Thursday, October 19, 2017

My POTS Story: How an EDS Diagnosis Led to POTS

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I remember sitting in the shade as a kid while my siblings ran around and played in the sunshine.  I had no interest in joining them because the sunlight made me feel "funny."  I didn't know it at the time, but it was the first symptom of Postural Orthostatic Tachycardia Syndrome or POTS.

Since I was a teenager, I've had chest pains.  They're sudden and sharp, and they feel like I'm being stabbed in the heart.  After mentioning it to my doctor, she ordered an echocardiogram and an EKG, both of which came back normal so I wrote it off as me being weird again.

My POTS Story: How an EDS Diagnosis Led to POTS

When I was 18, I went to a two day Christian music festival and camped in a tent with some of my friends.  It was hot and sunny the whole time, and I was absolutely miserable.  I ended up sleeping in the tent most of the time, so dizzy and nauseous that I could barely stand.  When I was able to get out and listen to some of the concerts, the sun was so bright that I couldn't see and I got a headache from squinting so hard.  I thought I'd be fine when we got home, but a few weeks later, I was still so fatigued that I couldn't keep my eyes open and not feeling well at all.  I went to the doctor who diagnosed me with a severe chronic magnesium deficiency.    

POTS Warrior shirt from Sunshine and Spoons
See the whole "POTS Warrior" collection in the Sunshine and Spoons Shop

I have never fainted, but I've always had issues with being dizzy and lightheaded.  I black out easily and it usually takes me a minute to feel okay again after I stand up.

With each of my four pregnancies, my symptoms got worse.  After my fourth baby, Davy was born, he had a host of medical issues so my own health got put on the back burner.  But by the time he was a year and a half older, he was doing much better and even got his feeding tube removed.  I realized that it was time to figure out what was going on with me.

My POTS Story: How an EDS Diagnosis Led to POTS

I wrote down a list of my symptoms which ended up being two pages long and included hypermobility, joint pain, dislocations, subluxations, back pain, muscle pain and spasms, GI issues, chronic fatigue, chronic pain, headaches, a severe heat intolerance, an inability to regulate body temperature, easy bruising and scarring, dizziness, brain fog, and more.  I scheduled an appointment with my primary care doctor and began researching my symptoms so I could go into the appointment prepared.

Dysautonomia Warrior shirt from Sunshine and Spoons
See the whole "Dysautonomia Warrior" collection in the Sunshine and Spoons Shop

One of the conditions that caught my attention was Postural Orthostatic Tachycardia Syndrome.  I added it to my list of possibilities and even took the poor man's tilt table test at home.  The results definitely showed that it was something worth looking into.

When I saw my doctor, she took one look at my list and referred me to a neurologist.  I asked the neuro doctor about POTS and she scheduled me for a tilt table test, the standard test for POTS.
The day of the tilt table test, I woke up feeling unusually good.  The elevators from the parking garage to the clinic didn't even make me feel dizzy like they generally do.  The test went well, which surprised me.  Not surprisingly, the results came back normal and negative for POTS.

But You Don't Look Sick shirt from Sunshine and Spoons Invisible illness
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The neurologist ran a few other tests as well, which all came back normal so she referred me to a rheumatologist who was booked out about six months.

Instead of sitting back and waiting for my appointment, I kept researching, hoping to find some answers.  And then, I posted a picture on Instagram of Davy's hypermobile ankle and someone asked if he had Ehlers Danlos Syndrome.  I started researching it and realized that it fit both his and my symptoms perfectly.  At his next genetics appointment, I asked the geneticist about it and it was like a light went on in the room.  He and I were both unofficially diagnosed that day.  Later that summer, Davy, two of his older siblings, and I were all diagnosed with Ehlers Danlos Syndrome.

My POTS Story: How an EDS Diagnosis Led to POTS

I threw myself into setting up specialist appointments, therapies, and more and for a while, mostly forgot about POTS.  But it stayed in the back of my mind and once things slowed down on the medical front, I brought it up to my EDS doctor.  She agreed that despite the results of the tilt table test, (which can be wrong!) my symptoms definitely sounded like POTS.  EDS often comes with POTS as well so it made sense.  She diagnosed me with it that day.

My POTS Story: How an EDS Diagnosis Led to #POTS: 

You can learn more about POTS here.

I'd love to hear your POTS story!  Please feel free to share it in the comments.

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