I am a Potsie!

     Hi all, so many of you do not know this about me, but I am Potsie. "What is a Potsie?" you ask.... Well its a group of people who suffer from POTS. I happen to be one of them. Up until now I have not gone public about my condition. To be honest I have not yet wrapped my head around it. I was embarrassed and unwilling to except this as the new me. Since Dysautonomia awareness month is October I figured it was time to share my story with you all.

      First off What is POTS?

     POTS is an acronym for Postural, Orthostatic, Tachycardia, Syndrome. Pots falls under a form of dysautonomia. Like all dysautonomias , POTS is characterized by dysfunction of the autonomic nervous system. The autonomic nervous system controls many "automatic" functions like blood pressure, heart rate, blood vessel and pupil diameter, movement of the digestive tract, and body temperature.

https://www.youtube.com/watch?v=ch6ipV3M4yo
    
 Symptoms:

     One of the main symptoms of POTS is orthostatic intolerance. This is because the autonomic nervous system is not functioning correctly. Constriction of the blood vessels that normally occurs during the sitting to standing transition are decreased or not there at all. The vessels not constricting properly leads to blood pooling in the lower extremities, resulting in a shortage of blood to the brain and heart. The heart beast faster trying to make up for the lack of blood. This causes tachycardia. Usually a POTS patient will have a spike of 30 or more beats per minute from sitting to standing. The shortage of blood causes dizziness, light-headedness, and potentially fainting. 

     Symptoms seen in POTS are:
* fatigue
* headache
* heart palpitations
* exercise intolerance
* nausea 
* brain fog 
* shaking
* syncope
* coldness and/or pain in extremities 
* blood pooling
* chest pain
* shortness of breath
* hot flashes 
* abnormal sweating 

     POTS can strike at any age, gender, or race but, it is most often seen in women of child bearing age. (15-50)  In fact 80% of people who have POTS are female.

     The cause of POTS is not always clear. However it is thought that viral illnesses such as Lyme or lupus, pregnancy, trauma, or surgery could be the cause. Many often have symptoms begin after such. Sometimes no underlying cause can be found. Many suffer from POTS but still little is known about it. It was first discovered in 1993.

Treatment:
     Some treatments are medications such as Midodine, Fludrocortisone, or beta blockers, increased salt intake and drinking lots of fluids. Some POTS patients have to get I.V. saline infusions.

          I was first diagnosed in March of this year after many doctor appointments and un-answered questions. I started having symptoms years back not knowing it would lead to this. I would get light headed,  very dizzy, short of breath, chest pain, and palpitations. Many doctors just ignored my concerns and said That I just had anxiety and prescribed anxiety meds. I knew something wasn't right so I continued to try and find answers. Every time being told it was just anxiety and not to worry.  Summer of 2016 I fractured my right foot and had to stay off of it for a while as it would not heal. Once I started to get move active again. I noticed that I couldn't walk 10 feet without shortness of breath. I had a few black out episodes which was blamed on dehydration.  I was a super active person before the fracture so all this struck me as odd. I started to become aware of my heartbeat and noticed it was faster than normal. I made an appointment with my new primary care doctor in Nov. She took my concerns seriously and ordered a ekg. It came back normal. Then she had me wear a halter monitor. It showed periods of tachycardia. beats up to 160 per minute. She referred me to a cardiologist who ordered more tests. A VQ scan to rule out blood clots, and a stress echo. The VQ scan was normal. During the stress echo he noticed that my Blood pressure went dangerously low and my heart rate spiked during the transition to standing from sitting. He stopped the stress echo after 2 minutes of treadmill walking because my heart rate got too high. That was it I had my diagnosis. I was so happy to finally have a diagnosis and a cure! I did not know what POTS was. I never heard of it so I assumed it was a simple take this and boom my life was back! Then he said " I wish I had better news for you or that I could go in there and fix it but I cant." He proceeded to tell me that there was no simple fix, no silver bullet. He prescribed a beta blocker to keep heart rate down and told me to up salt and water intake and sent me on my way. I took the news very hard. Became shut down. I just wanted to be able to run with my child, take the dogs for hikes, go on dates with my husband, and just be how I used to be. I tried the beta blocker, than another, than another. Every time my blood pressure would go way too low. My cardiologist said he couldn't offer anything else so sent me to a specialist. More tests and meds I couldn't tolerate. I am in a better place mentally now but still have my moments of despair and anger. I desperately want my old self back but I know I am still me and POTS didn't change that. As of now I drink banana bag I.V. solutions on really bad flare days and I increased my water and salt intake daily. Some days are better than others. I am learning to adapt to this condition and learning my limitations. I have symptoms daily and have had to miss out on a lot of things. Things I once enjoyed I can no longer do but, I know "this too shall pass!" At first I felt defeated but now I know I will defeat POTS.  I may always be a Potsie or I may not but I know for now, I am going to fight, be happy, and enjoy life! I know sometimes this will be tough but I also know I am stubborn as nails and will push through!

Til next time xoxo!
 

I posted this picture on social media. Everyone seen a  happy mom with her little girl and dogs,and that is true. What they didn't see is this mom who had to stop every 15 feet to catch her breath, trying to hide her symptoms from her child. They didn't see my pounding heart, and the blood pooling in my feet causing them to be blue. They didn't see the pain or dizziness I hid the entire time so that we could enjoy the beach as a family. They didn't see that it was almost dark because, by the time I felt well enough to go it was almost night. Invisible illnesses are there and real. Just because you do not see it does not mean its not there. Look deeper and you will see.  Be kind to others. You never know what battle they are facing!