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 mid-30s and travelling overseas with my family in July 2022. A family member developed mild symptoms, and I cared for them for three days before I tested positive. My case of Covid-19 was also mild, but we had the added challenge of isolating, with little local tautoko | support, in a hotel room overseas. We had contact with the New Zealand Ministry of Health contact tracing team, who were wonderful, but also could not āwhina | help much given we were not in New Zealand.

Covid-19 felt like I had caught a mild head cold, along with a sinus infection. I had a sinus headache in the front of my forehead, nasal congestion, a sore throat and a mild fever.

Most of those symptoms had gone within a week, but now I’m left with nasal congestion and a headache that comes and goes. I’m currently working reduced hours and have ongoing fatigue.

Female, NZ European, Pōneke/Wellington

A black-and-white line illustration of a woman with her head in a vice, showing what migraines and headaches feel like for Long Covid patients.
<em>Unrelenting Grip by Tracey Thorp<em>

A brief explanation of migraines and headaches

Many patients with Kowheori Roa | Long Covid develop headaches, either during their initial Covid-19 infection or during the recovery period. Most adults reach for an over-the-counter headache remedy.

Headaches are usually a benign but painful condition within the brain or face. Symptoms tend to improve when you lie down in a cool, dark room and take appropriate medication. Occasionally you’ll need to get expert advice from medical professionals to rule out other conditions.

  • During an initial Covid-19 infection, a headache can be a mild ache, or become severe and need further medical attention from a doctor.
  • During Long Covid, these headaches can stay around, or rebound as a new headache every so often.

Migraines are recurring headaches that can have different, more intense qualities to a normal headache. They can be more painful and long-lasting, give you nausea or an upset stomach, or make you throw up, cause you to lose your appetite. Often the only thing you can do is retreat to a dark, quiet room.

  • Roughly 1 in 10 people are diagnosed with migraine disease.
  • 40% of patients with migraines experience aura (light sensitivity, blind spots, floaties and other vision changes).
  • Migraines can have multiple causes: menstrual cycle/hormones, stress, lack of sleep, tense muscles in shoulders or neck, eye strain, being dehydrated, excessively consuming caffeine or alcohol.

In my experience

For me, headaches create an intense pain in my head behind my eyes. It makes me feel really sick and I often need to lie down. My headaches can lead to tunnel vision and dehydration from crying. Often, over-the-counter pain relief does not help.

I have also developed migraines and my new doctor prescribed me Rizamelt, which I take when a migraine begins. I use paracetamol or ibuprofen for headaches; I can generally tell when I’m getting a migraine, as I get an aura. Usually migraines come on when I am over-tired, or when I am under a lot of stress. Doing meditation, staying hydrated and prioritising my sleep all help me to keep my headaches and migraines under control.

What others say it feels like

While the experiences of those with migraines and headaches can vary greatly, many people describe them in similar ways.

“I have lost vision, an unsettled stomach, crying, light sensitivity, and sometimes a ‘hangover’ for a day or two where I am fragile and feel vulnerable.” – Karl

“I was largely unable to function for many months. Headaches restricted my ability to tolerate noise, and participate in or even be around usual family life. My balance was bad. My self-care was affected; I couldn’t shower or do anything requiring bending. I felt irritable and had to really focus to cope. I spent a lot of time lying down.” – Bronwyn

“At times, I have to stop working and take a day or two off until it passes – working in front of a computer is impossible.” – Sina

“I suffered from migraines pre-Covid. Mine start with an aura. My vision becomes blurry and there is a kind of disconnect when I’m looking at things. I usually become agitated pre-migraine and drop things. I start to feel nauseous and sometimes vomit. If I can lie down in a quiet room and sleep, I can sometimes reduce the pain, but for at least a day afterwards I feel like I have a hangover.” – Nicola

What I and others have tried

I have tried:

  • drinking electrolytes to rehydrate, and increasing my water intake
  • resting in a cool, dark, quiet room
  • over-the-counter headache medication and prescribed migraine medication
  • increasing my quality of moe | sleep, ensuring I get enough hours of rest – for me, that’s close to eight hours per night.

