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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Puzzled About POTS

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

  1. AdAstraPerAspera



    I'm a 19 year old with ME/CFS and POTS, a diagnosis I received when I was 14. I have been told by my doctor that my POTS is severe as compared to what she's seen in other CFS patients, and I definitely find it greatly disrupts my life, as I constantly feel on the verge of blacking out and tachychardia and irregular or thumping heartbeat keeps me up at night and is a scary and constantly uncomfortable symptom that I would sell my soul to get rid of. I take 20mgs of Indarel a day but it does relatively little to help.

    As I was diagnosed so young, I never learned much about POTS and have found what I've researched on the internet to be a bit confusing and contradictory (though maybe I'm bad at looking)

    So please forgive my ignorance but I have a few questions about it I'm hoping some kind folks will answer!

    1) Do we know what causes POTS? As far as I can see, no one seems to know what it's caused by, but are there clear theories? How should I research it?

    2) How does it relate to adrenal/thyroid problems? Is it just adrenal dysfunction that causes the tachychardia with the overly responsive nervous system?

    3) What do people do to help relieve thumping/racing heart after exertion? Is there any way to minimise the symptoms?

    Thanks so much in advance!!!!
    BeautifulDay, Joh, sb4 and 4 others like this.
  2. trishrhymes

    trishrhymes Senior Member

    Have you looked at the POTS UK website? I don't know which country you're in, but if in the UK they may be able to help.
  3. AdAstraPerAspera


    No, I haven't! I'm in Aus, so I'll try looking it up :) Thank you
    Invisible Woman likes this.
  4. charles shepherd

    charles shepherd Senior Member

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

    1 The MEA has a brand new information leaflet covering all aspects of PoTS in relation to ME/CFS:

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

    2 Information on POTS from the 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.

    Add picture of acrocyanosis:

    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
  5. lnester7

    lnester7 Seven

    I take beta blocker + vasoconstrictor drug (midodrine) + Florinef (increase blood volume) + oral IV (like pedyalite on bad days)
    I am still Potsy but I can somewhat function (nothing works around my period) but ok the rest of the month.
  6. PinkPanda

    PinkPanda Senior Member

    Forçe e Honra likes this.
  7. jimells

    jimells Senior Member

    northern Maine
    For some of us, mast cell activation triggers an excess of epinephrine/norepinephrine, which causes symptoms including tachycardia, cold, clammy and discolored hands and feet, shaking, sometimes elevated blood pressure, etc. I had limited success at controlling POTS with florinef, alpha blockers, and beta blockers - sometimes very limited.

    Since I started a daily anti-histamine (zyrtec 10 mg) three months ago, I have had no POTS crashes, no more trips to the Emergency Room, and the other hyperadrenergic symptoms are mostly gone.

    I have come to the conclusion that mast cell activation plays a large role in most of my symptoms, a role that has been almost completely ignored in the research literature, for reasons I fail to understand. Both the IOM and the P2P reports ignored mast cells, like they don't even exist. Why? If an amateur (me) can find these papers, why can't actual researchers with actual research skills?

    Here is a paper on mast cells and POTS:
    Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders.

    Here is a paper on mast cell activation disorder, which explains that only half of mast cell patients have hives:
    Often seen, rarely recognized: mast cell activation disease--a guide to diagnosis and therapeutic options.

    And a few papers I have found so far on ME and mast cells:
    Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in chronic fatigue syndrome/myalgic encephalomyelitis patients.
    Chronic Fatigue Syndrome, Mast Cells, and Tricyclic Antidepressants
    * diencephalon - a part of the brain that includes the hypothalamus, which controls body temperature, among many other things.
  8. Prefect

