What It’s like living with POTS

I was diagnosed with POTS seven years ago. It is a genetic condition. I was able to be diagnosed so young because of my sister who was a teenager at the time, which is when POTS starts to show symptoms, got diagnosed. POTS isn’t rare, it is RARELY diagnosed. A study found 1 in 100 teenagers has POTS. The symptoms are often misdiagnosed or ignored, saying it is anxiety, depression, or laziness.

When Do Symptoms Appear?

POTS ‘s symptoms appear with puberty. They are often worse towards the end of puberty (15-25). Before puberty, I never experience any symptoms that raised an alarm.

How Is POTS diagnosed?

To get diagnosed, you do a tilt table test. They basically strap you onto a table Frankenstein-style and take your blood pressure and heart rate while you are tilted at certain angles. It is normal for the patient to eventually faint (like we do when we stand for a long time), my sister (17 at the time) lasted only 2 minutes before she passed out. I was 11, so my POTS wasn’t as bad that I fainted before. So the test lasted 45 minutes. It was one of the worst times I have ever felt. I was hot, extremely nauseous, dizzy, shaky, and my heart was racing. I get nauseous just from getting my blood pressure taken because I can feel the blood pumping, for the test I had my blood pressure taken for 45 minutes. After the test, they found my blood pressure or heart rate wasn’t taken well enough, so I did the test again. Afterward, I got a big ass ice cream cone.

Symptoms?

There are so many symptoms that I am just gonna make a list.

  • Dizziness/ Lightheartedness
  • Nausea
  • Temperature deregulation
  • Fainting
  • Tremors
  • Brain frog
  • Bad circulation-which results in purple legs
  • Excessive sweating
  • Adrenaline rushes
  • Fatigue/Exhaustion
  • Water retention
  • Inability to stand for an extended period of time
  • Abnormal heart rate
  • Abnormal blood pressure
  • Blurred vision
  • Intolerant to exercise
  • Diarrhea
  • Chest pain
  • Headaches
  • Insomnia

Treatments

There is no cure for POTS, only treatment to help manage symptoms. They suggest at first to drink a lot and consume a lot of salt. But the only thing that was effective for me was medication. I take A LOT of medicine, so I may write a separate post about them. I also take supplements and I’m on a restrictive diet (I can also do another post about it). Most of the medicines are not made to be used for POTS, so the doses can be high compared to its usual dosage.

Daily Life

My everyday life is a struggle. I MUST have my meds, or I cannot function. I take a long time to get ready because I have to take a break after every task like brushing my teeth, taking clothes off, putting clothes on, brushing hair, and eating. I opt to shower at night because of how much energy it takes. I even sit down while I shower. My schedule usually only consists on one activity a day (shopping, work, hang out with friends, going out to eat, doctor’s appointment, etc).

Spoon Theory

The management and planning of how much energy we have and how we use it is with “spoons”. Each spoon represents an amount of energy. Everyday you have a certain amount of spoons, and the more amount an activity takes, the more spoons to do the activity. Like getting changed will take 1 spoons, showering is 2 spoons, going to work is 6 spoons, and a concert could be 14 spoons. Since we get only a certain amount of spoons a day, for big activities we need to “save up our spoons” and rest the day(s) before the activity and the day(s) after the activity.

Tips for Living with POTS

  • Air conditioning is your BFF. If you don’t have access to A/C in public, buy a fan that plugs into your phone
  • Carry paper towels/napkins to wipe off your sweat
  • Sit while showering, brushing your hair, brushing your teeth, applying makeup, and cooking
  • Put your feet up with a pillow when laying down or another chair when sitting
  • Shower at night- allows rest afterward, it air dries so you don’t have to use a blow drier
  • Wear sport bras- it is more comfortable and better to wear when you sweat a lot like me
  • Record lectures- ask if you can get a copy of the notes and/or record the class in case you have to miss class or get brain fog
  • Compression tights and socks- helps blood circulation
  • Get a handicap parking pass- ask your doctor and see if it is possible

Comment below if you have any other tips. I would love to hear them!

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