It’s the first day of March, which also makes spring very, very close. And if you live with POTS, you know that spring tends to bring with it increased POTS symptoms. As we gear up for warmer weather, I thought I was should share some of my tips for living with POTS to help you be as prepared as possible.
I am not a medical professional of any kind. I share sources for facts and tips that I’ve come up with after my personal experience living with POTS.
Additionally, this post contains affiliate links. Thank you for supporting Kate the (Almost) Great!
What Is Dysautonomia?
Before we can talk about living with POTS, we need to talk about what it is. And POTS is a condition that falls under the dysautonomia umbrella, so we also have to talk about what dysautonomia is.
I’m going to be a nerd for a second and break down the word “dysautonomia”. Dysautonomia is dys-autonomia. “Dys” is a prefix that means “not,” similar to the “dis” in “disabled” or “disinterested”. “Autonomia” refers to the autonomic nervous symptom. The National Institute of Health (NIH) explains that the autonomic nervous system “controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature” (x). So the autonomic nervous symptom is the part of the nervous symptom that controls the things your body does automatically.
The Cleveland Clinic says that dysautonomia “can occur as a primary condition or in association with degenerative neurological diseases such as Parkinson’s disease. Other diseases with generalized, primary dysautonomia include multiple system atrophy and familial dysautonomia” (x).
The first part of that quote makes sense to me because if you have a degenerative neurological disease, your neurological system in general is breaking down over time, so it makes sense that that would include your autonomic nervous system.
I didn’t know what familial dysautonomia was, but the NIH says, “Familial dysautonomia is a genetic disorder that affects the development and survival of certain nerve cells. The disorder disturbs cells in the autonomic nervous system” (x). This is a great example of how dysautonomia works, which is why I’ve included it, as developing cells and continuing to keep cells alive is definitely something that your body does automatically, plus the cells referenced in this specific case are autonomic cells.
Basically, there’s a lot of your body that runs (or is supposed to run) automatically, and you don’t always realize that it’s possible for that to not work correctly. POTS is one of those cases.
How Does Postural Orthostatic Tachycardia Syndrome Work?
What Is Postural Orthostatic Tachycardia Syndrome?
Now that I’ve explained dysautonomia a bit, let’s talk about POTS specifically.
Postural orthostatic tachycardia syndrome is a condition when the autonomic nervous system doesn’t work correctly when it comes to heart rate, blood pressure, and temperature control.
Again, let’s be nerds and break down all the words in POTS.
Postural refers to being upright, which can be sitting or standing.
Orthostatic refers to orthostatic intolerance, which is when you feel lightheaded or have similar symptoms that get worse when you’re upright and get better when you’re back down (x).
Tachycardia is when you have a high heart rate.
In POTS, “symptoms […] come on when standing up from a reclining position and relieved by sitting or lying back down” (x). The symptoms are “usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat” (x).
Basically, postural orthostatic tachycardia syndrome is when you have orthostatic intolerance featuring tachycardia when you go postural.
Johns Hopkins says that POTS symptoms include:
- feeling lightheaded
- fainting
- brain fog
- fatigue
- exercise intolerance
- headache
- blurry vision
- palpitations
- tremors
- nausea
- diarrhea
- vomiting
Most of those symptoms are a result of your heart rate increasing and/or your blood pressure decreasing.
With POTS, your heart rate increases – sometimes to dangerous levels – while your blood pressure is normal or low. While this is something that is supposed to happen in some instances – like for a moment when you stand up – it’s not supposed to be the normal state (x).
In my case specifically, my blood pressure is generally on the low end of normal, even when my heart rate is 150. It’s good that I don’t have the high blood pressure to match my heart rate because high blood pressure is bad, but this also means that I can experience symptoms of low blood pressure as well as symptoms of high heart rate.
When I’m having a POTS flare, my blood pressure can also decrease when my heart rate increases. One particularly memorable time when this happened was when I was hospitalized with a post-op infection in 2020. They woke me up overnight to take my vital signs, and my heart rate was over 100 while my blood pressure was below 70/40. They called in all of these doctors and nurses, full panic-mode. The next night, the same thing happened. This time, they just called in the on-call doc and a couple of nurses. I distinctly remember the doctor asking, exasperated, “How is she alive?” He read my chart and then went, “OH, she has POTS,” and ordered 2 salt pills. I took them and within 3 minutes my blood pressure was 120/80.
I share all of this to illustrate different practical ways POTS can show up in your life. The final one I want to talk about before switching to tips for living with POTS is heat intolerance.
