Have you ever had a piercing, throbbing, or shocking headache on the back of your scalp? This symptom may be caused by a condition called occipital neuralgia. Occipital neuralgia is an injury or inflammation of the nerves in the neck that are sometimes associated with autoimmune diseases such as systemic lupus erythematosus (also called lupus or SLE).

More than 19,000 MyLupusTeam members have reported experiencing headaches as one of their lupus symptoms. One MyLupusTeam member asked, “Does anyone have occipital neuralgia with or from lupus?” In this article, we explain four things that people living with lupus should know about occipital neuralgia.

1. Lupus Isn’t Considered a Common Cause of Occipital Neuralgia

The exact cause of occipital neuralgia is often unknown, but several factors can increase your risk of developing this condition. Causes of occipital neuralgia may include:

• A pinched nerve or muscle tightness in the neck
• Trauma or injury to the occipital nerves (nerves located at the back of the head)
• Osteoarthritis, degeneration, or compression of the cervical spine (the spine in your neck)
• Tumors or cysts pressing on the nerve roots
• Gout
• Diabetes
• Vasculitis (blood vessel inflammation)

More than half of people living with lupus experience headaches, which may include pain in the back of the head similar to occipital neuralgia. Lupus is not commonly considered a direct cause of occipital neuralgia, but it can cause changes in other organs that can be associated with occipital neuralgia. For example, on rare occasions, lupus causes vasculitis in the central nervous system (CNS), which can lead to occipital neuralgia. Lupus itself can increase the risk for diabetes, or it may be caused by the side effects of medications like corticosteroids (steroids). Diabetes mostly affects the peripheral nervous system (part of the nervous system that connects the brain and spinal cord to the rest of the body) but can also cause inflammation of the occipital nerves causing occipital neuralgia. Many people with lupus have another coexisting condition called fibromyalgia, in which there is pain in the muscles and associated bones.

In general, lupus is an autoimmune disease that can affect the brain and spinal cord by releasing antibodies that attack the nerves and blood vessels. The inflammation that results can lead to occipital neuralgia and other forms of headache.

2. The Main Symptom of Occipital Neuralgia Is Severe Headache

The primary symptom of occipital neuralgia is severe pain, usually described as piercing or throbbing migrainelike pain located in the back of the scalp. It can be one-sided or on both sides. The pain may radiate to the sides of the head or behind the eyes.

If you are experiencing ongoing headaches or suspect you may have occipital neuralgia while living with lupus, it is crucial to consult with a health care professional. They can evaluate your symptoms, provide an accurate diagnosis, and recommend appropriate treatment options tailored to your needs. It is important for your neurologist and rheumatologist to try to understand the underlying cause of your symptoms.

3. Diagnosing Occipital Neuralgia Is a Multistep Process

Diagnosing occipital neuralgia involves a comprehensive evaluation of symptoms, medical history, and a physical examination. According to the American Association of Neurological Surgeons, your doctor will typically start with a physical exam and neurological examination. Then, you may undergo imaging tests such as MRI or CT scans to rule out other potential causes of the pain. Sometimes, doctors may use occipital nerve blocks to confirm that your pain is coming from the occipital nerves.

Because you are living with lupus, you’ll need to keep your rheumatologist in the loop. They can work with the rest of your medical team to ensure your care is holistic — that it considers your whole system, taking into account all interconnected parts and their influence on each other — and that your medical history is considered when making a diagnosis.

4. You Have Options for Treating Occipital Neuralgia

The goal of treatment for occipital neuralgia is to relieve pain and improve quality of life. Nonsurgical care may include:

• Heat pads applied to the neck and back of the head
• Physical therapy and massage
• Medications, including anti-inflammatory drugs, muscle relaxants, or anticonvulsants
• Nerve-blocking injections of local anesthetic or steroid agents
• Injections of botulinum toxin (Botox)

One MyLupusTeam member shared, “My family doctor gave me a muscle relaxer and started me on gabapentin.” Another member commented, “I now get Botox for my occipital migraine headaches with some good relief.”

The treatment you receive may depend on the cause of your occipital neuralgia. For example, if your neuralgia is caused by lupus inflammation of blood vessels, high-dose corticosteroids may be necessary to reduce the inflammation. One member shared, “Pain management gave me steroid injections in my lower neck/shoulders, and that helped the occipitals for a short time.”

For severe cases that don’t go away without surgery, there are also surgical treatments that can be considered down the line.

Because occipital neuralgia can occur as a result of underlying diseases like lupus, it is essential to manage the lupus condition effectively. Sometimes, getting your lupus under control with lupus medications can reduce symptoms such as headaches. This strategy may involve following a treatment plan prescribed by a rheumatologist, taking prescribed medications, adopting a healthy lifestyle, and seeking support from health care professionals and support networks.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you had severe headaches while living with lupus? What advice can you offer others in the same situation? Share your experience in the comments below, or start a conversation by posting on your Activities page.