POTS symptoms…

I thought I would try to squeeze in another post before Dysautonomia Awareness month ends. Trying to make up for the lack of posts about POTS lately!

As you may remember, I was first diagnosed with postural orthostatic tachycardia syndrome (POTS) in 2011 in my early 30’s, although looking back I was showing signs of hyper-POTS back in college. I had extremely high blood pressure and I remember getting dizzy standing in the grocery store line. Years later I would start fainting occasionally, and that led to me seeking a diagnosis.

In addition to fainting, I felt “weird” when standing. I described it initially as constantly feeling like I was on a boat, like I was rocking back and forth. I would also feel sick and dizzy, and somewhat confused. My vision felt blurry when I was standing, even though I had perfect eyesight at the time. After seeing a cardiologist and undergoing a holter monitor and tilt table test, I was diagnosed with POTS.

Because POTS affects so many different body processes, it causes a variety of seemingly unrelated symptoms, including:

• dizziness
• lightheadedness
• fainting/near-fainting
• headaches
• blackouts
• brain fog/cognitive impairment
• fatigue
• shortness of breath
• air hunger
• chest pain
• heart palpitations
• tachycardia/bradycardia
• hypertension/hypotension
• nausea
• vomiting
• abdominal pain or cramps
• constipation/diarrhea
• blood pooling
• difficulty regulating body temperature
• sweating irregularities
• anxiety
• pain/aches
• tremors
• exercise intolerance
• insomnia

The number, severity, and frequency of symptoms varies from patient to patient. Symptoms can change over time, especially during flares. I used to have tremors, shortness of breath, and fainting/presyncope more often than I do now. However, my dizziness hasn’t changed at all, even with the marked improvement in my POTS symptoms overall.

You will notice that most every symptom on the list above, perhaps with only the exception of tremors and fainting, are invisible. That is why it often takes so long to be diagnosed (avg. of 5 years) and why we are often accused of faking our symptoms.

My top five POTS symptoms are:

1. fatigue
2. heart palpitations
3. dizziness
4. brain fog/cognitive impairment
5. nausea

The dizziness primarily only occurs when I’m standing, whereas the other four can and do occur at any time. Certain activities or conditions can exacerbate POTS symptoms, such as:

• standing
• eating, especially a carb-heavy meal
• heat
• elevation
• exercise or movement
• dehydration

There’s no cure for POTS. So how do POTS patients manage this expanding list of symptoms? More on that next time. In the meantime, be like Fletcher and wear your turquoise awareness ribbon for the last two days of October.

“It is here that we encounter the central theme of existentialism: to live is to suffer, to survive is to find meaning in the suffering.” – Viktor Frankl

Smell ya later.
– Linds