POTS Read online

  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 and see her video testimonial on her own inspiring website, from which this brief case study draws: http://wheelchairtorollerblades.com A video detailing her recovery can also be found on that website.

  Case Study Two: Frances

  Frances is a young Australian woman who had had POTS and MCS for 3 years and food allergies for 13 years. She developed POTS after contracting Lyme disease. Before taking the DNRS program, she was bedbound most of the time, could just about walk to the bathroom and back, and nearly all of her personal care was done by her parents. She compared this experience to being ‘like a toddler again’. She was unable to tolerate any light or sound on her right side and she was also unable to eat a varied diet. Her chemical sensitivity also made it very difficult for her to see her friends as she would react to the scents on their clothing. As Frances puts it herself: “I was in so much grief for what I had lost”.

  Frances ordered the DNRS DVD program having heard about Lauren Dinkel’s website, after which her sense of hope came back. As she started to practice the program, she also set small challenges, such as building up walking and practicing her brain retraining exercises around particular scents. After several months, she was walking ‘heaps’ and had taken up her ballroom dance classes again. After another period of several months, she felt she was 80% better but decided to attend the DNRS workshop program to help with the last stages of healing. For this, she flew, with her father, all the way from Australia to the US, something that would have been inconceivable before starting the DNRS program. Since then, she has improved yet further. She can now eat almost any food, including curries. Her smell sensitivity has ‘hugely improved’ and she can ‘actually see how people enjoy’ perfumes. Today, Frances is living a full life and is training to be a ballroom dance instructor. To see the video testimonial on which this brief case study is based, see: www.YouTube.com/watch?v=vJNuZY1u86Y&index=5&list=PLYJFpQmarJCCwElI3-6l0s2F3r8zCELEh (or look up on Youtube ‘DNRS Frances POTS’ - it should be the first search result).

  Case Study Three: Brittney

  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’. For the video on which this brief case study is based, see: www.YouTube.com/watch?v=57Y3_Ifq7VQ&list=PLYJFpQmarJCCwElI3-6l0s2F3r8zCELEh (or look up ‘DNRS Brittney POTS’ on Youtube - it should be the first search result).

  These three testimonials have all been featured on the DNRS website and Youtube channel. Additional testimonials which I have gathered for the purpose of this book can be found on the book’s website (www.whatpotsreallyis.net).

  A Summary of the Biological Process of Recovery from POTS Using the DNRS

  I now present a hypothesis as to what changes occur in the person with POTS who takes the DNRS program.

  As mentioned above, one must think of recovery from POTS as a two-fold process: the healing of the brain first and foremost and then the healing of the body (which can only occur as a result of the former) and, in particular, the healing of the NET protein. It is helpful at this point to remember that LSIND (Limbic System Induced NET Deficiency) is arguably a more accurate description than “POTS”, as it captures the two key elements which need to heal: the limbic system first and foremost and then the NET protein.

  The first important change which needs to take place, therefore, is that the hypothalamus in particular must cease to be in a crisis state and must cease to send alarm messages, in the form of adrenalin, down the HPA axis (hypothalamus-pituitary-adrenal gland axis), the most important pathology in POTS as identified in chapter two. Once this signal to release adrenalin all the time is stopped, then recovery is arguably assured: it is only a matter of time and practice to hardwire the changes into place over the remaining time left in the six months. Many will find that, with diligent practice at the beginning, the constant release of adrenalin will cease in a matter of days or weeks. Other changes which can happen quite quickly are reduced sensitivities to light, sound and smell, and improved digestion and energy.

  Once the HPA axis has started to normalise, the second key stage of recovery can now begin as all of the normal functions of the autonomic nervous system will resume: energy production, digestion, the proper functioning of the immune, endocrine and thyroid systems, and more besides. As this healing takes place, and it takes place slowly over months, the NET protein should also begin to heal as part of the body’s natural ‘repair’ cycle. Although it is not clear how long this will take, the NET protein will surely heal for, like nearly every other part of the body, it is constantly being replaced during the body’s ‘rest and repair’ cycle. Furthermore, the NET protein is situated in ‘soft muscle’ which, of all muscle kinds, is the kind of muscle which the body renews and repairs most quickly. The NET proteins you had when you were five years old are not the same as the ones you had when you were seven, ten, fourteen or sixteen. It is constantly being renewed. The precise rate of NET protein healing needs to be determined by specialists but I suspect, from considering recovery stories from POTS using DNRS that it could take, at the least, three months and, at most, eight months. Neither are particularly long periods of time when it comes to recovering from an illness of such severity. Furthermore, there is reason to think that the patient can make a significant impact on the speed with which the NET proteins heal through diet. Indeed, it is not called a ‘protein’ for no reason! NET is made up of the same amino acids you eat in your beef, chicken or lentils. As long as the person recovering eats good food in copious quantities, NET should heal efficiently and relatively quickly. I will provide further considerations on the role of diet in the next chapter.

