• Spondyloarthritis can lead to headaches for several reasons.
• Talk to your doctor about headaches that are severe, chronic, or recurrent.
• Be sure to report any new or worsening symptoms or side effects of treatment to your rheumatologist, who can help you find ways to manage them.

Headaches aren’t among the most common symptoms of ankylosing spondylitis (AS). But for many people living with the condition, headaches are a pressing and frustrating problem that affects their quality of life. Headaches are a common topic of discussion among MySpondylitisTeam members, many of whom have described their experiences with head pain:

• “I had a bad headache last week. I didn’t know that could happen with AS.”
• “I’ve had a massive headache for four weeks. No one will help.”
• “Headache started this evening. Been having headaches this week.”
• “I started having awful, almost daily headaches about six weeks ago. At times, my head on one side feels like it’s crawling inside.”

If you’re having persistent headaches with AS, talk to your doctor. Keep reading to find out some reasons people with AS may experience headaches and what you can do to manage this pain.

Headaches and Ankylosing Spondylitis

Headaches usually aren’t a common symptom of AS, which is also known as radiographic axial spondyloarthritis (r-axSpA). AS is a type of arthritis that mainly affects the vertebrae in the lower back and the sacroiliac joints that link the spine to the pelvis. Symptoms of AS more typically include lower back pain, joint pain, and stiffness.

Like other types of spondyloarthritis, or spondyloarthropathies, AS is an autoimmune condition. An autoimmune disease involves the body’s defense system mistakenly attacking and damaging its healthy cells and tissues. Although AS is mostly seen as a disease of the spine, it can affect other parts of the body, including the jaw. AS is sometimes linked to other health conditions such as psoriasis, uveitis, and inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis.

People with inflammatory arthritis or rheumatic diseases that cause chronic (ongoing) inflammation — such as rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis (SpA) — experience migraine headaches at a rate twice that of the general population, according to research published in the Journal of Clinical Medicine. Additionally, these inviduals experience neuropathic (nerve) pain at three times the rate of the general population, according to the research.

Researchers also found that high levels of disease activity in people with SpA in particular were associated with migraine headaches. People with SpA were also found to have the highest rate of neuropathic pain among those studied.

Although headaches are often linked to spondyloarthritis, researchers don’t fully understand the causes. Headaches in people with inflammatory diseases like AS might happen because of inflammation and how the disease progresses, but there could be other reasons.

Ankylosing Spondylitis and Cervical Spondylitis

Although AS is usually linked to the lumbar spine — the lower part of the backbone — the disease can also progress to affect the cervical vertebrae, the first seven vertebrae in your spine. This is known as cervical spondylitis. Along with experiencing neck pain, people with cervical spondylitis experience headaches at about 2.5 times the rate of people without the condition, according to a large-scale study.

A MySpondylitisTeam member wrote, “I had daily headaches and migraines for years. The headaches specifically were a result of the inflammation in the upper spine/neck from the spondylitis. They aren’t as frequent anymore, but I’ve had them more regularly again since having COVID.”

Another member said, “I’m having a bad flare today along with a spinal headache and pressure that’s radiating from the back of my head to my middle back. Trying to keep focusing on the positive things in life, but sometimes it’s just hard.”

The risk of cervical spondylitis increases significantly over time for people with AS. Approximately 45 percent of people with AS have cervical spine inflammation after 10 years with AS, which increases to 70 percent after 20 years of living with AS. Physical therapy is also very useful in people with pain in the cervical spine. Talk with your physical therapist, who can guide you through specific exercises. Doing these exercises regularly may help you decrease headaches and ease neck pain.

Spinal Stenosis and Cervicogenic Headache

In spinal stenosis, the spinal canal compresses and pinches the spinal cord and nerves. Spondyloarthritis, osteoarthritis, and normal aging are all risk factors for developing spinal stenosis. If spinal stenosis develops in the cervical spine, it may lead to cervicogenic headaches. Cervicogenic headaches tend to be chronic (long-lasting) and recur often. The pain is usually felt on one side and associated with neck movement.

Eye Inflammation and Headache

Inflammation of the eye can also cause headaches with AS. About half of people with spondylitis develop inflammation in the eye, as either iritis or uveitis. Iritis is inflammation of the iris, which is the colored part of the eye, whereas uveitis is inflammation inside the eye.

