POTS 101

So, what is POTS?

POTS (Postural Orthostatic Tachycardia Syndrome) is difficult to explain. This makes it difficult to raise awareness, difficult to learn about your diagnosis of POTS, and even more difficult to explain to friends and family. My hope is my site will explain POTS thoroughly in an easy-to-understand way.

The basics of Postural Orthostatic Tachycardia Syndrome or POTS:
  • POTS is not rare. It is under diagnosed. When I first was diagnosed, I was under the impression it is a rare disease.
  • The hallmark symptom of POTS is an increase in heart rate from the supine (lying) to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.
  • With POTS a change from lying down to sitting up is not tolerated by the body — the body does not adjust to the pull of gravity like a normal person’s body should.
  • The one common symptom across everyone with POTS is postural tachycardia (rapid heart rate). There are loads of possible characterizations, such as hypotension, hypertension, hyperadrenergic state with upright posture, but all POTS patients experience the jump in heart rate when going from supine to standing.
  • There is a spectrum of severity. Some cases of POTS do not interfere at all with the person’s ability to live a normal life. Other people are disabled, to the point of being bed bound, by POTS.
  • Many people with POTS not only look healthy, they may come off as healthy to other people. People cannot see what is going on inside the person’s body and how awful it is. This is why POTS is what is known as an “invisible illness”. Please never say “You don’t look sick” or “You’re looking good, you must be feeling better” to someone with an invisible illness. It is incredibly frustrating for us even if your intentions were good.
  • POTS is a type of dysautonomnia (malfunction of autonomic nervous system). This system controls so many functions of your body which is why so many symptoms are associated with POTS— learn more about this by clicking “symptoms” on the webpage menu.
My characterizations relevant to the example I’d like to give are: I have Ehlers-Danlos Syndrome Type 3 which allows blood pooling, hyperadrenergic state with upright posture, resting tachycardia, and orthostatic hypotension.

Here is what the experience of standing up would be like if you had my case of POTS…

  1. You would stand up.
  2. Gravity would rapidly pull blood down your legs where it pools. Your body cannot adjust to the pull of gravity (Note: In a “normal” person, the blood would remain around the abdomen, allowing the person to go about their business without even thinking about what their blood is up to.)
  3. With blood pooling at your feet, they begin to turn red, then purple. Blood pooling is seen in many POTS patients without EDS, but due to stretchy veins, it is extremely common in EDS POTS patients. This tends to be painful and feel like you have on really heavy boots and something is pressing out from the inside. Your body, including your brain is only getting about 80% as much oxygen as it should be.
  4. Within as little as 30 seconds, your heart begins to race two or three times as fast as what is considered normal. The heart is trying to get blood/oxygen to your brain. With POTS, a heart rate upwards of 120 is not abnormal.
  5. This, combined with your plummeting blood pressure from orthostatic hypotension, will make you feel dizzy and you may faint or come very close to fainting. Even if you didn’t have hypotension, you would still feel dizzy and possibly faint from the tachycardia alone. If you fainted, this might be the end of the story.
  6. You don’t always faint. It depends on individual circumstances and the severity of the syndrome. You may only get very dizzy, lightheaded, fatigued, and continue to experience heart rates most people only experience during intense exercise.
  7. The feeling resulting from the hyperadrenergic state (norepinephrine surge) your body experiences when standing feels like the adrenaline rush you get when you are startled and has the same symptoms. For example, you’re likely to be quite shaky.
  8. As a result of this happening every time you go from lying flat, to sitting up, to standing, you develop many uncomfortable symptoms. Not all symptoms come from blood pooling and poor circulation. A large amount of symptoms are a result of your autonomic nervous system not working correctly (read more on that below)
  9. Ironically, despite being tired and enduring many other symptoms all day, you likely will experience insomnia from the norepinephrine surges!
  10. You’re not done yet. POTS doesn’t only impact you when you sit or stand up. Anything that involves blood flow changing/adjusting will cause symptoms just like when you stand up. Examples include eating a large meal, being in the heat, or even the mildest exercise
  11. You begin to meticulously plan your life around POTS each and every day because you have no other choice. Without the assistance of amphetamines and extreme amounts of caffeine, you typically will have less than an hour of “good” time each day. You must use it wisely. If you overdid it the previous day, you will probably do nothing except lay flat all day. Too many episodes of fainting or near fainting (pre-syncope) accumulate, making it easier and easier to faint the more you are upright. If you “overdo” it, you will not only faint, you will likely vomit alternating with fainting until you need to go the hospital for IV hydration and nausea medications.
  12. You cannot easily do anything spur of the moment. If something pops up, you likely will be too sick (physically unable/mentally drained) to handle it the way you’d like to. You’ll worry about over-indulging yourself with how much you allow yourself upright at holidays, or spending time outdoors in the summer, because you don’t want to become extremely symptomatic for the following weeks.

