POTS Read online

  Annie Hopper’s lecture, which presented the results of the informal data collection study into the efficacy of the DNRS for treating MCI (Multiple Chemical Intolerance), at the American Academy of Environmental Medicine Conference in October 2013 can be viewed here: www.YouTube.com/watch?v=0_-nM2dHXMk.

  The DNRS website can be accessed here: http://retrainingthebrain.com

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

  We are now in a position to put forward an outline of what kind of potential protocol could treat POTS effectively and what kind of research trial would be needed to confirm the ideas put forward in this book, if they are indeed along the right lines. Before doing that, however, I will first consider additional factors that might aid the recovery of the POTS patient, i.e. secondary measures that are probably also helpful to implement. These mainly consider the role of exercise and diet. That done, I then outline a potential protocol for the POTS patient to recover, which presents, in practical terms, the actions necessary to recover from limbic system crisis and to heal NET deficiency. Having put forward this protocol, I then suggest what data a clinical trial using such a protocol would need to capture in order to see if this protocol, and the hypothesis underlying it, are indeed correct. Of course, my suggested ‘protocol’ is just that, a suggestion, and as with everything else in this book, is not set in stone but could be refined and adapted as needs be.

  The Role of Diet

  Whereas brain retraining is essential for rewiring the root cause, diet is essential for determining the speed and quality of the return of normal NET protein function, the most important secondary factor in recovery.

  Let us be clear, however, on two things. First, I note that for those with severe food sensitivities, it might not be possible to eat the amount or variation of food recommended immediately. Those for whom this is the case, should instead work on reintroducing foods one by one as their nervous system state normalises. Once their food sensitivities have considerably lessened, they can then consider incorporating the powerful principle which follows, namely of eating food that is very good for you in huge quantities. Even for those without major food sensitivities, it may take up to one or two months to build up your diet to the right amount of food and the right kind of food. Second, the NET protein will undoubtedly heal in any event as long as you eat a ‘generally good’ diet (it will probably heal up even if you just eat pizza and chips!). I say this so as to avoid the rise of any anxieties along the line of ‘Will I recover if I don’t follow the dietary recommendations?’ Please remember that the following recommendations are aimed at maximum healing efficiency and that is all.

  Now, onto those diet recommendations. Remember: the NET protein will be naturally replaced as part of your body’s ongoing ‘repair’ cycle, once (but only once) your limbic system stress response is normalised (otherwise NET will remain ‘swamped’ by adrenalin and its repair will be impossible). How can we aid this process? The answer is by literally ‘flooding’ your body with the right nutrients, vitamins and proteins and in the right amount for maximum rebuilding at a cellular level. There is one diet in particular which I believe to be the best possible kind of diet for those recovering from illnesses where recovery requires this process of ‘biological rebuilding’. It is called the Wahls Protocol diet.

  The Wahls Protocol Diet

  One of the most powerful examples of ‘diet as medicine’, the Wahls protocol was originally designed for multiple sclerosis patients. It was formulated by the medical researcher Terry Wahls M.D. who herself has that illness. (I note that, in discussing her diet protocol, I am summarising a freely-available TEDx talk Wahls gave in 2011, ‘Minding Your Mitochondria’.[57]) Some of the worst physical symptoms of MS are caused by the reduction, by about a third, of a substance called ‘myelin’ in the brain - a protective layer that covers that organ. Despite receiving excellent conventional treatment, Wahls became more and more disabled in the five years following diagnosis and so she was determined to explore other ways of ‘delaying the inevitable’. What she found in so doing however was something else entirely. Given her own background in medical science and research at University of Iowa Carver College of Medicine, she set about asking the following questions: Of what is myelin composed? What foods could potentially, if eaten in the right quantities, rebuild myelin back to its normal size? Her answer was:

  - 3 plates of fruit and vegetables every day

  - a high quality source of protein at every meal and weekly organ meats

  - a low carb, high fat diet along with no bread containing gluten

  We might, similarly, ask: of what is NET composed? As mentioned previously, it is, of course, composed of protein. Accordingly, eating high quality protein in considerable amounts is recommended to aid your body in the repair process. The addition of the three plates of fruit/vegetables is also important however as, for various biological reasons, protein is best absorbed by the body when it is consumed in conjunction with the numerous vitamins and minerals which vegetables and fruit provide. I note at this point that a very helpful resource for the healing power of food is Murray and Pizzorno’s Encyclopedia of Healing Foods.

  The key point about Wahl’s diet, in addition to the fact that she only ate food that is obviously good for you, are the quantities involved: three heaped plates of vegetables and fruit every day, for example, is no small task. But this was the definitive factor in leading Wahls to recovery. Indeed, she had already been eating a healthy diet in the five years previously. The only difference now was that she upped the amount she was eating, so that she was giving her body enough ‘raw matter’ to really rebuild. She stuffed herself with the good stuff so that her body could literally rebuild itself. Note, furthermore, that the diet does not necessarily involve supplements. Wahls found that, whilst supplements slowed her decline, it was only when she switched to getting the right amount of nutrients her body needed to rebuild her myelin levels from her food alone, that she got better. Your body wants the real McCoy, not pills.

