Everything POTS, Lifestyle

To The Person Who Got POTS And COVID

To the person who got POTS and COVID


In the last few months, I’ve received a lot of messages and comments from people who developed POTS after having COVID-19. With that being said, I wanted to drop a special post dedicated to these people.
 

Disclaimer: I am not a doctor or medical professional. Everything I share on this blog is based on personal experience with POTS and my own research. Consult your doctor before changing your lifestyle in any way. See my full disclaimer here.


To the person who got POTS and COVID during the pandemic,


First of all, I just want to say that I am sorry you are going through this. I am sorry that you are scared, angry, disappointed, frustrated, lost, or mourning the loss of who you were before falling ill with POTS and COVID. I can’t promise you that it will all go away, that you’ll be healed or cured by a certain date on a calendar, if at all. But I can promise you that you are not alone. And it can get better. Knowledge is power. The more you learn, the better you will be able to manage your symptoms.


And let me tell you–you will never stop learning on this journey. What bothers or helps you now may be completely different from what bothers or helps you in the future. Even your symptoms can change, as I so recently learned when my hands went numb and tingly during a POTS attack for the first time. (It was very scary, but an ER doctor told me that this can happen with POTS.)


You’ll have to constantly learn and adapt to become a master of managing your unique POTS case. Because there are so many different causes and symptoms of POTS, treatment and management is highly individual. What works for me may not have the same effect on someone else, and vice versa. So, seeking out a POTS specialist is a wise first step. 


Why? Because POTS is still a vastly underdiagnosed syndrome that many medical professionals do not know of. (Although, the pandemic is sparking some recognition for the syndrome!) Going to doctors who are unfamiliar with it—or worse, who don’t believe in it—is setting yourself up for an unpleasant and unhelpful experience. Save yourself the potential gaslighting and find a specialist. Often, they can be neurologists or cardiologists. 


However, it can take a long time to wait for an appointment with a specialist. I had to wait nine months for my appointment at Cleveland Clinic. But after many unsuccessful visits with local doctors, it was so worth it. I received the time and care I deserve as a patient. After a slew of testing, I was diagnosed with POTS and given a treatment plan based on my symptoms.
 

It has been a long road for me as someone who had POTS before the pandemic; I won’t sugarcoat it. I had to get through some tough days before reaching the point I’m at today. And today, I am doing much better than my pre-diagnosis days.


I go through spells where my symptoms worsen and I have to adapt. But I also go through times when I feel almost normal again. I worked my way back up to running by following the Levine Protocol for exercising with POTS. I can stand and get ready without a racing heart or shortness of breath. Also, I don’t have to sleep all the time anymore because the very act of standing and existing is exhausting. 


But let me reiterate: I am not healed. POTS is a lifelong, chronic condition for many people. Add COVID into the mix and it adds another layer of uncertainty. But I am better than I was. I am smarter when it comes to all things POTS. I am happy. I found new ways to enjoy the things I love so that I can still do them. 


For example, do I want to go to the park on a summer day and sit out in the sun to read and picnic? Great! But I better wear light clothing to keep cool and bring Liquid IV with me to stay hydrated. Do I want to run? Okay, sure! But I’ll have to go slower and maybe switch to jogging and walking intervals if my heart rate spikes. I’ve created a new normal for myself based on what I still can do. And you will too in time.


So, hang in there friends. I see you and I can empathize with what you’re going through. Who knows, maybe the mechanisms between POTS and COVID are different and long haulers may eventually improve with time. But I can’t promise that either. There are still too many unknowns with COVID, and POTS is complex too. 


Regardless of the outcome, I want to help people with POTS in any way that I can. Below, you’ll find a list of my blog posts that can be especially helpful to you in learning about and navigating POTS.
 

  1. Learn about a high-salt diet and why it’s important for POTS patients. BUT do not change your sodium intake until you see a doctor. There are several types of POTS; a high-salt diet is not appropriate for those with hyperadrenergic POTS. 
  2. Check out the importance of hydration and how much water you should be drinking every day.
  3. Read about compression for POTS and how wearing compression can help symptoms.
  4. Discover what the Levine Protocol is and why exercise is arguably the most important thing you can do to improve POTS symptoms. 
  5. Heat is a major POTS trigger; check out some tips for surviving the heat.
  6. Speaking of POTS triggers, see what my top triggers are, and what should be avoided or minimized.