To learn more about what I mean when I say “symptomatic”, click on the symptoms link at the menu on the top.


25 thoughts on “POTS 101

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  1. I have a colleague with a long term illness – she has concussions from time to time and is on heavy medication. She has 2 little eggs of a tapeworm in her brain and she needs medicines to stop the eggs from hatching. About 6 months ago, she felt sick in the office and asked me to take her to the hospital. On the way, she fainted on my lap. I grew nervous and screamed at the driver to hurry up. We got her to the emergency room and after a while she woke up to ask if she had a seizure. She’s about 35 with a 6 year old son and a doting husband. I looked at her and felt really sad. Sad at the whole thing. How people suffer in various ways and carry on. I wish her well.
    I wish you well too.

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  2. Hello, I found your page linked from another with POTS. If I may suggest an idea. I’ve been a family practice doctor of 30 years. 15 years ago I started out on a quest to understand how I could use Acupuncture to help my patients suffering with Fibromyalgia. Fibromyalgia and related myalgias are invisible pain and odd clinical syndromes that many providers, doctors and family members can not SEE and can not be confirmed or denied by modern technology.

    What I found was that complex myofasical (muscles tendons ligaments) issues which are an abundance of trigger points will discombobulate all neuro.vascular.muscular sensors. This chaos within the gut, chest, pelvis, spine and lower extremities can masquerade as many diseases.

    The treatment of MF disease is Myofascial Release Therapy. Myofascial tissue release therapy is on a spectrum from simple stretching, yoga, Pilates, hands-on manipulations, acupuncture, dry needling to finally Travell trigger point injections.

    In addition wellness in vital too, vits mineral trace element will have to supplemented. Magnesium copper zinc selenium and lithium. POTS will cause a type of PTSD which has to be addressed in the therapy too.

    Vital … pill combinations will probably not get you back to normal, so YOU have to begin this journey by being proactive with your provides and push them to help.

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    1. Thanks for the thoughtful,detailed comment! I am beginning to turn more and more to diet to try and help myself. Before I knew what was wrong, I turned heavily to diet and exercise, but since I didn’t know I had POTS, I also exercised incorrectly for the illness. I now have been looking up a lot of research on Eastern Medicine. I found it so interesting that you mentioned the PTSD. I could totally see that being the case. Having my life altered so drastically has been pretty devastating! I’m interested in Myofascial Release Therapy. Is there any specific resource (other than yoga poses/stretches) I should look to for guidance on this? Is it something my fiance could learn to do as far as hands on manipulations?

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  3. Get proactive for your pain issue

    “Most pain is myofascial until proven otherwise” JGT, MD. To prove this you have to began the myofascial release therapy.

    Therapy will treat most arthritic pain issues.
    Therapy will help to revitalize a degenerating joint.
    Therapy will correct any joint, spinal misalignments.
    Therapy will convince doctors and patient that this IS the correct option.
    Therapy will empower patients to be proactive with their care.
    Therapy will decrease the need and numbers of back, knee, or hip surgery.
    Therapy will decrease the need for some medications.
    Therapy will eliminate the need for medications in some ailments.
    Therapy will help contain the rising cost of healthcare.
    Therapy will relieve stress, insomnia worry and anxiety. Thus began the healing of PTSD.
    Therapy has very FEW side effects.
    Therapy has NO drug interactions.
    Therapy has very FEW contraindications.
    Therapy has very FEW precautions.

    Remember;
    Myofascial tissue release therapy is on a spectrum from simple stretching, yoga, Pilates, hands-on manipulations, acupuncture, dry needling to finally Travell trigger point injections.

