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how you define pots?

Discussion in 'General ME/CFS Discussion' started by notmyself, Aug 6, 2017.

  1. notmyself

    notmyself Senior Member

    I've seen the definition, sugesting an increase by 30 beats from suspine to standing,or standing heart rate over 120.I've notice that if i stand on my feet still ,without moving at all my heart does increase with 30 or more,but if i move around a little is going down..My legs muscles are shaking aswell if i stand still without moving.Do people who have pots have the tahycardia also when they are moving around or just when they stand still? thanks
    Thinktank likes this.
  2. charles shepherd

    charles shepherd Senior Member

    PoTS and ME/CFS: Basic information and links from the MEA:

    1 The MEA has a new information leaflet covering all aspects of PoTS in relation to ME/CFS. This is based on a workshop on PoTS that was led by Professor Julia Newton and the medical adviser for PoTS UK. Link:

    as well as a leaflet covering the management of orthostatic intolerance:

    2 Information on POTS from the (2017) MEA purple book - clinical assessment section:

    Postural orthostatic tachycardia syndrome (PoTS) sometimes forms part of ANS dysfunction in ME/CFS. PoTs 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).

    3 Information on symptoms and diagnosis of PoTs from the new MEA information leaflet

    Why does PoTS sometimes affect people with ME/CFS?

    PoTS can affect people with ME/CFS, especially those in younger age groups and at the more severe end of the spectrum. This is because the ANS is commonly involved in ME/CFS – where the malfunction can cause what is called orthostatic intolerance (difficulty in remaining upright – as in PoTS) and cold hands and feet. The ANS also affects bowel and bladder control and may therefore cause irritable bowel type symptoms and ‘irritable bladder’ symptoms.

    Primary PoTS and overlap with other conditions

    Primary PoTS often has an abrupt onset and may follow acute infections, immunisations, surgery, pregnancy, or trauma – all of which can trigger ME/CFS. As with ME/CFS, there is evidence of an autoimmune component and there is a genetic component in some cases.

    PoTS is also more common in people who have hypermobile joints (which can also overlap with ME/CFS), people who are deconditioned after prolonged bed rest, diabetes, sarcoidosis, Sjogren’s syndrome, SLE/lupus, antiphospholipid (Hughes) syndrome, and mast cell activation disorder - which should be checke for this if flushing and allergies are present.

    What are the diagnostic symptoms and signs?

    Characteristic symptoms, which occur on standing and are normally relieved by lying down, include:

    ·fatigue or weakness (91%)

    ·palpitations or awareness of the heart beating (86%)

    ·dizziness (90%)

    ·feeling light-headed, pre-syncope/feeling faint (90%)

    ·sometimes actually fainting/syncope (58%), or having a transient loss of consciousness

    Percentages are taken from a PoTS UK patient survey.

    Other common symptoms, which occur in up to 40% of cases, include:

    ·nausea and other irritable bowel type symptoms

    ·headaches – which may be caused by lack of blood flow to the brain,

    ·sleep disturbance

    ·shortness of breath and chest pain

    ·visual disturbances – including blurring

    ·‘brain fog’/cognitive dysfunction – as occurs in ME/CFS

    ·‘coat hanger pain’ - which is thought to be due to poor blood supply to muscles around the neck and shoulder

    Acrocyanosis – a puffy bluish discolouration of the hands and feet that is caused by blood pooling in the veins occurs in around 50% of cases.

    Symptoms are often described as being more prominent on rising after waking up. They are frequently exacerbated by standing up too quickly, heat, some types of food or large meals, alcohol and stress. They are often exacerbated during infections and may be worse during menstruation.

    For some people, the disability caused by PoTS is considerable, especially when this is added to the health problems caused by ME/CFS. Patient evidence collected by PoTS UK indicates that 23% are wheelchair users and 37% are unable to work. Although severely incapacitated, PoTS patients often look well.



    How is PoTS diagnosed?

    A diagnosis of PoTS is based on the characteristic symptoms and what is called a 10 minute active stand test and/or a tilt table test.

    The Active Stand Test: Under careful supervision, heart rate and blood pressure are measured after resting/lying down for ten minutes, then immediately upon standing still (unsupported with hands by sides) and after 2, 5 and 10 minutes. This test may bring on symptoms of PoTS and some people may faint. If the result is uncertain the test can be repeated on another occasion.

