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Can Ankylosing Spondylitis Cause Headaches?

Medically reviewed by Florentina Negoi, M.D. — Written by Joan Grossman
Posted on September 8, 2023
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Headaches aren’t the first symptom that comes to mind with ankylosing spondylitis (AS). But for many people living with AS, 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 share 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.

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

Research from the Journal of Clinical Medicine has shown that 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. In addition, neuropathic (nerve) pain is experienced at three times the rate of the general population. In people with SpA in particular, high levels of disease activity were associated with migraines. 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, which is the lower part of the backbone, it 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 have been found to have headaches at about 2.5 times the rate of people without the condition.

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.

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 an 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 is approximately 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 pain throughout the body, 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 living organisms. 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 of the medication. Although biologics can be a highly effective treatment of AS 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 can also 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 practices such as yoga, tai chi, and deep breathing exercises helpful in reducing stress and anxiety.

Chronic pain from AS disturbs sleep and mental health, particularly in women and older people. 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.

Managing Headaches With Ankylosing Spondylitis

You’ll want to have a conversation with your rheumatologist and health care team about your headaches. This talk can help you figure out why you’re having headaches and how to manage them better. Plus, for some people, getting AS under control might also help reduce the headaches.

If your headaches are caused by fibromyalgia or eye inflammation, treating the main health problem may help resolve headaches. Your health care provider may also recommend headache treatment such as over-the-counter medication like nonsteroidal anti-inflammatory drugs (NSAIDs) or prescription medication.

When You Have a Headache

There are things you can do 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,” someone else said.

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 93,000 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.

Posted on September 8, 2023
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Florentina Negoi, M.D. attended the Carol Davila University of Medicine and Pharmacy in Bucharest, Romania, and is currently enrolled in a rheumatology training program at St. Mary Clinical Hospital. Learn more about her here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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