My POTS Survival Kit: Dysautonomia Awareness Month

After my successful EDS Survival Kit post some time ago I’ve been meaning to write one for POTS and just never got around to it! Dysautonomia awareness month seemed like the perfect time. A lot of these tips relate to keeping cool as heat intolerance is one of the things I struggle with most but also means it will help anyone who struggles in the heat.

PoTS or Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. Which, without all the big scary words, means that the body struggles to do all the things it’s supposed to do automatically (regulate blood pressure, heart rate etc) when you go from lying to sitting or sitting to standing. It causes a wide range of symptoms from dizziness and fainting to problems with digestion. Heat often makes this so much worse. You can watch me it explain it in full here.

I was diagnosed back in 2016 and now manage my POTS fairly well with medication, exercise and all of the helpful tips, tricks and products I’m about to share with you. If you want to learn more about POTS & Dysautonomia please head to my youtube channel and check out my 2019 Dysautonomia Awareness Month Series! The 2020 series is coming soon you will be able to watch it here.

DISCLAIMER: I’m not a medical professional and POTS and similar conditions vary so much from person to person that these things may or may not be helpful for you. If you’re unsure please contact a medical professional. I am sharing my own personal experience of how they help me manage my condition. Some of the links below are affiliate links, meaning, at no additional cost to you, I may earn a commission if you click and make a purchase.

Keeping Cool!

1.  Wearable Fan

This little beauty has literally been an overnight game changer! I ordered it on a whim and it’s been really helpful. The fact it’s handsfree means you can keep cool and it doesn’t distract from your usual activities, I’m literally wearing it as I type. It’s not heavy so isn’t aggravating my neck either. It has 3 speeds settings and is simple to recharge and can last between 3 & 10 hours depending on the settings you use. It also has colour changing lights which are fairly pointless but definitely a bit of fun to brighten up your day. It’s also quiet so wearing it whilst watching TV hasn’t been an issue. For less than £15 it’s an absolute no brainer to help you stay cool for me! Mum bought a fancy Dyson fan this week and I’m nowhere near as impressed with it as I am with this!

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2. Koldtec Headache Halo

One of the worst symptoms of my POTS & EDS has always been headaches. I’ve been using this to help with my headaches for a few months now and it has been 105924862_261955288401136_395778662325122503_namazing as an ‘escape pod for your head’ and it definitely has a dual purpose in keeping you cool in the heat. It uses specially designed ice to keep you cool but means you don’t have to get wet or covered in condensation and the headband is comfy and easily adjustable. It comes with various sizes of ice so you can arrange it just where you need it. I’m excited to do a video for you showing you exactly how it works when my camera is repaired! A couple of cons is that it is a little pricey especially as I was hit with import duty to the UK from Canada but, for the amount I use it, it was definitely worth it and would buy it again in a heartbeat. The only other difficulty I have is if I want to wear my glasses at the same time it can be a bit awkward but I either take my glasses off or have managed to get the placement so it’s comfortable but takes a couple of tries. They also have cooling towels and comfortable mask available.

3. YuYu Bottle

I have been wanting one of these for the last 3 years so I was so happy when I managed105708892_287298065966646_910820048537575311_n to win one in the EDS societies awareness month giveaway! I’ve always known they’ve been a great hot water bottle but as heat can mess with my POTS I could never justify getting it just for my joints and tummy pain. What I only found out on winning it is that you can actually use them for cold therapy too! (They recommend having 2 inner bottles if you are going to switch between hot and cold regularly) All I had to do was half fill my bottle with water fold it in half and pop it in the freezer for an hour and a half and it was perfect snuggle up with and keep me cool! Now the weather is cooler I also use it like a normal hot water bottle to help with my bloating and other gastro symptoms which are exacerbated by my POTS.

A quick word on cooling towels. I bought a Dock & Bay one back in October with high hopes but in all honesty, it just made me feel damp rather than cool and considering when I’m hot I spend a lot of time in bed, it just made my bedding wet and uncomfortable. Maybe okay for the gym but I haven’t used it since. If anyone does know any they’ve found helpful let me know!

4. Finally HYDRATE! I know saying this to someone with POTS who already drinks 3 litres of water a day can seem ridiculous but sometimes when I’m exhausted from the heat I struggle to remember to drink. I do love having my litre water bottle (I would recommend mine but it’s tripled in price since I bought it!!) to fill up and keep track of how much I’ve had. I also keep a 3L dispenser like this one in my room so I don’t have to keep going up and downstairs and aggravating my POTS every time I need a refill. Plus I keep these electrolyte tablets by my bed for days I need an extra hand. Top tip for electrolytes always be careful of ones with added caffeine! If you struggle with drinking so much I ordered some ice lolly makers this week and have loved making different lollies to help stay hydrated!

Other Top POTS hacks!

  1. Shower Stool

This is always the first thing I recommend to people who’ve just been diagnosed with POTS. It changed my life. Showering with PoTS is a real challenge. Standing + Heat + Having your hands above your head = a bit of a disaster. So if you take away one of these elements things can become much easier. My Shower Stool was the best, and strangest, 21st Birthday present I got. It gave me my independence back and meant I could shower on my own. I specifically recommend the one linked in the title as it is so easy to put up and take down. I bought another one recently (accidentally not the same brand) as I’d left my original in Norfolk and couldn’t manage without. But on the new one, you needed a screwdriver to put it together and it was a nightmare. So I keep the new one as a permanent feature in my bathroom and take the old one on my travels when I’m staying somewhere that doesn’t have an accessible bathroom. I’m going to look at investing in this one with a swiveling seat in the future!

