My stool samples kept testing positive for malnourishment. I wasn’t holding any nutrients. I went from 126 lbs down to 101 lbs (nearly 20% of my body weight). My legs were basically skin and bone due to muscle loss from me not using them even to stand anymore. Every second of every day, I was living in misery.
I obviously could no longer hold a job. Being bedridden and homebound was spent laying around trying to think my way out of my illness, further strengthening the connections in my brain that had me stuck in this trauma loop. I couldn’t listen to music because the sounds would over-stimulate me and even change my heart rate. I couldn’t watch TV because the shows and commercials would cause the same reaction. At times, I could tolerate very slow content for short periods of time. However, the light sensitivity caused me to spend most of my days just sitting in the dark. Reading was nearly impossible as the words danced around the page and made me completely nauseous. I didn’t have energy to even carry a conversation on the phone. I even remember smiling being too much at times.
My husband and my mother were my in-home nurses. I couldn’t cook or even cut my own food. I was getting daily visual migraines. I couldn’t walk up a single step in the house or do even a minor incline. My fibromyalgia was causing severe chest and stomach pains throughout the day. I couldn’t drive. I couldn’t even sit in the passengers seat without having my legs up on the dashboard to prevent the blood from pooling in my legs. I constantly needed to be lying down. I had a lot of muscle shakes and tremors. The constant isolation overwhelmed me with anxiety and depression.
It seemed that every doctor I went to, we found more things wrong but none of the solutions were chipping away at the illness. I was diagnosed with POTS, fibromyalgia, chronic fatigue, sensitivity to light/noise, leaky gut, malnourishment, IBS, PTSD, asthma, food and environmental allergies, anaemia, hypoglycaemia, severe heat intolerance, my sinuses were completely blocked and inflamed, a cyst was found on my pituitary gland, I tested positive for Epstein Barr Virus, and my appendix even burst at the age of 26. It was easier for me to list what wasn’t wrong with me than what was. Even on beta-blockers, my resting heart rate was 60-80 BPM and upon standing up it would rise up as high as 215 BPM. I was now using multiple pill boxes to organize my 4 prescriptions and 14 supplements that were taken multiple times throughout the day. My next step was getting my reclining electric wheelchair.
The fear of my future and the fear of the unknown were overwhelming. I wasn’t ready to live the rest of my life like this. I felt like this was the end of the road. The day of my appointment to get fitted for my new wheelchair, I took a leap of faith. I decided to cancel the appointment and research all I could to find a better future for myself. That is when I came across Lauren Dinkel’s website “Wheelchair to Rollerblades.” I felt like I was reading my own story. I had never heard of anyone going through what I was let alone a recovery story. I was split with hope and skepticism.
Her story ended with a full recovery through the DNRS program. I sent a link of the program to my functional MD asking if she thought it was a good idea or if she thought it was a scam. It just seemed too good to be true to me. My doctor thought it was a great idea. I ordered the DVDs and I began the seminar December 14, 2015.
After the first day of the seminar, I already felt more energy. I felt like I was in control of my life again. I was learning to be a curious observer of my own habits so I would not fall into the same pathways that I did in the past. I only surrounded myself with positivity. I wouldn’t communicate the daily symptoms with anyone, not even myself. I wasn’t going to feed the limbic monster to put up a stronger fight against me. I kept a journal of my daily accomplishments and exercises. I continued to seek beauty in every aspect of my life and to continue looking at the future. The past was already written and there was no turning back.
I began working the program daily with incremental challenges that were in my training zone. I started off with the goal of standing and walking for 30 seconds and built up daily to 45 minutes. I also started with the challenge of climbing one step and built up to 2 flights up and down. I started doing exercises on the floor with 6 lbs and built up to 20 lbs. I reintroduced tomatoes (which I once tested allergic to) into my diet by starting with one grape tomato and building to a pasta dinner. I noticed things were getting better when I stopped noticing things anymore. I wasn’t thinking about how long I was standing or taking an inventory of my 24/7 symptoms because they weren’t there anymore.
Within 15 days of the program, I was no longer using my wheelchair. Within a few months, I threw out my shower chair. I was now leaving the house everyday. Cooking for myself and for my husband. Doing chores around the house I couldn’t do for years. Driving again. I was watching TV Shows and movies again. Not only was I listening to music again but I was singing along and dancing to it! My life had completely transformed. I felt like I was me again.
By July, I no longer had leaky gut or malnourishment. By the end of the year, I gained nearly 20 lbs back. Things were clearing up that I didn’t even know were possible. Arthritis from my broken finger had gone away, my sinuses were no longer clogged and inflamed, my chest and stomach pains disappeared, my migraines vanished, and I was in a better mood all of the time.
Even my dreams transformed! I was no longer dreaming I was disabled or restricted. My anxiety and depression improved greatly. I was no longer experiencing PTSD. I was affectively rewiring my own brain!
After analyzing my journey, my doctor and I came to the conclusion that the perfect storm that triggered the illness for me was salmonella poisoning December 23, 2008 that left me hospitalized. Before that trigger, I was completely healthy and very active. I graduated from the University of Michigan with a degree in physical education and a minor in health. I loved working out and playing sports.
Although I have made such huge strides in recovery, my story is not over yet. I still meet POTS criteria but I know if I can make it this far then I can make it all of the way. Not only have I made these improvements but a weight has been lifted off of my shoulders and my loved ones’ shoulders. I am no longer sick with stress of the unknown. I am no longer going to multiple specialists a week and coming home without answers.
Struggling in life is inevitable but defeat is a choice. The DNRS program takes a lot of dedication and hard work but it is completely worth it to reclaim your life. Rise up to the challenge and take back control of your life.
Allison Adams is 30 years old and lives in the suburbs of Detroit, Michigan. She has been married to her high school sweetheart for 6 years. They have 3 cats and 2 dogs. She graduated from the University of Michigan in 2008 with a degree in Physical Education and Health. She has been living with POTS since the age of 22. Her journey to recovery began when she discovered Lauren Dinkel’s website “Wheelchair to rollerblades” in late 2015. She started the DNRS DVDs in December 2015 and began her journey to retraining her brain, transforming her health, and reclaiming her life.