A Day in My Life with POTS (Postural Orthostatic Tachycardia Syndrome)

Although every day of my life is different, I have a general routine I do to manage my Postural Orthostatic Tachycardia Syndrome. From waking up in the morning until I go to bed at night, my life revolves around keeping my high heart rate and other symptoms at bay. Join me this week as I share with you a day in my life with Postural Orthostatic Tachycardia Syndrome. #lifewithavent #pots #adayinmylife
When I wake up in the morning, the first thing I do is take a beta blocker called metoprolol. My heart rate is really fast in the morning. This means I have to be extremely careful when moving because my high rate causes dizziness, loss of balance, headaches, loss of coordination and muscle weakness. Metoprolol works by lowing my heart rate. This means, once the medicine starts working, my heart rate decreases and makes it safer for me to move around. The medicine takes about 20 minutes to work.
While I wait for the medicine to take effect, I disconnect from my IV nutrition called TPN. For more information about my daily routine regarding TPN, please see the video a day in my life with Mitochondrial Disease: • A Day in My Life with ...
Once my TPN is disconnected, I will put on my compression stockings. The compression stockings I wear are high compression waist high stockings. The compression stockings work by preventing blood from pooling in my legs and ankles. One issue with POTS is when a person with POTS stands up, blood will drain to the legs, ankles and feet. This causes less blood to be returned to the heart. With less blood returned to the heart, the heart begins beating even faster to try to compensate for the lack of blood return.
The extra pressure from the compression stockings lessens the blood pooling in my legs and ankles and helps blood return back to my heart. This, in turn, helps prevent my heart from racing out of control.
Once I have my compression stockings on, I then begin my airway clearance routine for my tracheotomy tube. For more information of my daily routines regarding my tracheostomy and ventilator, please see the video a day in my life with a ventilator • A Day in My Life with ...
Once my airways are clear, it is time to cautiously get out of bed. I have to be very careful when leaving my bed. In the mornings if I move too quickly I develop severe chest pain, dizziness and my muscles may give out. Also, due to mitochondrial disease, my muscles are usually very tight and sore after a night of sleeping.
Once I manage to get out of bed, it is time for breakfast.
For breakfast, I usually drink lots and lots of fluids. Although I run TPN over night which provides IV hydration, I am still very dehydrated in the morning. I drink about 3-4 cups of tea and have a large bowl of soup for breakfast. The soup I eat is homemade and is very high in salt. Eating lots of salt throughout the day helps my body retain fluids, which in turn keeps my blood volume high, which in turn helps prevent my heart from racing out of control.
While sitting down, I try not to have my feet hanging down. Instead, I sit with my legs criss-crossed or propped up on the table. I know it is not very lady like to put your feet on the table, but keeping my legs elevated prevents blood from pooling in my legs. If I sit with my legs hanging down, it is hard for blood to return back to my heart. I become very light-headed, will develop a fast heart rate, will have tremors and a headache, become dizzy and will feel the need to lie down. For this reason, I try to keep my legs elevated as much as possible.
After breakfast, I am usually exhausted. I go back to bed and lay down for a few hours.
When I get out of bed, it is usually time for lunch. For lunch, I usually have tea, soup and fruit. Again, the soup is homemade and contains a lot of salt. I drink about 3-4 cups of tea and several glasses of water to keep hydrated.
After lunch, I usually go back to bed. In the afternoon I sometimes listen to KZbin videos, listen to the Bible or catch up on correspondence. Frequently though, I am too exhausted to do anything and often sleep for several hours.
After supper, I often work on KZbin videos, read the Bible or check social media.
Around 9 p.m., I start getting ready for bed. One task I have to do is set up my TPN. Around 10 p.m., I get ready for bed by brushing my teeth, changing my clothes and lie down to sleep. Then it is lights out for the night.
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