Health

POTS and Heat Intolerance

One of the biggest medical issues that I’ve been dealing with this year has been POTS. It made my surgery recovery difficult, especially in the first week. And it has been my bane this summer, basically since May. Why since then? Because it has been warmer than 70 degrees, and my threshold for when it gets bad is about 75. So I figured that today I would talk about what I’ve experienced and how I’ve dealt with it in case you are also dealing with POTS and heat intolerance.

Disclaimer: I am not a medical professional. I speak from my experience and from what credible sources say. Please consult a medical professional for your medical advice! Additionally, this post contains affiliate links.

POTS - or postural orthostatic tachycardia syndrome - can cause a big problem for people who have it. One way is through POTS and heat intolerance. Here, patient and blogger Kate the (Almost) Great addresses why this is an issue, how it can be an issue, and how to deal with it.

What Is POTS?

POTS, or postural orthostatic tachycardia syndrome, is a dysautonomic condition. The autonomic system is “The part of the nervous system that controls muscles of internal organs (such as the heart) and glands. One part of the autonomic nervous system helps the body rest, relax, and digest food and another part helps a person fight or take flight in an emergency” (x). With POTS, the autonomic system doesn’t control the heart rate and blood pressure correctly.

More specifically, “POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting, and an uncomfortable, rapid increase in heartbeat” (x).

Why do the above symptoms occur? People with POTS have an abnormally high heart rate, sometimes in their resting position, but sometimes only in their active heart rate. A normal resting heart rate is 60-100 beats per minute, or bpm (x). A normal active heart rate depends on your age, for people in their 20s it’s 100-170 bpm and for people in their 30s it’s 95-160 bpm (x). According to my cardiologist, a sign of POTS is when your jump from normal to standing or active is 30 bpm. For example, if your resting is 90 bpm and you stand up and your heart rate goes to 140 bpm, that’s a sign of POTS.

The concern with long-term heart health for POTS – again, according to my cardiologist – is having a high heart rate long-term. This can cause damage to the heart. As POTS is a dysautonomic condition, it doesn’t necessarily contain structural issues to the heart. But long-term high heart rate can lead to death, due to heart disease or other issues (x). But by-and-large, general long-term issues from POTS isn’t well-known. It’s a rare disease and not a lot of studies have been done about it.

The good thing about POTS – and also the other big characteristic of it – is that patients have normal or low blood pressure. The bad thing is that this is what makes people pass out, but it’s good because if my blood pressure matched my heart rate, my heart would explode. (Have you ever had a heart rate of 190 while while walking down the street? It’s not fun.)

Blogger and POTS patient Kate the (Almost) Great addresses her journey with the condition, including how her body reacts to POTS and heat intolerance, and how to deal with it.

My POTS Journey

We can actually pinpoint when I developed POTS down to a 3 week period. In 2017, I had a terrible reaction to a medication and was hospitalized for 5 days. If you’ve never been hospitalized, you should know that they take your vitals every few hours. Vitals include blood pressure, temperature, oxygen check, and heart rate. So during that 5-day period, they checked all of my vitals every few hours, and they were never problematic.

Fast-forward 3 weeks, and I got a stomach bug. After a few days of it, we called my primary care to ask what to do, and they sent me to the ER. If you’ve never been to the ER, part of the triage process is taking vitals. As soon as they took my vitals, they whisked me off to the trauma portion of the MGH ER, which is where they take car crash victims. So it was extremely scary, as no one told me why.

It all worked out in the end, but the gist of it is that when you get sick or something happens to your body (like having surgery), you can have a POTS flare. I had another one a few months after that, and was hospitalized again over my birthday (hence the picture above). That time, they ran every cardiac test they could, and since all of them came back good, a doctor suggested that it might be POTS. As I have several friends who have POTS, I believed the same thing. But the doctors supervising me didn’t want to make the official diagnosis; they wanted a specialized cardiologist to do it.

It took several months for me to actually see this cardiologist, as she is the only one in the MGH system who specializes in conditions like POTS. She had me wear a holter monitor for 48 hours to get a feel for how my body reacted in everyday situations, and I had a tilt-table test, which is exactly what it sounds like and is the official, definitive test for POTS. Once I was diagnosed in December 2017, I started medications for POTS. I’m on a beta blocker, which is used to bring down the heart rate.

