It is estimated that over 70% of those with SLE experience some kind of headaches at one time or another throughout the course of the disease. Do you suffer and wonder why your head pounds, making you feel miserable? Read on to find out why.

• Introduction
• What are the most common types of headaches for those with lupus?
• Is there really such a thing as a “lupus headache?”
• What can help to prevent and treat a pounding headache?
• In Conclusion

Introduction
Many of those living with lupus experience frequent headaches. There may seem to be no rhyme nor reason as to why or when these headaches occur, and there is often little relief. A healthcare practitioner may have a hard time pinpointing the cause, especially when the headaches seem to happen randomly. These headaches, therefore, are often hard to treat.

Most headaches typically happen as a result of the following:

• tension or stress;
• illnesses such as a cold or flu;
• not eating enough or drinking enough water;
• alcohol and caffeine;
• poor posture or poor eyesight;
• bright lights and/or sunlight;side effects from medication;
• sinus problems, seasonal allergies, or smells;
• hormonal changes;
• changes in weather;
• environmental triggers;
• fatigue; and
• changes in sleep patterns.

Even though we use the term “headache,” the brain itself cannot feel pain. The pain is usually due to inflammation of the muscles, nerves, and blood vessels in the head and neck area.

What are the most common types of headaches for those with lupus?

There are two types of headaches – primary headaches and secondary headaches. Primary headaches occur when the main problem is the headache itself. Secondary headaches occur as the result of another – sometimes serious – condition. Most individuals with lupus suffer from primary headaches.

The most common types of primary headaches include:

• Migraine headaches: Migraines usually happen on one side of the head, can last from hours to days, may cause nausea, and may be preceded by an aura (flashing lights, zigzag lines). Migraines affect about 15% of the global population and three times as many women as men, possibly due to hormones.
• Tension headaches: Tension headaches may make you feel like you have a vice around your head because they cause pain in the temples, forehead, and the back of the head.
• Hypnic headaches: Though rare, these headaches usually occur in individuals older than 40 at night. They last from a few minutes to an hour or so and can be felt anywhere in the head.
• Cluster headaches: Cluster headaches can be some of the most painful headaches imaginable. They are typically one-sided and can cause a stuffy nose on one side, tearing, one eye may dilate and one lid may droop. They can last from a few minutes to a couple of hours and may occur often throughout the day.

When to worry … secondary headaches, though rare, can cause excruciating pain as a result of:

• brain tumors;
• aneurysms;
• meningitis;
• acute sinusitis; and
• neck and/or brain injury.

Those with lupus often report having migraines or tension headaches – even both – as the most common types of headaches they experience. About 20% of those with lupus experience migraine-like headaches that may not technically be migraines, but come with the same symptoms.

It is imperative to immediately seek medical assistance if a headache comes on suddenly and the pain is debilitating, or comes on gradually and is associated with a high fever.

Is there really such a thing as a “lupus headache?”

While there is some debate in the medical community about whether lupus headaches are real, it is a condition that has been diagnosed if other considerations have been ruled out. This kind of diagnosis, as with most involving lupus, requires careful physical exams, blood tests and perhaps even an MRI of the brain.

The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) defines lupus headache as a “severe, persistent headache that may be migrainous, but must be nonresponsive to narcotic analgesia.” Because some scientists are on the fence about whether or not lupus can directly cause headaches, it is estimated that between 24% – 72% of individuals with lupus may actually get lupus headaches.
It is ultimately up to you and your healthcare practitioner to decide what kind of headaches you suffer from. That is really what is most important in getting you the relief you need. The pain is real, however, no matter the cause.

What can help to prevent and treat a pounding headache?

Note:  As always, contact your healthcare practitioner before trying any new prevention or treatment options.

A lot of the same things you may already do to manage your lupus may also help to manage headache pain and how often and intensely headaches occur. If you already know what your headache triggers are, great! The healthy habits below can help you manage those triggers and possibly eliminate – or at least decrease – headache severity:

• Avoidance: Try your best to avoid anything that is a known trigger.
• Sleep: Being well-rested can keep headaches away.
• Water: Stay hydrated and drink plenty of water.
• Eating: Avoid food triggers and make dietary changes as necessary.
• Exercise: Whenever and however you can, get up and move!
• Stress relief: Practicing stress relief can help manage emotions and headache pain.
• Avoid eye strain: Wear up-to-date prescription lenses with blue light protection, use adequate light, limit exposure to computers and phones, and give eyes a rest.
• Maintain good posture: “Tech neck” is a real thing. Make sure to practice good posture that does not put strain on the shoulders, neck, spine, and back of head.