Eye inflammation typically affects one eye at a time and causes redness and pain. If you have eye pain, eye redness, or blurred vision, be sure to see a doctor immediately to prevent damage that may cause vision loss.

Headaches With Ankylosing Spondylitis and Fibromyalgia

People with AS have a risk of developing fibromyalgia that’s about 30 percent higher than that of the general public. Fibromyalgia is considered a comorbidity — a medical condition that occurs at the same time as another — that can affect people with AS. Fibromyalgia causes bodywide pain, which is believed to be caused by disorders in the nervous system. Chronic headaches that stick around for a while are a common symptom of fibromyalgia.

“My headaches are daily. Sometimes, I wake up with them. Other times, they come on during the day. Really tired of all the pain and lost days,” a MySpondylitisTeam member wrote.

If you have ongoing headaches, you may want to discuss fibromyalgia with your health care team.

Biologic Drug Side Effects and Headaches

Biologics are medications made from proteins or other biological molecules. People with AS who are treated with biologic drugs such as tumor necrosis factor (TNF) inhibitors or interleukin (IL)-17 inhibitors may experience headaches as a side effect. Although biologics can be a highly effective AS treatment for some people, headaches are a common side effect of this type of therapy.

Be sure to discuss headaches with your rheumatologist if your treatment plan includes biologics. You and your rheumatologist may determine that it’s a good idea for you to try another treatment option. Remember that you should never stop drug therapy without medical advice. Stopping a drug suddenly may cause further complications or side effects.

Anxiety, Ankylosing Spondylitis Pain, and Headaches

Headaches in people with AS can also be triggered by anxiety, depression, and sleep disturbances. AS not only affects the body physically but also can have a significant impact on mental health. The mental health challenges and sleep problems that are often associated with AS can make headaches worse.

If you’re experiencing anxiety, depression, or sleep disturbance, talk to your doctor about a referral for mental health counseling to help improve your mental and emotional well-being. Some people find that practices such as yoga, tai chi, and deep breathing exercises can help reduce stress and anxiety.

Chronic pain from AS disturbs sleep and mental health, particularly in women and older people, according to a study in the journal Preventing Chronic Disease. Migraine and other types of headaches have been found to occur in more than 23 percent of people with painful musculoskeletal conditions, such as AS.

Talk to Your Doctor About Managing Headaches

It’s important to have a conversation with your rheumatologist and health care team about severe, chronic, or recurrent headaches. Your care team can help you figure out why you’re having headaches and how to manage them better. If you have active spondyloarthritis, getting it under control might also help reduce the headaches.

When You Have a Headache

You can take several steps to help manage a headache:

• Avoid bright light and rest quietly in a darkened room.
• Use hot or cold compresses on your neck and head.
• Try a gentle massage.
• Consume a small amount of caffeine.

You may want to ask your doctor for a referral to physical therapy to help you learn exercises that may help with headache pain relief. Regular exercise and physical activity as part of your AS treatment plan can help decrease stress, improve sleep, and boost overall health and well-being.

MySpondylitisTeam members have also shared their tips on how they manage headaches:

• “From my neck to my toes, I hurt. Stretching and hot showers help me. I have to start with the neck, or a headache comes on. At least that’s how it is with me.”
• “I’ve recently discovered sleeping on an extra-firm pillow helps to stop me from having the daily headaches. I have been to pain management and even had ablation of the nerves, and it didn’t help. The pillow is the only thing that has helped me.”
• “Heat on my neck helps me, and making sure I’m not dehydrated.”

When a Headache Is an Emergency

In rare circumstances, a headache may be a sign of an emergency. Contact your doctor immediately or seek emergency care if you have a headache with any of the following symptoms:

• Sudden onset with severe pain
• Slurred speech, vision changes, confusion, balance problems, or difficulty moving
• Vomiting, fever, and a stiff neck
• Head injury

If you have a headache that feels severe or is getting worse, let your doctor know as soon as possible. This is important because it could be a sign of a more serious underlying issue, and your doctor can help determine the cause and provide treatment to relieve your discomfort. It’s essential to catch and manage these headaches early for your overall well-being.

Find Your Team

MySpondylitisTeam is the social network for people with spondylitis and their loved ones. On MySpondylitisTeam, more than 95,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.

Do you have headaches with ankylosing spondylitis? Have you found anything that works to relieve headache pain? Share your experience in the comments below, or start a conversation by posting on your Activities page.