Autonomic Dysreflexia Isn't Pretty - Part I

Updated: Nov 4, 2019

"But I've never had panic attacks before!"

Yep, if you have autonomic dysreflexia, this might be a sentence you've told someone. When I relapsed with Guillain-Barre Syndrome, I was in the lowest headspace possible. I was depressed to be back in the hospital and my resolve to fight was at an all-time low.


One day I was sitting in my hospital room and told my husband that I really wasn't feeling well. I felt hot, in pain, like my blood pressure was through the roof, and ... like I was dying. There is no other way to explain it.


My husband, Evan, was a chief resident in Urology at the time of my diagnosis so needless to say, things in medicine didn't shock him much. He's trained to remain calm in stressful situations. But in this moment, it started to unravel some. He immediately looked at me as I couldn't speak. It was an out of body experience and I could only cry. As tears ran down my cheeks he kept asking me how he could help and what was wrong.


He immediately took my pulse and without saying anything I could tell it must have been uncomfortably fast. He paged for the nurse multiple times and they didn't seem to get the gravity of the situation. Finally, he told them he immediately wanted the attending physician in our room and NOW. When the Doctor came in, I was rather exhausted. My first autonomic dysreflexia episode was coming to an end and I was drenched in sweat.


They had taken my blood pressure and it was 200/160 ... not good. The Doctor didn't really listen to what had happened and said she wanted to put me on panic attack medications. Now don't get me wrong, I am an anxious person by nature, but I had never suffered panic attacks and furthermore, I knew this wasn't a panic attack. Something had happened to my body that was unlike anything I had ever experienced.

Before I go any further, I'd like to make a big caveat. My healthcare personnel throughout my GBS journey was 99% positive. We had Doctors, nurses, physical therapists, and occupational therapists that literally brought me back to life. I am forever grateful for their kindness, their compassion, and their patience. This was probably just the wrong day or maybe she was young and not aware of GBS very much. That's actually the most likely reason and for that, this is exactly why I type these blogs. For all to learn.

Fortunately Evan had an idea as to what I had experienced (you have to understand that when you've been caring for someone with GBS, you kinda become an expert. We had read every medical study (albeit there aren't many since it's rare) and he questioned what she thought about my episode aligning with autonomic dysreflexia (something common with spinal cord patients with bladder issues). We refused taking panic attack medications and knew another physician would be on call within 24 hours for a second opinion. Within a couple hours another more senior attending came and without hesitation and with 100% certainty, diagnosed me with something I would now have lifelong: autonomic dysreflexia.


Sure enough, I was diagnosed with another horrid syndrome, on top of the GBS. It was frustrating and, oh yeah, I realized I forgot to ask the Doctor ... what the he double hockey sticks is autonomic dysreflexia?


Turns out, it has remained my enemy even 5 years later...