    Get some Epsoms salts and start soaking. Click Click
    Get magnesium -high quality and started. Click
    Get on the floor or bed and start stretching. Click
    Get a foam roller to work on your hip/back click and abdominal area, Click
    Review this Youtube for face and jaw massage. Click
    Use self-trigger point release or acupuncture with your hands or a T-cane. Click
    Use a foam roller. Click
    Find a PT specialist who can perform “Spray and Stretch.” Click
    Get help from a professional massage person.
    Find a John F. Barnes therapist. Click
    Get help from an Acupuncture professional. Ask to be taught DIY needles. Click
    Find a graduate of Gunn IMS, (Intramuscular Stimulation). I’m not on the Gunn’s graduate list, but have practiced IMS for over 10 years. Click
    Find a trigger point specialist who knows Janet G. Travell, MD or Edward Rachlin, MD.(no steroids or botox-these will “poison” the tissues)Click

    Note:
    Injection therapy with various substances; Prolotherapy, Steroid Injections and Botox Injections. These, in my opinion are off the table of choices because the others are the treatment of choice.

    You must realized that you have to treat the entire body from head to feet inside and out. Supplements that will help with the secondary stress effects of chronic misery.
    Get herbal lithium as a post traumatic mender. Click
    Get L-Glutamine which will begin the repair of your GI system. Click
    Get Melatonin for sleep. Click

    Conflict of Interest Disclosures: None reported.

    Updates:
    Click

    https://docs.google.com/document/d/1Y3qf7kyeaMQ1P9vi4WVLP0_Pd3L5vBxzOatu9uhFP5g/edit?usp=sharing

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  4. Thank you! This is a great way of explaining what we go through. I have difficulties explaining it and usually just tell people my disability doesn’t prevent me from doing things, I just have to do things differently and I have to take my time and with that I require A LOT of planning. Like you said, I have to be mindful of a busy day because I know that will put me out for about 2-3 days. I have to eat a lot of small meals, anything heavy, greasy or refined will trigger my symptoms and I can not stand or sit for a long time. I am learning a lot about what I can and can’t do and always read about things that help others to try it out in hopes it will help me too.
    Thanks again for the well written post

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    1. It is definitely a learning process and it sounds like you are doing a great job. Being sick is still not easy, however compared to early on, I naturally modify day to day life in little ways that’s makes it easier to deal with. I am happy you found this helpful!

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  5. Hi, have you considered mercury poisoning (‘metal’ fillings, flu vaccines, mother with amalgams, fish intake, etc)? I notice that POTS and mercury symptoms are almost identical, and mercury poisoning interferes with mineral transport around the body, as well as pituitary function which can have a knock-on affect on the thyroid and adrenal functions.

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    1. We have identified the source of my case of POTS and its is an autoimmune disease attacking my nervous system. If you have one, I am happy to read through a medical journal article on the topics you mentioned.

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      1. I’m afraid that this idea of immune ==> nervous system is incomplete.

        In the archive of medicine, what we have always known but “forgotten” is that the stresses, strains within the muscle system can accumulate thus leading to the degrading and malfunctioning the muscles plus all of the other 10 organ systems.

        This is a page out of Janet Travell, MD textbook from the 60s-90s:

        You can realized the sick muscles can masquerade as many many invisible illnesses.
        Treat the muscles and the illnesses will dissipate into the thin air. All of this healing comes from from within by natural forces that have been stalled and blocked by contracted tighten sicken muscles.

        Apply NO effective matched treatments aimed at the muscles system and the muscles can not ignite healing all by themselves thus not healing at all.

        The treatment of muscle come in 4 levels of intensity: 1. Self-care of stretching and range of motion exercises like yoga. 2. Hands-on forces aimed within the muscles. 3. Thin needling to reach into the muscle bundles to ignite natural healing. 4. Hypodermic needling to reach into muscles that are so densely and contracted that the thin needles can not penetrate to re-injure to re-ignite to fuel natural healing.

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        1. I am just checking my understanding of your line of thought: Are you familiar with autoimmunity, and literature on the effect of autoimmunity on the nervous system and other systems, but you disagree with their methods/interpretation/findings? Or, is it you agree and your hypothesis is in regard to what causes the body to create autoantibodies?

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          1. 1st you have to consider the human body is designed to automatically heal itself from within by the natural forces. This healing process is ongoing and it is 100% effective. The only way healing can be stalled or stopped is if you die, if there is a block or if something missing in the healing recipe. So in your case, you probably have all 3.