You can also browse my blog for salty recipes and exercises for POTSies, and inspiration for when your mental health needs a little pick-me-up. I hope you find something helpful!


A letter to the person who got POTS from COVID, from a fellow POTSie


Like this post? Share it on social and don’t forget to pin it for later reference! 


XO,

Laurie, a fellow POTSie

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8 thoughts on “To The Person Who Got POTS And COVID

  1. Thank you so much for this! I recently had Covid and now am having many symptoms that point directly to POTS. I’ve been reading a ton, trying to wrap my head around it all, and how I want to proceed. I appreciated your experience, good advice and encouragement!!

    1. Thank you for reading, Kerry! I am sorry to hear that you haven’t been feeling well. Wishing you all the best and that you get some relief soon!

  2. Thank you for your blog!!! After COVID I have had some of the POTS symptoms and praying they continue to improve with time. My heart rate is getting better by increasing fluids, rest and just time. Is it worth time and $$$ going to a specialist if you think your symptoms are improving? Appreciate your advice!

    1. Hi Avery! I’d say you can always schedule an appointment with a specialist to have just in case you need it. It can take months to get in with one. But if you are doing much better by the time your appointment comes around, then you can always cancel it. No harm in having it just in case, but that’s just my opinion!

  3. Thank you so much for posting this. I got covid in April and I was just diagnosed with POTS. It’s been so overwhelming taking in all the new information for how to help my body function, and you make it sound less scary. Your posts have so much useful info without being overwhelming! I’m looking forward to using the CHOP method to try and get myself back up and moving. Seeing your success inspired me.

  4. I’m suspecting that I’ve had lifelong undiagnosed POTS. I’ve had a lot of random issues like feeling lightheaded when standing, stomach issues, brain fog, extreme fatigue, headaches, mood swings, etc. and have been diagnosed with IBS and depression and anxiety. However, when COVID started up 2 years ago, I had a bout of sudden chest tightness, shortness of breath, and tachycardia with those symptoms, culminating with a migraine. I had a normal echocardiogram and normal heart rhythm with a zio monitor, but the monitor did show tachycardia with normal activities like showering. Because I tested negative for covid and the symptoms suddenly stopped and didn’t recur, I didn’t pursue a diagnosis, and it didn’t help that my doctor blamed everything on anxiety given my mental health history and not having classic covid symptoms like fever and cough. He thought I was having a panic attack, even though with my lifelong anxiety I had never once before had a panic attack. Fast forward to now and I’m having recurrence of those same symptoms and am back to wearing a heart monitor. Even though I myself am leaning toward a POTS diagnosis because all my lifelong symptoms can be explained by it, I have yet to be diagnosed. I personally feel that I did have covid even though I never tested positive frustratingly, especially since I work in healthcare and was directly around covid patients, and that the covid exacerbated pre-existing POTS. I’m hoping that these cardiac/lung symptoms this current go around will stop just as suddenly as the last time. My worst symptom I would say is brain fog. I was put on Wellbutrin since it’s an activating medication and SSRIs never helped, but now I’m worried that even though it has helped my brain fog, if I really do have POTS I read that Wellbutrin can actually ramp up heart rate. It’s a sucky catch-22 situation.

  5. I just found your blog and it is very thorough and well cited! I am a cardiac nurse who is just getting worked up for POTS — which definitely got worse after COVID (and while knowing a lot about the heart helps with understanding POTS, it also increases anxiety). With reflection, I believe I have had it for years. I am just curious what you’ve found in your research about the connection with Epstein Barr and POTS? I am just finding a LOT of overlap in what you post and my personal experiences!

    1. Hi Kathleen, thank you so much for reading! I haven’t done research specifically for Epstein Barr and POTS and potential connections, but I can add it to my list! I hope you get some answers soon and some relief from your symptoms. 🙂

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