10 Helpful Tips for Living with POTS 

By Tara Johnson 

Are you living with POTS or care for someone who lives with POTS? Let’s dig deeper into the term that is more than a tool for cooking in the kitchen. 

POTS is the acronym for Postural Orthostatic Tachycardia Syndrome.  

It is a form of Dysautonomia which is an imbalance of the Autonomic Nervous System. POTS is tested by the Tilt Table Test, or informally called TTT. The Tilt Table Test must raise your heartrate over 30 points in order to accurately diagnose POTS. 

Most people have a feeling of malaise. They do not know exactly what’s wrong, but they just “don’t feel well.” And the average diagnosis is 6 years, when an educated medical professional could do this in 15 minutes. 

*Here at “Rich Faith in Poor Health” we do not provide medical treatment, diagnosis, or advice. We just share what has worked best for us in our own health journeys. No information published on this website is intended to be a substitute for medical advice from a qualified healthcare professional. We highly recommend that you talk to your doctor before taking any action or making any healthcare changes. 

POTS Symptoms and Prescriptions

Most people with POTS struggle with a plethora of symptoms: 

• struggling with heat, 
• feeling cold,  
• quenching a thirst,  
• battling fatigue,  
• wrestling with brain fog,  
• floating through memory loss,  
• bouncing around heart rate,  
• losing to blood pooling,  
• retching muscle pain,  
• and considerable gastrointestinal issues.  

These symptoms are considered systemic and it is a good doctor who will figure that out. They will know this and diagnose or refer you. Stay the course.  

You are building your Health Care Team. 

Many prescriptions come from doctors. The most notable are the type we pick up from a pharmacy, and our insurance usually covers. Here are a few more for POTS that don’t fall into that category but are widely prescribed.   

They include:   

• pink Himalayan salt,  
• hydration fluids,  
• compression socks/stockings or an abdominal binder,  
• and rest.   

There are many things you can do to balance your autonomic system.  The last prescription Dr. Gary Murray wrote for me was reading my Bible 30 minutes a day. 

POTS Quality of Life

The quality of life for someone in the early stages of POTS is frustrating and stressful, always looking for answers.   

It is tiring… a. Lot. of. F-A-T-I-G-U-E… 

When we are not trying to gain more energy and we can get out, it is a good day. Trust me. We may not be better, but today is a good day.   

While we are out, we are trying to play a game of “find a chair” or “find a bathroom.” Ask someone with POTS, anywhere you are. They will know where the bathroom or a chair is. We have already scoured the room and found the location.   

BULLSEYE… 

10 Tips for Living with POTS

Here are 10 tips for living with POTS that will help you find healing and peace even as you deal with this chronic condition that can cause pain and suffering.

1) Light

Light will always intimidate the darkness.  

Just as it says in Exodus 34:29b-30:

“He was not aware that his face was radiant because he had spoken with the Lord. When Aaron and all the Israelites saw Moses, his face was radiant, and they were afraid to come near him.”

Every morning, I wake up and open the blinds to let the light in. The light does many things for the body. It is a starting point like the engine to a car.   

For your house, light moves out the darkness. It kills germs, lightens the dust, brightens the room and lowers your depression, thus balancing your autonomic system and your POTS. 

2) Movement

Think about this profound statement from Amber Walker, “Motion is Lotion.” 

We need movement, any type of movement.  

• If you can move your shoulders; move your shoulders.   
• If you can walk; walk.   
• If you can run; run.   
• If you can dance; dance.  

Dance like David for the glory of God. 

See 1 Corinthians 6:19-20 NIV:   

“Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies.”

I always see myself walking in fields in the sunshine and dancing to my favorite song. I could first dance only with my shoulders and then my feet. This progressed to my living room, where I would dance alone or with a friend or two. Then, when I was out, I could dance for half a song and a half before having to rest.  

Today, I can rejoice like David!  

3) Nutrients

Because what you put into your system will make a difference, I can choose to eat healthy and feel good or “garbage in, garbage out.”  

The Bible says in Proverbs 4:26,  

“Make level paths for your feet and take only ways that are firm.” 

This is true with our nutrients also. 

My first example is anemia.  When I was a child I was diagnosed with severe anemia. The doctor said to give me any type of iron, even hot dogs for breakfast. Can you imagine hot dogs for breakfast?  

I guess that’s close to a pig in the blanket.

My second example is R-lipoic acid. R-lipoic acid is a thiol antioxidant that is found in many foods. The problem is you would have to eat so much of the food to get the R-lipoic you need. It balances our autonomic nervous system and resets us like a clean “POT” right out of the dishwasher. 

4) Mindset

What is mindset?  

“Healing takes place when you think about healing. The mind is a powerful thing,” Dr. Tulio Bertorini.   

In Psalm 20:4 NIV, it says;  

“May He give you the desire of your heart and make all your plans succeed.”