If you do not know what is triggering your headaches, talk with your healthcare practitioner. While it is not always understood what causes headaches in lupus, they may help you to narrow down potential triggers and do some troubleshooting. Keeping a headache-tracking journal is a great way to look for patterns and relationships between the things you do and when you get a headache. This will help you communicate your findings to your healthcare practitioner and see if the mystery unfolds.

When in the throes of a headache you were not able to prevent, the following can help to reduce the severity:

• Rest in a dark, quiet room. Wear sunglasses if necessary.
• If you are not nauseous, eat something light and drink some water.
• Use hot or cold compresses to ease tension and pain.
• Practice a relaxation technique that works for you when stressed.
• Get a massage.
• Take aspirin, ibuprofen or acetaminophen for pain – whichever your practitioner recommends.

Ultimately, do whatever it takes to make yourself feel better! Sometimes, the most seemingly unconventional of practices can make the most difference to how we are feeling – as long as they are safe.

Sometimes, however, more aggressive treatment may be necessary. A healthcare practitioner may prescribe one from a wide variety of medications that may include: corticosteroids, anti-nausea drugs, antidepressants, muscle relaxers, or even nasal sprays.

In Conclusion

The pain from headaches can feel unbearable. Taking a closer look at what may be triggering them can help you discuss your symptoms, fears, and concerns with your healthcare practitioner. While it may mean making some changes and adjustments to daily habits, the freedom from agonizing pain will be well worth the effort.

 

References

Facts and figures. (2020). The Migraine Trust. https://www.migrainetrust.org/about-migraine/migraine-what-is-it/facts-figures/

Hanly, J., Urowitz, M., O’Keefe, A., Gordon, C., Bae, S., Sanchez-Guerrero,J., Romero-Diaz, J., Clarke, A., Bernatsky, S., Wallace, D., Ginzler, E., Isenberg, D., Rahman, A., Merrill, J., Petri, M., Fortin, R., Gladman, D., Fessler, B., Alarcon, G., Bruce, In., Dooley, M. …Farewell, V. (2013). Headache in systemic lupus erythematosus. Arthritis & Rheumatism, 65 (11), 2887-2897. Doi: 10.1002/art.38160. https://onlinelibrary.wiley.com/doi/full/10.1002/art.38106

Howard, P. (2, March 2018). February’s topic of the month – Coping with headaches & migraines. LupusUK. https://www.lupusuk.org.uk/headaches-and-migraines/#:~:text=The%20most%20common%20type%20of,this%20as%20an%20overlapping%20condition

Islam, A. & Alam, F. (2017). Comorbid association of antiphospholipid antibodies and migraine: A systematic review and meta-analysis. Autoimmunity Reviews, 16, 512-522. doi: 10.1016/j.autrev.2017.03.005. https://www.researchgate.net/profile/Md_Asiful_Islam/publication/314292679_Comorbid_association_of_antiphospholipid_antibodies_and_migraine_A_systematic_review_and_meta-analysis/links/5a2e4fd90f7e9b63e53d6228/Comorbid-association-of-antiphospholipid-antibodies-and-migraine-A-systematic-review-and-meta-analysis.pdf

Miksikostas, D., Sfikakis, P., & Goadsby, P. (2004). A meta-analysis for headache in systemic lupus erythematosus: The evidence and the myth. Brain – A Journal of Neurology, 127 (5), 1200-1209. doi: 10.1093/brain/awh146. https://academic.oup.com/brain/article/127/5/1200/303125

Popescu, A. & Kao, A. (2011). Neuropsychiatric systemic lupus erythematosus. Current Neuropharmacology, 9, 449-457. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151599/

Tepper, D. (6, August 2014). Migraine and cardiovascular disease. American Migraine Foundation. https://americanmigrainefoundation.org/resource-library/migraine-cardiovascular-disease/

Types of headaches. (2020). Stanford Health Care. https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/headache/types.html

Whitelaw, D., Hugo, F., Spangenberg, J., & Rickman, R. (2004). Headaches in patients with systemic lupus erythematosus: A comparative study [abstract]. Lupus, 13 (7), 501-505. Doi: 10.1191/0961203304lu1050oa. https://journals.sagepub.com/doi/abs/10.1191/0961203304lu1050oa

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.