2. Hair Dryer Stand

My hair dryer stand was one of the first things I got after being diagnosed with POTS. Again it gave me so much independence back.  My mum and boyfriend at the time tried to dry my hair for me in the early days I did not like it one bit. Drying your hair is another tricky thing with POTS because you’re already feeling exhausted post-shower then you are adding more heat and trying to hold something heavy above your head. This stand means I can sit at my dressing table (or on the floor) and turn as it dries my hair for me. As a Brucie Bonus it also makes life so much easier on my EDS shoulders. If you want to see me using it in action check out one of my early youtube videos here.

3. Blood Pressure Monitor

A blood pressure monitor is a must-have for me, especially early in my diagnosis. It helped me attribute symptoms to what was going on in my body and let me know what was normal for me and what wasn’t. I think they are also a big help at the moment where drs appointments are mostly over the phone as it means you can still take readings to give to your drs without having to be there in person.

4. Compression socks

Personally I’ve never been a huge fan of compression socks they always fell down and/or irritated my knees too much (maybe thats an EDS thing) but I do know they work for lots of people. They work by helping the circulation in your legs so you don’t end up with horrible blood pooling and boosting your blood pressure. I’ve always found compression tights or leggings more comfortable.

5.Salt

If you are a low blood pressure POTSie like me you will probably have been told to increase your salt intake. This is definitely something that should be recommended by a dr before you begin though! Salt helps the body retain more of the extra fluid intake that we also need. 3-10g is what is usually recommended. Luckily I love salt and also find my body can taste salt less when I’m feeling worse; its like it knows I need more of it! I love salt popcorn, gluten free pretzels, olives and more. I’ve also been trying out flavoured salts recently and am obsessed with oak smoked salt! Some people struggle to eat enough salt so, in this case, sodium tablets may be prescribed.

6. Tablet

POTS often means you are flat out in bed and sometimes this means keeping entertained and distracted can be difficult, this is where my kindle is a lifesaver. It’s got a big enough screen so I can watch my favourite shows on netflix or amazon prime but also has my music, books and more at my fingertips so I don’t have to move and make my symptoms worse when I’m in a flare.

7. Pedals

Keeping up some movement is really important with POTS however difficult it is. Before I knew what my POTS was I was so unwell and pretty much bed bound by my symptoms this lead to my body deconditioning and exacerbated my EDS symptoms and made it much harder to get moving again once my POTS was more controlled with medication. The first this my physio recommended to me was a recumbent exercise bike which was really great but I struggled to use. When I’m doing exercise I either like to be outdoors, with other people or also doing something else so I really lacked motivation. But a set of pedals meant they were mobile so I could exercise whilst watching TV or chatting to friends. I’ve since tried a outdoor recumbent bike and absolutely loved it. You can see me exploring with it in this vlog.

8. Babyliss Curl Secret Hair Curlers

Styling your hair with heat is always difficult with POTS but since getting these automatic curlers I have struggled far less. I’m definitely not saying they make it easy and I still avoid it as much as possible but for the days I really want to make that effort I would never go back to other curlers. These make it quicker, the heat is more contained and have also found it less painful on my EDS hands and arms. Bonus is I haven’t burnt myself with them whereas that was a regular occurrence with my wand! It also means if you’re having a really bad day someone who’s never curled hair can do it for you easily if necessary.

9. Gin Gins

Whether it’s hot or not POTS can cause a lot of nausea. I’m lucky that I don’t get it as badly as when I was first diagnosed but I do still suffer with it sometimes and no anti-sickness meds seem to help but these definitely do work for me. They are avaliable in pastilles or chewy, toffee-like sweets and they taste really great.

I really hope you found this helpful and please let me know in the comments what your favourite tip to stay cool is! Or your favourite POTS hack in general. Find more tips in

Spoons & Love to you all and happy dysautonomia awareness month!

9 Comments on “My POTS Survival Kit: Dysautonomia Awareness Month

  1. Hi Jenni – so funny that your post popped up just as I am sitting here with my POTS symptoms going into overdrive. I am hot yet am covered in goose bumps – this thing is just so bizarre, isn’t it?! Only passed out once today though. I am def going to invest in a hair dryer stand – my hair is completely out of control after all these weeks in lock down!! Hope you are doing ok and surviving both the heat and lockdown, sending love Claire x

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  2. Some great tips and products here! I love the cold-pack headband!! I’ve been looking for something like that for my son and I for headaches – we currently use an ice pack designed for knees – sort of bowl-shaped with a hole in the middle – we wear it like a cap on our heads! ha ha This looks much better!

    I agree re: cooling towels. I bought some last year for a camping trip when I was afraid it was going to be too hot, and I wasn’t impressed. Luckily, it was cooler in the mountains & the shade, so I was fine!

    Thanks for all the great ideas! – I was just discussing OI/POTS with others online today so will share this widely!

    Sue

    New Book: Finding a New Normal: Living Your Best Life with Chronic Illness

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    • oh bless you! I do really highly recommend the halo does always calm my headaches down!
      I know the company who makes the halo also does towels which look slightly better than other ones Ive tried but can’t afford to risk it for the price.
      Thank you so much Sue! Have a great day Spoons & Love x

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  3. Hey Jenni!! I enjoy reading your post and I really need a Wearable Fan for me. This is so damn hot in my place. So I will purchase it and thank you for sharing this.

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