To make a long story shorter, a couple of years ago I started randomly passing out for seemingly no apparent reason. I’d already been diagnosed with Ehlers-Danlos Syndrome and Cubital Tunnel Syndrome; as I did my physical and occupational therapy to treat those two issues, I started passing out more and more frequently. At the time, I’d call them “very involuntary naps”. Even as a child I rarely ever napped, so I knew something was off. Thankfully, I’ve always had warning before these episode hit in full force. I’ve always been able to get myself into a safe position, but it was still massively interrupting my life.
Imagine going to the grocery store — on the way home you start to feel light headed. As you pull onto the same street as your house, your vision starts to intermittently blur. You pull in the driveway and find that standing up is difficult. Everything starts to feel wayyy heavier than it should. You try to walk to the back door to let yourself in, but you look kinda drunk while doing it and your vision starts to blur more often and stays blurred for longer. You have enough time to pour yourself a glass of water, and you make it to the living room. Once you’re halfway to the couch you realize you aren’t going to make it all the way to the couch, so you lay yourself down in the floor. You have time for a couple of sips of water before the glass becomes incredibly heavy and your vision starts blacking out. You lay down all the way and check your watch for the time and barely make it out. In about 45 minutes you wake up again, but you feel weak for the rest of the day. Now imagine that happening at random (minus driving, because now you’re afraid to drive) once a month, then twice a month, then once a week, then up to 3 times per week. It really wasn’t a fun time.
I bounced around to a few different doctors trying to figure it out. After a tilt table test at the local cardiologist’s I was given the diagnosis of Vasovagal Syncope (VVS). However, after responding negatively to the two classes of medications and a couple more appointments, I was shipped off again to Neurology since no one at the local office understood why I was passing out for 45 to 120 minutes at a time. I ended up doing an in-patient stay in an epilepsy wing of a hospital to make sure this wasn’t a more dangerous type of seizure. I came back completely negative for epilepsy, but I did get referred to a more experienced cardiologist and to a PNES clinic.
My new cardiologist took a look at my data from my overnight stay and knew what my other maladies listed in my chart meant. (I generally have to go around explaining half my chart to new doctors since, after all, the mascot for EDS is a zebra.) Immediately he was confident in diagnosing me with Vasodepressor Syncope, so confident in fact that he doubted going to the PNES clinic would be of use since I already go to therapy regularly. Unfortunately, I’d already been doing all of the recommended steps to try to manage my condition — aside from trying another drug which shocker didn’t end up working out for me either. I was, however, reassured and finally felt like I had someone on my team that understood what was going on and how difficult it is to deal with. He (the doctor) also informed me that I am no longer in the treatment stage so much as I’m in the management stage, because there is no cure. I just had to start learning how to really tune in with my body and figure out what the early warning signs and triggers are.
Six months later at my follow up appointment I had (have) a much better grasp on my triggers — now being able to better predict when a vasodepressor episode will come. Armed with this knowledge I decided to ask more about my condition. Was the diagnosis from my first cardiologist wrong? Why was I referred back to neurology again when I just ended up back in with cardiology? Why, when I try to search this on Google, does this always seem to return search criteria for VVS or Neurocardiogenic Syncope instead of Vasodepressor Syncope? And, what academic journals would he recommend I go searching in since I’m now ready to dig into this more?
The answers were a bit complicated, my first cardiologist wasn’t necessarily wrong in his diagnosis, but he wasn’t as specific in the diagnosis either. Also he definitely wasn’t familiar with the interplay of EDS with VVS; my new cardiologist is. While it is unusual to be rather out of commission for as long as I typically am, it’s not uncommon for this to happen in people with EDS. Technically VVS, Neurocardiogenic, and Vasodepressor Syncope are all quite similar and sometimes are used somewhat interchangeably in the field. They each have slightly different connotations, and using “vasodepressor” is the fastest way to explain what’s happening. He also recommended I use the website for the American College of Cardiology (ACC) as a good place to start for research. He also let me know that if I found anything treatment related that we hadn’t already tried, he’d be all ears.
So off to the ACC I went! I found a few promising journal publications, but printing them off or saving the PDF wasn’t working out for me. Instead, I leveraged my access to EBSCOhost to search for more peer reviewed publications that actually came with a save and print button. Success! I now have approximately 21 resources printed out, ready to be slowly broken down and understood. I say approximately here because I think that’s where I lost count — I might have gotten distracted and also started researching Depression with Cardiology, EDS, and Migraines.
Here’s what I know from my cursory glance while gathering my papers:
- The only papers I was finding listing “Vasodepressor Syncope” were all from the 1993-2004ish.
- Around 1997 to 2007ish the nomenclature seems to have shifted to using Vasodepressor, Vasovagal, and Neurocardiogenic somewhat interchangeably with Neurocardiogenic being the largest umbrella term, Vasovagal being in the middle, and Vasodepressor being used in a much more narrow sense.
- In 2017 a major article was published in order to define terminology in the field moving forward and standardize diagnosis criteria.
- No one really knows what’s actually causing these things to happen other than it being an issue with the autonomic nervous system sending out the wrong signals leading to expressions in the field of cardiology.
- By the time I’m done reading all these papers I could probably give a doctoral candidate a really good idea for a thesis.
So, with all that said, if you’d like to learn more about this go ahead and subscribe to keep up with what I teach myself. I’ll be walking you through what Information Literacy is, how to vet your sources, and what the research says in a layperson’s translation.
Stay tuned for Episode 2. Peace!