Lupus Headaches: Causes, Types, and Treatments

Lupus headaches are a notorious and well-known symptom of lupus. However, they can also be difficult to describe for Lupus Warriors.

Headaches are a common symptom of systemic lupus erythematosus (SLE). Previous studies have varied on their expected prevalence, but up to 78% of people with lupus experience headaches. According to a 2006 study, people with lupus are more likely to experience migraines than people with other diffuse connective tissue diseases (DCTD).

These headaches can come in many forms, can be very frequent, and can be very painful. Unfortunately, much remains unknown. It is unclear if headaches in lupus are actually different from headaches in otherwise healthy people, if they actually occur at higher frequencies in people with lupus, or if they require special treatment.

You can read more about migraines, headaches, and lupus, here.

What Causes Headaches?

Anything involving the head can trigger or contribute to a headache. This includes:

• Blood clots, narrowed blood vessels, and thickened blood vessel walls that restrict blood flow to the brain
• Inflammation or infection in the sinuses, empty spaces that produce mucous and drain into the nose.
• Eyestrain
• Muscle tension in the head and neck.
• Problems in the central nervous system, especially the brain, can also lead to headaches. You can read more about the neuropsychiatric symptoms of lupus here.
• Menstruation and menopause can also cause headaches.

SLE causes or leads to many conditions that are known to contribute to headaches. Lupus has been linked to:

• Emotional stress
• Joint pain, including in the jaw and/or neck
• Fatigue
• Dehydration and/or malnutrition
• Inflammation
• Nervous system damage
• Cardiovascular symptoms including high blood pressure or heart disease. (You can read more about lupus and the heart, here.)

Weather, pressure, and temperature sensitivities common in SLE can show up as headaches. People with lupus are also more vulnerable to infections. Certain diseases, such as yellow fever and the flu, can cause headaches, especially if fevers are involved.

Incidentally, Sjorgren’s Syndrome, another autoimmune disease that attacks important glands throughout the body also has headaches as a symptom. It can overlap with SLE and might exacerbate it. Since the diseases both are autoimmune, the idea that the immune system itself might be responsible for the headaches has been explored.

However, it is not currently thought that the autoantibodies that attack the body’s own cells and lead to SLE actually cause headaches. The frequency or severity of headache isn’t linked to these autoantibodies or to how active the disease is, and lupus-specific treatments don’t appear to affect the headaches much, if at all. In fact, many lupus medications have headaches as a side effect, including non-steroidal anti-inflammatories (NSAIDs,) corticosteroids, antimalarials, and anti-hypertension medications. 

Types of Headaches

While there are many different types of headaches, they are typically classified into a few basic types: Primary and Secondary.

Primary headaches are an overload or malfunction in the pain receptors in the head. This overload involves either by changes in chemical activity in the brain, changes in the health of the neurons and blood vessels in the skull, or tension in the muscles of the head and neck. Genetics can predispose people to primary headaches.

Secondary headaches are similar, but the pain is a symptom of some other issue in the body.

Headaches in SLE can be of either of these headache types. These two types can be further broken down into:

Tension headache

Tension headaches generally take the form of a gradually increasing pain, usually felt as a tightness around the circumference of the head or as a constant, dull ache. The pain may also spread to or from the neck. Tension headaches can last for a few hours at a time, then fade, or in severe cases, several days. Usually, these fade on their own, but sometimes, in the case of chronic tension headaches, can ebb and flow continuously over the course of a month.

Medication Overuse Headache

Opiate-based medications such as codeine and morphine can relieve pain, but over time, the body adjusts to them, a process called tolerance. Tolerance can lead to painful headaches, along with other symptoms of opiate tolerance. It is generally best to use NSAIDs and other methods to treat repeating problems like headaches.

Cluster Headaches

Cluster headaches are frequent headaches that can be of varying duration. Their primary feature is that they happen more or less daily, at approximately the same time. This can range from multiple cluster headaches a day, to only near-daily, with a skipped day here or there. The exact symptoms of cluster headaches vary and, aside from pain (often around one eye,) they can include:

• A blocked or runny nose
• A drooping eyelid
• Tearing and redness in an eye
• Cold sweats, usually around the face

No matter what symptoms they present, cluster headaches usually come in swarms for about 4-12 weeks and then all of the symptoms disappear completely for a time. This total break from the cluster headaches is called remission, and the length of time depends on the person suffering from headaches but they can be months or even years.

Thunderclap Headaches

Thunderclap headaches are sudden, painful headaches that seem to come out of nowhere, like thunder. They are incredibly painful, and can last longer than 5 minutes. Thunderclap headaches are secondary headaches, which are often a sign of life-threatening conditions, including aneurysms, strokes, and infections such as meningitis. People with lupus are vulnerable to all three of these conditions, and a thunderclap headache is generally a signal to get medical assistance immediately.

Migraines and Lupus

Migraines involve the physical structure of the brain, as well as the person’s brain chemistry. In addition, they are different from other headaches in that they generally follow a certain structure:

Prodrome, or pre headache. This can last hours, or days. This usually happens in response to a trigger in the environment.

Aura, blurred vision or hallucinations that herald the headache, usually an hour before.

Headache, the pain itself, which generally occurs on one side of the head as a throbbing, pulsing pain. It can change sides, vary in severity and can also come along with nausea, balance issues, disorientation, mood changes, and brain fog. These other symptoms can occur during the prior stages, and linger afterwards.

And finally, Postdrome, or the “migraine hangover,” a state of fatigue and recovery that can drain the person for days.

Occasionally, the migraine will skip steps – they can occur without the aura or without the headache. They may be more prevalent in people with SLE, but evidence has been shaky.

Treating Headaches

Because they share similar causes, headaches, nausea, brain fog, and fatigue are often linked together, and people with lupus frequently have more than one ailment at a time. This also means that many headaches can be alleviated or prevented through proper hydration, a good night’s sleep, and stress-relief techniques. Headaches also generally go away with time, though pain-managing medications can help reduce the intensity of the pain enough to live with. SLE medication and stress reduction strategies can help reduce the likelihood of headaches in people with lupus, as well. Some people use alternative medicine such as acupuncture and mindfulness meditation for headache pain relief, with some results.

Certain headaches may call for prompt medical care instead of painkillers, however. According to Harvard Health, you should worry when:

• You only begin developing headaches after age 50.
• Your headaches change in frequency, regularity, or triggers.
• You start having more intense headaches.
• If coughing or moving increases your pain.
• The headaches become chronic (long-term) and worsen over time.
• You experience personality changes along with the headaches.
• Or your headaches follow a head injury or trauma.

People with lupus who are on immunosuppressant drugs should be extra vigilant, as they are more vulnerable to infections that can have headaches as a symptom.