When I was bed-bound, I had a picture of the full armor on my wall. I would lie in bed, look up at the picture of the armor of God, and go over each piece that it takes to put on.

Envisioning the armor of God, I would dress myself in each piece as I prayed. Ephesians 6:11–18 (SSB) says, 

“Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.

Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  

Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.”

5) Love

Pray for love and strength to continue. Like Nehemiah, when he built the wall we have a task at hand to help defeat dysautonomia.   

In John 13:34,  

“Love one another.  As I have loved you, so you must love one another.  By this all men will know that you are my disciples, if you love one another.”

There was a time in my life when I was in a traumatic situation, and I went to my pastor to seek wisdom. I asked him to show me where in the Bible this was not ok.   

He lifted his bible and said, “This is a book of love. Everything about this book is against what you are saying.”   

That was good enough for me. 

6) Breathwork

Breathwork is breathing for rest and digest. This is how we turn on the parasympathetic system. It is the calming half of the autonomic nervous system and will give you peace. 

In Genesis 2:7,  

“God formed the man from the dust of ground and breathed into his nostrils the breath of life, and the man became a living being.”

When I joined the school chorus, the first thing we learned to do was breathe. Using our abdomen, we would breathe in through our nose and fill our lungs to capacity until we could see our abdomen rise. 

Then we would force the breath out through our mouth. We would practice this over and over until it became a habit. Our director wanted us to breathe deeply naturally to hold the notes and sing smoothly, resonating each sound. 

Little did I know then, this breathing was calming for my vaso-vagal nerve. 

Breathing is natural and automatic. It is done by your autonomic nervous system. When you breathe deeply six times, it will calm your vasovagal nerve and your ANS (autonomic nervous system). 

In Acts 17:25,  

“And he is not served by human needs, as if he needed anything because he himself gives all men life and breath and everything else.” 

7) Water

I took up running in college. You know, the sport? Everyone who knows me can stop laughing now because I actually have the bibs to prove it. I have T-shirts, bibs, and pictures as proof that I completed the 5Ks.  

I have no desire to go back to it, but I did learn some great things while I was at it. 

Most importantly, you have to drink a lot of water. I mean, a lot of water. 

There’s a reason why water stations are set up along the route and runners carry a water bottle. Some even have special water backpacks called Camelbaks.  

Our bodies are made up of 70 percent water. That’s why keeping water in our system is important to keep it working properly. 

Being a Southern girl, I didn’t sweat. I glistened.  

At least that’s what I was told. 

How was I to know that all this time, not sweating is a symptom of Dysautonomia?  

As a runner, I had to teach my body how to sweat. This was not easy, but it was sure helpful in the process. 

My electrolytes are depleted and replenishing them with water provides a working system. Drinking water and taking a couple of pebbles of Pink Himalayan salt with my medications is one way that I do this.  

This salt not only includes sodium but also potassium, magnesium, and calcium. I cook with it and sometimes throw a little over my shoulder. (Wink.)  

On a high-salt diet, I drink water with meals. Then I supplement it with Gatorade, Banana Bag, or Acti-Lime. 

Water is important for our bodies and spirits. 

On the last and greatest day of the Feast, Jesus stood and said in a loud voice,  

“If anyone is thirsty, let him come to me and drink. Whoever believes in me, as the Scripture has said, streams of living water will flow from within him.” ( John 7:37–38 SSB)  

8) Rest

Return, O my Soul, to your rest, for the Lord has dealt bountifully with you. Psalm 116:7 

When my daughter was about four years old, she had trouble falling asleep at night. Her allergist told me about the importance of sleep hygiene.  

Preparing the body for rest is as important as resting itself.  

That is when we learned to formulate a routine: brush our teeth, read a story, turn off the light, tuck her in, close the door, and go to sleep. To this day, she likes the lights off and the door closed before she falls asleep. I rarely get to tuck her in now since she’s in college, but you get the picture. 

Up until my illness, I had good sleep hygiene. Then the Sympathetic Excess took effect, and I couldn’t turn my mind off. Like many others, I would fall asleep with the television on or watch until I drifted off.  

Then cell phones became a part of our daily routine, and we scroll through the screens at bedtime. These electronic devices, both the television and the cell phone, keep our minds alert and active. 

What we need is calm and peace. 

Peace is important for many types of rest, including physical rest. 

9) Wellness

We serve a loving God who wants to wrap us in His arms, and when He can’t, still provide us with the very best. The very best of everything and that includes our health and wellness.  

In Psalm 103:1-5 it states;  

“Praise the Lord, my soul; all my inmost being, praise His holy name. Praise the Lord, my soul, and forget not all His benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your love and desires with good things so that your youth is renewed like the eagle’s.” 

Before my second diagnosis, I remember sitting in the back of Sunday school, sobbing and whispering to God in despair, “Why? Why have you done this to me? I feel like a leper.”  

There was no answer. There was only stillness. 

