Dysautonomia in long COVID – Rotherham Doncaster and South Humber NHS Foundation Trust (RDaSH)

What is Dysautonomia?

Dysautonomia is an umbrella term which describes a disorder of the autonomic nervous system (ANS). The ANS controls bodily functions.

An event or trigger, such as a viral illness (like COVID) or bacterial illness can sometimes cause a dysregulation to this part of the nervous system. However, this doesn’t mean that everybody who develops Long COVID will have dysautonomia.

While there is no absolute cure, speaking to somebody who understands this condition and can provide you with self-management techniques can help to ease these symptoms.

Sometimes recognising the things which can trigger episodes can help you to avoid these triggers and lessen the symptoms.

What is the autonomic nervous system?

This is the part of our nervous system which controls and regulates automatic processes.

This includes regulating our heart rate, blood pressure, temperature, digestion and breathing. When dysregulation occurs, these functions can be altered, resulting in
symptoms which might include:

dizziness or light-headedness
palpitations (sensations of the heart rate racing, pounding, fluttering or feeling irregular)
fatigue
fluctuating heart rate (which may be abnormally fast or slow)
changes in blood pressure
chest pain
breathlessness
transient loss of consciousness
visual disturbances
problems with balance
migraine
excessive sweating
bowel and bladder changes
difficulty sleeping
cognitive changes
erectile dysfunction

Why can COVID cause Dysautonomia?

Further research is needed into this condition, but it is believed that COVID may cause an altered immune response in the cells of the body, and this triggers a dysregulation of the autonomic nervous system (ANS).

The ANS has 2 parts, the sympathetic nervous system or SNS and the parasympathetic nervous system or PNS.

The SNS often responds when we encounter a threat, stress, or worry and this results in a fight or flight response. This response can cause symptoms which include a faster heart rate, breathlessness, sweating, agitation, anxiety, palpitations, feeling lightheaded and an increased need to urinate.

An example of this could be as follows, have a think about how you felt prior to going into an interview or into an exam, you may remember feeling anxious, having sweaty palms, struggling to think clearly, tummy churning, heart racing, breathing faster, needing to go to the toilet more frequently. This is a good example of how the ANS is responding to stress and how the release of adrenaline makes us feel.

The PNS is the part of the nervous system which restores calm, relaxation, and rest and this comes into play to allow the body to recover. These parts are usually well balanced.

The SNS appears to be involved in triggering many symptoms of Long COVID. The body remains in fight or flight mode after the initial infection has gone. The body is almost on alert, looking out for any other ‘dangers or threats’ that may be coming, and almost loses its ability to switch itself off. This nervous system response tends to throw many of the body’s systems out of synchronisation, hence the array of symptoms as mentioned above.

Postural hypotension

This is a common form of Dysautonomia and relates to a drop in blood pressure on standing which can cause you to feel dizzy on standing.

In normal situations, when we stand, gravity causes some of our blood to flow down to the abdomen, hands, and feet. In response to this, the blood vessels narrow, and the heart rate increases slightly to maintain blood flow to the heart and brain. This normal response prevents our blood pressure from dropping.

In postural hypotension this narrowing response doesn’t happen, so the heart has to beat much faster (tachycardia) as a compensatory strategy in the attempt to maintain blood pressure.

Postural orthostatic tachycardia syndrome (POTS)

This is a less common form of Dysautonomia and relates to an abnormal and sustained increase in the heart rate after sitting or standing up. It is diagnosed if your heart has an increase of 30 beats per minute or more in adults, within 10 minutes of standing and is sustained for the length of the stand and in the absence of low blood pressure.

With POTS there is an abnormal response to being upright. Common symptoms people can experience include dizziness or fainting, rapid palpitations, chest pains, shaking and sweating, nausea, fatigue and weakness, difficulty thinking, vision disturbances and headaches on being upright. These symptoms can occur almost immediately or a few minutes after sitting or standing up. Laying back down often relieves symptoms.

Some people may notice that a hot environment, eating or exercise can also make their symptoms worse.

