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in Health &middot June 21, 2019

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 (postural 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!

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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.

8 Essential Tips for Living with POTS

The chronically ill workbook, a workbook to help you better manage & understand your chronic illness, www. kate the almost great .com

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 Exercise Protocol Diary: Month 1

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.

What Is POTS? A POTS Frequently Asked Questions Post

The Essential POTS Symptom Journal

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.

An alternative – and one that definitely tastes better than straight-up salt pills in my experience – is Vitassium products. They don’t just have sodium: they also have potassium, which is an essential nutrient. (Especially if, like me, you can’t stand bananas and therefore often are low on potassium.) 

These products are made specifically for people with chronic illness, especially dysautonomia. They help you manage your symptoms so you can live your life with your illness impacting you as little as possible. And if you have a sensitive stomach, don’t worry – they were formulated with you in mind.

Vitassium products come as Capsules, FastChews, and DrinkMix, so you can figure out what works best for you and your lifestyle. Maybe you get a combination of products!

The capsules are tasteless, and each two-capsule serving contains 500 mg of sodium and 100 mg of potassium. They’re also vegan and gluten-free.

FastChews are chewable electrolyte tablets that come in Fruit Punch and Grape. Each serving of 2 chewable tablets contains 125 mg of sodium and 25 mg of potassium. They’re also vegan and gluten-free.

Their newest product, DrinkMix, comes in pink lemonade and fruit punch, and you can buy single-serving sticks or a tub. Each serving contains 500 mg of sodium and 100 mg of potassium. And, you guessed it, they’re vegan and gluten-free.

And want to get 25% off your Vitassium order? How about free shipping on orders over $50? Then join the free Vitassium Club if you live in the U.S. Additional savings options may be available for people in Canada, Mexico, Australia, New Zealand, the UK, and Europe – check out their website for details!

POTS Exercise Protocol Diary: Month 3

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.

POTS and Heat Intolerance

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?

5 products for POTS in the summer, tips + recommendations from a POTS patient, katethealmostgreat.com
5 things you need to do for summer if you have POTS, katethealmostgreat.com
What POTS patients need for the summer, katethealmostgreat.com
5 things all POTS patients need for summer, katethealmostgreat.com
Kate Mitchell

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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Comments

  1. Laine paro says

    July 16, 2019 at 10:41 pm

    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

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  2. Carissa says

    July 20, 2019 at 6:08 pm

    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.

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  3. Anna says

    August 3, 2020 at 3:09 pm

    Thank you so much. I’m a mom of 3, work full time and I do online school in the evenings has really taken a toll on me dealing with Pots. I’ve been researching all kinds of things to do to help. I’m going to order all of this lol thank you!

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There are a lot of medical advancements that I'm g There are a lot of medical advancements that I'm grateful for, but one of them is the ability to do IVIG at home. ⁣
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I'm on IVIG - or, in my case, subcutaneous immunoglobulin replacement therapy - because I have to kill the better part of my immune system. There are, in fact, some parts of my immune system that don't attack me, which is why we add them back in. This helps reduce my chance of serious infection and also made my rheumatologist feel comfortable enough to increase my Rituxan dose. ⁣
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This is a weekly treatment that I do, but it's so much better that I can do it at home than going into the hospital. It takes around 2.5 hours from taking my pre-meds to tossing my needles into a Sharps container. While it's another thing that I have to do, because I do it at home, I don't have to risk exposure to infections at the hospital or deal with Boston traffic, which would add another hour to the process. ⁣
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I can finish my treatment and then go about my day, which I'm very grateful for.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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Weeks 23 and 24 of 2026 Weekly! The last two wee Weeks 23 and 24 of 2026 Weekly! 

The last two weeks were prepping for my infusion, having/recovering from my infusion, and getting caught up after. This meant things were very busy but also I don’t have a lot to show for them. 

1️⃣ New glasses! I really like having multiple pairs so I can switch them as I want.
2️⃣ One of my current projects. I got this standing hoop for my birthday and I’m working on an alphabet (uppercase and lower, although I’m still working on the lower) with extra floss.
3️⃣ Infusion time! I got my higher dose so hopefully my symptoms improve a lot in the upcoming weeks🤞🏻

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣

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IDs: 
1️⃣ Kate takes a selfie. Her new glasses are thin silver circles
2️⃣ An in-progress cross-stitched alphabet in a special hoop stand that Kate is sitting on.
3️⃣ Kate takes a selfie in an infusion chair.

