Around 1.5 million Americans live with systemic lupus erythematosus, the most common form of lupus, and more than half of them regularly get headaches. 

New research now shows that these often are not just normal headaches. For many, they’re actually migraines. 

Lupus is an autoimmune disease that can attack any organ in the body – the brain, heart, lungs, kidneys, skin, joints, and blood cells. It is a chronic condition, meaning that patients may have flare-ups, but then other times they’ll be symptom-free. Inflammation is a prime cause of lupus. 

The central nervous system also plays a major role in lupus headaches, said Amir Tolebeyan, MD, a neurologist and director of headache and facial pain at Tufts Medical Center in Boston. 

With lupus, the central nervous system, which consists of the brain and spinal cord, can be affected by antibodies that bind to nerve cells or blood vessels. Lupus can also cut off blood flow to nerves. All of this impacts the central nervous system and can lead to headaches. Inflammation of the brain can also directly cause headaches.

A “lupus headache” can come in a variety of forms. The research from a new study from India finds that one-third of patients worldwide with the most common form of lupus specifically have migraine

Raynaud’s phenomenon, which limits blood flow to the fingers and toes and is often associated with migraine, is a complication of systemic lupus erythematosus in up to 50% of patients and could explain why so many people experience this kind of headache.

Lupus patients can also have primary headache, meaning the headache itself isn’t dangerous or directly related to the disease. These types of headache may simply be due to emotional stress, which in turn could be related to managing the physical pain of other lupus symptoms. 

However, the pain can also have more serious implications. 

“For some lupus patients, headache can indicate a problem with blood vessels in the brain,” says Ashira Blazer, MD,  an assistant professor of medicine at the Hospital for Special Surgery in New York City and a member of the Lupus Foundation of America Medical-Scientific Advisory Council. 

One such problem is blood clots in the brain especially in patients with what’s called antiphospholipid syndrome. It can develop as a lupus complication and causes the immune system to attack fat in living cells, which raises the risk of clotting. Blazer recommends patients watch for systems like vision problems or cognitive changes, which could indicate a stroke. 

New research from the Federal University of Pernambuco in Brazil also found that patients who have systemic lupus erythematosus are at higher risk for experiencing headaches related to acute vascular diseases like vasculitis. Some lupus therapies can also cause headache. “If you have lupus, you may take immunosuppressant drugs, which can cause aseptic meningitis – inflammation of lining in the brain,” Blazer said.

Read on for more specific and important information about lupus and lupus headaches, and what patients can do to get the right diagnosis and relief.

What Are the Symptoms of Lupus? 

Signs of lupus may include:

  • A butterfly-shaped rash on the face
  • Muscle and joint pain
  • Severe tiredness
  • Eye problems like dry eye, eyelid rashes, or inflammation
  • Forgetting things or becoming confused
  • Hair loss
  • Chest pain
  • Lowered kidney function
  • Fever
  • Sensitivity to light or sunlight

How Is a Lupus Headache Diagnose and Treated?

Finding the root cause of the headache is essential.

If someone with lupus has headaches that suddenly get worse or more frequent, they should talk to their doctor. 

“We don’t know if lupus is causing a patient’s headache right away,” Tolebeyan said. 

Doctors must first rule out serious conditions like stroke, intracranial pressure, or cancer. “The treatment for headache is based on the cause.”

If the headache is related to the disease, such as during a lupus flare-up, for example, doctor may focus on trying to reduce inflammation, Tolebeyan said. 

A lupus headache may be diagnosed by either a spinal tap or an MRI or CT scan. Headaches directly related to lupus inflammation often don’t respond to over-the-counter pain relievers, so corticosteroids are often prescribed.

If a patient is diagnosed with migraine, the National Institutes of Health says treatment options include prescription drugs or common pain relievers like acetaminophen or ibuprofen. Over-the-counter migraine meds do work in some patients, too. Other important ways to prevent migraines include reducing stress, getting enough sleep, and avoiding foods that might trigger a headache.

Lupus patients can also reduce their odds of headache by managing factors that could cause a flare-up. Some great self-care strategies to try:

  • Not working too much or too hard
  • Avoiding the sun
  • Limiting the time spent in halogen or fluorescent light
  • Avoiding injuries and infections
  • Always taking lupus medication regularly
  • Checking with the doctor before taking any additional medications.
  • Following a low-fat, low-calorie diet, or taking a vitamin D supplement if the doctor advises it

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