POTS Read online

  x) Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME)

  Many patients with POTS are also diagnosed with CFS/ME or, alternatively, are diagnosed as only having CFS/ME and learn much later that they in fact have also had POTS all along. Indeed, there are cases to be found on the internet of those who have been disabled for years, decades sometimes, believing they have CFS, only to find they in fact have POTS as well. Furthermore, there are many symptoms which both conditions share and, indeed, one study suggests that up to 30% of those with CFS/ME actually have POTS.[41] The symptoms of CFS can include: overwhelming fatigue and exhaustion which cannot be explained by any other medical reason; memory impairment and problems concentrating; sore throat, muscle pain and joint pain (without swelling); severe headaches; sleep which is not restorative; post-exertional malaise; gastrointestinal disturbances; visual disturbances (blurring, light sensitivity, eye pain); chills and night sweats; orthostatic intolerance; dizziness, fainting and problems with balance; brain fog; allergies and sensitivities to foods, odours, chemicals and medications, as well as anxiety, mood swings, irritability and panic attacks.[42] Given these symptoms - which no doubt will also be familiar to the person with POTS who is reading this book -, it is unsurprising that doctors unfamiliar with POTS would diagnose someone with these symptoms as having CFS. For all of these reasons, I believe it important to consider CFS in more detail.

  Like POTS, the cause of CFS has not yet been established definitively (hence, once more, the word ‘syndrome’), although, as with POTS, a virus often precedes it. As a result of this, it is often assumed - as in the case of POTS - that those with CFS are unfit following a period of bed rest after a viral illness, and need to pursue a reconditioning programme. I have argued that this deconditioning hypothesis is untrue as regards POTS patients. I wish now, albeit briefly, to do the same for CFS, as I believe that the limbic system in crisis is also the cause of this condition. This will be of interest to the POTS patient who has also been diagnosed with CFS, as you will see that targeting a change in the function of the root cause of both conditions - i.e. the brain - should arguably lead to the amelioration of both conditions.

  An Oxford University study by Myhill et al., showed that there are high levels of ‘mitochondrial’ dysfunction in patients with CFS.[43] Mitochondria are tiny organelles which power the transfer of energy throughout the human body. In the study, a patient’s subjective sense of fatigue mapped onto the objectively measurable mitochondrial dysfunction in the patient. What this study did not really address, however, is why these mitochondria should begin to malfunction in the first place but rather seemed to assume that they had malfunctioned ‘of their own accord’. But let us look at it this way: the proper functioning of mitochondria depends on the body’s energy producing functions to be working properly. For this to happen, the autonomic nervous system must be in balance. If it is in a crisis state, then the body is stuck in chronic ‘danger’ mode, and both digestion and the absorption of nutrients are compromised. In such a state, the body is not putting its efforts into creating energy. If this is the case, then mitochondria simply cannot be produced properly and so the levels of mitochondria become low.

  Limbic system crisis also explains why those with CFS are often sensitive to other viruses through a reduced immune system and also why, even when they do not have a virus, they often feel like they are perpetually ‘coming down with the flu’. For, when the limbic system is in a crisis state, it shuts down the immune system, and this has a wide range of effects. Bruce Lipton explains why:

  “Why would the adrenal system shut down the immune system? Imagine that you are in your tent on the African savannah suffering from a bacterial infection and experiencing a bad case of diarrhoea. You hear the gutty growl of a lion outside your tent. The brain must make a decision about which is the greater threat. It will do your body no good to conquer the bacteria if you let a lion maul you. So your body halts the fight against the infection in favor of mobilizing energy for flight to survive your close encounter with a lion. Therefore, a secondary consequence of engaging the HPA axis is that it interferes with out ability to fight disease.”[44]

  If the brain is stuck in ‘survival mode’, then the immune system loses out in favour of the predominant sympathetic nervous system activity. A weakened immune system, as a result of overactive sympathetic activity in the limbic system, explains the ‘flu-like’ sore throat and muscles pains those with CFS so often have, and this, I believe, is why there is a widespread belief that CFS comes about because ‘the virus is still within you’. Arguably, this is (usually, though not always) untrue: it only feels this way, because the immune system functions have been shut down and become dysfunctional leading to the perpetual presence of flu-like symptoms.

