Tips on Living with POTS

By Ellen Lenox Smith, Columnist

I suddenly had my life come to a halt when “POTS” hit me in my sixties. Some of you may not be familiar with what that is.

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that affects the nervous system, causing light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and sometimes even death.

According to Dysautonomia International,  between as many as three million Americans have some form of dysautonomia, and over 70 million around the world.

I had always lived with low blood pressure, but as the instability of my neck, due to Ehlers-Danlos syndrome progressed, I suddenly felt that standing or even just sitting up in bed might cause me to faint.

I reported the symptoms to my cardiologist, who worked with me on finding treatments, but that journey was not a simple one.

The first thing he encouraged me to do was to salt my food, to keep my blood pressure elevated. When that was not enough, he prescribed salt tablets.

Suddenly, I started gaining weight. There was no evidence of swelling in the extremities, the weight retention for me landed in my chest. However, I continued to faint and feel horrible.  

I reported back to the doctor and was encouraged to add more salt. I got scared when I gained another nine pounds and decided to stop taking salt, assuming that was the culprit. Soon after, I passed out, was sent to the hospital, and diagnosed with congestive heart failure.

I came home after three days in the hospital and proceeded to melt out of my husband’s arms, hearing both legs snap as I fell to the ground. I woke up with terrible leg pain and now had to face two micro-fractures from the fall.  

When my cardiologist was contacted, he mentioned a medication that he thought he had prescribed for me, but I was certain he not ordered anything besides the salt. I admired his honesty in when he later admitted his mistake. He had confused me with another patient. Once I started the medication he intended for me to take, life started to return to me.

I wanted to share my story in hopes that a reader with POTS might find these tips helpful. It’s such a debilitating condition that I hate to think of anyone else suffering unnecessarily.

Here is what has helped to get my life back and blood pressure to almost normal:

1)  Sleep elevated at a 30 degree angle. You want to elevate the head of your bed under the frame, not just sleep with pillows to elevate. If you need to travel, you can take plastic containers often used by college students to elevate their beds to create storage. I use two containers on each side of the head.

2)  Keep hydrated. Drink plenty of water daily.

3)  Exercise to keep your circulation strong.

4)  My magic medication turned out to be Midodrine HCL, 5 MG tablets. Once I started taking them three times a day, I started to live with normal blood pressure! This specific medication may not be suitable for you, but there are other medications that may help. You should consult with a doctor before trying any of them.

I hope this might provide you with useful strategies to cope with POTS.  Don’t settle with being stuck in bed. Although finding the correct combination of medication takes time, I hope that it will bring some normalcy to your life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.