I was talking to my parents a few weeks ago about how most everyone in my life has no idea about all the tiny things I have to do each day to manage my POTS symptoms. To be honest, I haven’t even shared much with them. However, I was talking about the issue with my vision in regards to POTS, and they were really surprised I do this one thing every day to help deal with my symptoms. I thought I’d share here too:
As I’ve said before, with POTS I get really dizzy upon standing up, sometimes almost to the point of passing out (when I first got diagnosed, before I was on my beta-blocker, I actually did pass out a few times). With dizziness and passing out comes loss of vision. I’m sure many of you reading this who don’t have POTS have experienced some loss of vision (or at least seeing black dots) when you stand up. This is a similar experience to POTS, except with POTS it can be much worse. There are times where my world is completely black for 15-20 seconds or more, and at first this was really scary and overwhelming for me to deal with.
When I stand up, sometimes I’m completely fine, but other times I lose complete vision. At this point I have two choices- stand in one place until my vision comes back, or continue to walk forward and wait for it to come back that way. When I stand up in my office with clients, I can’t very well stand in one place, so the walking to the door option is what I take. So this is how I’ve learned to manage it- before I stand up, I look at my surroundings. If it’s in my living room or office, I know how many steps I need to take to get different places. I look for things I might have put on the ground (shoes, books, etc…) so I can avoid them.
When I stand up and my vision goes, I can continue to walk forward despite the fact that all I can see is black. I don’t think my clients have ever noticed that at times I can’t see them start to leave my office. Usually by the time I get to the door and start to open it my vision is back, and I smile as they are on their way. As I said, this certainly doesn’t happen every time I stand up, but does definitely happen from time to time.
That’s the thing when it comes to any long term diagnosis or illness- it’s about normalizing what is going on within us and then learning to manage it as best as we can. This is something I’ve done so much that I don’t even think about it much anymore, which is nice. But when we have to do these little things to manage our illnesses, it takes energy. If you’re a friend or family member with someone with an illness, have a little extra patience with them. It’s likely that they are constantly using energy to manage themselves in small ways so they can remain functional and live a full life!
I wanted to share this for a few reasons- First of all, no one told me that this brief vision loss was part of POTS, and it freaked me out at first. I hope that this might serve to encourage some of you who have POTS. Secondly, this is meant to give a little insight to family and friends about what your loved one deals with on a regular basis (in multiple ways- it may not even include vision loss).
For other posts in my POTS series, click here.
* I am not a doctor, and these posts should not be taken as expert medical advice. I’m simply someone who has lived many years with POTS and has found resources around the internet that help to explain this syndrome. I’m just sharing my personal story. Please contact a doctor if you have questions about POTS or think you might have it.