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The P.O.T.S (Postural Orthostatic Tachycardia Syndrome) Survival kit




It's nearly three years since I started passing out, and over four years since the fatigue and tachycardia started. Through diagnosis, advice and experience I've learned a lot - changing what I do to cope day to day. I'm now at a point where I seem to have a good handle on this, so I wanted to pass some of that on.

Sadly sometimes these things won't seem to help. After passing out the other week I was so wiped out for days after - fatigued, feeling heavy and with my heart flipping out seemingly every time I moved. Still, you keep doing these things - it becomes even more important then.

Anyway, these times are so much rarer now. I used to pass out everyday, often a few times a day. Now, it's maybe once or twice every six weeks or so. It's getting better, as is the tachycardia, pain, fatigue etc.

It does kind of bum me out that years down the line all this is still going on, but I've got to hold onto the fact that it all is definitely getting better.

So, these tips won't cure you, and everyone is different but hopefully they will help. Also I should say that while I've called this the POTS toolkit, this should be relevant for people with syncope conditions too as there is a lot of crossover in treatment.

Medications

Obviously this will be different for everyone. I don't know how helpful it is to list what/how much I take specifically, so I won't - but feel free to email if you have questions.

What I will say though is that a container that separates days of the week, or times of day, can be helpful. I've had times where I've no idea if I've just taken a dose or not. This is a good way to remind you of where you're up to but also means you have one container rather than several packs/bottles.

Another good one for this, if you can't quite be bothered with stocking up a container is some of the medication apps you can get. Dosecast - Medication Reminder is available on Android (I don't know about iPhones), and gives you reminders but also lets you tick off when you've taken tablets.

Hydration & salt

I used to find it so difficult to get the required amount of fluids, especially when I was on campus and in rehearsals/class. Without much strength, there's only so much fluid you can carry around, and only so much water you can drink.

Then I ventured into the world of Facebook groups for people with POTS or similar conditions and everyone talked about Gatorade or Powerade helping, with it's sodium levels and electrolytes. So I spent a small fortune on keeping stocked up on this. I quickly realised it was more sugar than anything and sodium levels weren't great. It felt a bit like I was wasting money.

Now, what really helps is always having a litre of squash with me. I keep a full bottle of squash at work so I can always refill, and alongside this a container of salt.

Even with adding to foods, I never seemed to get enough salt. You can't add it to everything. Someone suggested adding to drinks, which sounded dire but I gave it a go. A few sprinkles into my squash. Turns out I could barely taste it.

So each day I have 3-4 litres of squash with salt added to each. I've found this really helps with how well (and upright) I'm feeling.

Just make sure you get one of the dispensers which has a finely milled outlet rather than one that will just pour out loads. Makes it a lot easier to just sprinkle into the bottle.

The new super-concentrated, tiny addition to the Robinson's family has blown my mind. So small and lightweight yet the same amount of servings as a litre bottle. This is perfect for days when you're out and about so can't be replenishing, and you don't want to keep buying juice drinks. This will be an everyday must for my Spain holiday in June.

The other thing I've tried are the Nuun hydration tablets. You add half or whole a tablet to water and it has an effervescent, slightly fizzy effect. These aren't that cheap but do last a long time if you're not having them everyday. I tend to have these when I'm really struggling with leg pains, fatigue or general POTS rubbish. Some people aren't keen on the flavours but I think they're fine.

Support wear

When first treated I was recommended the flight stocking type support wear. I gave this a go but just found it so tight it added to the leg pain, and didn't seem to really help.

Once at King's one of the specialist nurses recommended the shaperwear shorts so I hunted them down and gave them a go.

Now, I wear these everyday without fail. Like all of these things, they have to work together - no one thing is going to sort you out on its own, but I feel this step definitely helps.

Primark do really good ones for about £4 - which are down to the thighs and going up above stomach. H&M also do good ones for a few pounds more, and also do tights with the shaper consistency built in.

My only tip for these is if you're going for a big meal (I know big meals aren't recommended, but a bit of indulgence is needed now and then) then either don't wear these for going out, or remove them just before.

I know with the extra food you may need all the help you can get staying upright, but wearing these just feels like you're being squeezed and when you're full up that's a tad uncomfortable!

Summer



As we approach the summer, it's worth mentioning things worth investing in to get through these warmer times. Firstly, go back to the point on hydration - work extra hard at keeping your fluids up. Really important.

Then, a fan is a definite must. My manager got me an electric fan for work which plugs into the computer's USB port which is perfect for keeping cool without it being overwhelming. Then, it's always good to have a fan in your bag for when out and about - either a little electronic one, or the Spanish type ones.

A cooling spray is also helpful for refreshing you and instantly cooling you down. I got one from Savers the other year for a couple of pounds which was massive, and I'm sure Boots/Superdrug would do similar (though I could only find this more expensive Avene spring water spray last year).

I've also heard people talk about cooling vests, though I have no experience of these. Anyone that does, comment below! Luckily England is only ever warm/hot for short spells. I really feel for people that live in warmer climates.

Technology

So I mentioned the medication reminder app, but I also use the Instant Heart Rate app which is free on Androids. How it works is you place your middle finger lightly on the camera, and from this it takes your pulse. Pretty clever.

People are skeptical of these - as if you leave them on the side it will still have a reading, which is true. However, it won't settle on a figure as it would when taking your pulse.

For me, I only use this when I feel my heart is particularly high, or low, so I can be aware and also so I can bring up with the nurse or doctor next time I'm in touch. You can get all sorts of devices such as wrist watches which will permanently track heart beat. For me, I wouldn't want that. I think it would just be a little odd to see that all the time - and you could easily get a little obsessed.

Having used this for a few years, I can say I feel this app is pretty accurate. To the point where, when last in hospital, it showed the same as what was on my ECG. Obviously a 12-lead ECG will always be more accurate, but for day to day this can be helpful and also validating when you feel like crap to see how high you're going.

It also may be helpful to have a blood pressure monitor at home. I don't anymore but when I was first really ill without treatment it was useful to check -  as it gives heart rate and blood pressure. It was actually through this that a registrar first clocked the potential of POTS (previously dismissed outright by my cardiologist) after my Mum took readings sitting down and standing up over a period of time having read about POTS.

Also under the category of technology comes the wonderful world wide web. Through Facebook groups (search POTS, syncope etc) I've come across groups of really supportive people who completely get the experience. People ask questions, provide inspiring positivity or rant when things are tough. People answer, they listen and they just really get it. It really helps to have this forum and outlet.

The internet also means internet shopping which is a lifesaver. Walking through the supermarket, choosing food, carrying shopping and waiting for a taxi - all of that takes a lot of effort. This way, I can save that energy and have my shopping just arrive at my door.

Oh and Netflix is pretty wonderful (I recommend Modern Family as an easy, hilarious watch for bed days).

Dry shampoo has to get a mention too. Not technology as such but an ace invention nonetheless which means if washing hair is too much that day, you can skip a day without looking too grim. Also adds body to hair which is nice too.



So I hope this may help in some way! Let me know if I missed anything. Click here to read what else I've written on my experiences with Postural Orthostatic Tachycardia Syndrome. Also check out the STARS website - a brilliant charity with plenty of resources for anyone with a fainting condition.

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