    Prefect Senior Member

    Did you have any allergic type symptoms that may have indicated mast cell activation, or did you just have POTS symptoms?
  9. ivorin

    ivorin Senior Member

    I am so sad it happens to young people the way it did for you, I at least had some time to live out a bit of my life before it hit me at 22. I have had it for 6.5 years now, if you have any questions just shoot me a message and I'll do my best to offer my knowledge. I do have pots but I have more knowledge of handling other aspects of the illness. The pots I can't conquer.
  10. sb4

    sb4 Senior Member

    United Kingdom
    This is by far my worst symptom. There is the obvious things that I'm sure you are aware of like avoiding heat, big-meals, physical exertion, staying calm, etc. What has helped me with pounding heart, although I believe that POTS "type" varies massively from patient to patient, is:
    -Magnesium (transdermal)
    -Helminthic Therapy / TUDCA (significant improvement here but don't know which one is responsible as I started both at roughly the same time)
    -Red light therapy
    -Mirtazapine (has side effects though...)
    -Beta blockers
  11. fireflymd

    fireflymd Senior Member

    I was diagnosed with POTS last year, when I was breathless and tachycardic even at rest. I had a positive tilt-table test and started Midodrine with some relief. The best I felt was right after the IV fluid hydration given to me after the test--but this was not a practical therapy to continue.

    Then I read that POTS could be due to Lyme. My daughter's atypical POTS has greatly improved on Lyme antibiotic treatment. Both of ours was considered "atypical" since we didn't feel that much better lying down; he also said her Valsalva response was not typical for POTS (something about decreased heart rate and blood pressure variability on her tilt-table test that I have to research to understand better).

    Recently I noticed I no longer need the Midodrine, although I am taking Adderall XR 20 mg to get through work (I don't take it on days off).

    I have noted improvement since pulsing Tetracycline and Diflucan for Lyme (with Herx type symptoms of feeling worse during the second week of the pulse, and then improvement during the two weeks off). I had been treating Lyme for a year prior with no benefit from daily antibiotics noted.

    I have also been on valacyclovir (Valtrex) since March (6-7 months)(for a persistently positive Early Antigen antibody for EBV, although not as high as Dr. Montoya considers to be positive), Equillibrant since early May (4-5 months) and valganciclovir (Valcyte) since late May (4 months) so I'm not certain which therapy is working. Oddly enough with the improvement in my symptoms I have developed some insomnia--waking in the middle of the night, which was not a problem before.

    So something seems to have shifted--I am still not normal, and not sure I ever will be again, but getting through an abridged work schedule has gotten easier, and I'm not having the severe, debilitated days where I cannot get off the couch (so far).

    I wish I knew what was "working" because I started all these things when I was feeling my worst and most desperate to find some treatment that would work.
  12. Forçe e Honra

    Forçe e Honra Senior Member

    Northern California
    I hope you have found something to help you.

    For my PoTs, my doctor prescribed a beta blocker that has helped a lot. But I'd already been on LOTS of mast cell meds for a couple months (long time use of both zyrtec and singulair due to severe asthma and allergies, added in Allegra, that acid blocker that is OTC I forgot the name 2x a day, NeuroProtek 5 a day (I think that is for mast cell stabilization)...started Ketotefin a month ago which helped even more with mast cell stuff. And I will start Cromolyn for mast cell stabilization if the Ketotefin doesn't seem to keep working as well as it has. So I am not sure if my PoTs is helped by both the beta blocker and the mast cell stuff, or what. Also, my heart still pounds quite hard and gets faster than I'd like after 3 or 4 hours on the beta blocker so I am guessing my doctor will increase it, as that was the plan, to titrate up the dosage. I am only taking 2 doses, 4 hours apart, right now.

    Has your doctor talked about beta blockers? Also, before I had all the above meds, I drank gatorade a lot - daily. And use a lot of salt, drank a lot of water...I just intuitively knew I needed blood volume/salt/fluids/electrolytes to feel a little less awful. Do you get plenty of salt and water? I find I have to have both, plus electrolytes. I also found the sugar (while I know it is bad in many respects) in gatorade coupled with the sodium and electrolytes was superior to just drinking water and eating salt. Sometimes I'd eat watermelon with salt and drink lots of water.

    Best wishes for your health :)
    AdAstraPerAspera, manasi12 and sb4 like this.
  13. AdAstraPerAspera


    Hey again everyone!!!

    I know this is late but I just wanted to say I'm so sorry that I didn't reply :( University exams hit me hard and I went into survival mode for the rest of the year and completely forgot to check posts on here/go over notifications. Just read them all now, and they're so helpful. I've been able to rest over Christmas and now I'm going back to researching everything while I have the chance (and the energy!).

    You guys are amazing, thank you all so much :heart::heart::heart:
    Forçe e Honra, lafarfelue and Mel9 like this.

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