POTS Page 11

  Phase One: Rewiring the Brain

  - Months 1-6: Brain rewiring for at least one hour per day with graded exercise (cardiovascular and strength training) as able and cutting out all foods which will not aid recovery. Once food sensitivities are no longer an issue, aim for three plates of fruits and vegetables per day and a high quality source of protein with every meal and continue this for six months.

  The key aims of this period are two. The overall aim is to have the limbic system operating in a new non-crisis mode and to keep it there. ‘Keeping it there’ is important, as this change needs to become permanent. The person recovering should not stop once they start to feel much better but continue their rewiring for the full six month period or as long as is necessary.

  But the most paramount aim of all concerns the first month and that is to ‘switch off’ the over-supply of adrenalin and the feeling that the nervous system is constantly ‘firing off’. For once the adrenalin over-supply is turned off, the recovery process is on firm ground. For this reason, I recommend the patient consider two hours of brain rewiring per day for the first two months or so. The reason for this is that this adrenalin ‘switch off’ can, in fact, happen really quickly, even within a matter of days or weeks. Once this happens, it is important to solidify this change. Two hours is just a recommendation however, and one hour a day should still guarantee recovery. In any event, once the adrenalin supply ceases, the NET protein will no longer be being overwhelmed by adrenalin and will be in a position to start being repaired naturally by the body. The person recovering will feel so much better once this ‘oversupply’ of adrenalin ceases. Their blood stream will have less adrenalin in it, they will feel less on edge, and they will have more energy. They will still feel somewhat ‘shaky’, as the NET protein is still deficient, but the actual continuous supply of norepinephrine will have ceased, leading to much less adrenalin ‘floating around’ overall.

  Phase Two: Becoming Strong

  - Months 7-12: Assuming normalisation of limbic system and evidence of NET healing, brain rewiring now becomes optional, but many may wish to continue albeit at a slower rate (say 15-30 minutes a day). The primary focus now is on a thorough - yet sensible - cardiovascular exercise programme designed by an expert, along with more advanced muscle strengthening. Once a full six months of the ‘copious good food’ diet has passed, the recovered person can instead switch to eating a ‘generally good’ diet.

  The aim of this period is to regain full cardiovascular conditioning, thereby treating the secondary aspects of deconditioning, and to bring about continued positive biological changes in the body through diet. The DNRS can be employed as needed/as desired by the individual. Many find that, regardless of recovering from limbic system conditions, the program is helpful for everyday life.

  What Would a Research Study Need to Show in Order to Prove the Hypothesis Put Forward in this Book?

  A research study which expanded upon the hypothesis put forward in this book, refined it, tested it, and created a definite treatment plan based on it, would undoubtedly be a considerable undertaking, both in terms of financial resources and time. The potential rewards, however, are significant for the millions of those worldwide who suffer with POTS. Furthermore, although it would be a significant undertaking, the actual measurements needed to be taken during such a study in order to prove or disprove this hypothesis would be fairly straightforward.

  In particular, the following tests would need to be made, both at baseline and six months later:

  A tilt-table test

  NET protein function test

  Levels of norepinephrine/adrenalin in the blood stream in both supine and standing positions

  Renin-Angiotensin-Aldosterone Function Test

  Levels of Electrolytes, including sodium

  Tests for Mast Cell activation problems

  Quality of Life Questionnaire

  A potential study would require a sizeable number of patients so as to get a sense of the DNRS success rate for POTS. Ideally, the various ‘subtypes’ within POTS should all be represented so as to ascertain whether or not limbic system impairment may nevertheless be the root cause no matter what ‘subtype’ one might have. The study would require those in the field of limbic system dysfunction rehabilitation at the DNRS, led by Annie Hopper, to work with expert consultants in the field of dysautonomia. The start of the six month trial could involve an intensive, POTS oriented workshop, led by Hopper and POTS consultants working together, teaching the DNRS methods, as well as other experts teaching the importance of diet and graded exercise. The following six months would also need to make use of an online support forum for those in the study, both to support each other and to ask questions of DNRS coaches as well as POTS consultants. Regular Skype calls for each patient with a DNRS coach, with a specialist in graded exercise and with a POTS consultant would also be important. Finally, those recovering should keep a log of the number of hours spent rewiring their brains daily, exercise taken and foods consumed, so that the results of their specific efforts could be mapped onto the objective results at the end of the six month period.

  If, at the six month mark, the tilt table test, NET protein function, levels of norepinephrine in the blood stream, aldosterone and sodium levels are all normal, and if there is an absence of mast cell problems, then it will be clear that limbic system impairment is the cause of POTS and that limbic system rehabilitation is a very effective form of treatment. If not, then the search continues!

  Conclusion: Over to You, Researchers!

  My part in attempting to unravel POTS has now come to an end. I have presented what I believe to be the only logical explanation for the condition. I believe that limbic system dysfunction can explain most of the consistent findings medical researchers have found to exist in POTS patients and in particular the most important one of all for blood vessel dysfunction in POTS, namely NET deficiency. But it can also potentially explain low blood volume as a result of low aldosterone levels as well as mast cell activation problems, in addition to explaining why POTS patients are often unable to engage in exercise without great difficulty. Furthermore, the fact that a sizeable number have recovered from POTS by rewiring their brains, including from very severe POTS, indicates that brain retraining must hold the answer to treating the condition effectively. The testimonials on the book’s website (www.whatpotsreallyis.net) provide additional anecdotal evidence for this claim.