Others have tried:

  • acupuncture
  • caffeine – this can be a trigger for some people, and for others it provides relief. Be aware that it is a diuretic and will make you pee more
  • using a cool flannel or cold packs on head or neck
  • craniosacral massage with myofascial release
  • over-the-counter pain relief (eg. paracetamol, paracetamol with caffeine, ibuprofen) and prescribed medicines from GP or specialist (eg. Migril, Rizamelt)
  • homoeopathic remedies
  • placing a hot water bottle on shoulders and neck
  • noting when they took medication to ensure they didn’t overdose on any medicine. They recorded the date, time and what they took
  • a low-histamine diet (seek expert advice before changing your diet)
  • magnesium tablets
  • taking time off mahi | work
  • massage therapy, which sometimes temporarily relieves tense shoulders/neck
  • try a relaxing activity, such as meditating, to help ease the pain, depending on the type of headache
  • meditation/breathing exercises to help reduce stress and improve mental wellness
  • seeing a naturopath
  • getting a referral to a neurologist at their public hospital (through their GP)
  • making getting enough good-quality sleep a priority.

The best advice I received

Drink some water, take headache or migraine medicine, and have a lie-down or nap somewhere quiet and cool.

How others can help

Give you a shoulder/neck massage to help release tight muscles.

Help you remove distractions when resting: close the door and curtains, and provide a fan in the room, to make it dark and cool. Keep family in another part of the house if they are noisy.

Clinical information

Headaches are a chronic neurological disorder of the head and brain. They can happen due to the immune system being activated (eg. your body fighting the Covid-19 virus), or the trigeminovascular system being activated.

The trigeminovascular system “relays head-pain signals to the brain, plays a key role in migraine pathophysiology and has components in the periphery (ie. outside the blood-brain barrier) as well as in the central nervous system (ie. inside the blood-brain barrier)”.

A Long Covid headache may present as a migraine-type or a tension-type headache. These headache types tend to feel more severe than a dull ache. They often leave someone feeling sick, and seeking a cool, quiet, dark space to moe | sleep.

How are migraines and headaches diagnosed?

This is what a medical professional would look at to diagnose migraines and headaches:

  • Migraines often have an aura, and are one-sided in your head. You may feel sick or be sensitive to light and sounds.
  • Sinus headaches tend to be felt more at the front of your head and forehead. They are often a symptom of a sinus infection.
  • Your doctor will ask for your medical history of headaches or migraines, including whether other family members also get them.
  • They will ask if you have recently been unwell with a virus or other illness.
  • Rarely (in around 2% of the population), a condition called rebound headaches can happen if someone takes over-the-counter or prescribed pain medication for headaches too often. This is generally more than 10–15 days a month.

Seek medical advice if your migraines or headaches are not improving with pain medication, are happening more often or getting more severe. You may need to be assessed by a doctor.

A doctor may run simple tests and ask you questions about your migraines or headaches. Be honest about when they started, where it hurts within your head, how intense the pain is, what you have tried to do and what you have taken (medicine, vitamins, etc). Also tell them if this is a new symptom or you have had it before.

Call Healthline on 0800 611-116 if you need advice but cannot see your own doctor. It’s also worth getting regular eye tests.

What each stage of a migraine feels like

Onset: you may have aura, and feel pain or throbbing in the head or face.

You’ll need to stop any activity and rest, and you may feel faint. If you get migraines, take your medication at this stage to help reduce the severity of the attack.

During the attack: you may feel nauseous, dizzy, hot, sweaty or clammy. You may need a cold shower, cold compress or flannel on your forehead, and to retreat to a dark, cool room. Taking medication and drinking fluids are really important.

The pain can build up and last for hours, and may be a dull pain.

After: for the next few hours or days, you may feel exhausted and a little unwell. Take it easy, keep resting and drink fluids. Keep taking medication regularly.

If at any time you cannot control the symptoms, or symptoms are worsening – seek medical advice from a medical professional. Call 111 if you or someone else is in danger, or call Healthline for advice on 0800 611-116.

Top 5 things to try

  1. Lie down to rest in a cool, dark room without distractions.
  2. Increase water intake and try electrolyte solution.
  3. Take medications such as paracetamol and ibuprofen. If these do not āwhina | help, seek medical advice.
  4. Massage your shoulders/neck or get a craniosacral massage for myofascial release.
  5. Avoid noise, heat and prolonged screen use.

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.