Hello EDS, Meet Your Friend POTS
Comorbidity: a disease or medical condition that is simultaneously present with another or others in a patient.
Let's travel backwards in time to the Spring of 2021 when I went to a new Primary Care Provider. My main reason for the visit was I experiencing significant fatigue and dizziness. At this appointment, I also mentioned EDS because my Physical Therapist had brought it to my attention that it could be a posibilty.
I expected to be told, that I just had a high-stress life and was very active, so it would make sense that I was tired. It's like I've heard doctors belittle my symptoms before😵💫 Little did I know, that I was about to be actually listened to by a PCP for the first time in my life.
She said not only is EDS very probable, but I think you also have something called POTS. I was honestly taken back because these were all symptoms I had brought up to doctors before, but were always just brushed under the rug.
According to Johns Hopkins, POTS (postural orthostatic tachycardia syndrome) is a blood circulation disorder characterized by two factors:
A specific group of symptoms that frequently occur when standing upright
A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing
What does that mean? For me, if I stood up quickly, I would get extremely dizzy and experience pre-syncope (near fainting). My heart would start racing, and my vision would start tunneling.
Now, it is completely normal for your heart rate to increase when going from sitting to standing, but what makes POTS different is the amount it increases, how fast it increases, and how long the symptoms last.
My PCP sent me to a neurologist who specializes in dysautonomia (a disfunction of the automatic nervous system). I had a long appointment which involved one of the strangest diagnostic test I've ever done; the tilt table test.
During this test I laid down on a special table, had my blood pressure and heart rate taken lying down, again after lying down for 15 minutes, and then I was strapped down so the table could tilt to a nearly upright position. The straps are necessary as it is not uncommon to faint. Despite my frequent dizziness, I have (and still haven't!) ever fainted.
The table tilts you to a standing position while your blood pressure and heart rate continue to be monitored. Going into it, I truly thought it wasn't going to be much different than how I felt when I stood up quickly. Boy, was I wrong.
Within 5 minutes I could feel my heart start racing, my feet started to feel numb, I felt extremely dizzy, and I was blinking a lot (which is always a tell-tale sign for me that I need to sit down). The fun **I say in a sarcastic tone** part of the tilt table test is that you have to stay like that for around 15 minutes because they need to see if your heart rate settles back or stays high.
Before they even tilted me back down the doctor said. Oh yes, you definitely qualify for a POTS diagnosis. After they tilted me down and finished retrieving numbers, I said "oh my gosh my feet are still numb!" The technician that was also in the room said, "well of course they are, your feet were a completely different color!"
I can't remember my exact numbers, but it was something along the lines of 48 bpm at rest lying down, and 120 bpm during the tilt. Remember the diagnostic criteria in adults is a difference of 30 bpm (or more).
The easiest way for me to explain POTS to people is that you are stuck in the fight stage of fight or flight. So that feeling you get before going on a big rollercoaster, performing on stage, public speaking, etc. is what I experience, but my body can't come out of that stage.
Some people are able to manage their symptoms through non-medication routes like increased salt intake, compression garments, and electrolytes, but for me, medication was the only thing that really helped. And the great news is, it has helped!
I'm adding this post to my blog because POTS is very a common comorbidity with Hypermobile EDS. It is possibly to have EDS but not POTS (and visa versa), but the two often come as a package deal.
My POTS feels relatively controlled now for the most part. What I find super interesting is that my PCP suggested that some of the symptoms that were diagnosed as anxiety could have actually been POTS related symptoms all along.
This has been such a journey, so thank you for being here to support and read 🦓💕
Be Brave. Stay Kind. Much Love.