What can I do if I think I have Dysautonomia?

Where symptoms require further investigation, the long COVID clinic will carry out further questioning and simple tests including an active stand test while monitoring your heart rate and blood pressure over 20 minutes (after 10 minutes of laying down and then in standing and every 2 minutes to 10 minutes of standing).

We may loan you a Kardia monitor which is a portable device which allows you to measure your heart rate and rhythm. We may also loan you a blood pressure monitor, to monitor your blood pressure over a 24-hour period. If it is indicated, we may also organise for you to have a 24-hour heart monitor.

Your clinician in the long COVID clinic would then advise you further.

Lifestyle changes

One of the key treatments for your symptoms can be simple lifestyle changes. We can advise on some helpful self-management techniques to try to ease some of your symptoms. The good news is that some simple lifestyle changes can significantly improve your symptoms.

Good breathing

There is a common link between breathing pattern disorders and some of the symptoms of dysautonomia, including:

dizziness
increased heart rate
palpitations
chest tightness

Good breathing and relaxation can help to lessen these symptoms. The following is a technique that you can use safely.

The aim of this technique is to restore the balance of the ANS by stimulating the vagus nerve which in turn innervates the PNS to help us to rest and relax.

Relaxed breathing

Try laying in a comfortable position, place one hand on your upper chest and one hand on your tummy.
Start to notice how you are breathing and where the movement is coming from.
Try to relax your breathing, taking light slow breaths in and out through the nose.
Try to breathe quietly so that you cannot hear your own breathing.
Try to focus on your tummy, as you breathe in your hand should gently rise upwards and when you breathe out your hand should gentle fall back down.
The head, neck, shoulders, and upper chest should remain completely relaxed as you breathe in and out.

Once this feels more comfortable, try making each out breath a little longer.

If you can manage this, now add in a brief pause after the out breath and wait for the next breath to come naturally.

Relaxation music can be helpful to use when practising relaxed breathing. See some of our relaxation audios:

Manage your fatigue

Post viral fatigue is known to affect the ANS. If you have symptoms of fatigue associated with long COVID, learning to identify what makes your fatigue worse (fatigue triggers) and learning to manage your fatigue can also help to reduce the symptoms associated with dysautonomia.

The best way to manage post-viral fatigue is through awareness, pacing and lifestyle changes. Understanding your fatigue and how it affects you will allow you to have better control. Recognising what triggers or exacerbates your fatigue, will allow you to be able to better manage this.

Maintaining good sleep hygiene is also key to improving energy levels through the day. Relaxed breathing and meditation can also help with sleep. There are other useful tips on how to promote restful sleep in the links at the bottom of this leaflet.

Try completing the fatigue diary below and use the fatigue score after each slot of time to help you to determine which activities cause high levels of fatigue. It can also be useful to record your score at the end of the day and each morning. Sometimes it is the effect of multiple activities that can worsen your fatigue which you may not feel until much later in the day, the following day or even days after.

When thinking about how to manage fatigue, it can be useful to think of the body as a battery. We want our battery to last all day, so if you identify that you are running out of battery power by lunch time or mid-afternoon for example, or that you have no battery power remaining at the end of the day, try to look at adjusting the things you are doing during the day. It is better to top up your battery regularly than to run it down to empty,
where you are then left with no energy at all and need much longer to recharge it.

Planning, prioritising and pacing are key strategies to use when you have fatigue

Planning

Spreading activities out over the week can help to conserve energy. Adapting activities can be helpful. Could you make the activity easier? For example, sit down to iron. Change the time of day of an activity if you have certain times of day when you are more symptomatic.

Plan how you do a task which you know will leave you feeling wiped out, for example completing tasks upstairs before coming down, so you are not spending energy going up and down the stairs. It can also be helpful to plan what you need. For instance, if you need the vacuum cleaner upstairs, can someone else take this up and down the stairs for you.

Prioritising

Consider if what you are planning to do is essential. Split up tasks into more manageable sizes. It may be useful to ask yourself, what is the worst that would happen if I didn’t do the housework today or if I don’t cut the grass, or if I do some but not all the chores in one go?