What Is POTS? A POTS Frequently Asked Questions Post
What Is Heat Intolerance?
While the phrase “heat intolerance” is pretty self-explanatory, it’s still kind of hard to explain. MedlinePlus says, “Heat intolerance is a feeling of being overheated when the temperature around you rises. It can often cause heavy sweating” (x).
And it’s definitely not the same as not liking heat! Heat intolerance can be “because your body isn’t regulating its temperature properly” (x). Any guesses to what part of the body regulates temperature? Yup, it’s the autonomic nervous system.
Regulating your body temperature is super important! It’s something the body does to keep you going. “Your body regulates its temperature by maintaining a delicate balance between hot and cold,” so while someone might have heat intolerance, someone else might have cold intolerance (x). And some people experience both!
Plenty of different people with different conditions can experience heat intolerance. Some common ones other than POTS are Graves’ disease, MS, type 1 diabetes, type 2 diabetes, and fibromyalgia, although they’re not the only causes (x, x).
The reason I wanted to bring up heat intolerance in this post is because it plays a HUGE role in living with POTS. It affects what I wear (generally layers), what I eat (lots of sodium), where I travel (not somewhere warm unless it’s the off-season), where I work (from home especially in the summer), and more. If I didn’t have heat intolerance, I think POTS would be a lot easier to live with.
That being said, let’s jump into my tips for living with POTS.
What’s Heat Intolerance? An Explanation
8 Tips for Living with POTS
Tip 1: Increase your salt intake – POTS patients are supposed to have a minimum 3-5 grams of sodium a day (compared to 1-3 for non-POTS patients), so one thing you can do to make living with POTS easier is increase how much salt you consume (x). How much you need depends on the person.
So why do we need salt?
Harvard Medical School says, “The human body can’t live without some sodium. It’s needed to transmit nerve impulses, contract and relax muscle fibers (including those in the heart and blood vessels), and maintain a proper fluid balance” (emphasis mine) (x). I emphasized that phrase because I wanted to remind you that POTS has to do with the autonomic nervous system, which of course requires transmitting nerve impulses.
Harvard Medical School also says that hundreds of studies on the effects of salt “show that cutting back on salt lowers blood pressure” (x). For many people, that’s a good thing. For people like me, that’s a very bad thing. My blood pressure can already be frighteningly low – it doesn’t need to be lower!
So you can imagine how glad I am to have found out that salt pills exist. Do you know how much food you have to eat in order to get 5 grams of sodium in you?! It’s a lot. That’s why sodium supplements are so helpful.
I personally take these sodium pills. 1 pill has 1 gram (aka 1,000 mg) of sodium! Depending on the time of year, I either take 1 or 2 in the morning, another 1 or 2 after lunch, and as needed in between.
Chronic Illness Advice: Resources for the Newly-Diagnosed Patient
Tip 2: Increase your water intake – POTS patients need more water than the average person, as we often sweat more because it’s how the body tries to regulate its temperature, so we lose more water in daily life. We should drink at least 80 ounces a day (x). But just because we need more water doesn’t mean that it’s easy to actually drink more water.
I track how much water I drink in my FitBit app, which also tracks my heart rate as I have a FitBit Inspire HR. This also enables me to see the correlation between the water I’ve drank and my heart rate. If you have an iPhone, the Health app has water-tracking capabilities, although you kind of have to dig for it.
But tracking in an app or otherwise isn’t easy for some people. If you’re one of them, you might want to get a water bottle that helps you track your water intake. For example, the classic Nalgene water bottles hold roughly one third of how much water we should drink a day.
Life with Chronic Illness: One Patient’s Life with 6 Illnesses
Tip 3: Consume more electrolytes – First things first, what are electrolytes? Cedars Sinai says, “Electrolytes are essential minerals—like sodium, calcium, and potassium—that are vital to many key functions in the body” (x). They’re important because “regulate muscle contractions and keep you hydrated” (x).
When you sweat, you lose electrolytes. So if you sweat a lot because you have POTS, you’re losing electrolytes.
Have you exercised, felt awful afterwards, and felt better after drinking Gatorade than drinking plain water? That’s because drinks like Gatorade have electrolytes in them.
But those drinks have food coloring in addition to electrolytes, so they’re not ideal for everyone.
One company to check out is Liquid IV, a powder that you add to water, and it comes in plenty of flavors like watermelon, strawberry, and lemon lime.
My personal favorite, though, is Cure. My favorite flavors are Berry Pomegranate and Lemonade, but they also have Grapefruit and Peach. Want to check Cure out? They have a variety pack that has a bunch of flavors so you can try them and find which one is right for you.
