Duke Syncope & Dysautonomia Appt

Had a good appointment at the Duke Syncope & Dysautonomia Clinic today! Being honest with doctors FullSizeRenderis not something that comes easy to me, but I think I did pretty well today. My blood pressure readings are looking MUCH better than they have in months prior! That is likely due to super high doses of Midodrine, & Fludrocortisone, as well as 12mg of Prednisone daily…but it is a good thing regardless. They were concerned with my heart rate, though. Despite taking all my Dysautonomia meds (including Bystolic, my beta blocker) & getting IV infusions, I am still experiencing significant tachycardia, especially upon postural changes. My orthostatic vitals today, for example: 113bpm lying down, 129bpm sitting up, 147bpm standing. Now, those numbers aren’t terrible…I’ve definitely seen worse, this week alone! But Jenn was not happy with those numbers & said that kind of increase upon sitting/standing is not good considering the medications should be taking care of those dramatic spikes. She was also a bit concerned because that was simply standing still, not trying to walk and carry on about the day. We agreed that the Bystolic is not the right med for me as it drops my blood pressure too low (causing me to need more Midodrine which I already take an overdose of each day)…so she is putting me on a new med called Ivabradine. I’m really excited because Ivabradine helps lower heart rate without impacting blood pressure! Only problem is it’s a med generally used for heart failure patients, so we will probably have to fight with insurance to get it covered. But Jenn says she’s confident we’ll win the case, considering I’ve tried almost every other beta blocker out there and my symptoms are so severe! Really hoping it is a quick process getting it approved, as I am super excited to try…especially because, once we finally get my heart rate under control, I get to begin physical therapy! IMG_9020Jenn referred me today to a PT who is familiar with Ehlers-Danlos Syndrome & POTS! Nicole sees him and really likes him. Apparently, he understands the pain, dislocations, fatigue, weakness, etc. that comes with EDS & how to best work with/through such symptoms. Really looking forward to it! Also while Mom & I were at Duke, we met a fellow Zebra who was using a wheelchair with SmartDrive. We ended up talking with her about it (& other things) for a good 15 minutes, and on the way home from the hospital, mom decided we will have a fundraiser because I need one, too! More on that later.. 🙂 Now for a nap– that appointment left me exhausted!

 

 

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