Getting a POTS diagnosis was devastating. Nobody ever expects the worst to happen to them.
It is human nature to be optimistic about our future and expect all of our wildest dreams to come true. However, life is not always so kind.
Having health issues is nothing new to me, and they only seem to get progressively worse the older I get. The reason that I am writing all of this is to help the minority of the population that is fighting the same battles that I am.
I hope that this article is an encouragement to you.
This article is about my POTS diagnosis and how I treat my illness.
Background
I can’t say with 100% certainty that I know how I developed POTS.
I had a cardiac ablation when I was eighteen and I started to develop POTS symptoms within a few months. After being diagnosed with a heart arrhythmia when I was fifteen, I was told that the worst case scenario was that I would pass out and hurt myself. After getting the cardiac ablation I assumed that I would never have to worry about that ever again, but six months after surgery I passed out for the first time.
The first time I passed out I was in the shower. I remember becoming conscious again and taking a very long time to rationalize why I was laying on the floor of the shower when that was very uncharacteristic of me.
I then started to panic and decided to see my cardiologist to make sure it wasn’t my heart. He brushed off my concerns and told me that I was probably dehydrated and next time I felt lightheaded to lay down, put my feet up, and drink some water. I left feeling very disappointed and felt in my gut that something was wrong.
Another year went by before I passed out again. After being abroad for a week, I felt extremely fatigued and lightheaded. I literally could not get out of bed without almost passing out. I was helping my mom prepare dinner when I passed out (yes, I did pass out in the food), and this time I brushed it off as being jet lagged and overly tired from my trip.
Six months later I passed out for the third time. This time I was in church (passed out on the person in front of me) and this time I realized that this was definitely a problem that wasn’t getting better so I decided to see my cardiologist again as well as my primary care doctor.
Being proactive, I ordered a full lab workout to rule out dehydration, anemia, thyroid issues, etc. My labs of course came back perfectly normal, which meant that getting a diagnosis was going to be difficult to find.
I went to the cardiologist and they ordered me to wear a Holter monitor (portable EKG) for two weeks to make sure that the heart rhythm spikes I was experiencing were not an arrhythmia. Of course, after I got the results of the Holter monitor everything was normal.
They did see that my heart rate was spiking, but the electrical impulses were normal. I was told that they didn’t have any idea how to proceed. He was going to consult with other cardiologists to see if any of them had any ideas for what could be wrong with me.
A few hours later I got a call from him to tell me that they were going to order a tilt table test to check for orthostatic intolerance. Within two minutes of the start of the tilt table test I knew that it was positive. I could feel my heart rate jump 30 beats per minute right away.
After a few weeks I got the official diagnosis of POTS and my life completely changed overnight.
I’ve had the official diagnosis for almost three years now and every single day is still a struggle. Learning how to be disabled has been difficult, but I hope to be able to accomplish everything in life that I want to do.
POTS Symptoms
- Lightheadedness/dizziness upon standing
- Racing heart beat
- Fainting
- Extreme fatigue
- Temperature deregulation
- Brain fog
- Headaches
- Insomnia/frequently waking up while sleeping
- Tremors
- Exercise Intolerance
- Excessive/lack of sweating
POTS Diet
- Eating smaller/more frequent meals
- Eating fewer refined carbs
- Eliminating caffeine
- Eliminating alcohol
- Increase sodium and fluids
- Drinking sports drinks
- Check for food intolerances
Exercise for POTS
Exercise is single-handedly the most important part of POTS treatment and recovery.
Unfortunately, it is also the hardest part of treatment.
The exercise that seems to work the best for me is strength training. Focus more on your legs and core. Use resistance bands and dumbbells.
Many times you can find exercises to do in seated or recumbent positions to combat the lightheadedness.
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POTS Accommodations:
I always have to tell myself that I don’t get any awards for not using accommodations.
I want to live my life as normally as possible and since I look young and healthy I am afraid people will judge me for using them. Here are some of the accommodations that I use on a regular basis.
- Shower chair
- Compression socks
- Wheelchairs
- Bed raisers
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Conclusion
Also, don’t be afraid to use accommodations or disability services when going out too. Airports, amusement parks, and voting precincts are among the places where POTS symptoms can make an appearance so make sure that you are doing what you need to do to be safe.
POTS is a debilitating chronic illness that completely consumes your entire life.
The important thing to know is that even though there is no cure, there are certain steps you can take to make it easier. I have been diagnosed for almost three years and there are still days where I feel completely overwhelmed and want to give up. I also have really good days where I feel like I can conquer the world.
The trick is to take it all a day at a time and keep fighting.
This article was about my POTS diagnosis and how I treat my illness.