  The other CFS symptoms can also be explained by a brain in crisis: memory and concentration problems are clearly neurological issues as are headaches; gastrointestinal disturbances are the result of an imbalanced nervous system (cf. the consideration of IBS above); sensitivity to light, smell and increased sensitivity to sound can be explained by the fact the limbic system processes perception and that a limbic system ‘in crisis’ will startle more easily; chills and night sweats by the fact that the limbic system controls temperature regulation; problems with balance by the fact that the limbic system has a role to play in motor function; anxiety, mood swings, irritability and panic attacks are all obviously connected with the limbic system. In fact, some studies have indeed connected malfunctioning of the autonomic nervous system with CFS. I quote Okamoto, Raj and Biaggioni: ‘Newton et al. observed that 75% of patients with CFS exhibited symptoms suggesting autonomic dysfunction as measured by the Composite Autonomic Symptoms Scale (COMPASSS).’[45] In the UK, a doctor called Ashok Gupta, who himself had CFS, went on to put forward a limbic system hypothesis for its cause, as well as a recovery programme based on his insights, known as ‘the Gupta Program’. There have, in fact, been several pioneering researchers who have put forward hypotheses in the past decades along these lines, including Jay Goldstein all the way back in 1996 (Betrayal by the Brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Networks) and others, but, for whatever reason, these lines of research, and treatments based on them, have not been developed further by researchers so as to become mainstream.

  I believe that, in the same way POTS should really be termed ‘LSIND’ (Limbic System Induced NET Deficiency), a more accurate description of CFS would be ‘LSIMD’ (Limbic System Induced Mitochondrial Deficiency). My aim in mentioning this is to reassure the reader who has POTS, and who has also been diagnosed with CFS, that addressing the root cause should form part of an effective treatment for both conditions. In fact, common sense dictates that it is almost certain that the POTS patient - regardless of whether or not they are diagnosed as having CFS - does also have poor mitochondrial function, given that an adequate supply of mitochondria depends on the nervous system being in a healthy enough state to produce them.

  Fibromyalgia

  Fibromyalgia, which literally means ‘muscle pain’, is another additional condition those with POTS are often diagnosed with. It involves many of the same features of Chronic Fatigue Syndrome, to greater or lesser severity, but the primary difference is that the person with Fibromyalgia is in considerable pain. The link with the limbic system is, once again, clear. You will recall that the cingulate cortex is responsible for processing pain (as in the example given earlier of the pain you feel when you stub your toe). When the limbic system enters a crisis state, its ability to process pain also becomes maladaptive: everything starts to feel painful - your feet on the floor, the chair you sit on, everything. Medical researchers have in fact established this for quite some time: what is termed ‘Classic Fibromyalgia’ is in fact a problem rooted in the brain’s pain-processing centres.[46] Once more, therefore, if you are reading this and you have both POTS and Fibromyalgia, know that both arguably point to problems within
the limbic system.

  Overlapping Conditions: Conclusion

  My aim in mentioning these four conditions which often overlap with POTS is to point out how they are actually just different branches of the same tree: they all stem from limbic system malfunction and, if the root cause is corrected, they can all potentially be treated effectively. Whereas my aim in the first part of this chapter was to explain the ‘Whole Elephant’ of POTS, my aim in this second part, was to show that there are not ‘other elephants’ in the picture either: CFS, Fibromyalgia, IBS and MCS can all be conceived of - broadly speaking - as parts of the same overall problem, even though they must necessarily differ in which parts of the limbic system are primarily impacted and in what way.

  Why Have We Missed ‘The Whole Elephant’?

  I have now tried to explain the ‘whole POTS elephant’. I have attempted to argue why limbic system malfunction, as a result of the varied ways it can impact the health of the body, can explain the different ‘subsets’ of POTS as well as similar, overlapping conditions. But why has the limbic system link not yet been the focus of research?

