Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Could it be POTS?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by laurachenny, Jan 18, 2017.

  1. laurachenny

    laurachenny

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    Hi all,

    I've been a cfs sufferer for 8 years and also have a diagnosis of panic disorder due to bad palpitations (especially first thing in morning and at night, awful after eating carb heavy foods).
    I read about PoTS/OI online since realising my heart rate is getting high from doing very simple tasks (140bpm walking half mile to shop, 110bpm washing up, 120bpm getting dressed in the morning).

    I've tried doing the poor man's test, and about half the time my heart has gone from about 60bpm to 105bpm. As soon as i lay back down, it seems to plummet pretty quickly to lower than my resting heart rate (55ish) which I found a bit strange.

    However, on other occasions Ive done the test, my hr will rise to a relatively normal 90bpm or rise just 20bpm or so then come back down within a couple minutes.
    Would I be correct in thinking this isn't POTS as symptoms would occur all the time if it is? or is it worth investigating further?

    Thanks
     
  2. charles shepherd

    charles shepherd Senior Member

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    The MEA has a new information leaflet covering all aspects of PoTS - symptoms, investigation, management etc - in relation to ME/CFS:

    http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance/

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

    http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance-2/


    From the new PoTs leaflet:

    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.


    Add picture of acrocyanosis:

    http://mddk.com/wp-content/uploads/2015/11/acrocyanosis-pictures-2.jpg


    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.




    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    SamanthaJ, Hutan, ryan31337 and 2 others like this.
  3. ryan31337

    ryan31337 Senior Member

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    South East, England
    Hi @laurachenny,

    The excellent post by Dr Shepherd should help you, but to comment on your specific question re consistency of signs: its quite normal (at least in my experience as someone diagnosed with POTS) for the magnitude of postural heart rate elevation to change dependent on prior exertion, general health & other unknown factors. Its also worth noting that some research has indicated the magnitude of heart rate elevation is not necessarily linked to severity of symptoms. Definitely worth getting checked out, just make sure you target a doctor with a reputation for understanding and treating POTS.

    Best of luck,
    Ryan
     
    trishrhymes likes this.
  4. JaimeS

    JaimeS Senior Member

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    Re: carbs. For those of us with sensitive autonomic nervous systems, a bump in blood sugar will cause the heart to race. Happens to me, too, and took me a bit to figure out what was up. This happens to healthies as well, but it affects them less.

    I'm now on a pretty low carb diet and don't experience that symptom anymore.

    And though I'm not a physician, FWIW sure sounds like POTS to me. Symptoms aren't always identical day-to-day. With chronic conditions, there are good days and bad days.

    [Edit: also, 'panic disorder' first thing in the morning is your morning cortisol slapping you in the face. I had that at onset. Unless your symptoms are connected to an emotional picture (which they might be! But you didn't mention that) I would say this is directly hormonal. Hey, check it out -- aspirin may help with that! Also, apparently you might consider a probiotic or prebiotic, if you aren't doing that already.]

    -J
     
    Last edited: Jan 18, 2017
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  5. Hutan

    Hutan Senior Member

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    That's a useful leaflet on OI @charles shepherd.

    I think it would be good to also mention anxiety caused by adrenalin released in response to a lack of oxygen in the brain. That knowledge is useful in ensuring that treatment doesn't head down a psychological path unnecessarily. (See for example a video by Dr Chris O'Callaghan
    )

    I'd also add pallor to the list - of the face and extremities.

    I think the leaflet would be more useful if you gave the criterion for indicative POTS diagnosis for the Active Standing Test as most people will want to try it at home a few times before suggesting POTS to their GP. Although 30 bpm is often given, one expert suggested that it should be slightly lower than the tilt table test requirement due to the inevitable swaying and lower leg muscle use that serves to move blood around and so reduce the impact of being upright. I think 28 bpm was suggested for adults.

    I also think the criterion for children should be mentioned (40 bpm). Obviously these cut off points are a bit arbitrary - but it is useful to know that the one for children is higher.

    As @JaimeS has said, symptoms vary from day to day. They also vary during the day. I qualify for a POTS diagnosis about 75% of the time in the morning and 25% of the time in the evening. I think the leaflet would be better if it made that point about variability more strongly. I'd be encouraging patients to track their heart rate increase upon standing over a number of days and at different times of day before drawing a conclusion.

    I have't seen your leaflets but I note that the link you gave for orthostatic intolerance takes you through to a leaflet download page headed POTS that has a picture of a corner of a leaflet headed 'POTS'. Maybe the pictured leaflet has been superseded? I think orthostatic intolerance is the better subject to be covered i.e. it's more than just POTS. For example, I experience all of the following at times as well as the increased heart beat rate of POTS: narrowing of the pulse pressure when standing; a substantial increase in blood pressure following up-right exertion; a need to lie down after meals.
     
    JaimeS likes this.
  6. charles shepherd

    charles shepherd Senior Member

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