Dysautonomia

26th August 2023 | Dr Melanie Dani

What is the autonomic nervous system?

The autonomic nervous system is the part of the body that controls vital functions such as heartbeat, blood pressure, bowels and bladder, temperature control, and sweating. These are involuntary processes – that is, we don’t have to think about them, because they happen automatically. There are two parts of the autonomic nervous system, the sympathetic and parasympathetic arms.  The sympathetic component coordinates a ‘fight or flight’ response to a possible threat, like running away from an attacker. The ‘parasympathetic nervous system’ coordinates a ‘rest and digest’ response required for us to rest, repair, digest our food and expel waste products.

What is dysautonomia?

Dysautonomia is an impairment of the autonomic nervous system. It may manifest as problems with the bodily functions described above – changes in heart rate, blood pressure, breathing patterns, sweatiness and temperature regulation. The term dysautonomia includes a variety of conditions such as Vasovagal Syncope (VVS), orthostatic hypotension, orthostatic intolerance, Postural Orthostatic Tachycardia Syndrome (POTS), and primary autonomic failure. Autonomic problems can also be significant features of conditions like Parkinson’s Disease, Dementia with Lewy Bodies and Multi-System Atrophy. In our unit we have also seen a lot of people with autonomic problems following infection with Covid-19 infection.

What are the symptoms of dysautonomia, and why are they worse on standing up?

When these critical autonomic functions such as heart rate, blood pressure, bowel function and temperature regulation don’t work as they should, they can result in unpredictable and debilitating symptoms. These symptoms are associated with the body’s response to standing, and often get much worse when standing. They include:

• Fainting (syncope)
• Feeling as if you are about to faint (presyncope)
• Dizziness
• Palpitations
• Heart racing
• Shortness of breath
• Chest pains
• Anxiety and feelings of panic
• Sweating excessively
• Difficulty regulating one’s temperature
• Nausea
• Intense fatigue
• Shaking limbs
• Headaches
• Difficulty doing any activity or exercise
• Difficulty concentrating and ‘brain fog’

Why do my symptoms get worse with standing?

Standing up (something that we usually do without thinking) is a work of exquisite coordination, and is executed by the autonomic nervous system (ANS). Any problem with the ANS, then, may be revealed by symptoms on standing up.

When we stand up, one third of our body’s blood goes to the lower part of the body (pooling with gravity). Sensitive sensors in the heart, neck and lungs detect less blood immediately and send alerts to the brain. The brain then responds by making the heart beat faster and more vigorously, to try and maintain the blood returning the heart and brain. It does so by activating the sympathetic nervous system (the ‘fight or flight system’) and releases adrenaline and other hormones to squeeze the blood vessels (vasoconstriction) and propel more blood to the heart. Normally, these brief changes happen in only seconds and allow us to carry on standing without allowing our blood pressure to drop too much.

In dysautonomia, there is an impairment in the ANS in some way. For example, in POTS, the response of the sympathetic nervous system can be over-zealous, resulting in prolonged heart racing and vigorous heart beating (which can be felt as palpitations or chest pain or even breathlessness, as if you have been running). In orthostatic hypotension, the blood pressure does not respond to the compensatory work of the heart and brain and the blood pressure remains low and makes the person feel faint or dizzy. In most dysautonomia conditions, there will be several ANS impairments resulting in a spectrum of symptoms. The sympathetic nervous system can remain activated for too long, leaving the person in the ‘fight or flight response’ – the circulating adrenaline can leave you feeling anxious, panicky, jittery or exhausted. If this response happens several times a day, you can be left feeling anxious and exhausted – purely for trying to stand up! This may also explain why you may feel constantly on ‘edge’ or ‘wired’ all the time.

People with dysautonomia often find that their symptoms are unpredictable and debilitating. Even when the symptoms are under control, they can stop you from doing what you need to, want to and enjoy doing, and living your best life.

