Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

Why Does POTS Come and GO and Do Any Herbal Supplements Help with POTS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Mya Symons, Aug 10, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

    I went to the emergency room for an unrelated reason a few months ago and they took my temperature. It was low--96 point something.

    I am finding a lot of information about what POTS is and what the symptoms of POTS are, but not on the reasons we get it and why it can come and go.

    Through a post here, I have read that XMRV damages the part of the brain in charge of Autonomic Nerve Responses. However, I do not remember an explanation for why it comes and goes and why we have low body temperature. Does anyone know?

    Has anyone found a good naturopathic remedy for POTS--something a person could by online or anything else that works well to treat it.
  2. Otis

    Otis SeƱor Mumbler


    I'm very new to POTS and dysautonomia. I finally put the pieces together a few months ago and got A POTS Dx very recently. Like most of my symptoms my dysautonomia doesn't come and go, it just hangs around. :)

    My normal temp was 97.6 but now it's a degree higher. I'm very temperature sensitive, especially heat-intolerant. I'm really only comfortable between about 68 and 72 degrees.

    So my body can't regulate autonomic processes well, including digestion, which became a problem 25 years ago.

    That was utterly unhelpful I'm sure, but I completely understand your frustration. Have you tried the forums at They seem pretty large and active.

    Best wishes,
  3. awol


    Hi Mya,

    I have also noticed dysautonomia is not a constant problem for me. I have noticed that it is an important part of my early symptom set for PEM, and also that my status in several vitamins and minerals, especially Bs, plays an important role. After a set of B12 injections, followed by a high dose B complex daily as well as a magnesium supplement, I am having far less issues with OI than just one month ago.
  4. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    POTS is to do with having a high heart rate and responses to postural change.

    I suggest too you check out the site Otis suggest. POTS can be caused by various reasons including by low blood volume.

    It can also come and go depending on many different factors including the degree of triggering things you have going on at the time. eg in females.. POTS can be triggered off more during menstration, how much you drink affects it, the weather affects it, eatting can affect, posture etc And of cause the CFS/ME can affect it. It may just take one thing to bring it on or a combination of things.

    For many it can be treated quite well by drinking certain amounts (this amount may be quite crazily high! depending on how bad the POTS is and if it is caused by low blood volume, which is usualy the case in CFS) .. and by taking more salt (eg salt tablets or sports drinks). .. avoidance of its triggers where possible eg dont try to exercise on a hot day, cooler showers etc.
  5. awol


    0 more thing. Dysautonomia issues will also be affected by hydration status and by salt levels, which affect both hydration and the function of the HPA axis. I have heard that dysautonomia is even treated with salt in those that do not have high BP (not all POTS cases are also high BP cases)

    Edit: Oh. I see taniaaust1 beat me to it!
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    POTS is often caused by stress, illness etc. The neurotransmitters in the brain are affected and then do not direct the "traffic" in the body correctly. I get Lipoic Acid Supreme from my CFS doctor as well as many other quality supplements. It helps the nerves in the body to work better. We also treat the neurotransmitters in the brain with Adrcor and 5HTP. So on both fronts we are helping the body repair.

    Nausea is one bad thing. I use a cold compress on my stomach for that, helps a lot. I drink a good gingerale too.

    CoQ10 helped my heart rate and chest pain. Carniclear helps that also.

    D Ribose is also a huge help. I take a lot of things that help support the health of my body until I can heal.

    I have learned lessons like to never get too hot. Many of us do not sweat and that is dangerous. Also, I use my wheelchair inside and in stores. My husband bought one for his car and one for inside the house. Overdoing is bad. I drink three liters of water from my filter. I bought the best I could find. Pure water is important.

    I try to keep my core and my arms and legs pretty strong, better than they used to be when I was much sicker. This helps the blood vessels.

    I agree with the cooler baths and showers. Too warm and I get really ill.

    I do not get extra salt since my bp goes up a lot sometimes. It never goes super low.

    It is odd the way it comes and goes, but I DO love how I can have good times!!! Today, I woke up not feeling good, but I know I will be better this evening. Usually works that way, you never know for sure.

See more popular forum discussions.

Share This Page