My POTS symptoms are not so good today, so I thought it would be a good day to raise some awareness of this condition... POTS stands for Postural Orthostatic Tachycardia Syndrome, which means sufferers will have a racing heart on changing their position. Many people with hypermobile Ehlers Danlos Syndrome (like me) also have POTS. POTS can cause problems simply with standing up and changing position, as the body struggles to adjust to gravity. In h-EDS the laxity within the blood vessels contributes to this, leading to blood pooling in the hands and feet, and a dramatic increase in heart rate in an attempt to get blood to the brain. In adults the heart rate has to increase by more than 30 bpm within 10 mins of standing for POTS to be diagnosed. POTS is due to an abnormal response by the autonomic nervous system, and is characterised by orthostatic intolerance.

My POTS symptoms are actually the hardest part of my h-EDS to cope with (as a physio I’m pretty good at managing the aches and pains). Symptoms of POTS for me include palpitations, fainting and pre-syncope (near fainting), lightheadedness, fatigue, and headaches. I have learnt an awful lot in the last few years about how to manage my symptoms which has been so helpful. I’m forever grateful to the autonomic service at @uclh for this, and so I thought I would share some advice more widely. Some of these tips I’ve been taught, others I’ve figured out for myself over the years. I really hope you find them helpful. Here are my top tips for managing POTS:

1. Drink 500 ml water on waking. I go to bed with a pint glass on my bedside table.

2. Move from lying to sitting up SLOWLY in bed to drink this, and sit supported.

3. Sit on the edge of the bed and either clench your buttocks x10, or do x10 calf raises, prior to standing up.

4. Proceed with CAUTION to bathroom. Do buttock clenches again before getting off the toilet! DO NOT SHOWER at this point.

5. Drink another 500 ml water ASAP on rising. I tend to add hydration salts to this.

6. Stay well hydrated throughout day to keep your blood volume up, and keep headaches at bay. I drink at least 3 litres of water.

7. Avoid caffeine. I went completely caffeine free 2 years ago and feel so much better for it.

8. I tend not to shower until much later in morning (if I’m not rushing out) or better still, wait until evening.

9. Take care when getting up off the floor (if you have been exercising, playing with kids or dog etc), bending over to pick things up from floor (toys, getting things from low shelf in supermarket), or when you have both arms above your head (washing hair etc) especially in the morning.

10. Don’t stand still for too long. Do calf raises, shift your weight and fidget constantly. This is helpful when waiting in queues, waiting for kettle to boil, or for me, when I’m treating patients!

11. If going out for the day to do something involving lots of standing around looking at stuff (shopping, museum, art gallery, concert), keep drinking water, fidget a lot, and take opportunities to sit where possible.

12. If you feel faint or are having palpitations, sit and drink 500 ml of water ASAP as your “recovery”. This will reduce your heart rate.

13. If the world goes black and you have a near fainting episode, lie down and elevate your legs until you feel better.

14. Take regular exercise - I like Pilates, brisk walking and swimming, and try to exercise every day if at all possible. I do also run, but I know this won't be on everyone's list!

15. Pace yourself. If you are having a tired day, then rest. Sit to get things done if you need to (like the ironing), or leave them – most things can wait.

16. Aim for a consistent amount of activity a day, or factor in a rest day if you are having a busy day. I tend to alternate my busy clinical days, as I struggle if standing treating clients for several consecutive days.

17. Avoid or limit alcohol intake. Hangovers and POTS don’t mix.

18. The following websites may well be helpful:

https://www.ehlers-danlos.com/

https://www.ehlers-danlos.org/

https://www.potsuk.org/

https://www.hypermobility.org/