    Head-Up Tilt Table Test: This involves lying on a table that can be tilted to an angle of 60 to 70 degrees in a quiet, dimly lit, temperature controlled room. Blood pressure and heart rate are recorded in a continuous manner. After a period of 5 to 20 minutes of lying flat, the table is tilted. Although a diagnosis of PoTS should be made by an increase in heart rate of 30 beats per minute within the first 10 minutes, this upright position can last between 10 and 45 minutes. The patient will be asked how they are feeling during the test, so symptoms can be matched with heart rate and blood pressure. The test will end if your blood pressure becomes too low, satisfactory results have been obtained, or the maximum time has elapsed.

    If facilities are available, some patients are tilted after a carbohydrate drink (liquid meal challenge), exercise or heat.

    Serum catecoholamines should be checked in supine and upright positions, especially if a hyperadrenergic form of PoTS is suspected.

    A heart rhythm test/electrocardiogram test should also be arranged to exclude heart problems that can cause a tachycardia as well (eg inappropriate sinus tachycardia) and thyroid function tests. Other cardiac/heart tests – eg 24 hour heart rate and blood pressure monitoring, echocardiogram, autonomic function screening tests - may be required in more complicated cases.

    Unfortunately, many doctors still know little or almost nothing about how to diagnose PoTS and how to manage it. As a result, many people with PoTS are left undiagnosed, may even be misdiagnosed as having anxiety, panic attacks or hypochondriasis, or be labeled as ‘heart-sink’ patients.

    Hope this info is helpful…..

    Dr Charles Shepherd

    Hon Medical Adviser, MEA
    Last edited: Aug 6, 2017
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  3. ryan31337

    ryan31337 Senior Member

    South East, England
    Hi @notmyself,

    When testing for orthostatic tachycardia you should be told to keep as still as possible, the most extreme version of this being the tilt table test where you are literally strapped down and unable to move. Literature suggests skeletal muscle can help the blood return, so to get consistent results you need to isolate those and see what happens without movement.

    Often POTS patients will consciously or subconsciously learn that flexing, swaying etc. when upright can be a helpful counter-maneuver - personally I only faint when I actively make myself relax legs & glutes, then the BP will plummet. Equally if I really push myself in a standing test eventually my muscles will tire (and shake) and near syncope follows. I still get tachycardia and symptomatic when flexing & moving but the real hit comes from standing still.

    Hope that helps,
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  4. notmyself

    notmyself Senior Member

    thanks.but i belive standing still on your legs wi seems i have pots aswell..happy days
    bombsh3ll likes this.
  5. Wonko

    Wonko Senior Member

    The other side.
    It seems I "may" have POTS. At normal temperatures it's borderline, sometimes I meet the criteria, sometimes I am only close but not over the line. But in hot weather I always exceed the criteria, with HR rising 35-45 bpm when standing. My supine heart rate varies between 75 bpm and 120 bpm which confuses the issue - presumably a standing heart rate of 130 bpm doesn't qualify if it was 120 bpm when supine?

    Also at the times when I am borderline I am generally not upon standing but within 10 minutes my heart rate drops, at the times when I am not, it doesn't.

    edit....I also have the cyanosis, mainly only after a "hard day", sometimes apparently at random, but generally a lot more visible than the posted picture would indicate, and not just in my feet, a lot of the time in my hands (which is normally where I would first notice it), forearms, feet and lower legs, rarely going above the knee. I have mentioned this to my doctor, and a few other people, but as I only found out what it was called a few weeks ago I couldn't give it a name, and everyone just looked at me like I was mad.
    Last edited: Aug 6, 2017
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  6. notmyself

    notmyself Senior Member

    It's etremelly hot now in my area..38 degress and i don t have air condition..i hope maybe that's why, cause i take my heart rate before and it s not exceding is 120 just by's either the weather or my running expriment few days back..on normal days i don t know if i qualify or not for pots diagnostic..i have a very low resting heart rate..60 usually but when relaxed and in bed for a while is close to 50. if i stand it doesn t reach 100 but is is still 30 beats extra ..but not quite tahycardia cause is less than 100. today is 70 with 120 Pots for sure..i jsut hope is the weather :)
    Wonko likes this.
  7. Snowdrop

    Snowdrop Rebel without a biscuit


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