Now that I officially have a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) I think I have had symptoms my whole life. My symptoms significantly worsened when I got my inflammatory arthritis diagnosis, but I now realize I have always had issues with dizziness and exercise intolerance. I was diagnosed with POTS by a cardiologist. Please discuss any medical questions with your doctor.

What is POTS?

According to the Cleveland Clinic, POTS is a condition that affects blood flow. It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response).

POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat. 80% of POTS patients are female.

Heart rate and blood pressure work together to keep the blood flowing at a healthy pace, no matter what position the body is in. Consequently, people with POTS can’t coordinate the balancing act of blood vessel squeeze and heart rate response. This means the blood pressure can’t be kept steady and stable.

There are various forms of POTS. The most common are:

  • Neuropathic. You have damage to small-fiber nerves that manage blood flow in your limbs and abdomen.
  • Hyperadrenergic. You have higher levels of the stress hormone norepinephrine.
  • Hypovolemic. You have unusually low blood levels.

POTS Symptoms

POTS can mess with your whole body. Some of the symptoms you may have are:

  • Dizziness or fainting
  • Blurry vision
  • Nausea
  • Vomiting
  • Belly pain
  • Bloating
  • Diarrhea or constipation
  • Severe sweating
  • Brain fog
  • Extreme fatigue
  • Blurry vision
  • Higher or lower blood pressure
  • Faster or slower heartbeat
  • Chest pain
  • Feeling hot or cold
  • Feeling anxious, nervous, or jittery
  • Shaking or tremors
  • Headaches, body aches, or neck pain
  • Insomnia
  • Unusual color in hands and feet

What Causes POTS?

According to Dysautonomia International, researchers are still working to identify the root causes and pathology of POTS. There are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients. This is a partial list:

  • Autoimmune Diseases
  • Chiari Malformation
  • Diabetes
  • Ehlers Danlos Syndrome
  • Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis C
  • Multiple Sclerosis

POTS Diagnosis

Once I began experiencing worse symptoms, my rheumatologist referred me to a cardiologist. At first, he wasn’t too sure if I had POTS. We did an “in-office” tilt table test – where he had me change positions manually and measured my heart rate. I then got a referral for a Holter monitor and an echocardiogram. Once he reviewed all of the data, he diagnosed me with POTS.

There are several different ways to reach a diagnosis – here is what the process may look like:

  • POTS can be difficult to diagnose due to the sheer number of symptoms occurring over time. Patients with POTS may have symptoms for months to years before finally being diagnosed with the condition.
  • A tilt table test is the “gold standard” of POTS diagnosis. The tilt table measures your heart rate and blood pressure as you change posture and position.
  • Besides the tilt table, other testing may be done for POTS:
    • Blood and urine test for causes of POTS and conditions that mimic POTS.
    • QSART (a test that measures the autonomic nerves that control sweating).
    • Autonomic breathing test (to measure how your blood rate and pressure respond during exercise).
    • TST (tuberculin skin test).
    • Skin nerve biopsy.
    • Echocardiogram.
    • Blood volume with hemodynamic studies.

POTS Treatment

There is no cure for POTS, but it can be managed with treatment. I am currently managing my symptoms with increased salt in my diet, electrolyte drinks, compression stockings, and increased hydration. WebMD lists the following treatments:

  • Medication. Your doctor may prescribe drugs such as fludrocortisone (along with more salt and water), midodrine, phenylephrine, or a type of medicine called a beta-blocker to help with blood flow.
  • Compression stockings. These help push the blood up from your legs to your heart. You’ll want ones that provide at least 30 to 40 minutes of compression and go all the way up to your waist, or at least up to your thighs. Your doctor can prescribe a pair.
  • Diet. Salt and water are key. They keep fluids in your body and raise the amount of blood in your body. Think pickles, olives, nuts, and salted broths. Eat smaller meals more often with a healthy balance of protein, vegetables, fruits, and dairy.
  • Exercise. POTS can make it hard to be active, but even light exercise such as walking or simple yoga can help with blood flow and keep your heart healthy.
  • Lifestyle. If you get tired easily, you may not always have the energy to take care of yourself. Learn how to take your pulse and blood pressure. Ask your doctor what your numbers should be, and check them regularly.
  • Sleep. Try to stick to a sleep schedule.

Thank you for sticking around and reading the whole thing! If you just got diagnosed with POTS- don’t be discouraged. I know the diagnosis can seem really overwhelming at first. It’s a lit of information and there is no cure… but there is hope! With the help of your doctor, you can try different treatments and find a mix that works for you. I joined a few support groups on facebook, found comfort in my dogs and friends. Feel free to leave a comment if you have any questions!

With love,