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Prior to my diagnosis of postural orthostatic tachycardia syndrome (pots) I’d only heard of it in passing in my chronic illness circles. I certainly didn’t know the symptoms, treatments, what life would look like with this illness, what causes pots, or pots syndrome stories from others diagnosed with it. It didn’t take long before POTS was brought up as a possibility by my cardiologist but before I could get there she put me through a battery of other tests to check my heart. In the end, my diagnosis turned out to be pots.
If you’re new to pots, let me walk you through my journey, and hopefully help you to understand a bit about it.
POTS Syndrome Stories
My symptoms include:
- accelerated heart upon changing positions
- pressure and tightness on my chest
- pain in my neck and shoulders
- increased fatigue
- increased migraines
- occasional palpitations
- blurry vision
- exercise intolerance
- reddish-purple colored legs from blood flow in my legs
After a battery of tests from my doctor and my cardiologist, including stress test, halter test, and more – I was diagnosed with POTS. So what is POTS exactly?
Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder and according to Johns Hopkins is characterized by two factors:
- A specific group of symptoms that frequently occur when standing upright
- A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing
And also according to Johns Hopkins the causes of POTS are as follows:
Neuropathic POTS is a term used to describe POTS associated with damage to the small fiber nerves (small-fiber neuropathy). These nerves regulate the constriction of the blood vessels in the limbs and abdomen.
Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.
Hypovolemic POTS is a term used to describe POTS associated with abnormally low levels of blood (hypovolemia).
Secondary POTS means that POTS is associated with another condition known to potentially cause autonomic neuropathy, such as diabetes, Lyme disease, or autoimmune disorders such as lupus or Sjögren’s syndrome.
In my case my POTS was likely caused by my Lyme disease and possibly by a mold exposure, so I technically have secondary POTS, which came on only roughly a couple years ago. My cardiologist actually wasn’t sure if this would be my diagnosis at first because it was affecting me later in life, she tends to see it develop in younger people, but because it is secondary POTS to a disease I’ve had for over a decade, then it did end up being what she diagnosed me with.
And trust me when I say, she did a ton of work on me. She ran all sorts of blood work, echocardiogram, stress test, halter test, another scan of my heart, and testing my blood pressure and heart rate from laying, to sitting, to standing (including instructing me to check it throughout the day for a month) to rule in or out other more serious heart conditions, which it doesn’t look like I have at this time. With my heart rate jumping 30-40 plus beats per minute from laying to standing, my symptoms, and what she ruled out, she came to the pots diagnosis, which does seem to fit my symptoms.
How Pots can be diagnosed:
It can be diagnosed with the table tilt test or by taking heart rate or in my case by taking blood pressure from laying, sitting, and standing.
How I treat my POTS diagnosis:
- water intake
- low carb diet
- plenty of rest
- compression socks when its flaring
- heat for my neck when its flaring
- low caffeine intake
- no alcohol
- ice hat when I’m flaring and it flares up my migraines
- careful when getting up from laying
- avoiding the heat or hot experiences, like hot baths, which flare my symptoms
- increased salt intake
Medication for pots:
I’m not on anything to treat pots but from my pots support group I know many are. If you have pots I’m sure your doctor will talk to you about treatment options for your specific case.
I’m actually hoping to heal this condition the more I’m able to get Lyme under control, and possibly treat mold toxicity, should that actually be an issue in my body. However, this is just my story and you and your doctor may decide on medication.
In the end, POTS is a life altering illness and one to be taken seriously. Although it isn’t actually a heart condition, in that, its a blood flow issue and not directly the heart, and therefor not as “scary” as if I’d been given a heart diagnosis, it still is absolutely life-altering and some of the symptoms are scary. It is treatable and lifestyle changes can also help.
I would recommend a pots support group, keeping only doctors who understand the severity of the illness in your life, reading up on pots, and educating those in your life that are there to support you through it.
I hope this all helps you a bit in understanding the illness and understanding the process of living with it.
Source: Johns Hopkins
Nothing in this post is meant as medical advice. I’m simply sharing my own story and general POTS information that can be found online. Please only seek medical advice from your medical professionals. See my medical disclaimer on my policy and disclaimer page.
Please note: Affiliate links may be used in this post. I may receive a small commission at no extra cost to you if you use my affiliate link. Find my full disclosure policy.0
Hi, I’m Nell. First, I’m a wife and mother, and a believer in Jesus. I’m also a writer of words, maker of art, and chronically ill warrior. This space is where I document this one big beautiful and flawed life. Essays and diary entries, poetry and art, and peaks into my heart. Welcome.