Thursday, September 16, 2010

EDS+ Dysautonomia + Mt.Sinai ER ='s AWESOME!!

I guess, you weren't expecting my title to be so enthusiastic, considering it's contents.

I spent Monday afternoon in the ER due to dysautonomia craziness.
The weekend was fabulous, I had energy, low pain levels and felt like a relatively normal person. The exception was that I didn't really sleep the entire weekend. My body wouldn't let me, with the almost constant adrenaline rushes.Monday morning, I woke up feeling gross. I had the text-book EDS type 3 autonomic (over-response) issues. Upset stomach, dizzy, feeling faint, exhausted,sweaty, elevated heart-rate, palpitations and just all around gross. I decided to go into work and was sure I could make it through. Definitely thought wrong.

On way to work... barf! So that was the end of work,I knew it it wasn't going to get any better. Last time I felt that way, it lasted more than a week. My suspicions of an ANS disorder were totally confirmed at the EDNF conference. I figured I would be smart about it, and head to the ER to get myself sorted out. I ended choosing the hospital where my geneticist and GI specialist worked out of, figuring they'd already have some of my stuff on file. I went in, and didn't have to wait. Handed the triage nurse my OHIP card, my card from the hospital and the EDS info card form the EDNF.

The triage nurse was eager to take the card,do some quick reading and let me explain it to her. They got me a bed, and I saw the ER nurse to get vitals and blood work taken soon after. My HR was 114 and my BP was 138/96.My ECG synus rhythm came back irregular, and my WBC's were a bit elevated. I asked the nurse if the IV could at least be done in my hand, so I was free to move my arm and wouldn't dislocate everything. She said she'd try it, and also take a shot the blood-draw through the line too. She totally rocked it and did the it all in one shot! In the meantime, the Dr. was doing some quick EDS research and saw me shortly after. He asked me all about the symptoms, how it's normally treated and what I wanted to do. How awesome is that?! I ended up getting 1L of non-saline fluids and 50mg of Gravol through the line too. I had a little laugh to myself, when there were people thinking the world was over because of a sprained ankle. At one point asked an other nurse if there were any extra pillows I could use to position my body, so everything wouldn't dislocate. They didn't have any, but offered me as any blankets as I wanted, and we'd fold them up. After I got myself positioned, I had a bit of a nap and woke up to realize that my fluids were only 1/3 done. The fluids and blood draws took forever...EDS thing? A bunch of text message conversations and a nap later, my fluids were done and I was ready to go home. I finally felt human again and was ready to jet. They took my vitals again and my HR got back down to 65 and my BPwas 111/63. The Dr. thanked me for my patience, and for knowing about my stuff with EDS.

Not once in the 5ish hours that I was there, did I have to fight, make any request more than once or try to prove myself. I was listened to, taken seriously and treated with such awesome care. That was the first time in 13 years of dealing with this EDS mess, that any of this good stuff has happened. It was incredible, and may have renewed my faith (just a little) in the western medicine community. I had the best sleep of my life that night!!

The next day, I ironically had an appointment with Awesome GP so we got to catch up on everything post-conference. He was really interested in the whole thing and I think finally understood the complexities of EDS and autonomic issues. I gave him a print out of the Sleep/ ANS disorder discussion from the conference, he seemed pretty excited to check it out and learn more.

So when a cardiologist refuses to see you and says "there's nothing wrong with you, you were fine last year, so you're fine now", your body will eventually prove them wrong. Synus rhythms don't come back irregular for nothin'.

Know that despite all the horrible experiences we encounter day in and out with doctors and other medical professionals, there are some awesome ones out there and they kick ass!

Thank-you Mt.Sinai ER!!!

"No one can make you feel inferior without your consent"
(Elanor Rosevelt)


  1. I'm so happy for you Nicole! I would have gone in there very apprehensive about how they would treat me and ready for a fight! So glad you didn't have to :D And yay for the conference and educating!