            This will sound a little simplistic but bear with me please. There are 11 organ systems in the human body. The immune system, endocrine, lymphatics, kidneys, cardiovascular system, pulmonary, CNS, reproductive and skin are pretty much automatic. All we have to do have a well balanced life, diet, drink plenty of fluids, get some rest and exercise in the human body will function at better than 95-99%.

            There is a little-known, forgotten, marginalized daily activity that we have neglected and that is our muscle system. The muscle system is unique in that muscles can only contract. In the maintenance of our muscles we are required to pull our muscles back to “start” every day. Just like we have to drink water every day. We have to do other daily activities to maintain our health and well-being.

            Without regular muscles stretching our muscles will tighten and contract little by little over a long period of time until they become less than 90% of their optimal length. After a while these muscles will contract and not release because they are not well enough to reset themselves. That is our job as owners of our bodies to pull, stretch, knead, elongate, unwind, overstretch and heat up our muscles so that they can fully restore for the next set of events.

            This process of muscle degrading can take decades and depending on your DNA, life, stress, personality, wellness, diet, worry, freedom or fear the process can accelerate.

            Stressed, tattered, contracted, acidic, low oxygen and knotted up muscles will squeeze the life out of your other organ systems including your spinal nerves, peripheral nerves and your entire intramuscular neural web. You will feel discombobulated from all of your messed up metabolic functions.

            So in the beginning of this process you just have a few aches pains and stiffnesses.
            The middle of this process you have irritable bowel, leaky bladder, indigestion, heartburn, vertigo, dizziness and the list goes on and on.
            The middle-end of this process is basically an invisible miserable syndrome that is not detectable by any of modern technology.
            The end-stage of this process can include problems such as complex regional pain syndrome, RSD, severe lymphedema, severe fatigue, and a bizarre array of maladies that have no modern solutions that can restore a person back to normal.

            The only way to reverse this process is by aiming all of your efforts into your muscle system. There only 3 ways to access or to ignite this process. 1. Externally with hands-on therapies, 2. internally with thin needling and 3. internally with hypodermic needling.

            Names of these remedies are chiropractic adjustments, spinal unwinding, traction, dry needling, Gunn IMS, travail trigger point therapy, prolotherapy, neural therapy, biopuncture and my favorite wet needling.

            Wet needling is Janet G Travell’s hallmark intramuscular remedy. Wet needling is the perfect medicine which will re-ignite stalled healing from deep within to restore sick, tired and debilitated muscles. Many of these muscle are the 1 inch small rotators of the vertebra. Healthy muscles means a healthy you.

            Sorry for the length = packing a lot into a few paragraphs is tricky and I’m not good at writing all of this down. Doing the remedy is simple in comparison.

            This is the distillation of 10 of my discovered Masters of Healing from 1890s to 1990. NO way can any 1 person discover and perfect all of this in a lifetime. Lucky me that I went back into the archives of medicine.

            I know you will have many questions so see my fb pages or my web site or ask. I’m been very busy lately.

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  6. I was recently diagnosed with Neurocardiogenic Syncope after a tilt table test (and ruling out other things with some blood work, a CT, MRI, and EEG) but I’m not entirely convinced because they said it looked like POTS at first, but then since it was a whole system reaction and I passed out after 13 mins, it was NCS. (even though my heart rate was really high, went from like 90 when laying down to 120 when I was upright and I believe with NCS it should have gone down) While I’m waiting to find a doctor that knows more about dysautonomia, I’m looking for compression tights/stockings/pantyhose. I have no idea what to get and the doctor who did the test thinks it really doesn’t matter and isn’t even necessary, just a suggestion. (which I think is crazy) Any suggestions?

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    1. Did you ask your doctor to explain why s/he believes in NCS and not POTS? (or both – here is an article on that: http://www.dynainc.org/docs/ncs-pots-combined.pdf)

      I like Juzo or Jobst brand opaque stockings because they are a fairly soft texture and stay up on me. Their websites have sizing information. I have skin colored toeless stockings I can wear sandals with, and black closed toe stockings. The skin colored ones are not too fashionable, but the black ones look just like tights, which is nice. The strength I get is 20-30mmhg. Some people prefer/need more or less pressure than I do, or prefer waist high.

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