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.
Like this post? Share it on social and don’t forget to pin it for later reference!
14 thoughts on “How I’m Doing 3 Years After My POTS Diagnosis”
Hi! Very encouraging post! I’ve not been diagnosed with POTS. Won’t get to see my Dr for another 8 weeks. But the symptoms seem similar. Until I know what this is, I at least would like to know how you manage car rides and sitting for long periods of time? Along with compression socks, what movements do you do to reduce the blood rush down my legs?
Hi Chris! I do seated calf raises and march my feet up and down while sitting in the car. I also will tense my leg muscles occasionally. Definitely try doing these before getting up out of the car, and move slowly! Hope this helps. Thanks for reading! 🙂
I just found your blog searching for Pots.
I believe I have after having Covid, but haven’t being diagnosed yet.
My question to you is what kind of exercises do you do daily and what supplements you use to help it out.
In another note, congratulations for managing to live your life to the best.
Thanks for reading, Daniella! Right now I do a mix of cardio (running, biking, or swimming) and full-body strength training. On my workouts page, you’ll find more specific strength training exercises I do, if you’re interested. 🙂 (Also, I am in pretty good shape and can tolerate upright exercise currently — otherwise, running would be difficult if not impossible.) Wishing you all the best!
My 29 year old daughter was diagnosed at 17 when Doctors had no idea what POTs was. My question for you is does yours affect your menstral cycle? Her’s last sometimes 19 days. Also she is battles with constipation pretty bad. Getting worse the older she gets.
Have you ever experienced night sweats with your POTS and if so any ideas for how to deal with them? Thanks so much for sharing your story and insight!
Hello, my son has POTS he drinks 3 gallons of water a day. His doctor is ordering home infusions of saline because he is mostly bed ridden with POTS, SMALL FIBER NEUROPATHY and EDS. Hes 33 and has been I’ll since the age of 7. He suffers from severe nausea and this brain fog. I’m hoping the saline once he gets started helps. His body rejects almost every med so his doctor is going to try to do it through his blood stream. My son says the compression socks make him feel worse his feet get even colder. I think his small fiber neuropathy is irritating him with wearing them. Any other ideas ? I’ve been having him elevate his feet.
We should be starting the IV soon…
Thank you for sharing your story 💗
Hi Margie! Thank you for sharing. Whenever I wear compression socks and my feet feel colder, I’ll double up and wear a thicker sock over the compression socks and sometimes add slippers too. But if regular compression socks still cause his feet pain, maybe try footless compression socks or even leggings. Best wishes to you and your son and finding something that works for him soon. 🙂
Did you go to a cardiologist, neurologist or electrophysiologist to get diagnosed?
Hello Laurie! I’m glad I came across your blog while I was researching POTS, I started having symptoms 2 years ago after having COVID for the first time and have been suffering ever since. Most doctors think you’re crazy but I finally found a cardiologist that listened, tested and diagnosed my POTS. Tried a beta blocker with no success, it only made my body hot, but I’m about to start a high sodium, low carb & increased hydration regiment along with compression socks and light exercise. I can’t walk 10 feet without getting dizzy and my heart rate increasing, I’ve passed out 3 times while in the shower because my HR gets into the 170-180s and will be 150-165 just when trying to get dressed.
I’m exhausted and losing my mind because I feel like it’s getting worse, I can’t even play with my grandsons for more than a few minutes without having to rest. I feel like I’m just existing, not living and I can’t take it anymore, it stole my life. 😩 Fingers crossed that this new routine helps, I’m hopeful knowing you’ve improved your situation.
Thank you for sharing and good luck to you with managing your POTS!
Hi Laurie thank you for your blogg.
My daughter Jessica was recently diagnosed with P.O.T.S. it happened so fast for her. She had covid19 and 3 months later she was fainting, shaking, unable to tust her body. She was so frightened. The doctors did the table test and gave her diagnosis.
She gets very fatigued. She has only just begun her life with P.O.T.S
Thank you for giving me hope.
Thank you for all your comments. I’m yet to be diagnosed. It’s been over 4 months and sometimes I get very miserable. I sleep for 12 hrs and sometimes 16 hrs so wake up in the middle of the day. Trying to get up is difficult, dizzy, brain fog and can last up to an hour and a half. Then usually I’m good.
I drink a lot of water but often feel dehydrated. I’m trying to add salt to my diet.
Does anyone else sleep long hours? Kim
My 16 year old daughter was just diagnosed a couple weeks ago. She suffers from debilitating symptoms and misses endless amounts of school and sports activities she once thrived in. She has started high salt and water intake, has adjusted her diet drastically, and is wearing compression undergarments. It has been like a bad nightmare. I just want to thank you for your post. It gives me a sliver of hope.