Have you ever had a piercing, throbbing, or shocking headache on the back of your scalp? What about in the upper part of your neck or right behind the ears? This specific type of headache may be caused by a condition called occipital neuralgia. Occipital neuralgia is an injury or inflammation of the nerves in the neck. It’s sometimes associated with autoimmune diseases, such as systemic lupus erythematosus (also called lupus or SLE).

Many MyLupusTeam members have reported that headaches are a symptom of their lupus. One member wanted to know whether they were alone in experiencing this type of painful headache: “Does anyone have occipital neuralgia with or from lupus?”

Here, we discuss four things that people living with lupus should know about occipital neuralgia.

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

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

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

More than half of people living with lupus experience headaches, which may include pain in the back of the head similar to occipital neuralgia. However, lupus is not thought to be a direct cause of occipital neuralgia. It can, however, cause changes in other organs that can be associated with occipital neuralgia.

Lupus as an Indirect Cause of Occipital Neuralgia

On rare occasions, lupus can cause vasculitis in the central nervous system (CNS), which may lead to occipital neuralgia. Diabetes — another potential cause of occipital neuralgia — may be caused by lupus itself or may be a side effect of certain medications for lupus such as 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 it can also cause inflammation of the occipital nerves, resulting in occipital neuralgia. Many people with lupus have another condition called fibromyalgia, in which there is pain in the muscles and associated bones.

In general, lupus is an autoimmune disorder that can affect the brain and spinal cord by releasing abnormal antibodies (immune proteins) 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. The type of pain tends to be described as piercing, throbbing, burning, or migraine-like and located in the back of the scalp. Pain may be experienced on one or both sides of the head. Headache pain may also radiate to the sides of the head, the upper neck, or behind the eyes.

If you’re experiencing ongoing headaches or suspect you may have occipital neuralgia, it’s crucial to consult with a healthcare professional. They can evaluate your symptoms, provide an accurate diagnosis, and recommend treatment options tailored to your needs. Your neurologist and rheumatologist will likely try to figure out the underlying cause of your symptoms.

What Worsens Occipital Neuralgia?

If you have occipital neuralgia, pain can be triggered by even lightly touching your scalp. You might find that routine actions like brushing your hair or drying your hair with a towel bring on pain. Conditions that cause occipital neuralgia may also cause symptoms to worsen if they’re not managed effectively. Other conditions that may worsen symptoms include:

• Arteriovenous malformation (blood vessel abnormality where blood flow is disrupted by abnormal artery and vein connections)
• Aneurysms or infections of the brain, such as meningitis
• Inflammation in the sinuses
• Rheumatoid arthritis
• Sleeping disorders
• Stroke
• Trigeminal neuralgia (severe pain in the face caused by blood vessels pressing on a nerve near the brainstem)

3. Diagnosing Occipital Neuralgia Is a Multistep Process

Occipital neuralgia is usually diagnosed by a physical exam along with an evaluation of your symptoms and medical history. It’s likely that your doctor will start with a physical exam and neurological exam. After that, your provider may recommend imaging tests such as MRI or CT. These scans can be used to rule out other potential causes of the pain. Sometimes, doctors use occipital nerve blocks in order to confirm that your pain is coming from the occipital nerves.

As someone 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 you get a treatment plan that considers your whole system, as well as 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:

• Medications, including anti-inflammatory drugs, muscle relaxants, or anticonvulsants
• Nerve-blocking injections of local anesthetic with or without steroids
• Heating pads applied to the neck and back of the head
• Injections of botulinum toxin (Botox)
• Physical therapy and massage

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, high-dose steroids may be used to reduce inflammation if your neuralgia is caused by lupus. 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.

Since occipital neuralgia can occur as a result of underlying diseases like lupus, it’s essential for your lupus to be managed well. Sometimes, getting your lupus under control with medication can reduce symptoms such as headaches. Work with your rheumatologist to find a treatment plan that’s right for you, and take your prescribed medications. By following your treatment plan, adopting a healthy lifestyle, and seeking medical advice from your healthcare providers, you can help better control your health.

Talk With Others Who Understand

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

Do you have lupus and occipital neuralgia? Do your headaches follow the occipital neuralgia pain pattern? Share your experience in the comments below, or start a conversation by posting on your Activities page.