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1️⃣ Off to see my foot doc … and my foot is healing! Yay!
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3️⃣ This is 35 🎂
4️⃣ Featuring Harley snuggles 
5️⃣ And then it was my mom’s birthday! 
6️⃣ With Harley again 

ID: 
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2️⃣ a notification from WordPress saying “Receive views from 150+ counties. The United Nations has nothing on you!”
3️⃣ Kate smiles for the camera in a cafe 
4️⃣ Kate in the same outfit with Harley the golden retriever on her lap. 
5️⃣ Kate’s mom smiling in a restaurant 
6️⃣ Kate with Harley again 

#GoldenRetrieversOfInstagram #ChronicallyIll #ChronicPain #InvisibleIllness
Lifestyle Changes I Made for My Rheumatoid Arthrit Lifestyle Changes I Made for My Rheumatoid Arthritis⁣
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While these are not my treatments, they have made my life better in some ways. ⁣
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What lifestyle changes have you made, for RA or another condition?⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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IDs: ⁣
A series of pictures. Each has a text box on them related to the picture. ⁣
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1️⃣ Lifestyle changes I made for my rheumatoid arthritis⁣
2️⃣ Wearing a mask⁣
3️⃣ Using a cane⁣
4️⃣ Changing my diet⁣
5️⃣ Working from home⁣
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#ChronicIllness #RheumatoidArthritis #AutoimmuneDisease #Arthritis #ChronicallyIll
What helps you mentally get through a tough time?⁣ What helps you mentally get through a tough time?⁣
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I'm struggling right now with my broken foot, which brings back a lot of tough memories. That plus being due for Rituxan and the heat starting up has made things hard. ⁣
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Here are somethings I do: ⁣
▪ Stick with my routine⁣
▪ Make recipes that I really enjoy⁣
▪ Work on embroidery projects so I can do something productive that involves stabbing fabric⁣
▪ Cut myself slack ⁣
▪ Get Harley hugs⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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Week 21 of 2026 Weekly 1️⃣ First real cross-stit Week 21 of 2026 Weekly 

1️⃣ First real cross-stitch project: done! 
2️⃣ The magic machine that is hopefully healing my broken foot 
3️⃣ When your 2 refrigerated medications are delivered on the same day

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.

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1️⃣ A completed cross-stitch project, which shows 2 bears walking past a lake, trees, and mountains.
2️⃣ An Exogen machine showing use 13 days in a row
3️⃣ A couple of styrofoam refridgerated containers for medication

#ChronicallyIll #CrossStitch #RheumatoidArthritis #SjogrensSyndrome #IVIG
You guessed it, I'm one of that 25%. ⁣ ⁣ May is Ar You guessed it, I'm one of that 25%. ⁣
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May is Arthritis Awareness Month. Like, comment, and share to spread awareness 💖⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: Fact or Fiction? Let's Check! ⁣
Fiction⁣
You only have rheumatoid arthritis if your rheumatoid factor tests positive.⁣
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As many as 25% of RA patients test negative, which is called being seronegative.⁣
katethealmostgreat
Things are tough (all over pain, heat with POTS, i Things are tough (all over pain, heat with POTS, in a walking cast waiting to see if I need my 6th foot surgery), but so am I.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: Kate takes a selfie. She's a white woman with auburn hair wearing a navy-based floral dress, green glasses, and silver Celtic knot necklace.⁣
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#RheumatoidArthritis #POTS #POTSie #AutoimmuneDisease #ChronicallyIll
Week 20 of #2026Weekly 1️⃣ IVIG + Kindle reading Week 20 of #2026Weekly 

1️⃣ IVIG + Kindle reading 
2️⃣ Almost done!!!!!

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.

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IDs: 
1️⃣ Infusion tubes coming out from under her shirt. There’s a Kindle on her lap.
2️⃣ An almost-finished cross-stitch project

#IVIG #ChronicallyIll #CrossStitcher #CrossStitchersOfInstagram
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