  The modern medical method is unparalleled in the excellence of its research methodologies. Its great strengths include the ability to test and analyse specific parts of the body, and this is often critical. For example, there are millions of cancer survivors who owe their survival to the ability of a specific kind of drug to target a specific kind of cancer. However, at other times, this approach can lead to adopting too narrow a view of a condition so that its ‘bigger picture’ may become lost. This is, I believe, particularly true of POTS. The problem is this: it can be a mistake to think that the main reality of what is going on in a human body can be reduced to the actions of one specific part. The main reality of what is going on in a human body is in fact how a myriad of different parts relate to each other. The former is easily measurable. The latter is much harder to measure. In other words, research needs to be conducted in which what is specifically going on with a certain body part can be understood as a scientific fact but also in which the scientific fact of how that part relates to other parts of the body is also considered. To relate this to POTS in particular: yes, we know that NET deficiency is a factor but what other part of the body might be able to tell us why? Could there be a malfunction in another organ (i.e. the brain) that could explain NET protein deficiency as a ‘knock-on’ effect?

  In POTS, there are many different ‘parts’ of the body which been identified as malfunctioning. However, the scientific research progresses on the assumption that, some day, one of these malfunctioning parts will indicate ‘the’ cause, and that there will be a drug to correct that particular part. Of course, this research has advanced our understandings of POTS hugely (for, without it, we would never have known of NET deficiency in the first place). But a ‘bigger picture’ approach is also needed in which the possible reasons for why all of these particular parts are malfunctioning is considered. It is only when this bigger picture is taken into account that one can see the role of the brain in the condition as a whole.

  Key Points from Chapter Three

  In this chapter, we have seen how the ‘whole elephant’ of POTS can potentially be explained through reference to a limbic system in crisis: NET deficiency, deconditioning, low renin and aldosterone (and resulting low blood volume), mast cell activation problems, and (perhaps) small fiber neuropathy in the extremities. In addition, I have discussed how both viral antibodies, as well as collagen formation problems (in EDS and JHS) should probably not be considered as causal even though they can co-exist with POTS. Then, I discussed how overlapping conditions (such as IBS, MCS, CFS and Fibromyalgia) can all also potentially be explained by reference to limbic system dysfunction. With this in place, we then considered why it is that the root cause of POTS has been missed, as the result of focussing too much on the pathologies of individual parts of the body, and not also on the relationship between those parts.

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

  If the hypothesis I have put forward is correct then, logically speaking, the following two things need to happen in order for the patient to recover from the most salient aspects of POTS:

  the limbic system must cease to be engaged in a ‘traumatic loop’ and must return to normal, thereby leading to a normal ‘signal’ being sent to the nervous system via the HPA axis with the result that its functions too return to a healthy homeostasis

  the NET protein must heal and return to normal function, thereby leading to normal blood vessel constriction upon standing and resulting normalised heart rates.

  In this chapter, I aim to explore how both of these can happen. As for the first, there is ever increasing evidence, in the form of testimonials and case studies (several of which are on the book’s website, www.whatpotsreallyis.net) that the first of these can happen through the power of self-directed neuroplasticity, by which I mean specific exercises the patient can do herself to direct a change in brain function in the limbic system. In particular, I will discuss in this context, the development of the The Dynamic Neural Retraining System (DNRS), a six month intensive ‘limbic system rewiring’ programme, discussing the reasons for its development, its form and methodologies, its initial applications for Multiple Chemical Sensitivity, how these applications were also transferred to POTS, and why the program also potentially works for that condition. As for the second factor, the healing of the NET protein, I will present a ‘biological common sense’ argument that this will happen ‘naturally’ once the limbic system is restored to a non-crisis state. That is to say that the return of the nervous system to a healthy homeostasis will lead to the NET protein being ‘replaced’ - as it has to be - in the body’s natural ‘rest and digest’ repair cycle. At the end of the chapter, I shall also consider how successful limbic system rehabilitation should also address other aspects of the ‘whole POTS elephant’ identified in the last chapter.

