The Aftermath of the Holidays With EDS and POTS

For many people the holidays are full of fun and excitement and leaves many in happiness and joy from the recent time spent with family. My holiday experience was just the same only with a few complications.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The day before Christmas Eve was full of shopping for baking supplies and even picking up a couple last-minute Christmas presents. I only suffered the occasional dizzy spell and hip dislocation, and I continued to push forward.

Christmas Eve I woke up feeling a bit more weak than the day before with even more to do. On the roster for the day was baking pies, cookies, fudge, pretzel mix, Rice Krispie Treats, and marshmallow wreaths. We also had the whole family over for lunch and then church that evening. I went through it all pretty well and tried not to focus on the throbbing in my head and bones and the dull aching in my chest. I somehow survived baking until 5 a.m. on Christmas.

Christmas Day itself was full of lots of fun family time and an abundance of presents to be opened. I tried my best to keep from laying on my uncle’s couch and sleeping throughout the day.

The aftermath of the extravagant holiday left me in the ER on Wednesday the 28th. I had woken up that morning with a blinding migraine and my hypovolemic shock ruling my day. The second time I woke up I knew I couldn’t handle it. I could barely stand up on my own, so I told my mom, and we headed down the street to the hospital.

As soon as the receptionist heard “chest pain” upon my arrival, I was put into a wheelchair and marked as “high priority” even though I knew why my chest was acting up. Thank you, POTS. I was put in the room equipped for the possibility of a heart attack and had an EKG done that came out perfect. I was really nervous to see the doctor and prayed he wouldn’t think I was looking for drugs. I really was in horrible pain that had knocked me off my feet.

Thankfully, he read the protocol letter from my team of doctors at the University of Iowa Stead Family Children’s Hospital and believed every symptom. He even knew of Ehlers-Danlos syndrome, as well as postural orthostatic tachycardia syndrome (POTS), which left me relieved.

I was given an IV in my least dehydrated vein and pumped with 2 liters of saline and given doses of medications I needed over a few hours. I walked out feeling as great as I can for my illnesses and just a bit tired from the meds. They told me to rest for a few days and they’d pass on my report to my main specialist doctor in Iowa City.

Since that trip I’ve realized even more limitations and learned I really need to listen to my body. I was fighting through the holidays because of my family, without thinking of myself. In my head I told myself I didn’t want to be the “downer” of Christmas, but I learned that’s OK. My family would have understood I could not do it all. We’re now looking into getting weekly IV saline transfusions and possibly a port or PICC line to help with my POTS.

I hope you all had a wonderful holiday filled with the best health you could be in! I’m happy to say that despite the later consequences I had a wonderful Christmas! I’m praying for a new year with new medical discoveries and better treatment plans! Happy Holidays!