Tips for managing dysautonomia

We have written a few tips and tricks to manage your condition before you even get near a doctor.  If you have any more, please do get in touch with us so that we can add them to our list.

1. Know your blood pressure

If you are suffering with dysautonomia its generally a good idea to know what your blood pressure and pulse rate is. A simple validated upper arm cuff BP monitor can usually be bought on the high street or amazon for under £40. Recognised brands include Omron (M2), and A&D, and you can check out medical-grade BP monitors on stridebp.org

2. Stay hydrated

We advise drinking at least 3 litres of water per day. This keeps your blood volume replenished

Always have a glass of water or a water bottle to hand, including by your bed at night.  Drinking 250ml of cold water 3-5 minutes before standing up can boost your blood pressure and prevent lightheadedness and other symptoms

3. Eat salt!

If you know your blood pressure is low or low normal (i.e. below 115/75mm Hg), be more liberal with salt. Salt allows your body to hold onto the water you drink, and raises your blood pressure. We recommend at least two teaspoonfuls of salt per day, preferable a complex salt such as ground Himalayan Pink or Sea Salt. If you really don’t like the taste, your doctor may be able to prescribe you salt tablets. If your blood pressure is higher

 

4. Wear compression garments on your legs and abdomen

These can be very effective in stopping blood pooling in your legs. Your GP may be able to prescribe you stockings or an abdominal corset, but we usually recommend shaping underwear from clothes or underwear stores. It is important that your thighs, waist and tummy are covered by the underwear. They work by compressing the major blood vessels in your legs and abdomen and pushing more blood towards your heart. Then, when you stand up, you are less likely to have symptoms.

Consider getting abdominal height Grade 2 graded compression, which should deliver 25 – 35mm Hg compression, depending on the manufacturer.

Medical -grade brands that have appropriate compression garments include:

Sigvaris

Bauerfeind

Or alternatively, you could try Skins or Spanx brands which are more consumer products.

5. Use postures when you start to feel unwell

If you start to feel dizzy and really can’t sit or lie down, you can encourage blood back up to your heart by some simple exercises. Tense the muscles in the lower half of your body, squeeze your buttocks and thighs, cross your legs, or if possible, squat. If there is a chair or stool close by, raise a leg onto it. Similarly, clenching your hands together can help.

6. Learn your triggers…

Symptoms of dysautonomia are wide and complex – and everyone is different. It is important to know what your triggers are, and what does and doesn’t work for you. It is a good idea to keep a symptom diary so that you can record patterns and trends in your health

7. …and avoid your triggers!

Common triggers can include hot steamy places like saunas and shower rooms (see point 11), alcohol, being rundown, and the female menstrual cycle. Some of these things are unavoidable, but if you are aware that your symptoms are worse in the premenstrual period for example, you can ensure you are even more careful with the advice above.

8. Stay prepared

On the subject of triggers, it is really important to know what challenges your day may face so that you can prepare for them accordingly. Some people carry a bag with water bottles, salty snacks, compression socks and even a portable stool! This can be very empowering and allows you to be in charge of your symptoms, rather than the other way around.

9. Stay cool

10. Eat smaller, more frequent meals

Larger meals can divert blood to your intestines, away from your heart. So again, there will be reduced blood returning to your heart. It may help to plan your meals ahead of time, and aim for 5 smaller meals per day. Avoiding alcohol may also help, as alcohol can lead to vasodilatation (expansion in blood vessels which may also drop your blood pressure further).

11. Have a shower stool – and keep your shower cool!

This is often quoted by patients as a life changing hack. It will allow you to enjoy your shower and carry on with your day, clean and refreshed! In addition, keeping your shower slightly cooler than you normally have it, will eventually start to train your body to vasoconstrict your peripheral vessels. If brave, consider giving yourself an icy blast with minimal or zero hot water at the end for 10 seconds, then 20 seconds, aiming eventually for 30 – 60 seconds of very cold water at the end of your lukewarm shower. This may initially be fairly shocking to experience, but in time, you may find yourself enjoying the invigorating feeling, which may lead to a boost in your BP when your body learns to adapt to the cold by vasoconstricting.

12. Have a support network

It is important to explain your symptoms to your family and friends. Symptoms of dysautonomia are not always immediately obvious to others. It is also crucially important to realise that you are not on your own, and some of the best support can come from others going through similar symptoms to you. There are some very helpful social media accounts and blogs where you can share your story with others who are in similar situations. The Dysautonomia Support Network, POTS UK, and STARS alliance among others have a lot of information and support and links for you to connect with others

Click these links for support organisations:

POTS UK

Heart Rhythm Alliance

Dysautonomia Support

Dysautonomia International

Dysautonomiatoday.com

Click these links for patient-led blogs and support groups you may find helpful:

https://chronicallyjenni.com

Living with POTS / dysautonomia

 

13. Take one day at a time

As with so many illnesses, you will have good days and bad days. Don’t be put off by the bad days. Put the challenging days behind you and focus afresh on each new day. Make sure you celebrate small victories and progresses and congratulate yourself for getting this far

14. Practise mindfulness, meditation and deep breathing

There is increasing evidence that mindfulness and meditation can enhance your wellbeing and can improve both mental and physical health. Focussing on and regulating your breathing can actually modulate your blood pressure and heart rate and improve symptoms of dysautonomia. There are a lot of popular applications and guides to guide you (eg Headspace, Calm, 10% Happier) and you may need to browse to find one that suits you. We are partnered with HeartMathTM   and some our team use this for our own personal use (see our Partners page for more details and a 10% discount code) which teaches deep breathing exercises and gives you real-time feedback (on an app on your smartphone) to show how your breathing immediately impacts on your heart rate patterns.  We suggest choosing one, and committing to a small amount of time per day (even 5 minutes). Be sure to record your symptoms as you do this. Think of it as an investment to a happier, healthier you!

 

Click on these links to find out more about mindfulness apps:

Calm

Headspace

The mindfulness app

Ten percent happier

Insight timer

Simple habit

Stop, breathe, think (free)

Smiling mind(free)

https://heartmath.com

15. Hold onto hope

The very fact that you are reading this factsheet suggests that you are taking control of your health, which is the single biggest step in getting better. There are so many ways to control your symptoms and make sure you thank yourself for every effort that you make



Leave a Reply