Many of the symptoms of dysautonomia are invisible and so other people may not be able to see what you are going through. Some of the symptoms can be mistaken by doctors for stress and anxiety and a lot of patients report significant delays in diagnosis. This can be incredibly frustrating.

It is very important to realise that you are not alone, and that you are not the only person experiencing these symptoms. While there are no specific cures (yet! But a lot of work is being done in this area) there is a lot that you can do to get better.

Tips, tricks and life hacks 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 rates are. 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 www.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 – https://www.sigvaris.com/en-gb/
Bauerfeind – https://www.bauerfeind.co.uk/en_gb/
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. Some examples are shown in Diagram 2.

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:
https://potsuk.org
Dysautonomiainternational.org
Dysautonomiatoday.com

Click these links for patient-led blogs and support groups you may find helpful:
https://chronicallyjenni.com
throughthefibrofog.com/living-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 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 here for more information about HeartMath

15) Hold onto hope
The very fact that you are reading this fact sheet 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

Why are people with dysautonomia often diagnosed with anxiety? Why am I exhausted?

If you have persistent pooling of blood in your lower body, your brain will keep activating your sympathetic nervous system to make your heart beat faster and more vigorously, and to start squeezing the vessels in your legs (vasoconstriction). If this is not corrected (for example, people with Ehlers-Danlos syndrome, or blood pooling that they can’t control) then the sympathetic nervous system can remain chronically activated. The main hormones involved in this response are adrenaline and noradrenaline which are essential to maintain blood pressure. However they also keep you in a persistent state of ‘fight or flight’ – which is beneficial if you need to run away acutely from a threat (the purpose of the sympathetic nervous system) but not appropriate for chronic situations in everyday modern life. Thus, whilst a short burst of this ‘fight or flight’ is helpful to navigate short term challenges in life, the constant ‘fight or flight’ response can leave you feeling anxious as if your body is primed and ready to respond to a threat – 24 hours a day. Associated symptoms can be panic attacks, tremors, and anxiety, insomnia, as well as exhaustion. You may also find yourself increasingly susceptible to picking up infections such as a common cold, tonsillitis or gastric virus, as your immunity weakens with chronic stress. In addition, chronic activation of the sympathetic nervous system may cause effects on your gut (including slower digestion, reflux, constipation), skin (acne, eczema, dermatitis), reproductive system (reduced sex drive and reduced fertility), shortness of breath, palpitations and headaches and lack of concentration.

These symptoms are invisible and not readily detected by basic examination and tests, so can often be misdiagnosed as anxiety.

How might stress worsen my fainting or pre-fainting symptoms?

In the same way, if you are feeling stressed or anxious, then your already activated sympathetic nervous system may be even more pronounced – so your heart beating fast and hard, anxiety and sweating may be quite severe.

Breathe yourself better!

The good news is that there is increasing evidence that you can take control of these symptoms and actually control them through your breathing and heartbeat, calling off the sympathetic response and upregulating the parasympathetic nervous system. It is also really easy to do and needs no equipment. Any exercise involving deep and regular breathing (meditation, mindfulness, biofeedback such as HeartmathTM, or yoga) can slow down your heart rate and upregulate the parasympathetic nervous system. Doing this alone can result in calming the mind, but if you combine your breathing with feelings of gratitude or compassion, significant benefits in mood and wellbeing are seen. This actually modifies your heartbeat to a healthier pattern and can influence your brain to be calmer. If you practice this regularly, you can modify the neural pathways involved which results in longer term benefits. Breathing at 6 breaths/min (which involves breathing in for 5 seconds and out for 5 seconds (a ‘breathpacer’ can be helpful for guiding this) seems to be the optimal pace for controlling your heart rate into a state of optimal health.

At Stopfainting we use HeartMathTM because the app gives get direct feedback on your heart rate from different breathing patterns, but there are many ways of doing this. We recommend trying different things and seeing what works for you.

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