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

Before I caught Covid-19 in March 2022, I was very fit and active. I walked every day, attended dance classes every week and ran my own business while also looking after three tamariki | children.

When I got the virus in my early 50s, my health took a major hit. As well as breathlessness, fatigue and heart issues, I had difficulty sleeping, and asked my doctor for āwhina | help with this. Ten months after my infection, my moe | sleep has thankfully improved lots – but if I overdo it, symptoms can quickly return.

– Non-binary, European, Pōneke/Wellington

<em>The Circle of Night by Tracey Thorp<em>

A brief explanation of insomnia and Long Covid

Insomnia (rarunga moe) in Long Covid may have links to inflammation, dysautonomia and neurological issues such as brain fog.

In a recent study, people with Kowheori Roa | Long Covid were found to spend more time awake during the night after having initially fallen asleep. They also had less light- and deep-sleep time. Most people with post-Covid moe | sleep issues said they found it hard to get to sleep, and many who were waking in the night also had brain fog. Sleep is important for immunity, the cardiovascular system and metabolic functions, so disturbed sleep can compound other health problems.

Some people with Long Covid develop Postural Orthostatic Tachycardia Syndrome (POTS). This form of dysautonomia has links to poor quality of sleep.

Some people with Long Covid develop Mast Cell Activation Syndrome (MCAS). This involves chronic inflammation and also has links to insomnia.

In my experience

When I had Long Covid insomnia, I had difficulty getting to sleep and woke multiple times in the night. This meant I would never feel rejuvenated after a night’s ‘sleep’.

My other symptoms, such as brain fog, increased heart rate and breathing issues, worsened during the night. My worst nights were when I also had MCAS symptoms after accidentally eating high-histamine foods. (MCAS is related to high histamine levels in the body. Certain foods that are high in histamine can make MCAS symptoms worse.)

Insomnia limited what I could do during the day, because I was tired. In the evening, I was also restricted because I needed to wind down. It meant I couldn’t join in with a lot of the activities I used to enjoy. Sometimes I felt too tired to drive safely, which meant I couldn’t use the car.

Some days were worse than others, but this was always hard to predict in advance. This made it hard to plan my week. I soon realised that I couldn’t plan too much in a week, or even a day, as I needed to have downtime between busy times and busy days. This was frustrating, as I had to say no a lot!

What others say insomnia feels like

Other people with Kowheori Roa | Long Covid often report difficulty falling asleep. They wake frequently in the night and find it hard to get back to sleep again. Some people find their sleep schedule becomes quite disrupted, as they end up sleeping whenever they can.

“Insomnia causes an inescapable feeling of intense dread and absolute exhaustion. It makes you fear night-times and dread mornings. You would literally do anything to be able to sleep and it’s all you can think about.” – Anna

“The fatigue that insomnia induced on an already exhausted post-viral body and mind was far worse than newborn baby fatigue.” – Anonymous

What I have tried

Here are a few things that I found helped when I had difficulty sleeping. Even though I’m doing a lot better now, I’ve kept most of these things going as they’re still helpful.

  • Sleep hygiene: this is the routine you have before bed and the way you set up your bedroom. I started having a bath a couple of hours before bed and then just reading and relaxing. I also have blockout curtains and try to keep my bedroom cool.

  • Resting between activities during the day: this really helps with Long Covid generally. I found I sleep better when I’ve taken more breaks to whakatā | rest during the day.

  • Morning sunlight/bright light therapy: getting out in the sunshine in the morning can really help with your body clock. I do this, and also have a therapy lamp for mornings on winter days when there’s less sunlight.

  • Yoga nidra: a very relaxing type of meditation that can help you get to sleep and sleep more deeply.

  • White noise: this can help block out other noise to make it easier to sleep. I use a white-noise function on my phone, or you can use an app.

  • Rearranging your schedule: whenever possible, it was better for me to do social activities and other events during the day instead of in the evening. Then I could use my evenings to wind down.

  • Work on your other symptoms: the more I looked after myself and treated my Long Covid symptoms, the better I slept.

  • Antihistamines and a low-histamine diet: treating my Long Covid-related MCAS symptoms (with H1 and H2 antihistamines and a low-histamine diet) improved my sleep.

  • Cold water therapy: when I could manage it, a dip in the sea or a cold pool helped me sleep better that night.

What others have tried

  • Hot drinks with magnesium at night.

  • Slow-release melatonin: your doctor may be able to prescribe this for insomnia with Long Covid. Some people find it helps.

  • Menopausal hormone therapy (MRT): previously called hormone replacement therapy, or HRT. If you have ovaries and are 40+, consider talking to your doctor about treatment for any perimenopausal symptoms, including difficulty sleeping. Some people find that treating their perimenopause and menopause symptoms with MHT can help them sleep easier.
  • Some people have found promethazine, an anti-histamine often marketed under the name Allersoothe, helpful as it acts as a non-addictive sedative. Your doctor can prescribe this.
  • Your doctor can also prescribe medication such as Quetiapine, a non-addictive sedative, though some people have found this created weight gain. They may also prescribe Zopiclone, however this should be used for short term use only as it is addictive.
  • Te whare tapa wha is a health and wellbeing model developed by Māori health advocate Sir Mason Durie. It describes health and wellbeing as a wharenui (meeting house), with four walls representing different types of wellbeing – physical, mental, spiritual and family, health – grounded by a connection with the whenua (land). The model says that when all these things are in balance, we thrive. This model can be helpful for addressing any health issue, including insomnia in Long Covid.

The best advice I received

Whakatā | Rest between activities during the day, and try yoga nidra or another form of meditation.

How others can help

I’d like it if you try to understand what having insomnia is like. Sometimes I can’t join in activities or have to cancel plans because I haven’t slept enough.

Having break-out spaces where I can rest at events, workplaces and social outings would be really helpful.

Clinical information

In a recent study, 50% of people who developed Long Covid following Omicron had disturbed sleep. Many people with Long Covid who had sleep disturbance also had fatigue, headaches, loss of concentration, brain fog and symptoms associated with anxiety.

Further study is needed to clarify the underlying mechanism for sleep disturbance in people with Long Covid.

How is insomnia diagnosed?

To diagnose insomnia, a medical practitioner will ask you about your sleep habits and may ask you to keep a sleep diary.

Another study on insomnia during the first wave of the Covid-19 pandemic found the risks of insomnia were higher among people who had had Covid-19, had a greater financial burden, were isolated for 4–5 weeks, and those who lived alone or with more than five people in the same household.

Insomnia can be short term or long term. Short-term insomnia may last for a few days or weeks. Long-term insomnia occurs three or more times a week for more than three months.

Top 5 things to try