Health

What Every POTS Syndrome Patient Needs for the Summer

Today is the first official day of summer! If you’re someone living with POTS syndrome (postular orthostatic tachycardia syndrome) then you know what that means: HELL. For those of you not in the know, POTS is one of those illnesses that gets worse when it’s warm. This is my third summer with POTS and while I don’t have the condition itself under control, I know how to cope with it during these rougher months. So today I’m sharing what I think every POTS patient needs to survive the summer. Good luck!

POTS and Heat Intolerance

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Summer can be extremely difficult for POTS syndrome patients. POTS patient and Boston lifestyle blogger Kate the (Almost) Great shares what, in her opinion, every POTS patient needs for the summer.

What Every POTS Syndrome Patient Needs for the Summer

Portable fan – Buying a fan to keep in my bag with me has already been one of the best purchases I’ve ever made and it isn’t even June. The thing about POTS is, at least for me, that I don’t feel temperatures normally. So I feel warm at a much lower temperature than other people do. And, due to POTS, I react to warmth very poorly. I sweat excessively, get nauseous, and, if I haven’t been careful about consuming sodium, get dizzy. One thing to do to help cool myself down is to turn on my portable fan. I keep it in whatever bag I’m carrying that day, which is important for commuting. Even if my final destination has AC, it doesn’t help much if I’m having major POTS problems before I even get there. I have this mini handheld fan, which has a USB for recharging. It also folds in half for easy storage.

Big water bottle – We POTS patients need to drink way more water than non-POTS patients! The International Pain Organization says, “A patient with POTS should drink anywhere between two to four quarts of water, Gatorade, milk, Pedialyte, sports drinks or Propel per day” (x). Water is the healthiest option of those (although not passing out or throwing up is more important, so you do you). So I suggest that you get a large water bottle to carry with you so you can always have some water. Now, I, as someone with messed up joints, completely understand that sometimes carrying around a large water bottle full of water can be hard on your shoulder or back or whatever you’re using to carry it. But remember that you don’t always have to fill it to the brim! Just make sure that you always have water of some kind. If you’re not like me and you don’t already have a large collection of water bottles, here are some suggestions: Hydro Flask 24 oz Water Bottle Stainless Steel & Vacuum Insulated ($35), Nalgene Tritan 32oz Wide Mouth BPA-Free Water Bottle ($10), and Contigo Autospout Ashland Water Bottle, 24oz ($10).

POTS syndrome, POTS, postular orthostatic tachycardia syndrome, chronic illness, dysautonomia, dysautonomic conditions

Travel pill box/case – In the summer, it is especially important that we don’t miss our medications. So if you go away for a weekend – as you should! POTS doesn’t mean we should miss out on the summer – you shouldn’t leave yours behind! This AUVON iMedassist portable daily pill organizer (twice-a-day) weekly AM/PM pill box case with moisture-proof design is great because you can take the individual days outside of the overall case so you don’t have to lug your full pill organizer for a weekend. Alternatively, you can check out this Inovat portable pill box 4-compartment travel case, which is much smaller.

Salt pills – I’m not exaggerating when I say that these changed my life. I’m so mad at myself for not taking these last summer. The issue with POTS is that we have to consume so much more salt than people without dysautonomia; my cardiologist said I should eat 3-5 grams of sodium a day compared to the 1-3 of everyone else. And it is so hard to consume sodium consistently over the course of the day! That’s where these pills come in. I take 1 in the morning with my morning pills and 1 before my evening commute home. Within 15 minutes of taking one, I literally feel my body cool down by several degrees. My heart rate drops by ~20 bmp. It’s amazing. When it comes to buying them, carefully research what’s out there and the other ingredients in the pills. For example, when I search “salt pills” on Amazon, an option comes up that’s naproxen sodium. If you’re already taking naproxen, you want to be careful not to go over the recommended daily dose. I personally take these sodium chloride tablets.

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Compression gear – Compression gear is … magic. At least, it is for this POTS-and-inflammatory-illness patient. I first started using compression gear when I was recovering from my 2017 knee surgery. My physical therapist cut me a compression sock to wear and it majorly helped my knee pain. Coincidentally, that was the year I developed POTS and I didn’t realize it at the time, but that compression sock was slightly helping my POTS. Last year, I bought thigh-high compression socks to help with POTS and my ankle pain (also because I was/am still recovering from my big ankle surgery). These have been so amazingly helpful. Additionally, I have heard from other people that abdominal compression gear has helped a lot with their POTS. However, I haven’t tried that, and as such don’t have any personal recommendations of products.

What do you think POTS syndrome patients need to have?

Like this post? Check out:

POTS exercise protocol diary, 30 Things about Living with POTS, Chronic Illness and Mental Health, Is Chronic Illness a Disability?

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2 Comments

  • Reply Laine paro

    I take liquid iv hydration modifier mix in 16oz water 500 MG salt plus 3 times the amount electrolights also keep Himalayan salt with me

    July 16, 2019 at 10:41 pm
  • Reply Carissa

    As a mom of 4 with POTS in GAduring the summer I’ve been absolutely miserable and unable to participate in so much since my POTS began it’s havoc years ago. I’m not affiliated with any product I mention by name just FYI and this is just based on my personal experiences. I love the IcyBreeze portable AC/cooler. It has allowed me to attend state swim meets and other events for my kids I would have missed otherwise. I just tried the Zero Breeze battery powered portable AC yesterday at an indoor state swim meet and it failed miserably and I was saved only by the fact I’d also brought the IcyBreeze. I’m looking currently to try to modify the IcyBreeze to be more portable however bc I have to have help when I use it to get it around. Icelandic salt always on hand is a must and listening to my body and not pushing harder to only end up worse.

    July 20, 2019 at 6:08 pm
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