  It is important to remember the fact that the process of NET healing will take several months. For this reason, although the patient should still feel hugely improved in the first months of brain rewiring, familiar symptoms may persist for several months albeit at lower levels
of severity. In particular, the person recovering may still feel ‘somewhat’ shaky, curiously ‘on edge’ and, frankly, as if there happens to be extra adrenalin floating around their system, which there is as a result of NET deficiency. For some time, the heart will still beat somewhat faster than it should upon standing up. However, one’s overall heart rates should become noticeably lower once the HPA axis normalises and the excess release of adrenalin ceases. By this I mean that, whereas before, someone might have had, say, a standing heart rate of 130 and a supine heart rate of 90, after the HPA axis normalises they should look forward to a standing heart rate regularly under 110, and often below 100, even if their supine heart rate is still 30 beats lower than that until NET heals. In addition, during the early stages of recovery symptoms may flare up every now and again, although these will not be as severe as before. It is imperative that these ‘residual symptoms’ are not misinterpreted as signs that the illness is returning: they are merely symptoms of the NET deficiency ‘aftermath’ of having had the limbic system stuck in a traumatic loop. It is also imperative that the patient continues rewiring her brain, as the brain must become as normal as possible, with any emotions, associations or memories concerning the traumatic loop becoming long forgotten. The job of the patient during this six-month period, therefore, is to keep their limbic system in good shape whilst the NET protein heals.

  How does one know when the NET protein has healed fully? This will be known to have happened once the ‘supine to standing’ heart rate differential involves an increase of 10-20 beats consistently. (It is recommended that the person recovering take these heart rate measurements at the end of each month, but not more often than that, as continuous attention on the heart is not wise during recovery.) At that point, the NET protein will be working normally again, along with proper blood vessel constriction upon standing.

  There are two other key things to point out at this stage. The first is that cardiovascular deconditioning will also be a factor in a higher supine-standing heart-rate differential. So it is conceivable that someone’s NET protein may have healed up but their heart rate still increases from supine to standing by, say, 20-25 beats. It may be that this is just because of cardiovascular unfitness and it should reduce in time with sustained and sensible exercise. Such scores should be interpreted on a case-by-case basis. There will also, indeed, be a ‘subjective’ sense that NET has healed when the body feels less ‘on edge’.

  The second point is that although the NET protein is normally replaced in the body’s rest and digest cycle, this cannot happen unless the limbic system crisis is stopped. This is because even though there is still some (albeit not particularly effective) ‘rest and digest’ functions ongoing in those with limbic system impairment, the NET protein cannot have a chance of healing until the waves of adrenalin reaching it are ‘switched off’.

  Why the DNRS is an Effective Treatment for the Other Parts of the ‘POTS Elephant’

  I consider now how the other symptoms and pathologies identified in chapter three should also potentially find an effective treatment in the form of the DNRS. Let us consider each other problem in turn:

  Deconditioning. The DNRS, in and of itself, will not heal the person of deconditioning but will put them in the position of being able to engage in exercise again, which brain dysfunction and NET deficiency currently render very difficult. Indeed, once the NET protein has healed up, the person should be in a position to start a proper exercise regimen again. This, in turn, will allow for cardiovascular reconditioning to boost heart size and blood volume.

  Renin-Angiotensin-Aldosterone Problems. Problems in the RAA network should resolve once the adrenal gland ceases to be overworked for, as we have seen, aldosterone is, in fact, secreted from the adrenal gland (in chapter three, I posited the idea that an overworked adrenal gland could no longer lead to sufficient aldosterone production). A healthy adrenal gland, in contrast, in time should produce normal amounts of aldosterone once more. This will have the knock on effect of allowing the body to hold onto sodium more easily (this being one of the functions of aldosterone) which will thereby address hypovolemia (low blood volume) naturally, given that salt is the primary substance that increases blood volume. The combination of this and cardiovascular reconditioning should lead to the complete return of normal blood volume. Furthermore, the fact that the RAA axis is itself ‘intertwined’ with the state of the limbic system, as we have seen in chapter three, should also indicate that a calm limbic system will lead to a calming of the RAA axis.