I’ve now been through 2 summers with POTS and they have been miserable. The heat makes symptoms extremely difficult, which I’ll get to next.

So You Were Diagnosed with a Chronic Illness: What You Should Do Next

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What Do POTS and Heat Intolerance Have to Do with Each Other?

There’s little official documentation about POTS and heat intolerance, but many people with POTS experience it. I’ve talked to many patients who do, and my cardiologist agrees. Heat intolerance in this case mainly means symptoms get worse in the heat, aka patients can’t tolerate the heat. Some ways that this might be demonstrated include:

Feeling faint – In my experience, I start to feel dizzy and lightheaded. These are the signs of what’s to come if I’m not careful. It can range from feeling off to feeling like the world is swimming around me.

Excessive sweating – I didn’t know that this was a symptom until a few weeks ago because I’ve always been a heavy sweater. I experience this in 2 ways. 1) Sweating easily and 2) sweating a LOT.

Actually fainting – The dizziness and sweating (for me) lead to fainting. I haven’t fainted in a while, but I know that I’m about to when I start seeing spots, when my vision starts to go in general, and when the world starts to tilt.

Being nauseous and throwing up – Nausea is a huge symptom of POTS. There’s general nausea, and then there’s throwing up. Both of which are POTS symptoms. For me, frequent nausea (or more frequent) happens when there’s heat, as does throwing up.

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Strategies for Dealing with POTS and Heat Intolerance

1. Eat even more salt than usual – POTS patients know that we need to eat more salt than usual, but it’s even more important on warmer days. I called my cardiologist this summer and asked what I could do to feel better than I was, and she said to eat more salt and drink more water. POTS patients are supposed to have 3-5 grams of salt a day (compared to 1-3 for non-POTS patients) in general, so in the summer or on hotter days in general, aim for the 5 gram level (x). I advise reading a lot of nutritional labels to figure out what foods having higher sodium contents so you can make smart salt choices. For example, Rice Chex has more sodium than Cheerio’s, so if I’m having trouble with symptoms, I want to reach for the Chex rather than the Cheerio’s.

2. Drink even more water than usual – Similarly, POTS patients should be drinking 2 liters of water a day (x). This summer, I drank way more than that most days, closer to a gallon. If it was below 80 degrees, I drank around 2 liters. But again, my cardiologist told me to drink more water, so I upped it on days that I felt worse or knew that I would feel worse.

3. Stay in air conditioning as much as possible – If you have the option, stay in air conditioning. If you don’t have central air, try to get a window unit. On the worst days, I stay inside in air conditioning as much as possible. When I was in Maine over the summer and it was hot, I had a fan going as high as possible and regularly got in the lake to cool myself down.

4. Get a portable fan – One thing that has made my life so much better this summer is that I have a fan on my desk at work. After my commute, which involves walking up a hill, my body temperature goes out of wack and it takes a while for me to cool down, even though my office has air conditioning. But I have a small fan at my desk, and I turn it up when I get to work. Some days, I need it on all day, and others, I just need if for the first hour. I think that for next summer I’ll get a hand-held, battery-powered fan to carry around with me. Some possibilities are this Mini Hand-Held Fan ($13.99), this Aluan Hand-Held Fan ($11.99), and this OPOLAR Clip Fan for your desk ($36).

5. Get compression gear – This is another thing that POTS specialists advise. 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). 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. My favorite compression socks are these SUGIFT compression socks, of which I have 2 pairs ($7.50).

6. Plan ahead – Check the weather before you leave the house. What is the hottest it will get? How humid will it be? Then plan accordingly. Carry snacks with high sodium content or salt tablets. Carry a full water bottle. Bring your portable fan. Wear compression gear. You get the picture!

7. Be prepared for the worst – But you should also be prepared for your body to refuse to cooperate. In addition to all of that mentioned above, be prepared for something bad to happy. Carry nausea medication with you or bags to throw up in. Wear gear that monitors your heart rate (I wear a Garmin vivosmart HR) so you can act before something bad happens. Have a plan with your loved ones for in case you pass out. Do you go to the hospital if you pass out? If so, which hospital? I also carry a printable with all pertinent medical information (which you can download for yourself here) in case of emergency, especially should I pass out without anyone I know around me. Basically, think ahead in case something bad happens.

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How do you deal with POTS and heat intolerance?

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