  The biggest obstacle to the hypothesis that I am putting forward may be the understandable fear that it is suggesting the cause is psychosomatic. At numerous points in the book, I have tried to counter this idea strongly, but I’ll repeat the argument one last time: The limbic system is primitive, reacts in automatic ways and is very vulnerable to various kinds of trauma and it is never the fault of the individual concerned when they suffer a limbic system impairment. Indeed, how could it be their fault if a severe viral illness leads to the limbic system impairment? It is essential to remember that the constant release of adrenalin that the POTS patient feels is not a sign that they suffer from a psychological problem, but rather that they are suffering from the after-effects of a ‘traumatic assault’ (broadly understood) on their limbic system of an immense magnitude. The limbic system may be implicated in both anxiety disorders and POTS but this is not the case for the same reasons. There is more than one way for a limbic system to enter a crisis state and this point cannot be forgotten. Of course, it is possible for psychological conditions to co-exist with POTS, just as they can with any illness, and psychological problems - including depression and anxiety - may understandably develop as a result of having such a debilitating condition. But these should be seen for what they are: secondary problems.

  Another obstacle may be the idea of using a ‘mind-body’ program to treat the condition. Researchers may worry that they are trying to cure people via a ‘placebo’ effect. Whilst understandable, I believe that this is also a misguided concern. This is not the same kind of scenario as when s
omeone attempts to use a mind-body program to heal from an illness rooted only in the body itself. Rather, this is a case of people using a mind-body program to treat the mind itself, the brain itself, a very delicate organ that had been pushed into a state of crisis following a devastating event, through no fault of its own and through no fault of the individual concerned. This is not a ‘placebo’ scenario: instead, it is a targeted intervention aimed at a part of the brain itself that is crying out for help.

  In addition, researchers may also find the DNRS exercises to be too simple and may dismiss them out of hand for this reason. To this I respond: they are simple for a reason. The limbic system cares about simple things, and so to lift it out of a state of trauma it needs to be treated on its terms. The limbic system does not care about the nuances of complex theories about NET protein deficiency or low aldosterone levels: indeed, it does not give a ‘flying monkeys’ about any such things! All it wants to know is that life is safe again. The DNRS exercises achieve this in very clever ways that have been very much adapted to what an impaired limbic system needs.

  Finally, if there is still hesitancy amongst medical researchers regarding testing the efficacy of a mind-body program as a treatment for POTS, I would simply ask this: if it is true that the root cause of the condition is limbic system impairment (and it risks too much to dismiss this idea), then what other possible way would there be to treat it?

  Although I am happy to raise awareness of the possibility that POTS is caused by limbic system impairment, I am not in a position - nor do I have the pre-requisite skills - to do more than that. The only people placed to test this particular hypothesis are specialist researchers and those at DNRS. If there is a researcher out there who reads this book and who wishes to expand on this hypothesis further, refine it and test it, in conjunction with Annie Hopper at the DNRS, then I invite them to do so, provided acknowledgement of this book is given. Also, I would be very happy to discuss the ideas put forward in this book with any medical researcher potentially interested in exploring them, if that might be helpful.

  And if someone is reading this who themselves has POTS, whether or not a research study has yet taken place, you may wish to consider whether the hypothesis put forward in this book convinces you and, if so, take the step of purchasing the DNRS DVDs. If brain retraining does work for you - as I sincerely hope it will - then your story too will add to the mounting evidence that POTS may not need to be a ‘syndrome’ anymore.

  One day, I hope it will be classified for what it is, namely a neurological problem, probably better described as Limbic System Induced NET Deficiency, along with the advice given to all those who suffer from it that there is a concrete and effective form of treatment.

  Key Points of Chapter Five

  In this chapter, I put forward a potential template for recovery from POTS, a template which is divided into two phases - rewiring the brain for six months, alongside a healing diet and building up basic cardiovascular fitness, and a second phase with optional brain retraining, alongside a healing diet and more intensive cardiovascular reconditioning. The role of diet and exercise as important secondary factors in recovery were also considered and the various suggested tests which specialists would need to undertake to test the hypothesis put forward in this book were presented.

  Further Reading & Viewing

  For more on the Wahls Protocol Diet, see:

  - ‘Minding Your Mitochondria’, TEDx talk on YouTube: www.YouTube.com/watch?v=KLjgBLwH3Wc

  - Wahls, T., The Wahls Protocol: A Radical New Way to Treat All Chronic Conditions Using Paleo Principles, Avery, 2014.

  For the power of food to heal the body:

  Murray, M., Pizzorno, J., The Encyclopedia of Healing Foods, Atria Books, 2005.

  On the science of exercise:

  Reynolds, G., The First 20 Minutes: Surprising Science Reveals How We Can Exercise Better, Train Smarter, Live Longer, Plume, 2013.

