A Neurological Symphony

Imagine listening to classical music at the highest decibal possible while spinning in circles.  Then run a 10k completely dehydrated and dizzy.  For many, this feeling is unfortunately an everyday event.  There is no option to turn the music off or sit down.  Our bodies are defying us as our autonomic system continues to malfunction.

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At the beginning of my Pots journey, I did not experience neurological symptoms.  Sure, I had an electrical shock or zap periodically, but it was not debilitating.  My main symptoms were low grade fevers, chills, joint pain, blood pooling, massive fatigue, heat intolerance (not all the time), tachycardia, and sudden food intolerances.  Foods with gluten would give me a rash on my face that would extend down my neck as well.  It took only three days of eating gluten free to see a significant improvement.  I had to implement food restrictions, reintroductions, and make a conscious effort to listen to my body as I still was undiagnosed.

Then November 7th, 2015 my knees buckled as I was standing with my husband.  In that moment, everything changed and I have not had a normal day since.  I am prone to blood sugar drops and I suspected that was most likely what I was experiencing.  I grabbed sugar as quickly as possible and sat down.  But all I could hear was the deafening chatter from those around me.  I told my husband I was not ok.  Still thinking it was a blood sugar issue, he walked me to the car.  I could not walk on my own.  My arms were heavy, my legs were wobbly, and my equalibrian was completely off.

Alot transpired over the next six weeks.  For one, I was finally diagnosed with Pots.  I was naive at the time thinking a diagnosis would also bring healing.  After eighteen days in the hospital (10 of those days at Duke), I learned alot about Pots.  The doctors at Duke were incredibly helpful.  I continue to deal with neurological sensations as well as uncomfortable pressure in my head.  The barometric pressure can make symptoms flare and go haywire.  I often feel as though someone hit me in the head with a bat, and I am living in those moments after where dizziness, ears ringing, constant spinning, and cognitive function is compromised.  Some days I cannot look at a TV screen, an iPad, or phone because it makes  symptoms worse.  All of my senses are heightened.  I have to ask my family to speak softly because it hurts to hear them talk.  Also, there are days it hurts for me to talk.

For many Pots patients, brain zaps, numbness, heaviness, and tingling  in extremities are just a part of everyday life. Migraines are often a problem for many Pots patients as they too are a form of dysautonomia.  It can be incredibly difficult to explain to others what our neurological sensations and symptoms feel like.  I am often at a loss for words as I try to describe the neurological craziness.   Yet it is so important to share as many struggle with these symptoms and believe they are alone.  You are not crazy even though what is happening in your body is crazy.  Below is a comprehensive list of symptoms pertaining to Pots.

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If there is any advice I would share with someone who suspects they may have pots, it would be to get a Tilt Table Test administered as quickly as possible.  Yes they are miserable, but I knew in less than five minutes what I had searched for eight long years to find. I finally had a diagnosis. Also, it is critical to find a doctor who really gets it.  A good doctor is priceless when it comes to Pots.  Finally I would encourage everyone to get plugged into a support group.  There are many groups on Facebook to join.  It is incredibly easy to retreat and isolate ourselves but doing so is to our own detriment.  Find your tribe!  You are not alone!  You are a warrior even though you may feel weak.  This is not the end of your story. ❤️

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