Stop! I have POTS!

Having a relatively unknown chronic medical condition such as postural orthostatic tachycardia syndrome (POTS) can be very frustrating while in the hospital. With POTS, my blood pressure sky rockets, and my heart rate becomes extremely fast upon standing. At rest, my heart rate and blood pressure are normal or only slightly elevated. Unfortunately, medical staff see my normal blood pressure and heart rate at rest and withhold my beta blocker--a drug used to lower heart rate and blood pressure. This is all fine and dandy, but if I sit up or attempt to stand up, my heart rate can soar to 150-190 beats per minute and my blood pressure can spike to 180/110. The purpose of taking the beta blocker is to lessen the wide swings in blood pressure and heart rate. Unfortunately, medical staff can never seem to grasp this concept.

Today, physical therapy came to my room to rehabilitate me back to my state of health prior to being hospitalized. (I have to chuckle because I spend most of my time in bed while at home. So, when I am hospitalized and spend most of my day in bed, it is no different than when I am at home.) Of course, they came to my room during the early morning rays of the sun. The physical therapist wanted to take a walk around the hallway. This is a very bad idea on so many levels.

Mornings are the absolute worst time of day for my POTS. My heart rate and blood pressure tend to be extremely high in the mornings and gradually lessens throughout the day. Additionally, I wear compression stockings which provide a high amount of pressure on my legs to keep blood from pooling in my feet. The more blood that is able to return to my heart, the less severe the POTS is. (In the hospital, I do not wear my stockings. It is usually too much of a challenge to work around all the monitors, IV lines and other equipment without getting the stockings snagged on something.) Also, being in the hospital means I am not able to drink as much as I need to maintain high blood volume. I drink about 4-5 times as much as a normal person does to maintain my blood volume. In the hospital, my fluids are usually restricted to what should sustain a normal person. This means I am usually very dehydrated. Additionally, being in the hospital means I am not able to eat my normal diet filled with lots of salt. Like drinking lots of fluids, eating lots of salt helps increase my blood volume, which leads to less severe POTS symptoms. Finally, fatigue plays a big part in my POTS symptoms. Lack of sleep or doing too much activity or simply being run down from stress can cause my POTS to be more severe.

So taking this all in to consideration, my physical therapy session was a waste of time. My nurse refused to give me a beta blocker this morning. Add in dehydration, low salt intake, no compression stockings, lack of sleep, lots of stressful tests and the early time in the day, I made it about ten steps before I felt as though I was going to pass out. Back to bed I crawled with a massive headache. Once in bed, my heart rate was 120 beats per minute, and my blood pressure was 140/100. My physical therapist said she would return again tomorrow for another session. Oh boy, I can hardly wait!