April is a memorable month for me. And not just because I love spring and fresh flower blossoms and a world thawing from winter. The month also marks an important anniversary for me. Can you guess it from this post’s title? It’s when I received my POTS diagnosis and put my three-year diagnosis journey to an end.
This April, it marks three years since I added POTS to my medical history. I truly cannot believe it has been that long. A lot has happened to me — to the world — in that time. This realization has made me pause and reflect lately — pause and remember the moment when I learned my POTS medical diagnosis.
I can’t say for certain the exact location I was when I learned my diagnosis. However, I do remember that my boyfriend was with me. I had gotten a notification on my phone to check my test results for my hemodynamic echocardiogram. Once I pulled them up, the results were there in black and white on that tiny screen.
“Results indicative of Postural Orthostatic Tachycardia Syndrome.”
A lot of emotions ran through me. Relief that there was finally a name for what I was experiencing. Happiness that I finally had an answer after years of feeling unwell without a cause. Hope that I could be treated and cured. Fear that I might not ever get better now that I had an official syndrome. Anger that it took me that long to get a diagnosis and that other doctors hadn’t believed me.
But do you know what I felt the most strongly? I hoped my doctors could find a cause and treat it and that I’d be rid of this condition. For good. Little did I know at the time, that wouldn’t happen. If you recall from my POTS diagnosis story, my doctors couldn’t give me an answer for why I had POTS. Not a definitive cause anyways. They think maybe it happened as a result of having Mono (Epstein-Barr Virus) when I was younger or because I have an autoimmune condition (thyroiditis). But it became clear to me that this was something I’d have to learn how to live with — for the rest of my life maybe.
So, that’s what I did and what I continue to do three years later. And I’ll say, I’m a lot better than I was before I received my POTS diagnosis, even than when I first started this blog. So, I thought I’d take this opportunity to give you all an update on how I am now and what I’m currently doing for my POTS management.
Let’s start with medication. To get right to it, I’m no longer on medication for POTS management. Everything I do to manage my POTS is through lifestyle changes.
However, as some of you may recall, when I started this blog, I was taking pyridostigmine 2-3 times per day. Usually, this medication is prescribed for people with Myasthenia gravis, but it is now also being used to treat POTS. This medication worked for me for a while. It did help me tolerate exercise enough so that I could recondition my body, primarily through reducing my standing heart rate and fatigue. But, it began to give me gastrointestinal side effects in the form of terrible stomach aches. So, I decided to stop it after about nine months.
When I came off the medication, I noticed that I was doing pretty alright without it. After wondering why and how, I concluded that I must’ve reconditioned my body through exercise. Plus, I knew what to do to treat symptoms better than I did when I was first diagnosed with POTS.
So, yes, I am at a point in my health journey where I am doing well enough managing my symptoms that I don’t need medication.
I know my POTS triggers, and I avoid them when I can. I travel smarter and plan out activities ahead of time so I don’t overdo it. I try to drink a ton of water every day. (BUT, I admit, I am not the best when it comes to drinking enough water. It really helps me to use big water bottles so that I only need to refill them once or twice a day. Anyone else have tips?!) Because I love coffee, I still drink one cup in the morning and make sure to drink water with it. I had to give up drinking any more coffee than that because it makes my heart rate too high.
I put salt on almost all my food and keep a stash of electrolytes at all times. I have stylish compression socks that are now an active part of my wardrobe. Exercise has become a daily ritual. I’m even able to run with POTS now! I get up slowly — most of the time! — and frequently shift my weight and do calf raises in public to get my circulation pumping. I’ve mastered the art of falling (not always gracefully) to the ground to prevent myself from fully passing out. And I know when my body is telling me to slow down, that it needs rest.
And while this makes it sound like I have all my stuff together, I’ll be honest and say that’s not always the case. Every day, every week, every month is so different for me. How I’m doing when I write this post will almost definitely be different than how I feel next week. That’s because there are so many variables that can affect POTS symptoms, and some variables are out of my control (like my menstrual cycle, life stressors, and the seasons).
I still get dizzy when I stand up too fast or forget to perform a fainting counter maneuver. I still need to drop to the floor quickly sometimes to prevent myself from fainting and hurting myself. Summertime — while I absolutely love it — and the heat are still my number one enemies. If I overdo it, I’ll feel exhausted the next day and like I’ve gone backward a hundred steps.
But I know how to better take care of myself now so that I can hopefully bounce back as quickly as possible. That’s my hope for you all too as you read my blog: to equip you with all the knowledge needed to help you better care for yourselves with this roller coaster syndrome.
If you have specific questions about my POTS diagnosis or management, drop them below! Also, if there are any topics you want me to blog about, let me know that too! I try to make this blog a resource that’s as helpful as possible for the POTS and chronic illness community.
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