Why we’re asking about PoTS in this month’s website survey | 3 October 2016

PoTS (Postural Orthostatic Tachycardia Syndrome) is a condition that is caused by a dysfunction of what is called the autonomic nervous system – a part of the nervous system that helps to control pulse rate, blood vessel size and blood flow to crucial parts of the body, including the brain.

So it can cause symptoms such as palpitations (awareness of the heart beating), feeling lightheaded, dizziness, pre-syncope (almost fainting) or syncope (blackouts), headaches and brain fog/cognitive dysfunction.

PoTS can exist on its own or form part of other conditions – ME/CFS and hypermobility syndromes for example – that also involve dysfunction of the autonomic nervous system.

We know that a significant minority of people with ME/CFS have PoTS as part of their ME/CFS. You will find these especially in younger age groups and at the more severe end of the spectrum.

But the condition often remains unrecognised by doctors because there is a serious lack of medical education about both diagnosis and management of PoTS. Consequently, it is quite frequently misdiagnosed as anxiety or panic attacks.

There was an excellent workshop on PoTS at the UK CFS/ME Research Collaborative conference last week. This was led by Professor Julia Newton (a leading UK expert on PoTS) and representatives from PoTS UK.

Following on from this, I will be preparing a new MEA Management File on PoTS and ME/CFS for the November issue of our ME Essential membership magazine.


MORE INFORMATION ON POTS – TAKEN FROM THE MEA’S PURPLE BOOKLET 2016 EDITION


PoTS sometimes forms part of autonomic nerve dysfunction in ME/CFS.

Ita is defined as symptoms of orthostatic intolerance associated with an increase of heart rate from supine to upright position of > 30 beats per minute (or 40 beats per minute in the 12-19 year age group) or with a heart rate of > 120 beats per minute on standing, can occur in ME/CFS (Hoad et al 2008; Kavi et al 2016).

In the recent British Journal of Cardiology review of patients with PoTS and their experience of healthcare in the UK, Kavi et al (2016) found that 81% of respondents were between the ages of 18 and 49 years and 92% were female. The most common symptoms at presentation were fatigue (91%), light-headedness, dizziness or presyncope (90%) and palpitations (86%). Syncope or blackouts were experienced by 58%. Other commonly presenting symptoms (in over 40%) included difficulty thinking (often described as brain fog), physical weakness, visual disturbances, breathlessness, vertigo, shakiness, chest pain, sweating, bloating, symptoms of anxiety, poor sleep, daily headache, acrocyanosis (purple-blue discolouration of hands and lower limbs), tingling in peripheries, nausea, abdominal pain, heat and exercise intolerance and ‘coat hanger’ pain (thought to be due to ischaemia of neck and shoulder muscles).

Clinical evaluation should therefore include a response to standing. Research aimed at characterising ME/CFS patients with or without PoTS found that those with PoTS were younger, less fatigued, less depressed and had reduced daytime somnolence (Lewis et al 2013a). They also had greater orthostatic intolerance and autonomic dysfunction. Those with PoTS may require further investigation and consideration for therapy to control heart rate (Lewis et al 2013a).

Further evidence relating to the important subgroup of ME/CFS patients who also have PoTS comes from Nijs and Ickmans (2013).
For a review of PoTS, see Benarroch (2012) and Kavi et al (2016).

NB: In patients presenting with chronic fatigue and/or orthostatic intolerance, low ferritin levels and hypovitaminosis D may be present, especially in those with postural tachycardia (Antiel et al 2011).

Dr Charles Shepherd
Hon Medical Adviser
The ME Association

3 thoughts on “Why we’re asking about PoTS in this month’s website survey | 3 October 2016”

  1. Been through this myself. GP dignosed panic disorder, general anxiety disorder, depression, GORD/GERD (acid reflux disease) and put me on Citalopram SSRI’s and Omeprazole and booked me in for counseling. Started completely out of the blue and I had never had anything like it before. No tests for POTS. Camera down my throat to look for cancer and hiatus hernia but both negative. Got rushed into hospital by ambulance Christmas Eve 2009 as I really felt I was going to die. The paramedics tried 3 ECG machines and none could read my heart rate as it was off the scale and so erratic.

    Eventually had the first Counseling session and the counselor said at the end that she didn’t know why I was there. She didn’t feel that I was depressed, anxious nor having panic attacks but clearly something was wrong with my health and it wasn’t mental health. She said she didn’t feel she could help me other than coping with living with my health issues and that she felt that what I needed was proper specilist medical investigation from cardiologists, neurologists etc.

    Back to the GP and months of these problems later, he decides he wants me to try beta blockers, one every two hours. I already had multiple serious allergic reactions I had developed to most pain meds, gaviscon liquid and other things I had taken on occasion for years before all my (what I now know to be ME) health issues began. Due to these reactions I took just a quarter of one of the beta blockers to test the waters… I was lucky I had the sense to do that. My heart almost stopped, it was barely beating, maybe one beat every ten seconds, I was dizzy, could barely focus my eyes and ended up in the back of an ambulance and rushed into hospital again. When my system was stabilised the next day they said I was lucky I hadn’t taken more than I did as I may not have lived to tell the tale. Needless to say my GP apologised and laughed saying “You don’t like them then”.

    After about 15 months I came off the SSRI’s and Omeprazole as they made no difference anyway. My symptoms calmed down to what they were at their worst but I still live with numerous symptoms today.

    My GP retired as he was at that age and I have had no further tests or referrals about these symptoms. Everything is just put down as “another ME symptom” and I have very little (if any) contact with any Doctor now. I only take ibuprofen if I can’t tolerate my pain level, just as a healthy person would for a headache I suppose, and because I am allergic to all the other NSAIDS. I don’t take any other medication and haven’t since 2011. I simply live with it, as many of us do.

    I first read about POTS and Orthostatic Intolerance over on the late great Jodie Bassett’s HFME website and it was then that I realised what I had going on. Mentioned all this to my Doctor but it just seemed to go straight over his head and he just said “You’re probably right, you know a lot more about ME than I do”. I offered to provide my Doctor with educational materials and websites he could study but he said that while he would like to learn, he “genuinely didn’t have the time because as a GP he didn’t specialise and had to concentrate all his time on his practice appointments and give referrals to specialists for that sort of thing”. The only referral he could give me was to Professor Tony Pinching’s CFS clinic which I already knew was a CBT/GET BPS clinic so I kindly refused this offer and explained exactly why I wouldn’t ever go to one of those places. I got my GP to refer me to Professor Julia Newton but had to face reality and cancel because there was/is no way I could cope with travelling from South West Cornwall to Newcastle and back.

    So, do I have POTS, Orthostatic Intolerance? Yes, I believe I do, but I’ve never actually had the tests for it. I wish I had been able to get to see Julie Newton.

  2. Was international consensus criteria used to diagnose the ME patients. If not, how do they know they had ME?

    By the way, I suffer from POTS. I’ve known for years, but just got the diagnosis this year, so I’ve got a keen interest in this topic

    1. I had POTS for the first few years, an attempt to regulate sleep with low dose amitriptyline made it far worse, (along with a thousand other horrible side effects) so was stopped.
      The POTS appeared to resolve itself, I don’t get it any more and haven’t had it for about 6 years now, *even when in a bad relapse*.

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