Confused whether the headaches are lupus headaches vs migraines or both? Understanding the causes and symptoms can help you decide the right treatment options.
#LupusWarriors might experience the dreaded lupus fog bringing the mind and body often to a confused state and difficulty remembering potentially crucial parts of their life. And on top of that, the inability to adequately express themselves could also leave individuals who suffer from this condition feeling isolated and alone.
The struggles of lupus are real and severe. However, there is one symptom that people really dread—the lupus headache.
In the past, doctors and individuals had a difficult time understanding whether the “lupus headache” was a real issue. The event closely mimics either a primary headache or a migraine headache making it difficult to distinguish between the three. However, it’s imperative to differentiate, because there are different treatment strategies for migraines and lupus headaches.
Lupus, Migraines, and Comorbidity
Medical professionals understand lupus has the high potential of coupling with other conditions. (Lupus Corner blog post Fibromyalgia & Lupus: Comorbidity of Illnesses explains that concept further.) It, unfortunately, has the high potential of coupling with chronic migraines or bring about migraines.
Migraine Causes
Migraines are also a rather gray area in the medical world. Potential causes of migraines include:
- Sleep cycle changes
- Weather changes
- Food
- Skipping meals
- Drink
- Preservatives and sweeteners
- Sensory stimulation
- Hormonal changes
- Hormone medications
- Other medications
- Stress
Of note, #LupusWarriors are more susceptible to a compromised immune system, which can cause stress. Stress is also one of the main triggers for migraines. So, migraines can be a secondary symptom of lupus. (Side-note: Check out the blog post Aromatherapy, Stress Management, & Lupus to learn how to take it easy and prevent flares.)
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Chronic Migraine Causes
Chronic migraines are a different story. People who suffer from this condition do so completely outside of lupus. Chronic migraines most likely happen well in advance from the onset of lupus. Most common in women under the age of 40, (similar to lupus), puberty and its hormonal changes commence these debilitating occurrences.
Symptoms of Migraines
Migraines and chronic migraines happen in cycles. The worst part of the cycle is the “headache.” These symptoms include:
Pain on one side or both sides of your head
- Pain that feels throbbing or pulsing
- Sensitivity of the senses
- Nausea and vomiting
- Blurred vision
- Lightheadedness and (sometimes) fainting
The usual medications medical providers choose to treat migraines are the same ones that treat primary headaches—analgesics; i.e., Naproxen.
Lupus Headache Causes
Again—there is a debate whether a lupus headache is different from a regular headache. Dimos D. Mitsikostas, Petros P. Sfikakis, and Peter J. Goadsby shared their findings in A Meta‐Analysis for Headache in Systemic Lupus Erythematosus: The Evidence and the Myth that the “lupus headache” is most likely just a primary headache.
The SYSTEMIC LUPUS ERYTHEMATOSUS DISEASE ACTIVITY INDEX, though, recognizes the term as legitimate and ranges it from mild (like a primary headache) to acute (like a migraine.) Many anecdotes from #LupusWarriors also support the existence of the “lupus headache.” Regardless, headaches from central nervous system lupus (CNS-SLE) are a real problem.
In some cases, lupus affects the central nervous system (CNS), which is where the headaches come into play. When CNS-SLE is active, the inflammation of the CNS causes the discomfort—more specifically, vasculitis.
What to Do Next—How to Determine If Headaches Are from Lupus
Talking to a medical team is essential to understand what treatment options are for headaches associated with lupus and migraines as some medications compromise the immune system. It is paramount to get checked for CNS-SLE if diagnosed with lupus and experiencing constant or severe headaches. Tests such as spinal taps and MRIs might need to take place to determine if the disease has spread to the CNS.
The Takeaway
Headaches and lupus seem to be one and the same. There are certain measures to complete to keep the body as healthy and comfortable as it possibly can be when experiencing lupus headaches—(be sure to take our survey and hear from other #LupusWarriors who have lupus headaches!). As always, there’s a community of people that understand the journey ahead and are here to support—hang in there.
Recently diagnosed with lupus and have been getting migraines the last few months that completely shut me down. The last four of them all came after I had direct sun exposure. I know I should avoid direct sun exposure, but I live on a farm, and sometimes I can’t. I try to wear long sleeves and wide brimmed hats, but I am still getting the headaches. Any advice on how to manage the headaches? I am trying to stay out of the sun as much as I can.
I am so glad to read this. I have never had migraines prior to my SLE diagnosis. However, this summer, any time spent outdoors with my children for an extended period of time (even in the shade), brings on the most debilitating migraines. They are also brought on by hormones (period) and if I get too little sleep. Considering this was never a problem for me before i’m convinced it must be lupus related to some degree. I have been on amitryptoline daily as a preventative and have begun using Zomig and Cambia to treat a migraine when it begins. So far the Cambia has been the most helpful but Zomig works as well…..other days nothing helps. I know this post is old but I hope you have found a way to treat yours, and if so please share!!!! 🙂
I’ve had Lupus for 20 years and have gone through several stages regarding the sun. I love being outside in Houston and I especially love working in my backyard! At first I would breakout in little water bible bumps on exposed areas, as if I my sweat glads would get stopped up and would itch. Then and no I’ll breakout in a itchy rash that occurs under the skin. Almost in a web effect. Afterwards in all cases I would feel drained and on occasion I’d get a headache. Now I’ve learned that when my body gets too hot, I get those symptoms. Answer: I jump in the pool regularly or get the hose and cool off, especially my head and I drink lots and lots of cold water. I love going to games but I have to be very careful of the heat or I don’t go if I’m not in the shade. I hope this helps and can give you a little relief.
@Becky, I have suffered from lupus and from migraines, so I understand your dilemma. I don’t know what all your triggers are – things that tend to bring on migraine attacks – but I do know mine. Just covering up is often not enough to keep me migraine-free, either. Light is a major trigger, especially bright light. So you might try carrying sunglasses around to slip on quickly whenever you go outside. I got some that not only cover the front of the eyes, but also have wide earpieces to keep light out from the side, as well as a little “roof” that keeps out the light that comes from above. These were a real lifesaver for me when I lived in Texas.
As far as covering up when you go out, there are things you can do to make it easier to do this more often. For awhile I wore a hat every time I went out, hanging a couple by each door or wearing the hat indoors and out. I couldn’t take the extra heat of wearing long sleeves in the summer. But some things that limit sun damage include seeking shady spots whenever possible or throwing a damp towel over both shoulders so that the back of my neck was covered. You might try experimenting to see if a certain part of your body is more sensitive than another, in a similar way. I hope this helps.
WATER!!! Staying hydrated constantly has helped me. Not drinking alcohol in the heat. Hat. Sunglasses.
For my migraines I’ve been taking Botox shots from chronic pain doctor every 4 months and it has really helped. About heat everything the other people suggested I also do and it seems to help
I’ve had SLE for 30 years but lived in Pacific NW. Little Sun. Moved to AZ two years ago and now have chronic migraine-like headaches and Cebreal small vascular disease confirmed on MRI scans. Do I move out of AZ?
I’ve recently been diagnosed with lupus and am suffering with chronic migraines. I have just had mri and am waiting to hear back from my doctor. The pain is terrible and sleep is nearly impossible. I cat nap. I cannot handle heat (I live in California too!) and am tired all the time. I am just learning about lupus. Praying for everyone here ❤️
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