Lupus Headaches: Causes, Symptoms, and Treatment [March 2025 Update]

posted in Symptoms In Lupus on December 2, 2024 by

Updated March 2, 2025

What Are Lupus Headaches?

“Lupus headaches” are a specific type of headache in SLE patients due to inflammation and immune system overactivity. These headaches can range from mild discomfort to debilitating pain. They are treated with drugs that calm down the immune system. Steroids, hydroxychloroquine, anifrolumab (Saphnelo), belimumab (Benlysta), methotrexate, azathioprine, and mycophenolate mofetil are examples.

Lupus headaches tend to not respond well to the usual headache medicines like NSAIDs, acetaminophen, and even opioid drugs. They usually occur during lupus flares, accompanied by other SLE problems like joint pain, mouth sores, active cutaneous lupus, hair loss, pleurisy, and fatigue. Lupus headaches can also be accompanied by other neurologic symptoms, such as cognitive dysfunction (sometimes called “lupus fog”), dizziness, or mood changes, which may make managing daily life even more challenging. Lab tests may show lower blood counts, low C3 or C4, high EC4d, high anti-dsDNA, high anti-C1q, or proteinuria.

Causes of Headaches in Lupus Patients

There are several potential causes of headaches in lupus patients.

1. Inflammation

Lupus is an autoimmune disease, meaning the immune system mistakenly attacks the body’s tissues. Inflammation and immune system overactivity most likely play important roles since “lupus headaches” occur during lupus flares. The exact anatomical structures inflammation affects in “lupus headaches” is unknown. Potential areas of inflammation include the blood vessels, nerves, brain tissue, and the lining around the brain (the meninges).

2. Neurological Involvement

Lupus can affect the nervous system in various ways, including the central nervous system (CNS) and peripheral nervous system (PNS). Neurological symptoms in lupus patients are grouped under neuropsychiatric SLE (NPSLE). “Lupus headache,” described above, is listed as one of the NPSLE problems. Other NPSLE problems that can have headaches associated with them include:

Lupus meningitis and pachymeningitis
Stroke or transient ischemic attack
Vasculitis
Antiphospholipid syndrome
Thrombotic microangiopathy and thrombotic thrombocytopenic purpura
Central venous thrombosis
Reversible cerebral vasoconstriction syndrome (thunderclap headache)
Reversible posterior encephalopathy syndrome
Benign intracranial hypertension (pseudotumor cerebri)

3. Medication Side Effects

Some medications like NSAIDs, corticosteroids or immunosuppressants, may have headaches as a side effect. Headache medications can also cause headaches themselves. If someone takes headache medications too frequently, the drug can cause severe headaches. Causative drugs include opioids, triptans, ergotamines, NSAIDs, and acetaminophen combination drugs.

The treatment is to stop the drug that is causing the headaches.

4. Stress and Fatigue

Chronic illness can place significant stress on both the body and mind. People with lupus often experience fatigue, anxiety, and depression, all of which can contribute to tension headaches or migraines. Managing stress and practicing relaxation techniques can help reduce the likelihood of stress-induced headaches.

5. Headache Triggers

In addition to drugs, stress, and fatigue causing headaches, many other substances can trigger headaches. These include, and are not limited to:

Foods (alcohol, chocolate, aged cheeses, monosodium glutamate (often in Chinese food), aspartame, caffeine, nuts, nitrites, and nitrates)
Hormonal (menses)
Stimulation of the senses (flickering or strobe lights, sunlight, noise, odors)
Environmental changes (dehydration, dieting or missing meals, change of seasons, high altitudes, weather changes, jet lag, inadequate sleep)

Symptoms of Headaches in Lupus Patients

Lupus headaches can present in various ways and differ from one person to another. Common symptoms include:

Mild to severe pain: The severity of headaches can vary greatly depending on the situation, type of headache, and the person involved.
Sinus Congestion: If the headache is due to sinusitis, there is usually pressure in the bones of the face where the sinuses are. Pain behind the eye can also occur.
Migraine-like symptoms: Symptoms include nausea, sensitivity to light (photophobia), and sound sensitivity (phonophobia). They are usually unilateral (one side of the head), throbbing, worse with light exposure, and worse with activity.
Aura: Around a quarter of patients with migraine will have a preceding aura. The symptoms of an aura vary greatly and include flashes of light, seeing jagged lines, having tingling of the face, having trouble speaking, or developing temporary weakness of the arms, legs, or facial muscles.
Restlessness: Cluster headaches are usually severe and occur on one side of the head, and unlike migraine (where the person needs to lie still to help their headache), individuals with cluster headaches are restless and feel the urge to move around a lot.
Persistent or chronic headaches: Headaches can last for several hours or even days and may be difficult to alleviate with over-the-counter pain medications. Cluster headaches usually only last 3 hours at the most and as short as 15 minutes. Migraine can persist for hours to days.
Accompanied by other lupus symptoms: If the headache is an actual “lupus headache,” they are usually accompanied by other lupus symptoms such as joint pain, rash, mouth sores, pleurisy, fatigue, cognitive dysfunction, or dizziness.
Tender scalp muscles and tightness of the head: Tension headaches, often associated with stress, are often described as feeling a constriction of the top of the head and the muscles of the neck or head may be tender.