  Mast Cell Activation Problems. It is highly probable that problems with mast cell overactivation will also cease as, in the case of the POTS patient, the overactive limbic system has led to many ‘false’ - although physically very real - allergic (or “allergic-like”) responses as a result of a chronic sympathetic state in the nervous system. As we have seen in the last chapter, one theory for MCAS problems in POTS patients, put forward by Prof. Raj, is the over-release of norepinephrine. It stands to reason that once this is over-release ceases and the whole system returns to homeostasis, then the incidence of Mast Cell problems should also be eliminated.

  ‘Neuropathic’ POTS Subtype. My gut instinct is that the fact a sizeable minority of POTS patients have less sympathetic activation in the feet and lower limbs may be because those patients are the most deconditioned and therefore are those who are rarely upright (if at all). This has led to an element of denervation in the lower limbs due to a lack of circulation. However, it stands to reason that the nerves in the extremities of these POTS patients, once the root cause has been addressed and the patients become more mobile, will also heal, although this may take some time. I note though that this is conjecture on my part as I am unsure of the exact possible connection between limbic system impairment and small fiber neuropathy in the extremities.

  Irritable Bowel Syndrome. Once the autonomic nervous system, which starts in the limbic system, has returned to normal function, the body will then be in a position to resume normal digestion with improved blood flow to the internal organs during parasympathetic nervous system activation or the ‘rest and digest’ phase of the autonomic nervous system, which is severely impaired whilst the limbic system is in crisis. For some with severe food sensitivities, however, this process will take months and involve, in some cases, the careful reintroduction of foods.

  Chronic Fatigue Syndrome. One of the central problems in CFS is mitochondrial dysfunction (mitochondria being the organelles which are responsible for energy supply)which is brought about by the inability of a nervous system ‘stuck’ in survival mode to produce adequate levels of mitochondria. It stands to reason that returning the nervous system to normal will allow for it produce energy normally once again and, therefore, for the number of mitochondria to increase.

  Fibromyalgia. The principal problem in fibromyalgia is over-activation of the limbic system’s pain processing centres leading to widespread perception of pain throughout the body. Once the limbic system ceases to be in a crisis state, however, its pain centres’ overactivation should also cease, leading to normal perception of pain.

  In this way, not only should the HPA axis be treated effectively, but so too should the other ‘subtypes’ of POTS be treated effectively as well as other ‘overlapping’ limbic system conditions, either directly or indirectly as a result of brain rewiring.

  Key Points of Chapter Four

  The Dynamic Neural Retraining System, originally developed by Annie Hopper to treat another limbic system condition, Multiple Chemical Sensitivity, has also been shown - at an anecdotal level - to be effective for POTS. This indicates a similar neurological cause, although there are undoubtedly pertinent differences between MCS and POTS. The DNRS program utilises techniques which ‘speak in the language’ of the limbic system and which, with dedication and repetition, can lead the limbic system out of a crisis state, no matter what the initial cause of limbic system dysfunction was. The program works thanks to the science of neuroplasticity
and the inherently malleable (changeable) nature of the human brain. Although the DNRS employs psychological techniques adapted for its limbic system rehabilitation purpose, the DNRS is not a ‘psychological’ intervention but an intervention to change the physical structure of the limbic system through focussed and intensive practice of techniques to ‘trick’ the limbic system out of its crisis state.

  The DNRS addresses the root cause in POTS, i.e. limbic system dysfunction and, in doing so, leads to the normalisation of the autonomic nervous system, which itself starts in the limbic system. This, in turn, allows for the body’s normal repair mechanisms to resume which, over time, should lead to the natural replacement of the deficient NET proteins, thereby leading to correct blood vessel constriction upon standing. Once this occurs the person is fully recovered from POTS/LSIND. The DNRS should also treat effectively other related conditions and/or so-called ‘subsets’ of POTS including problems in the Renin-Angiotensin-Aldosterone network (and resulting hypovolemia), Mast Cell Activation problems, Irritable Bowel Syndrome, Chronic Fatigue Syndrome and Fibromyalgia, in addition to paving the way for recovery from deconditioning.

  Further Reading & Viewing:

  Two excellent books, although not mentioned in this chapter, on the science of neuroplasticity in general are:

  - Doidge, N., The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, Penguin, 2007.

  - Doidge, N., The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, Penguin, 2016.