How Chronic Illness Affects Relationships
Tip 4: Wear compression gear – Dysautonomia International says, “Compression support hose and abdominal binders can be helpful for some POTS patients by lessening the peripheral venous pooling and hypotension” (x). Basically, compression gear tricks your body into working a little bit better.
I have over-the-knee compression socks that I wear, especially on hot days, and they have the benefit of helping swelling in my joints, too. These Copper Fit knee-high compression socks are just $10 a pair, so you can get multiple pairs without breaking the bank or just 1 so you can try them!
You also might want to try compression leggings, which you can get from Athleta. Cute and functional!
Life with Chronic Illness: One Patient’s Life with 6 Illnesses
Tip 5: Look into exercise retraining – Because exercise (and existing in general) can be very difficult for POTS patients, some patients try exercise protocols, which is basically trying to retrain your body to react correctly to exertion.
John Hopkins says, “The goal is to retrain the autonomic nervous system to allow for more exercise, which then helps increase the blood volume” (x). Basically, you move from recumbent exercise, as the recumbent position is where POTS tends to be best, up to postural exercise over a period of months. Why does it take so long? Because you’re retraining your cardiac and nervous symptoms. If it was easy or quick, everyone would be trying something similar for all sorts of reasons.
I was working on the CHOP exercise protocol when the pandemic started in 2020 and gyms closed. I never reached the point where it would have started to work, which is incredibly disappointing because exercise makes my RA pain worse, so it feels like I put in all that time just to not know the answer.
The Impact of Chronic Illness on an Individual
Tip 6: Track your symptoms – If you’re feeling stuck in figuring out what is impacting your symptoms, or you have no idea what is helping or hurting, tracking can help you see patterns that you’re not noticing in your day-to-day experience.
All those stats above about sodium and water are guidelines; you need to figure out how much salt and water your body needs by tracking your symptoms. Track how much water you drink and sodium you consume and how you feel. I do suggest tracking only one at a time; otherwise you’ll never know what made you feel better or worse.
The point of tracking your symptoms is to see patterns and figure out what could help or increase your symptoms. So it’s really helpful to track your symptoms for weeks and not just days.
The Connection Between Dysautonomia and Anxiety
Tip 7: Connect with other patients – Talking to healthy people about chronic illness is exhausting, and if you don’t regularly talk to other patients, you might not realize how much of what healthy people say and do impacts your view of yourself.
Talking to someone who just gets what you’re dealing with, even if they don’t have your exact illness, can be so beneficial. They understand how hard some of these things are to deal with, and from personal experience. You don’t have to one down your feelings because you’re worried about hurting them if they realize exactly how you feel.
So Someone Healthy Has Given You Health Advice
Tip 8: Practice self-care – Self care is literally about taking care of yourself, not necessarily doing a face mask and painting your nails. verywellmind says, “We are all less able to handle the stresses that come our way when we’re depleted by physical and emotional exhaustion. Or, put in a more positive way, we are more resilient and more able to handle life’s stress when we are feeling our best both physically and emotionally” (Emphasis mine) (x).
Self-care is not going to look exactly the same for every person. For example, if your body is unable to process lettuce for whatever reason, eating a salad is not going to be self-care. Similarly, while drinking 8 glasses of water a day is great for most people, it’s nowhere near enough for me because I have POTS (see above).
So how do you practice self-care if you have POTS?
Every tip before this one can be considered self-care, but other things you can do include taking your medication, getting a new POTS doctor if you hate your current one (note to self), getting high-quality compression gear instead of cheap ones, finding fun ways to motivate yourself into taking care of yourself, and so much more. Check out 7 ways to practice self-care as a chronic illness patient in this post.
Plus, get Mighty Well’s new self-care case, which has everything to make living with chronic illness easier. It’s “Designed to hold your critical care plus wellness needs all in one, so you can take your life’s ‘biggest’ little essentials with you wherever” (x). Use code KATEM10 for 10% off it or anything else on the Mighty Well site.
I hope this post and these tips have helped you better understand living with POTS. I want you to live your best life possible! If you have tips for me or other POTS patients, be sure to share them in the comments section.
Like this post? Share it! Then check out:
6 Tips for How To Accept a Chronic Illness, Resources for Chronic Illness: How Organizing Can Make It Easier, Mental Health and Chronic Disease Management: What You Should Know, Living Life with Chronic Illness: Common Problems & Their Solutions
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
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