My whole life I have struggled with syncope, or passing out. During these episodes my blood pressure drops and my heart rate skyrockets. While I have experienced this for many years, it wasn’t until August I finally received a diagnosis: postural orthostatic tachycardia syndrome or POTS!
According to doctors, POTS is a type of dysautonomia* that is defined by “orthostatic intolerance”, which means when a person stands up, a large amount of their blood pools in their legs instead of circulating back up through their heart. While blood pressure decreases, their heart rate goes up. A healthy individual usually has a slight increase in heart rate, by about 10-15 beats per minute, within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats or more per minute for adults. I wore the Zio Heart Monitor for 48 hours. Over the course of two days my heart rate was recorded at >190 multiple times after standing indicating a severe case of POTS.
In order to be diagnosed I went through a battery of other tests with a cardiologist. I had a stress test in which my heart rate elevated to 202bpm, a tilt table test which resulted in my blood pressure dropping to the low 80s/40s, and an echocardiogram. Luckily my echo was normal, showing no structural defects.
POTS can be extremely dangerous. My heart rate averages 100bpm and is frequently much higher. I have made some life style changes and medication changes to deal with the orthostatic tachycardia and hypotension, but still have syncopal episodes and have hit my head multiple times. First, I am now on a low dose beta blocker three times a day. Most importantly, I always sit up on the edge of the bed for an extended period of time before standing up. Next, I wear compression stockings – especially when walking a long distance. I take salt tablets in the morning and salt my food. Lastly, I drink a LOT of water. But because of my high ostomy output that causes severe dehydration, I have to get IV hydration too.
I have a home health nurse that comes twice a week to access my mediport and hook me up to a special kind of fluid called lactated ringers. They have added supplements, like potassium and glucose to help with my malabsorption issues.
The process takes about 5 hours total. I simply sit up in bed while the fluids rehydrate me. I do activities such as drawing and blogging, or when I’m feeling bad I’ll just nap.
The fluids help immensely with my symptoms. Before receiving a bag of lactacted ringers my heart rate can be 130-150bpm and I can feel lightheaded, weak, and shakey. Then I have the fluids infuse and my heart rate will resolve to 90bpm and I feel better.
I am very thankful for finally having a diagnosis, although the symptoms are hard to manage sometimes.
*Dysautonomia is a term that refers to group of conditions that affect the automatic nervous system. October happens to be Dysautonomia Awareness Month! If you have any more questions please visit the contact page.