New Chronic Illness Alert: POTS

Monday’s post was full of fun and enjoyment with fashion. Today’s post is going to be a lot more serious so bear with me as I word vomit all of this once again.

See, I am unfortunately no stranger to having to make posts like this; I go silent for a while, I come back with one regular post to announce my return and then I go over this particular post a million times and then re-write portions until it sounds the least like I am looking for pity. So here we go: I have been diagnosed with a new health condition. And then one is more serious and somehow manages to impede my life more than the endometriosis does.

If you follow me on Instagram or TikTok then you have seen that the week after Thanksgiving I found out I had mono. Unfortunately, I have had mono before and knew what to expect from all of this, and after they looked at the viral load in my blood test, they estimated I’ve had it a few other times than just the two known times, but luckily if your mono reoccurs it is almost never contagious. But unfortunately, I started to develop some other symptoms that sent me to urgent care, the ER, and then back to my primary doctor, where they concluded I have a disorder called POTS. 

Found here. Can be other symptoms as well.

POTS stands for Postural Orthostatic Tachycardia Syndrome, which really just means my heart does crazy things when I change position. When I go from laying down or sitting up to standing, my blood pressure drops and my heart rate increases which makes me either pass out immediately or feel like I am about to pass out. It also causes dizziness, heart palpitations, hard heart beating, shakiness, vision changes, and insane fatigue. Like I thought I had fatigue issues before this and I have been proven wrong in a MASSIVE WAY. And from what I can tell I only have an average case, not even a really bad case. Like any other chronic health issue, there are things that make it worse and things that make it better but nothing will ever cure it or make the symptoms stop entirely. 
There are medications that can be taken, but taking medication for your heart is always a risk and can be detrimental long term, so I have opted for some of the other methods first and will explore medication if these other methods don’t work. Currently what I am doing to see if I can lessen the symptoms is consuming about 60 ounces of water a day, taking salt tablets every day (increasing sodium is an important part of dealing with POTS), and then once I can get the more aggressive symptoms under control, diet change and exercise are also important in making sure my heart stays as healthy as possible and I can keep my symptoms in check. 

Aside from the things that I have already explained here, I was told that since the virus triggered my POTS, there is a very small chance that it will go away once the Epstein Barr Virus (the virus that causes mono) is no longer active. This is a very small chance, and my doctors let me know that it is rare that this happens, but it is still a possibility that this will go away. However, after going over things with my doctors and going back 6 months with my symptoms, it was found that I did have some of the early symptoms and warning signs starting back in June of 2021. Since I was not tested back then and assumed my symptoms were endometriosis-related, there is no way to know for sure but my doctors were pretty convinced I was already showing signs, and the virus most likely just fast-tracked this whole situation. So that also makes them unsure what the illness will look like for me long-term in my body. At this point, I am learning as much as I can and acting as if this is going to be something I will live with forever so if it does go away, it’s a pleasant surprise. 

Found here.

For now, that’s really all I have to say on this as I am still trying to figure out what helps, what makes it worse, and what I can reasonably do. But as it stands right now, I am just doing my best not to pass out every time I stand up to go to the bathroom. 

If you have POTS, please feel free to comment with any tips and tricks you might have in the comments below! I am new to this illness and will take any and all help I can get!

Madey

Cover image by Avery Lynch