For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease. 

That is why we decided that all the symptoms on this website should be written by patients, for patients.  As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”. 

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too. 

About the author

I was in my late 40s when I caught Covid-19 in May 2022. Life was busy, with a big family and a growing therapy practice. Although I wasn’t as fit as I had been in my 20s and 30s, I was quite physical. I could easily walk or bike to the shops and meet my kids from school. My mahi | work involved a lot of ‘thinking on my feet’ and admin responsibilities involved a fair amount of time on my computer.

My life now is a lot slower. I know that I must pace myself and factor in whakatā | rest periods. My body feels like a faulty phone battery saying it’s 100% charged, but it’s actually only 50% charged, and needs regular top-ups during the day so it doesn’t crash to 0% without warning. Dizziness is the last stage of my ‘battery crash’.

Fortunately, I can work with a reduced caseload. But prioritising work creates a trade-off against other activities I enjoy. Sometimes, by necessity or by choice, I exceed my limits and this will result in a ‘crash’. Then it takes a few days, sometimes longer, to recover. I need a lot of moe | sleep. Certain triggers, such as heat, seem to directly cause dizzy spells no matter how carefully I pace myself.

– Female, Pākehā, Pari-ā-Rua/Porirua

“Mind overboard” by Tracey Thorp: Dizziness feels like like I’m on a rocking boat with one part of my body going one way and another part going the other

A brief explanation of dizziness and Long Covid

Hundreds of biomedical studies now show that the virus attacks multiple bodily systems, not just the respiratory system. A common symptom of Covid-19’s impact on the neurological system is dizziness. There can be many sub-causes for the dizziness, but for most Kowheori Roa | Long Covid patients, dysautonomia is likely to be the cause – a dysfunction with the autonomic nervous system (see sidebar for explanations).

Some people seem to have a predisposition towards dysautonomia, and people with pre-existing dysautonomic conditions also seem to be at risk of developing further complications following a Covid-19 infection. There is also a suggestion that prolonged bed rest and a decrease in blood volume during an initial Covid-19 infection may contribute to difficulties with blood pressure.

Dizziness is a common symptom of Postural Orthostatic Tachycardia syndrome (POTS) which is a common syndrome that occurs alongside Long Covid.

In my experience

I began experiencing bouts of dizziness and nausea in the acute phase of my Covid-19 infection. That led to a fairly dramatic collapse at the doctor’s surgery, and again at the emergency department. After ruling out acute heart or lung problems, the hospital sent me home to self-manage with tautoko | support from my GP. They didn’t really seem to know how to āwhina | help, other than to recommend I rest and wait.

Many of my post-viral symptoms have improved, but the ones likely to be related to dysautonomia remain, including the dizziness. Standing still for long periods makes it worse. Also, my body over-reacts to emotional stress and I’m still at risk of fainting, particularly from triggers such as heat.

What others say it feels like

Most people stress how nauseating and discombobulating dizziness is:

“When I was bad, I was so dizzy I couldn’t walk and had to crawl to the bathroom… My dizziness was linked with a super-fast heart rate. That was very scary and I’m super-glad it has settled now.” – Jessica

“Dizziness kind of felt like I was seasick, without leaving my house. There wasn’t anything we could really do but rest and wait for it to go away.” – Anonymous

“It feels like my body is one step ahead of my brain, with my brain trying to catch up.” – Kevin

What I and others have tried

There’s a lot you can do to treat dizziness related to dysautonomia.

Increase blood volume:

  • increase your fluid intake – preferably water

  • increase the amount of salt in your diet

  • isotonic sports drinks can help to replace electrolytes, but avoid drinks that contain a lot of sugar or caffeine

  • avoid alcohol, coffee and other drinks that can dehydrate you.

Help system to restore blood to heart and brain:

  • Wear compression leggings, which apply pressure to the legs and abdomen. This reduces blood pooling and encourages the blood vessels to constrict and return blood to the upper body.

  • Counterpressure exercises work on the same principle, engaging the leg and abdomen muscles to encourage blood return. This video is a really good demonstration of these exercises. Please be careful doing any exercises if you suffer from PEM.