  Addendum: General Points About Recovery and the DNRS Program

  Scepticism: There are few who start the DNRS program who are not highly sceptical that it will work. This is largely because those with limbic system conditions have exhausted many other treatment options, have often been unwell for a long time, and are therefore understandably hesitant about believing that recovery is possible. The scepticism may be compounded by the fact that the DNRS exercises might seem ‘too simple’. In response to the former, the point to bear in mind is that the brain is a highly neuroplastic organ and, if it is targeted in the right way, those new changes can ‘come online’ really quickly. Nearly all who recover using the DNRS would describe the changes it brings as being ‘miraculous’. But they are not in fact miraculous, but rather an indication of how highly changeable our brains are (with a little dedication, that is). Indeed, the brain often changes quickly enough to enter into a state of limbic system impairment following a trauma. That is a maladaptive neuroplastic response. But with the right tools a healthy neuroplastic response can likewise be elicited surprisingly quickly. In response to the second point, the DNRS exercises are indeed simple (although not simplistic), but they are also aimed at a part of the brain which has a simple and primitive view of the world. Any exercise which attempts to ‘rewire the limbic system’ needs accordingly to speak in its ‘language’.

  My POTS came about as a result of an illness: is a ‘psychological’ treatment really going to help? In response to such an objection, there are several points to be made. The first is that the DNRS may employ techniques otherwise used in psychological settings, but it does so in a way that specifically speaks to the limbic system and at a level of intensity which is able to effect a limbic system change. Each time the practice is employed, millions of the ‘right neurons’ fire in the limbic system, changing its structure. In the same way that a stroke patient doing targeted exercises can rewire his brain to recover movement, so too can someone with the right exercises target limbic system function. Secondly, the brain may have entered a crisis state as a result of the body-mind connection, i.e. distress signals the brain received during the illness which ‘tipped’ it into an impairment, but it is the mind-body connection which can, with dedicated practice, lift that individual’s limbic system out of a traumatic state. You did not contract POTS from thinking the ‘wrong kinds of thoughts’ - that would be ludicrous - but the right kind of thought with enough repetition and intensity can heal the limbic system.

  Indeed, it should be emphasised that the DNRS never suggests that a patient has developed their condition through ‘thinking negative thoughts’, or other similar ridiculous claims. The limbic system conditions discussed in this book are never psychological in origin, but very physical conditions. As Hopper writes:

  “Limbic System Dysfunction is located in the brain but the related conditions are far from being ‘psychological’ issues. They are trauma-induced brain impairments that affect many systems of the body. These conditions are physical in nature, they are real, they are painful, they are life altering, and they can be life threatening. Let me repeat: You are not alone, you are not crazy, and it’s not your fault.”[59]

  In other words, the claim is that the brain of the person with limbic system impairment has entered a traumatic state through no fault of their own. The DNRS, however, offers tools which speak in the language of the limbic system to lift it out of a crisis state no matter how it entered into that state in the first place. No matter what the cause, the DNRS practices are aimed at ‘tricking’ the patient’s limbic system out of a crisis state.

  The Recovery Process: It is important not to read signs of relapse into any minor symptoms during the recovery process. Rather, recovery will initially proceed on a ‘two steps forward, one step back / one step forward, two steps back’ basis. This is natural to recovering from any condition and POTS is no different. The person recovering should be kind to herself during any setbacks, commit to the brain retraining, and understand these to be normal parts of the process. It is also helpful to und
erstand that NET deficiency will continue for several months, thereby resulting in a slightly unusual ‘on edge’ feeling. You may feel ‘odd’ or ‘peculiar’ at these times. These sensations will reduce over time. Similarly, on rare occasions, minor chemical sensitivity or sensitivity to other stimuli may return. These incidents should also reduce with time and practice. Finally, mitochondrial dysfunction will also continue for several months, and so the person should pace herself carefully, so as to avoid ‘crashing’. There will come a point where the ‘ebb and flow’ of recovery essentially ceases, and there is only an uphill curve.

  Knowing that it is Impossible to Stick to the ‘Ideal’ All the Time: The above template for recovery is the ‘ideal’ template. No one will be able to stick to it all of the time, as human beings are not automated ‘bots’. We all fall down and have to pick ourselves back up again. The thing to remember is that if you aim at the ideal but only manage to stick to the above template around 70% of the time overall, you should still make a flourishing recovery. Having said that, do cultivate an attitude of discipline. It may be helpful to have specific times established in advance when you will drop whatever else you are doing and perform the DNRS exercises. In my recovery, I kept a quasi-monastic schedule: an hour at 8 AM, 45 minutes at midday, 45 minutes at 5 PM and 20 minutes before bed. It really helped me to establish this routine.

  Use of Technology During Recovery: Having a clear mind is important during recovery, as the exercises require considerable cognitive involvement. The constant use of screens and pinging of emails are not conducive to this. I found my DNRS practice was much improved on those days when I limited myself to one period of an hour online per day, and was even better on those days when I did not use the internet at all. This is a highly subjective piece of advice but others might find it helpful to follow. Limiting technology during recovery time is also helpful as it instils a sense of simplicity, which is additionally conducive to recovery.