Sunday, 24 August 2014

Managing POTS

Since being diagnosed with POTS I've been trying out all kinds of things to manage my symptoms.  Here are some of the things that have helped me.

This is not intended as medical advice.  Please consult your doctor before trying anything new.

DRINK! 


I always feel worse when I'm dehydrated so I try and drink 2-3 litres of fluids a day.  I drink bottled water as I don't like the taste of our tap water and I also use High5 Zero tablets.  It's an electrolyte tablet that you add to water to make a refreshing drink.  Berry is my favourite flavour. It contains sodium, magneisum and potassium, and has no artificial colours, flavours or preservatives.  It does contain artificial sweeteners (sorbitol and sucralose).

You simply drop one tablet into a 500ml water bottle and let it disolve.  It's takes a couple of minutes.  The taste is quite pleasant, like weak blackcurrant squash.

You can buy them from various sports websites online.  Shop around for the best deals.  They cost around £4 for 20 servings, that's just 20p per drink.




There are other products on the market, such as Nuun tablets, but they contain artificial preservatives and sweetener and I personally didn't like the taste.

I have been advised it is possible to drink too much, which is not good for you.  Too much plain water can leave your electrolyte levels low so it's probably best not to exceed 2-3 litres a day.  A good indication of your hydration is the colour of your urine.  Pale yellow is good, clear means you've drunk too much.

COMPRESSION!

My GP prescribed thigh high compression stockings on the NHS but they were a disaster.  The pharmacy assistant had never measured anyone for stockings before and she didn't quite get the size right as they were so tight on my thighs they rolled right down and cut off my circulation.  The fabric was a rough, itchy nylon and I couldn't stand the feel of it against my skin so I ditched them and tried something else.

I regularly wear bamboo knee high compression socks from a website called Butik21.  They are soft, machine washable and just look like ordinary socks.  When I wear dresses I wear ordinary support tights from Matalan which are a bargain at only £3 a pair.  They don't give the strong compression my POTS nurse recommended but they do make a difference.

I did try 20-30 mmHg compression tights but they were expensive and so difficult to put on that I put my finger through the fabric trying to pull them up!  I have since learned that wearing disposable rubber gloves helps a lot when trying to get tights on as they grip the fabric far better than fingers and you have less chance of snagging them on a fingernail.

In the summer when I want to wear sandals with trousers or maxi dresses I wear open toe knee high stockings from Pebble UK  They are great with flip flops and they stop your toes getting too sweaty when the weather is warm.

My POTS nurse also mentioned shapewear as a possible compression option.  I find that control pants are useful (and improve my figure) but the high waisted ones make my reflux worse.  I have read that abdominal binders are commonly used by POTS patients, especially in the USA, but again if they are too tight or too high it can cause problems if you have reflux.




SALT!

I never used to put salt on anything but that was before I was diagnosed with low blood pressure.  There are various recommendations about how much salt you should have.  I liberally put it on everything now.  I don't measure it I just add it to my food, as much as I can stand.  I have recently been using pink Himalayan salt.  I don't know if it's any better than regular white salt but it is a pretty colour :)

Salt doesn't help everyone and you should check with your doctor before increasing your salt intake.

AVOIDANCE!

It might seem obvious but avoiding things that make my POTS worse is a good thing to do.  Alcohol makes me feel a whole lot worse, as does standing still (ever get the feeling you're sinking into the floor?  Yup!  Me too!) Getting too hot makes me feel worse so when we do get a glimpse of summer I'll be the one hiding indoors with the curtains drawn.  Stress is another trigger but it's not always possible to avoid stressful situations but cutting out the drama wherever possible helps.






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