What is POTS?
My name is David and this is the story of my unexpected battle with POTS. What is POTS you may ask? POTS is a non-curable, lifelong condition that stands for Postural Orthostatic Tachycardia Syndrome. Pretty intimidating name right? Well it turns out that it can also be a pretty intimidating condition to live with. Here is a great video that explains POTS way better than I can:
Affiliate Disclaimer: this post contains affiliate links and I may receive income made from qualifying purchases at no additional cost to you. Full disclaimer here
Medical Disclaimer: PotsPosts.com contains general information about medical conditions and treatments. The information is not professional advice and should not be treated as such. Full medical disclaimer here
Life Before My Unexpected Battle With POTS:
Life before POTS was great. I am married and have three amazing kids and we were living out our dream life together in the beautiful state of Colorado. We moved here a couple of years ago from Texas once I accepted a great job as a worship pastor at a local church.
We were LOVING life in Colorado and tried to get to the mountains any chance we got! A big part of why we moved here was for our daughter’s allergies. She was pretty much allergic to the entire state of Texas (grass and tree pollens) and was sick all the time. We tried EVERYTHING and nothing seemed to help her so we knew it would take something drastic to improve her life. So, we researched and found out Colorado would be the best place for her to live! Eventually, we moved and have tried to be outside any chance we can get!
As you can imagine, we quickly learned to love the outdoors here and made sure our daughter could be outside as much as her little heart desired to! Camping and hiking were two of our favorite family activities to do together. We wanted to see ALL of Colorado and tried to visit as many mountain towns as possible! Our other goal was to see a bear! (we still haven’t accomplished this one yet!)
Everything was going great until I got COVID in December of 2021. Thankfully, it was a mild case and I recovered quickly and went back to work. However about a month later, I began to develop a long list of troublesome symptoms and that is where all the “fun” began.
Symptoms That Started My Battle With POTS:
As with any new condition, it takes a while to come to a diagnosis. Now, I have learned that POTS can effect people in many different ways and each person can have a long list of crazy symptoms that are hard to diagnose.
Check out this post on What is POTS and How Does it Affect People to find out more info!
Here is my list of symptoms that I have had over the past year:
Dizziness, blackouts, loss of balance, falling, constant ringing in ears, brain fog, blurred vision, PAIN everywhere, sensitivity to sound and lights, extreme fatigue, muscle spasms and cramps, difficulty walking, numbness and tingling in legs, arms, fingers, and toes, having to pee like every 5 minutes, drastic changes in heart rate and blood pressure upon standing, heat sensitivity, intolerance to physical activity, stomach issues, inability to control body temperature, insomnia, waking up drenched in sweat, mood swings, and shortness of breath.
Sounds fun doesn’t it? This list of symptoms led to multiple appointments with various doctors, neurologists, cardiologists, and specialists. ALL kinds of tests were done including blood work, MRI’s, and CT Scans. Basically, they were checking me for anything and everything that could cause the symptoms I was having.
How I Was Diagnosed:
Initially, doctors thought that I had Multiple Sclerosis, or MS. I began testing for this and was sent to MS specialists. However, those test did not show conclusive evidence to provide a diagnosis for MS. I was then transferred to another neurologist who specialized in figuring out difficult cases.
This neurologist was the first to suggest I had Dysautonomia, which is a dysfunction of the nerves that regulate non-voluntary body functions, such as heart rate, blood pressure, and sweating. She referred me to a dysautonomia specialist who was eventually able to diagnose me with POTS. I was given a version of the tilt table test and asked to wear a heart monitor for two weeks. Then, we met up to talk through the test results and symptoms. I was diagnosed with POTS due to my heart rate spiking more than 30bpm’s upon standing.
The theory for me was that I had a pre-existing condition of Dysautonomia which was triggered by COVID. Once triggered, the Dysautonomia took on the form of POTS. I had no idea that I had Dysautonomia but can remember having bouts of dizziness and unexplained symptoms throughout my life. It turns out, there are many articles like this one talking about how COVID has triggered POTS in others. Oddly enough, POTS is most common in females, but COVID has seemed to trigger it more in males now. Another weird thing about POTS triggered by COVID is the symptoms are more severe.
Treatment to Fight The Battle With POTS:
POTS is fairly new to the medical world and it has only been an official diagnosis within the past couple of decades. Treatment is fairly limited, and for me, it is even more so. POTS causes your heart rate to spike, or increase more than 30 BPM’s upon standing. This is caused by the inability of your heart to pump blood efficiently to the upper part of your body. Your brain then tells your heart it needs to pump faster to make up for it; which leads to heart rate spikes. Typically, medicine is given that lowers your heart rate or blood pressure in order to prevent the heart rate from spiking.
Unfortunately for me, my resting heart rate and blood pressure is pretty low. Doctors have always said I have a “runner’s heart” and mistakenly assume I run…all you runners are crazy! My low resting heart rate and blood pressure means I can’t take any of the medication typically given to treat POTS. So for me, my treatment is limited to the following generic ways to treat POTS.
My Treatment Plan for POTS
- Increased salt intake (LMNT Electrolyte Packets work great for this!)
- Drink a gallon of water each day
- Wear compression stockings like these. Or these designed specifically for men
- Sleep elevated by raising your head 4-6″ each night (I use this wedge pillow!)
- Avoid my symptom triggers (Here are 5 easy steps to help you identify your triggers!)
- Levine Protocol Exercise Plan
Only time will tell if this will help improve my symptoms and get me back to a “normal” level of life. I say “normal” because there is no known cure for POTS and it is a lifelong condition. So, the new normal is to focus on ways to improve your quality of life by avoiding your triggers!
Please note, this treatment plan was given to me by my doctor. POTS effects all people differently so please be sure to consult your doctor BEFORE trying anything new!
Life Post My Unexpected Battle With POTS:
This past year has been extremely difficult. I’ve learned that life on this unexpected battle with POTS is like constantly riding on a roller coaster. There are many ups and downs and sometimes it completely turns your life upside down! I’ve had multiple days where I could not even walk or get out of bed. There have been days when I felt so bad that I just wished Jesus would take me home!
I in no way feel like I have conquered this, but I’m trying. This journey has given me a heart and passion to help others who are dealing with POTS. I am thankful for the doctors who have helped diagnose and treat me and my faith in God helps me get through the daily grind of life with POTS.
My focus now is learning how to use my personal experience with POTS to help others. POTS is a beast to deal with but you aren’t in this fight alone! I hope this blog will help you and please feel free to share your symptoms and journey to diagnosis below! We are in this together and I’d be glad to help in any way that I can!
Our prayers will continue for you and your family. We will pray earnestly for healing and a return to some sense of normalcy!! Very well written article.
Thank you!!
Thanks for sharing all this information. So many ask about you. Now they can read all you have posted and understand better your life with POTS.
So many people are praying for you and your family. …. and that soon you will get financial help through disability.
Thank you for the continued prayers and support!
David, thanks for posting and using your experience to help others! What a roller coaster you and your family had been riding. More days of uncertainty than certainty weigh a person down! But your faith in the Healer is evident. I speak the name of Jesus over you right now and ask Him to move this mountain. Continual prayers for you and thanks for praying for me too. Love you very much!
Thank you Cara! You’ve been a big help for me throughout this journey!
Thank you for the update. I was just thinking about you yesterday. Love and healing vibes being sent to you and your family.
Thank you!!