Tips to manage POTS that I’ve learned in my 3 years after a diagnosis

Postural Orthostatic Tachycardia Syndrome, or POTS, is an autonomic dysfunction illness that mainly causes the heart rate to increase and blood pressure to drop while a person changes positions. There are other symptoms that go along with the tachycardia, like heat intolerance, vertigo, fainting, brain fog, among others. Basically, anything that runs in the background of your body doesn’t run like it should anymore.

I started having symptoms in 2019 after having a bad flare up month of my asthma and had a case of severe norovirus. I kept getting worse symptoms during the pandemic until I was finally able to be diagnosed in April of 2021. I had to push hard for my doctors to get me a diagnosis and figure out what was wrong and to even get a plan in place that even resembled a plan. Since then, I’ve learned a lot about this condition on my own and had to experiment with what would work for me.

Compression is key

When I was diagnosed, I was told to wear compression socks. During the summer, that’s a tall order. Heat is a major trigger for most POTS patients, and having socks, especially knee-high ones, on just makes it easier to overheat faster. There are other ways to have compression. I enjoy using shapewear to get that compression I need without overheating while also being fashionable. I can wear a pair of compression biker shorts under a dress easily. And the same goes for a lace up shirt or corset. Even compression leggings and tank tops are a game changer, especially if they have pockets. Try a variety of compression wear and strengths so see what works for you, then buy multiples when you find the ones that work. This will be a daily wear situation.

Dress based off energy and future symptoms

If you anything like me, you love stylish clothing and wearing a variety of outfits. But when you have POTS, getting dressed could steal your spoons quickly. Elastic waistbands will become your best friend along with loose fitting clothing. Dresses have become my favorite in summer since they are easy to get on and off and can be easy for cooling down in. I’m currently working on making some more dresses for my wardrobe. Long skirts can also be a good choice for when you need to wear something easy and cool but didn’t have the spoons to shave your legs.

You also have to consider what will be easy to take off at the end of the day or when you have a flare up. Layering garments may sound like more work, but when you’re overheating and need to cool down, having a tank top, camisole, or slip dress underneath will help get that cool down you need without being charged for indecent exposure.

Keep an emergency kit with you at all times

Episodes for POTS patients are bouts of severe symptoms that last anywhere form a couple minutes to a couple hours, which drain you completely for the rest of the day or longer. When this happens in the safety of your home, it’s easier to get to the things you need if they’re all in one place. Having a flare up cart filled with electrolyte drinks, salty snacks, compression wear, and whatever else you might need is a good idea. My cart doubles as my nightstand since most of my flare ups happen in my sleep or right when I wake up.

It’s important to also have a travel emergency kit, so when you are out and about you can be prepared for the worst. I have a bag big enough to carry my water bottle, a couple Liquid IV packets, Advil, a glasses cleaner that I can double as a cooling cloth, my inhaler and other medication, and a protein bar or bag of pretzels (great source of sodium). I always have my phone on person in case I need to call someone to help me.

Vary your salt and electrolyte sources

You will get tired of the flavors of Liquid IV or whatever electrolytes you start out with. Yes, you need to take the largest amount of sodium you can, but it won’t do you any good if the taste of it makes you nauseated. Nausea is already a symptom you constantly have to endure, why make it worse?

Look at the nutrition labels of everything you consume and add up the sodium in them all. You’ll find that those little amounts add up, and that doesn’t even include the salt you’ll inevitably add to your meals. Speaking of table salt: don’t be afraid to try different types of salt to season your food to help with varying the taste. I’ve personally found my stomach agrees more with Himalayan Salt than sea salt or iodized salt. I’ve yet to try Celtic salt, but it’s on my list. What are other salt sources you’ve heard of? Feel free to put them in the comments below.

Find supplements that agree with you

When I was first diagnosed back in 2021, my doctor prescribed that I take 500mg sodium tablets to keep up my blood volume. I could not keep them down or any food with them the entire time I tried them. Even when I only took half or a quarter of a tablet, it would just come back up. I’m fairly certain that I’m not alone in this predicament. If sodium tablets don’t work for you, it’s okay to find other sources to compensate.

Your body also may not be able to absorb sodium or other nutrients like you need it to. I found that when I took magnesium and potassium supplements alongside my daily vitamins, it helped. Even if you are eating as best as you can, the autonomic system in a POTS patient doesn’t necessarily work as it should with nutrient absorption. So, taking supplements can help with your overall symptoms.

Sit down when you can

A POTS patient’s heart works thrice as hard as a normal human’s does. You will get tired faster. Sit down whenever you can, and if you can’t try to stand with crossed legs to get pressure on your vessels to reduce blood pooling. So when you’re cooking in the kitchen, sit. When you’re brushing your teeth, sit. When you’re showering, SIT! I cannot tell you how many times I would not have been able to shower if I wasn’t using a stool to sit in the shower.

Don’t be afraid to use mobility aids

There was a time at the beginning of my diagnosis that I was bedridden for two months because I couldn’t walk on my own. I would have to crawl to get to the bathroom, kitchen, or hell, even my desk. I grabbed a pair of canes with forearm supports off Amazon, and they are something I use multiple times a week. The forearm supports are the key part of the canes for me since I sometimes have to lean heavily on them to walk. I can’t afford a wheelchair for the bad flare up days, but maybe in the future I can get one. If it helps you to keep doing what you want and to stay independent, why not use them?

POTS will make you depressed

After 3 years of dealing with this diagnosis and almost 5 years of dealing with the symptoms, I’ve learned that not being able to do what you used to due to the symptoms, and flare ups forcing you to bail on plans, makes you grieve who you used to be. It’s absolutely frustrating and disappointing when your body doesn’t do what you want it to do. I’ve cried my eyes out countless times because I was so exhausted from my symptoms. And it’s okay to not be okay. Talk to your family and friends about what’s going on and lean on them for support. And if they’re not available, there is an entire community of other POTSies like us on places like TikTok to help you through it all.

Find the small things in life that bring you joy, like fairy lights or the sound of rain, or even an amazing cup of chai or pea flower tea that will help you get that serotonin to get through the rough times.

Remember, you are not alone in this. It is a full-time job dealing with POTS, but it doesn’t have to take over your life or ruin your passion or ambitions.