Pacing

Factor in rest breaks and avoid boom bust at all costs. When you cannot avoid an activity which you know will leave you exhausted, plan in a rest break afterwards, even of this means resting more the following day. What can you ask for help with? Can someone help with the more physical tasks for example, lifting the shopping bags.

These strategies will help to save that battery power and over time will help to stabilize your fatigue until you are ready to start to rebuild your activity and exercise levels up again with advice from your long COVID clinician.

Have some me time

While prioritising the essential things, don’t forget to have some “me time” to make sure you are taking care of your wellbeing. What can you put off until another day to allow yourself this valuable time?

Overdoing things, not listening to the body and not resting adequately can lead to a pattern of “boom and bust” or “symptom crash” this is known as post exertional symptom exacerbation (PESE).

Constantly booming and busting can result in a delayed recovery from long COVID.

Fatigue doesn’t just affect us physically. Cognitive and emotional strain can also contribute to fatigue. We often hear people say, “I’m so fatigued but I haven’t done anything” and on exploring this further it is often the case that the emotional strain of looking out for a relative or friend or the cognitive strain from working on a computer all day or driving can also run the risk of draining the battery.

Eat a healthy diet

Eat a healthy balanced diet and drink plenty of fluids (a minimum of 6 to 8 glasses a day. Eat small meals and more often as opposed to large heavy meals. Consider taking a multi vitamin with B vitamins, iron, and vitamin D, ask you pharmacist for advice.

Speak to others about your symptoms

Ask for help, whether this is at home or at work.

Talk to your employer and explain how you are feeling. They may be able to help with reasonable adjustments to enable more frequent rest breaks, a more suitable working pattern or a less physically or cognitively demanding role just while you continue to recover.

Please visit the website of the Royal college of occupational therapists (opens in new window) for further tips on how to conserve your energy.

Other self management tips

Keeping yourself well hydrated with fluids is vitally important.
Keep an activity diary to monitor the symptoms you get with activity. This may help you to avoid the symptom provoking triggers and maintain your condition at a more stable baseline.
Try to avoid or cut down on caffeinated drinks and alcohol.
Avoid prolonged sitting or standing.
Prior to standing try muscle tensing exercises, hand, buttock, and calf clenches.
Stand slowly from lying or sitting and ensure any dizziness passes before setting off.
Elevate the head of the bed so that you aren’t lying flat to sleep.
You could try wearing compression tights to improve the blood flow to the legs.
If you feel you need support with anxiety, the long COVID team can refer you to IAPT.
Try relaxation and mindfulness techniques. The long COVID team can provide advice and sessions.
Try to maintain some form of activity or exercise to prevent you from becoming deconditioned (your clinician will need to support you with this).
See your GP for a medication review if you suspect your medications may be causing your symptoms. There are lots of medications which can cause a raised heart rate.
If needed your GP can also prescribe medication to help to lower your heart rate.
Applied tension technique, see below.

Applied tension

If you are experience a drop in blood pressure accompanied by symptoms of dizziness and feeling faint or anxious, this is a simple technique which can help to increase blood pressure back to normal levels.

Sit down somewhere comfortably.
Tense the muscles in your arms, upper body, and legs, and hold this tension for 10 to 15 seconds, or until you start to feel the warmth rising in your face.
Release the tension and go back to your normal sitting position.
After about 20 to 30 seconds, go through the tension procedure again until you feel the warmth in your face.
Repeat this sequence so that you have practised the tension five times.

If you get headaches after doing this exercise, take care not to tense the muscles in your face and head. Also, be careful when tensing any part of your body where you have any health problems.

Fainting can be avoided by learning to take note of early warning signs such as light-headedness, dizziness, nausea, and sweating. If you feel as though you may faint, if possible, lay down and raise your legs or sit down if laying isn’t possible.

Further resources

For more information, use the link:

Document control

Document reference: DP8801/01.23.
Date reviewed: January 2023.

Page last reviewed: October 30, 2024
Next review due: October 30, 2025

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