  The result? After just three months on this diet, Dr. Wahls could suddenly walk again after five years in a wheelchair. It was as simple as that: one day, she got out of her chair and could walk with the help of her cane. Within six months, she no longer needed her cane and after two years, she went horse riding in the Canadian Rockies. Her myelin levels had returned to normal. She had physically rebuilt the myelin around her brain. She still has MS, but she can live a normal life again: walking, swimming, running and going wherever she likes. She bikes the five miles to work every day. She subsequently developed the Wahls protocol diet and is developing trials based on her methods, including one, on the effect of the Wahls protocol on fatigue in MS patients, with good results.[58]

  The actual scientific reasons for how Wahls, and others with MS, have been able to rebuild the myelin around their brains concern a kind of cell called the ‘mitochondrion’, a cell which we met earlier in relation to Chronic Fatigue Syndrome. Countless mitochondria are in your body, and their job is to transport energy around for all kinds of biological processes. If you eat the kind of diet Wahls recommends, these mitochondria become ‘supercharged’ to carry out their work. Once this happens, everything in your body rebuilds at a quicker biological rate than normal, and with far better quality. The body is remodelled on a cellular level. For our purposes, the more you feed your mitochondria, the more efficiently NET protein function will rebuild and, also, with much greater quality. However, unlike the MS patient, who must follow the Wahls protocol forever to maintain its results, the POTS patient, once NET function has returned to normal can afford to eat a ‘generally’ healthy diet, not worrying too much about quantities. Once NET has normalised, it has normalised. You may, of course, wish to keep up such a diet regardless: its health benefits will reach far beyond the NET protein, and will ensure excellent biological change on many levels. Most of your body, in fact, is replaced over a seven-year period. The quali
ty of that change depends largely on what you eat. By eating well, and changing your limbic system, you will be - in a way - ‘resetting your body’: no small feat!

  In my own recovery, I did not follow the Wahls protocol to the letter but rather took its general principle of eating more than I usually would. For around eight months, I:

  - ate a high-quality source of protein with all three meals

  - had two-three heaped plates of fruit and vegetables every day at a ratio of around 1:2 (I sometimes had a smoothie in addition as it was not always possible to reach the three-plate target through the main meals alone)

  - tried to have organ meats at least once a week (liver, kidneys)

  - did not have sugar, cakes, desserts save on very special occasions. I avoided alcohol completely.

  - I had home-made bread, rather than cutting out on bread completely

  By following these principles - or similar principles - for a sustained period of time, the POTS patient will efficiently and effectively be giving their body the tools it needs to rebuild NET function (and many other functions besides), allowing for a speedier recovery. Those interested in finding out more about the Wahls protocol diet should see the references at the end of this chapter. I note here that in making this recommendation I do not benefit in any way. I merely made use of the Wahls protocol myself as it seemed well-suited to aid me in the task of rebuilding my body. The general principle, however, is to eat copious amounts of food that is good for you.

  In sum, by normalising the limbic system through the DNRS system, the NET protein should be replaced as part of the body’s rest and repair cycle. This can only happen once the sympathetic and parasympathetic branches of the nervous system are in balance. Once the limbic system is rebalanced, NET healing is arguably guaranteed but the person recovering can aid its healing through eating an excellent diet in large quantities over a sustained period long enough to effect that required biological change.

  Essential Additional Points About Diet: You Must Avoid Caffeine and Sugar

  Both caffeine and sugar are absolutely out of bounds during recovery. There is a simple reason for this.

  To consider caffeine first. Caffeine leads to the automatic release of adrenalin. That’s right: if you drink caffeine, it forces your body to release adrenalin, and you have no say in the matter. Drinking caffeine is like drinking POTS! It also constricts blood vessels, including those to your brain, leading to a marked reduction in blood flow to the brain. This does not make your brain rewiring exercises any easier as it helps to be as clear-headed as possible during them.

  Similarly, sugar (the kind found in processed foods - chocolate, cakes, sweets etc) also (although in a rather more round about way) leads to the release of extra adrenalin. This kind of ‘empty calorie’ sugar causes insulin levels to fall. The body aims to rebalance this state of affairs by increasing adrenalin levels so as to draw out glucose from the liver. So: eating sugar is also the same thing as eating POTS!

  Put in this way, I hope that this is enough of a deterrent for you to avoid both caffeine and sugar during your period of recovery. Before starting the DNRS, indeed, it might be wise to reduce and eliminate your sugar and caffeine consumption over a period of a month or so (or go cold turkey on both, depending on what works). It does not help to have additional adrenalin floating around an already over-taxed system if it can be avoided.

  The Role of Exercise

  Whilst, according to the hypothesis put forward in this book, deconditioning is not the root cause of POTS, we do know that deconditioning plays a large role in the POTS patient’s condition. Cardiovascular reconditioning will, therefore, be an important part of recovery, and this will almost certainly apply to every POTS patient, even if they have only had the condition for a short period of time. Basically, cardiovascular reconditioning is an important ‘secondary’ aspect of recovery.