  The Background to The Dynamic Neural Retraining System

  The Dynamic Neural Retraining System is an intensive six-month brain rewiring program, taught through either DVD or workshop format. It was founded by Annie Hopper, a Canadian who previously worked as a counsellor. Its key hypothesis is that the limbic system can, through trauma (broadly understood to include trauma as a result of physical injury, illnesses, chemical poisoning/exposure, and traumatic psychological events), change drastically and begin to malfunction. In chapter two, I outlined the physical effects on the limbic system which ‘trauma’ can have, including radically altered sensory perception (particularly of sound, light and smell) and an overactive HPA axis via which stress hormones (particularly adrenalin) are released continuously. The six-month intervention targets the limbic system with specific exercises which are aimed at taking the limbic system out of this crisis state thereby restoring normal function.

  The Story of Annie Hopper

  The DNRS was not originally created with POTS in mind. Its founder, Annie Hopper, had suffered, rather, from Multiple Chemical Sensitivity (MCS).[47] Let us now consider her own story in more detail, and in particular the events in her life that led her to research a cure for her own condition. Doing so will further elucidate the nature of POTS.

  Annie Hopper developed MCS over time initially as a result of her working environment in which there was poor ventilation, mould and a high level of VOCs (Volatile Organic Compounds) emanating from the furniture, carpets and paint. Over time, she found herself becoming sensitive to chemicals and perfumes. These would give her headaches. In addition, she started to have pains and aches throughout her body, which were later diagnosed as Fibromyalgia. After around a year of a slow but steady escalation in symptoms, despite seeking the help of both standard medical care and alternative practitioners, as well as batteries of tests including a (negative) CAT scan for a possible brain tumour, her condition deteriorated sharply. Hopper describes the effect of MCS on her at that point as follows:

  “I
literally felt like I was being poisoned by everything around me. I could no longer wear my usual clothes because I was repulsed by the chemicals in the detergent residue, which had morphed into some kind of putrid and toxic smell. Chemicals in scented products…produced symptoms of headache, nausea, rapid heart rate, possible convulsions, difficulty breathing, cognitive impairment and loss of voice. This was followed by complete exhaustion, muscle pain and twitching, which could last for a number of days after any exposure.”[48]

  At this point, Hopper attempted to do what most with MCS are forced to do: avoid all chemicals at all costs. The result of this, however, was that it became impossible for Hopper to continue her work as a counsellor, as even the slightest scent on one of her clients’ clothes would result in symptoms. Finally, Hopper’s symptoms worsened further still, and she developed electro-magnetic wave sensitivity (EMF sensitivity), a condition similar to MCS, but in which the sufferer’s limbic system has become so sensitive that it has started to ‘pick up’ electrical signals as well, and detect these as threatening. This forced Annie to leave her home and live on a houseboat for months, away from all chemicals and electricity. She was isolated, depressed and, in her own words, ‘rapidly losing hope’.[49] These feelings of hopelessness were compounded by the fact that, as is the case with POTS, the prevailing wisdom is that there is no cure for MCS. Environmental doctors and patients alike view the condition as a ‘toxic overload’ syndrome, i.e. that there are too many chemicals and toxins ‘inside you’, and that the treatment for this is detoxification and avoidance. Hopper, however, did not believe this to be the root cause. As she puts it: ‘The symptoms were so cognitive in nature that I just knew it has to be a neurological injury (brain injury) as opposed to a physical reaction like an allergy’.[50] This stands to reason. If a chemical is dangerous and overpowering to one person, but not to another, then it should be clear that, given that the chemical itself has not changed, that the brain of the former person has changed such that it perceives the chemical in a different way to that of the latter’s. It makes absolute sense that the primary part of the brain that would be affected in this way would be the limbic system as it is the part of the brain concerned with ascertaining, as we have seen earlier in the book, how ‘safe’ smells are. If the limbic system becomes impaired, its ability to process smell will likewise become impaired.