Diagnosing Headaches in Lupus Patients

Diagnosing lupus headaches can be challenging, as they share many similarities with other types of headaches. A healthcare provider will typically take a detailed medical history and conduct a physical examination to rule out other potential causes of headaches, such as tension headaches, migraines, or sinus issues.

If lupus involvement is suspected, additional tests, such as blood work or imaging studies (like MRIs or CT scans), may be necessary to assess whether inflammation or neurological damage contributes to the headaches.

Lupus Headache Criteria

There is no universally agreed-upon definition of a true “lupus headache.” Some lupus experts do not even believe they exist.

However, I (Don Thomas, MD) do believe in them. I’ve only had a few patients have convincing “lupus headaches.”

I would define them as being:

Severe persistent headaches that sometimes act like a migraine.
They occur during SLE flares (other organs are also flaring, and lab abnormalities may be seen during typical lupus flares).
They do not respond to the usual headache medicines, including opioids.
They get better, along with the other lupus flare symptoms, with steroids.

Treatment Options for Headaches in Lupus Patients

Managing lupus headaches requires a multifaceted approach that addresses both the underlying lupus and the headache symptoms. Treatment options can vary based on the severity of the headache, the presence of other symptoms, and the individual’s overall health.

1. Treating the Underlying Lupus

For true “lupus headaches,” the most effective treatment is to control lupus disease activity. Steroids are usually needed initially along with other medications to provide long-lasting control of disease activity (hydroxychloroquine, Saphnelo, Benlysta, and oral immunosuppressants).

2. Medications for Headache Relief

For immediate relief of lupus headaches, healthcare providers may recommend several medications, including:

Nonsteroidal anti-inflammatory drugs (NSAIDs): Over-the-counter pain relievers like ibuprofen or naproxen can help reduce mild headaches.
Acetaminophen (Tylenol): This may be sufficient for mild headaches. Combination forms that include caffeine and aspirin can be very helpful.
Prescription pain medications: For more severe headaches, doctors may prescribe stronger pain medications, such as triptans for migraines or other prescription-strength NSAIDs.
Triptans: Triptans are drugs specifically designed to treat migraine headaches. They can also help cluster headaches.
Beta blockers (high blood pressure medication): Beta blockers, like metoprolol and atenolol, taken daily, can help reduce the frequency and severity of migraine headaches or headaches associated with high blood pressure.
Antidepressants: Some antidepressants, like amitriptylline and venlafaxine can help prevent some headaches when taken daily. They may especially help migraine headaches, stress headaches, or headaches associated with neurologic symptoms, depression, or if stress is a common trigger.
Antiseizure drugs: Antiseizure drugs, like topiramate and valproate, can help prevent migraine when used daily.
Calcitonin gene-related peptide (CGRP) antagonists: CGRP antagonists can be used at the start of a migraine to stop it faster. One example is ubrogepant (Ubrelvy)

3. Lifestyle Changes

In addition to medications, making certain lifestyle changes can help reduce the frequency and severity of headaches. These include:

Stress management: Techniques such as yoga, meditation, mindfulness techniques, and deep-breathing exercises can help reduce stress, which may trigger headaches.
Adequate rest: Getting enough sleep is essential for managing lupus symptoms and reducing the likelihood of headaches. If you have trouble sleeping, download Dr. Thomas’ list of sleep hygiene techniques.
Hydration: Dehydration can exacerbate headaches, so staying well-hydrated is important. Many healthcare professionals recommend nine 8 oz glasses of water daily.

4. Treating Co-Occurring Conditions

Many medical illnesses can be associated with headaches. Treating these disorders may help reduce the headaches:

Cancers
High blood pressure
SLE
Fibromyalgia
Irritable Bowel Syndrome
Diabetes mellitus
Chronic kidney disease
Overactive or underactive thyroid
Parkinson disease
Chronic insomnia
Obstructive sleep apnea
Epilepsy
Depression
Anxiety
PTSD
Asthma
COPD
Anemia
Sinusitis
Allergies

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Lupus Headaches: Causes, Symptoms, and Treatment [March 2025 Update]

What Are Lupus Headaches?