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What caused your pots?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by beverly78, Mar 7, 2014.

  1. beverly78


    I am fairly new to this website and I am in the process of trying to figure out what is causing my POTS. My doctor is helping a little but I need to bring ideas to him. I was wondering if someone that knew how to do it could do a poll and see what issues caused everyone's POTS. I figure knowing what happens more than others will help me get those ruled out first. I know most people never get to know the cause, but I am getting to be pretty positive that it is because most doctors do not want to spend the time to look.
  2. SOC

    SOC Senior Member

    I'm not sure what you mean by "caused", so maybe I'm not giving you an answer you want.... My (and my daughter's) POTS appears to have low blood volume at it's root. We don't know, however, why we developed POTS several years into ME/CFS. So in that sense, we don't know the underlying, original cause.
    ahimsa likes this.
  3. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I know my POTS was caused by my ME. Maybe your question is supposed to be.. how is the ME causing the POTS?

    I think in my case the ME has caused it by giving me low blood volume along with other dysregulation issues (just like the ME has messed up many of my hormones.. maybe the dysregulation works throu some hormone?? or maybe its due to a constant underlying viral attack? Viruses can cause POTS).
    ahimsa likes this.
  4. Valentijn

    Valentijn Senior Member

    Another factor could be the increased ADRA2A gene expression found post-exertionally in ME/CFS patients. This can have the effect of inhibiting norepinephrine release, which can cause low blood pressure or pulse pressure. POTS (raised heart rate) could be the body's mechanism for coping with the decreased efficiency of each heart beat.

    I tried Yohimbe (an ADRA2A antagonist) based on that theory, and it has been very helpful in regulating my blood pressure, and consequently my heart rate.
  5. ahimsa

    ahimsa Rarely on PR now

    Personal answer:

    I don't know exactly what caused my autonomic dysfunction. I know that my illness started out as primarily Neurally Mediated Hypotension (pre-syncope symptoms were my biggest problem, the increased heart rate was not as pronounced). I got an NMH diagnosis after a tilt table test in 1995. My heart rate increase was not quite high enough to be called POTS. Now, after 20+ years of illness, I seem to have a combination of both NMH and POTS (after testing at home and by my cardiologist).

    Unlike some ME/CFS patients who only developed autonomic problems after several years, I had NMH symptoms from the very beginning of my illness. The dizziness, feeling short of breath, and nausea (probably other symptoms, too, but these are the ones that come to mind) started a month or so before I got too sick to work and had to take medical leave.

    I do know that my illness followed a severe virus. Correlation does not mean causation but it's likely that this virus is what triggered my illness. But anything more than that is pure guesswork.

    General answer:

    There are a lot of factors which might contributed to POTS. I don't think doctors know all the factors that might contribute, nor can they always diagnosis which factor(s) applies to each patient. But in case it helps, here is one list of possibilities from the Dysautonomia International web site:

    A brief extract (bolding done by me):
    I hope this helps! But just be aware that you might not find out exactly what is causing your POTS.

    Even without knowing the cause for your POTS (or other autonomic dysfunction / orthostatic intolerance) it's still worth trying to figure out how to treat it. Knowing the cause can often help the patient choose more effective treatments, of course. But not everyone can figure out that underlying cause.
    Last edited: Mar 21, 2014
  6. Aerose91

    Aerose91 Senior Member

    Over exertion. When I first got ME I had slight POTS and no OI (that I knew of anyway) Now, after an episode of over exertion or a period with extra poor sleep my OI has gotten much worse and per my usual PEM setbacks, has been permanent
  7. stevesayshi


    I believe it was post viral, but I put my body through so many stressors in such a short time I can't be sure.
  8. ChrisD

    ChrisD Senior Member

    East Sussex
    I've had bad POTs this past week and I can't work out whether the cause is overuse of an Infra Red Sauna hence mineral depletion, OR trying a new probiotic (quite large dose) could have made a shift in the microbiome, or the fact that I have infections such as Borrelia. Or a combination of all?

    Either way, it is very uncomfortable and I can't sit upright without this strange feeling in my heart and chest - perhaps a bit of an irregular rhythm along with the increase of 30BPM+. Also when I lay down at night this happens as well, and standing/walking obviously -it has really debilitated me from a relatively healthy level.
    sb4 likes this.

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