  • Lie down regularly, with legs elevated if possible.

  • Avoid standing still for long periods.

Breath work:

Your breathing is the only part of the autonomic nervous system that you can control. It’s possible to use breathing techniques to re-engage the parasympathetic part of your autonomic nervous system, regain balance and reduce your symptoms.

  • Practise coherent breathing. Filling from the bottom of your lungs, breathe in slowly to a count of four or five, then breathe out to the same number.

  • Couple this with a meditation exercise focused on the breath.

Listen to your body:

  • Learn to recognise the ‘warning signs’. If you are at risk of fainting, act quickly! Signs might include a racing heart, sweating, pins and needles, pale skin, headache, nausea, and visual or hearing disturbances (eg. ‘tunnel vision’ or ringing in the ears).

  • To avoid fainting, lie down with your legs elevated. However, if this is not possible, squat with your knees apart and your heart level with your knees.

  • You may feel exceptionally tired after a bout of strong dizziness, and need to moe | sleep.

Medication:

If you’re lucky enough to get a referral to a specialist, there are medication options that can help to regulate blood pressure.

How others can help

  • Provide seating, especially in social situations where the ‘norm’ is for people to stand.

  • Provide water and non-caffeinated drinks.

  • Be supportive, but don’t offer unsolicited advice. ‘Have you tried…’, ‘Are you getting enough/too much sleep…’, ‘Have you considered making changes to your diet…’ are all really unhelpful!

  • If you want to offer practical help, drop off a meal or some flowers, offer to pick up some supplies. Invite kids over for playdates or offer to pick them up for school on your way through.

  • Try asking what āwhina | help someone needs. But be aware that your friend or family member may feel so unwell that they can’t articulate or even think what help is needed.

  • Stay in touch, even if it is only via text or a messaging app. Living with Long Covid can be a very lonely experience.

Clinical information 

Do you experience dizziness? Understanding the autonomic nervous system and how dysautonomia interrupts the body’s balance can be really helpful in reducing dizziness and fainting episodes.

The autonomic nervous system (ANS) controls the body’s automatic systems. Anything you don’t consciously think about doing is probably governed by the ANS, such as breathing, heart rate, digestion and sexual arousal. The system is constantly working within your body, whether you’re awake or asleep.

Dysautonomia is the umbrella term for disorders of the ANS, where the body’s automatic functions don’t work correctly. There are many forms of dysautonomia with different causes, but viral infections are often the trigger.

Instead of the ANS working fluidly, it becomes hijacked. When you stand up, blood pools in the lower body and is not pushed efficiently back to the heart and brain. This means the body gets stressed and places your system into a fight/flight response. The heart rate may increase considerably or may not respond enough. These inappropriate responses result in several symptoms, including dizziness, which feel considerably worse than ‘standing up too quickly’.

It’s also worth noting that dysautonomia affects many bodily functions governed by the autonomic nervous system. So if you’re experiencing dizziness due to dysautonomia, you may also be experiencing difficulties with any of the body’s other automatic functions.

There are strong similarities between some of the common symptoms people experience during Long Covid and Postural Orthostatic Tachycardia Syndrome (POTS). POTS commonly occurs following a viral infection.

Not all Long Covid patients experiencing dysautonomia will fit a POTS profile, but most will experience increased symptoms on standing (called orthostatic intolerance). However, this improves when lying down.

How is dizziness diagnosed?

  • Taking a patient’s medical history.
  • Orthostatic blood pressure test. Your blood pressure is taken when sitting or lying down, when you have been standing for one minute, and then again at three minutes (or some variation of these intervals).
  • As Dr Boon Lim explains, for some Long Covid patients, finapres monitoring may be more accurate. This device goes on your finger and gives beat-to-beat readings. It is commonly used in tilt table tests.
  • Via an electrocardiogram (ECG).
  • Performing a tilt table test.

Top 5 things to try

In a spin?! Try these quick tips:

  1. Work on your pacing/activity management.
  2. Do some breath work.
  3. Wear compression leggings.
  4. Avoiding heat and standing for long periods.
  5. Do counterpressure exercises to directly prevent a fainting episode.

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.