  The main question is when such a cardiovascular reconditioning programme should be commenced or, to put it another way: there is no point running before you can walk. Indeed, common sense would dictate that it would be wise not to commence any intensive cardiovascular programme until the NET protein has healed as, until it does heal, the heart has enough to deal with as a result of the blood vessel constriction problems. However, the person recovering should still build up sensible, moderate exercise in the early months of healing, as able. For example, if the patient has been very deconditioned, then a daily five minute walk in the first week, a ten minute walk in the second, fifteen in the third and so on, might be a good idea. Other light activities such as gardening are also recommended for this time. Overall, a sensible aim during the first six months of brain rewiring would be to reach the point where it is possible to do an hour’s daily walk without difficulty in addition to work around the house/garden and going shopping, etc. The increased circulation which these walks will bring will also aid in the recovery process. When the person recovering from POTS begins her walks, it is important not to worry about any minor ‘on edge’ symptoms: these are just the result of NET not quite having fully healed and the resulting spill over of adrenalin. Indeed, the exercise you are doing (as long as it is not overly intensive) is only helping along the recovery process of NET. This goes only for ‘minor’ symptoms though: listen to your body and if you need to rest, rest. It is also common if someone does an amount of exercise that is ‘too much’, especially at the beginning, that their heart rate will be elevated. If you notice your heart “thumping away” after exercise that day, know that this is not a sign of POTS returning but rather it is probably a sign that you should reduce the intensity of the exercise you are currently taking. It is helpful in such circumstances to remember the maxim: ‘Just because you cannot do it today does not mean you cannot do it someday’.

  In addition, after several months of brain rewiring and when the time is right, the person recovering could also start to introduce all-round body strength training, as is right for the individual, given age and other circumstances. Whether this involves lifting weights in the gym, yoga, pilates, or body-weight exercises, should be a decision reached between the person recovering, her consultant and a physical therapist who specialises in reconditioning after illness. The same point applies: start slowly and build up.

  As regards more intensive cardiovascular reconditioning and strength training, the one rule I would suggest is that the NET protein should have shown signs of being healed. The person will know this to have happened based on two things. First, there will be the subjective feeling that the sensations of ‘being on edge’ have gone. Secondly, there will be the objective measurements of the supine to standing differential. If this has returned to the normal 10-20 beats consistently, then NET has healed. Having said that, it is possible that NET may have healed fully even if the supine-standing differential remains in the 20+ beats per minute range. This is because deconditioning also plays a role in this differential and it is possible for NET to have healed but for the patient to be cardiovascularly unfit, such that their heart still increases more than 20 beats per minute upon standing (but less than 30). Prudence and sound judgement of each patient on a case-by-case basis should be employed.

  A Short Note on Breathing

  The following note is more conjectural but potentially important in the light of the impact of autonomic nervous system dysfunction on breathing. When our systems have become stressed, we tend to “overbreathe” and even to hyperventilate. If you suspect this to be the case for you, then it may be important to investigate ways to correct this, and to relearn correct breathing: nasal-only, soft, quiet, gentle and diaphragmatic (as can be observed in babies). Soft and gentle breathing, paradoxical though it may seem, leads to far grater oxygenation of the body than taking audible and big breaths, especially those through the mouth. The Buteyko breathing method may be helpful in this regard. I am only beginning to look into this myself, but Patrick McKeown has several helpful books on the method which may be of interest and which may act as another su
pportive secondary aspect of recovery.

  The Role of Medicine and Drugs in Recovery

  It is here especially that those medical researchers working on POTS could design a sensible plan for making use of drugs to reduce symptoms whilst also designing a sensible plan to withdraw those drugs when the time is right. I am not in a position to comment much on this but it would seem to me there could be a role for beta blockers in the first few months of brain rewiring to ‘take the edge’ off the extra adrenalin floating around and also to give the heart a slightly easier time. In addition, it would seem that the use of Flurinef - a synthetic replacement for aldosterone - should be monitored especially as, once the limbic system normalises, the body should start to produce aldosterone in the right amounts again (and, indeed, the whole renin-angiotensin-aldosterone network should normalise). I say that this should be monitored as the body’s own normalisation of the RAA axis would, in addition to taking Flurinef, potentially lead to too much aldosterone in the system. Since aldosterone is one of the body’s primary substances which retains salt, too much aldosterone could lead to too much salt retention and, by extension, high blood pressure. Similarly, once the RAA axis begins to normalise and the body begins to be able to hold onto salt naturally again, then taking extra salt (‘salt-loading’) may also be unwise and lead to too much salt in the blood. Therefore, it seems that a sensible withdrawal/tapering program should be devised for salt loading and Flurinef usage.

  Bringing it All Together: A Potential Template for a Patient Protocol

  These extra ‘secondary’ considerations in place, we now come to the crux of this chapter: a potential template for a protocol to treat POTS, which is divided into two six month phases, the first being rewiring the brain and the second being cardiovascular reconditioning. It may be that certain patients may need to spend more time on phase one, especially if they have other limbic system related conditions which are also severe. On the other hand, even those with the most severe limbic system conditions can recover in the six month period, and so it seems that the previous severity of the condition is not necessarily a good benchmark for determining the speed at which recovery takes place.