Tips for People Diagnosed with POTS after Covid 19 or Any Other Time

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A lot of people who recover from Covid end up with POTS.

What is POTS?

Postural Orthostatic Tachycardia Syndrome

It is not rare. It is just seldom diagnosed so people suffer and don't know why. 

POTS is a malfunction of the autonomic nervous system. Your autonomic nervous system controls everything that you don't think about. IE: breathing, digestion, heart rate, blood pressure, body temperature... It can manifest as problems in any of these areas. It may be too fast or too slow or flip back and forth. Symptoms include but are not limited to: dehydration, tachycardia, bradycardia, low blood pressure, high blood pressure, constipation, diarrhea, nausea, vomiting, passing out, lightheadedness and more. You don't have to have all of the symptoms and they may not be consistent.

Covid affects the neurological system. The evidence is loss of taste and smell being common symptoms. 

My daughter has POTS and recently shared some tips from her experience. She started suffering in middle school. We lived in Rochester, Minnesota so I took her to the Mayo Clinic for all of her medical care. Still, she remained undiagnosed until she was in her 20s. Her symptoms were so frightening that she was hospitalized several times to try to determine what was causing the symptoms. She has still managed to live a fairly normal life. 

Here is her advice written to someone who was recently diagnosed with POTS from Covid:

A part of me was in denial about your diagnosis. I really don't want you to have pots but I can't stop you from having pots. 

So to sum up 15 years of health education for you here are my words of wisdom.

•Pain management classes:

Even if you aren't in a lot of pain right now they teach you a lot. My parents became disabled when I was 7 and my health issues started when I was 12 so indirectly I learned from their pain management classes. 

(Mom here - My husband and I both attended pain rehabilitation at the mayo clinic. They teach you how to manage chronic pain with minimal medication. They encourage alternative therapies.)

•a breathing specialist:

I saw one for my migraines and in the past 10 years I've learned that you're breathing controls so much of your body. What you learn from a breathing specialist can be applied to a lot of pots episodes. 

(She is referring to breathing exercises to help manage POTS symptoms. This is different than respiratory therapy.)

•a nutritionist:

Your body's going to start reacting differently to a lot of foods and it can become overwhelming. Don't try and track it all by yourself if you can find a trustworthy nutritionist who knows what they're talking about It's a lot faster and a lot easier.

•physical trainer with heart condition experience

I see Dr Goodman the pot specialist at the Mayo Clinic in Scottsdale and he said there's no cure for pots or the damage that it's already done. The best chance is to stay preemptive and ahead of it. exercising is going to strengthen your body so you're nervous system and your heart don't have to work as hard. That being said I've also considered seeing a sleep specialist but I'm 27 and awkwardly stubborn 🤣 let me know if you decide to do that.

Lastly,

•Tight Clothes and Sodium

You want to go back to work and I think you can still do your job. It's just going to be a different approach. It's kind of like learning how to live again, tight clothing I love corsets and super tight workout clothes. I have a cousin who loves bodysuits anything that helps support your body is going to put less work on your heart and that's going to help a lot. The sodium helps you retain your fluid but for some reason when you have pots you don't retain it very well and so your sodium is going to help a lot. 

I'm Mexican and grew up eating Lucas and Tajin and so I like to get the beer salt in the liquor section and just eat it by itself cuz it's flavored. BCAs are excellent, I also rotate gatorade and Liquid IV. 

(Compression helps circulation. compression stockings and abdominal compression are recommended. Lots of salt and fluids are also recommended.)

That being said, avoid chasing a cure. Hope for accidentally curing yourself, but find peace in knowing you might not. 💙 Having POTs can be fun, scary but fun. 

Thank you for reading my novel 💖🤣

Susie again:

I hope you find these tips helpful. I wish I had known what was going on when she was 12 and this first started. It was scary. But she still managed to play football and golf and be very active in school and church. She is amazing. She also has to deal with ADD and Dyslexia. But she does it. She is a success. 

She was told that it was safer to play football than to run cross country because of passing out. If you pass out during football you land on turf which is soft and you are being watched so someone will know right away. She had to give up cross country running because of the possibility of passing out on a street or sidewalk and not having anyone around to take care of her.

I have Dysautonomia which is a more generic form of the same thing. I was told that I need 6-8gm of sodium per day to keep my blood pressure up. This is a new symptom for me. I used to have high blood pressure. But I was still encouraged to consume sodium for my Dysautonomia. I also need to drink a gallon of water every day. This helps with lightheadedness, low blood pressure and tachycardia symptoms. I have to take heart medication every day to slow my heart. Every patient is different so it is important to see a knowledgeable doctor and seek proper treatment. Not everyone can get in to see Dr Goodman. I see a heart rhythm specialist. He diagnosed and treats me. I use a rollator because I need to sit frequently. I cannot stand in lines.

You can have a happy life with a wonky nervous system.