Leprosy is a disease that eats away at your skin, leaving it white as snow flaking away. When you have leprosy, you are quarantined from everyone else. This is easier to explain today, after the pandemic and COVID–19 caused us to quarantine. 

When the cloud lifted from above the tent, Miriam’s skin was leprous—it became as white as snow. Aaron turned toward her and saw that she had a defiling skin disease, and he said to Moses, 

“Please, my lord, I ask you not to hold against us the sin we have so foolishly committed. Do not let her be like a stillborn infant coming from its mother’s womb with its flesh half eaten away.”  

So Moses cried out to the LORD, “Please, God, heal her!” Confine her outside the camp for seven days; after that she can be brought back.”  

So Miriam was confined outside the camp for seven days, and the people did not move on till she was brought back. (Numbers 12:10–13, 14b–15) 

Before my diagnosis of MCAD (a co-illness of POTS), I had small, flaking sores in my ears that would itch and hurt. This physical ailment made me feel justified as I labeled myself a leper.  

With a proper diagnosis and diet, these went away completely, and my skin is healed…completely healed.  

10) Physician

When looking for a physician, there are three kinds you will discover: 

• A physician that will stay on a timed task, mark the boxes and see if you fit in those categories 
• A physician who will take the time to listen to you, “Flip the Clinic,” and do what it takes to research and find your diagnosis and make you better.
• A physician you’ll have to fire – yes, you can fire your physician.  

The physicians on my Health Team fit into the second category. 

I used to think if you didn’t say the word anxiety, then it wasn’t real. It could be called something else or have a different reason to live. That, in fact, is true. Anxiety can be called by other names and can have a different reason to live. Although, as most therapists will tell you, if you don’t identify the problem, then we can’t fix it.  

It was just in the past year that I called out my anxiety before I evicted it. There is a process to eviction, as any lawyer will tell you, and it may take a while, but it definitely doesn’t happen until you get started.  

Now, while there may be boxes that were left behind when it moved out, my anxiety doesn’t bother me. I can laugh about things being out of place or pray through a situation with calmness and strength. 

These attributes are things I thought I had in the past.  

In reality, I wasn’t allowing the full potential of my healing to happen until I named the area of uncertainty.  

With God’s power, we are a force to be reckoned with!  

Healing from POTS

Healing comes from within us and starts from our belief.  

Malachi 4:2 (ESV) says,  

“But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall.” 

Go out and leap like calves from the stall. Do you know what that means? 

Let this Texas girl break it down for you.  

When the calves are held in the box at the Houston Livestock Show and Rodeo (this is something that comes once a year, and everyone in Texas goes. We all get decked out in our country best for this one! I’ll never forget the show that Reba McIntyre put on with her red dress when she sang “Fancy.” Well, now that you get the gist of it and can almost smell the sawdust, I better get back to my analogy), the cowboys hold the calves still with a leather strap.  

No one wants to be still and wait, especially a bucking calf!  

Can you imagine when they open the gate how those calves jump and buck into the air? 

We aren’t going to simply be healed. We are going to be healed!  

We will be free and be able to leap into freedom! 

Now imagine the day of your healing when you, too, can run and jump like calves released from the stall. Won’t that be a glorious day?  

A day of fun and rejoicing.  

As 1 John 3:21–22 says,  

“Dear friends, if our hearts do not condemn us, we have confidence before God and receive from him anything we ask, because we obey his commands and do what pleases him.” 

Can I get an AMEN! 

If you find this article to be helpful, then please share it so it can help others! 

About the Author

Hi, I’m Tara! Let me introduce myself.

I coach women with Dysautonomia recovery + mindset + faith to create hope for a future. Trixie the Service Pup lived with me in Tennessee. I may call Tennessee my home, but I’m also a native Texan and Texas will always have my heart. There’s one special human that calls me Mom. Keeping up with Sarah takes up a lot of time. (We lost Trixie last Valentine’s Day, but she was an integral part of my healing.)

In 2014, my life took an unexpected turn. Soon after, I had many followers on Facebook and decided to pivot. From an unexpected change in lifestyle, I formed Hope for Team Tara and held the Dinner and Dancing for Dysautonomia Awareness Gala four years in a row.

After the success of the Dinner and Dancing for Dysautonomia Awareness Gala, God placed the second project on my heart. Defeating Dysautonomia – One Spoon at a Time with Faith, Hope and Love. This book gathered the medical community to express my story and encourage others. Be on the lookout for the audiobook, shortly. We’re rebranding to coach patients, families and physicians. Defeating Dysautonomia is our official new name. You can connect with Tara by joining her Facebook group Defeating Dysautonomia.

And be sure to check out these other helpful reads: 

• Coping with Chronic Illness: 7 Ways to Thrive 
• Living with Chronic Illness . . . And Jesus 
• Chronic Illness Burnout: What It Is and 7 Ways to Heal