POTS: Postural Orthostatic Tachycardia Syndrome
What is POTS?
POTS stands for Postural Orthostatic Tachycardia Syndrome. It is a disease that falls under the dysautonomia umbrella, meaning that it is a dysfunction of the autonomic system. People who have this condition often experience a sudden drop in blood pressure upon standing. In order for the body to compensate for the low blood pressure, as well as the blood pooling into the lower extremities, the heart will increase in rate by at least 30 beats per minute.
While POTS is not widely studied or understood, people like myself become advocates to spread awareness. You can learn more about this condition by watching the video below. Keep reading to learn about how I was officially diagnosed.
How I Got Some Answers
After years of being told that I have anxiety and knowing something wasn't right, I stayed the course for SSRI treatment to control the multitude of panic attacks I was having daily. Seemingly enough, I kept having panic attacks with and without stressers.
The vertigo and tunnel vision wasn't enough to convince anyone that there was anything else wrong. The thyriod function was always normal. The extreme fatigue, exercise intolerance, and muscle weakness didn't trigger anything in my doctors minds either.
Hitting rock bottom for a sober person had to happen and I feared the day something happen. That day came on a hot July day in 2015.
I was at work, driving no less, waiting in the stand still beach traffic that was backed up for miles. Then it happened. My hands and legs started shaking uncontrollably as if I had 10 double shots of expresso in a single setting. I was weak. My vision was blurry. All I could do was pull over and call my boss for to have someone drive me the rest of the way back.
Once I arrived to work, I was having trouble relaxing. I was still shaking and my boss was worried. I refused medical assistance. I just wanted to go home.
Vertigo set in and the room was spinning. I was holding on to the floor of my livingroom begging someone to save me. I needed assistance to get to the bathroom, to take a shower, to cook dinner, to get dressed, and basically everything else you can imagine.
It happened on a Friday, so the soonest I could see my doctor was Monday. I waited out the weekend and when Monday came around, I still didn't have any answers. I was devestated. They wanted me back on a SSRI.
Granted, the SSRI, did help with the vertigo somewhat, but not entirely. I was still very weak and needed assisstance for anything and everything.
I was convinced that there wasn't anything anyone could do for me. I tried to suck it up, but I kept falling.
By the time January rolled around, I had it with my medical staff. Through a very good friend, I was recommened to a Nurse Practioner who had saved her life. I went for my initial visit and she wrote down on a piece of paper "Dysautonomia". She told me to look it up and referred me to a Cardiologist and Neurologist. It would be a few months before I could see either of them, but in the meantime, I had something to go by,
How I Was Officially Diagnosed
A few days after I saw my most favorite Nurse Practioner ever, we got a call that my uncle had had a major stroke and wouldn't make it. My mother and I went to he hospital to see him. We walked into the hospital and ran into some family. While standing in the hallway speaking to relatives, I began to experience what I know now as a vagal response. I became extremely hot and started ripping on my sweater. Suddenly, I began to get extremely cold. I was shivering uncontrolably and couldn't get my sweater back on. Then I went extremely hot again!
Someone ran around the corner with wheelchair and ran me to the ER. They took me straight back to the cardiac hall and into a room. I was hooked up to monitors and given 2 bags IV saline. My blood pressure was staying 80-90 over 40-50. My heart rate resting was staying around 50-60 bpm. The doctor performed orthostatic blood pressure and heart rate evaluation. Upon standing, my heart rate increase to over 100 bpm and steadily increased to 125 and he had me lay back down.
The ER doctor said that my symptoms were inline with dysautonomia, but I would need more tests from my cardiologist. He wrote extensive notes in my chart that led to my official diagnosis.
After almost a year after my episode at work, I got to see the cardiologist and he ordered an echocardiogram, 30 day halter monitor, and tilt table test. On the one year anniversary of the work episode, my official diagnosis appeared when I experienced another vagal response and fainted on the tilt table. I made it 15 minutes before my blood pressure dropped to 70/30 and my heart rate jumped to 151 bpm.
I was sweating profusely, shaking uncontrollably, my vision was blurry, and I couldn't catch my breath. It was a scary moment, but my nurse was fantastic. She walked me through the entire process so that I knew what to expect.
Watch the video below to learn more about the tilt table test and how it works.
Learn About the Tilt Table Test Here
We've come to a crossroads in my medical treatment. I still suffer daily with muscle weakness, chronic fatigue, exercise intolerance, unable to stand more than 2-3 minutes, vertigo, and PVC's and PAC's. I can't stand to prepare dinner, wash dishes, laundry, etc. Yesterday, my doctor advised me to get a disability lawyer. She said working outside of the home was not an option for me and neither was driving for that matter.
She is sending me to a dysautonomia clinic to treat me the rest of the way. The closest dysautonomia clinic is 5 hours away, so now we wait.
If you find yourself without answers to whatever may be going on for you, take my advice and keep pushing for answers. Sometimes our doctors of 10+ years have no idea and we have to take chances with a new doctor.
Be your own advocate!