You know the sensation, a slight subtle pressure that can quickly turn into the feeling like your head is being squeezed in a skull crushing vice. You dread saying it out loud but know that menacing pain all too well; the unwelcome visitor who may be staying several hours (or days) … a migraine.
A migraine (as defined by the Mayo Clinic) is a headache that can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours to days, they can affect your vision, make you dizzy, and the pain can be so severe that it interferes with daily functions.
This blog will break down different types of headaches (specifically migraines), possible causes, and tips for managing migraines with lupus.
Types of Headache Disorders:
Migraines are one of several headache disorders affecting forty-two million Americans. Migraine attacks typically start during adolescence or in the twenties, but people can and do experience onsets of migraines at any stage of life. For lupus patients, migraines and tension headaches are the most common types of headaches experienced. In fact, a recent medical journal shows that migraine is more common in lupus than the general public. As Dr. Don Thomas states (with more information on this in his second edition of The Lupus Encyclopedia), "This is HUGE. Up to now, patients have told us this, but we docs say there is no difference in prevalence... patients are right on this one!"
Migraines occur in up to one-third of SLE patients.
Headaches are believed to be among the most frequent types of pain people experience. In fact, according to The National Headache Foundation, 24% of people living with migraine disease report headaches so severe that they have sought emergency room care. As someone who has lived with migraines since adolescence, I can attest that the pain of a full-blown migraine is in my top three excruciating experiences, next to giving birth and passing 8mm kidney stones.
Did you know there are over 150 varying types of headaches? The two broad headache categories are:
Primary headache disorders: In these cases, headaches occur in the absence of other illnesses or diseases. Migraine and cluster headaches are the two most common types of primary headache disorders. You may be wondering what is the difference between the two? Cluster headaches are groupings of painful headache attacks, or clusters, that occur daily or multiple times a day for distinct periods of two weeks to three months and causes either agitation or autonomic nervous symptoms like increased sweating, nasal congestion, or other issues.
Secondary headache disorders: This is when the headaches are symptoms of other conditions. This can happen with viruses, infections, allergies, head injuries, tumors, a range of other diseases, medications, or are signs of other problems.
What is significant about this is that it can be problematic as a lupus patient to know which category your headache disorder falls under. As we know, lupus can affect various aspects of an individual’s health and well-being. One common symptom experienced by many people with lupus is migraine headaches. In fact, “headache” listed under "neurologic disorder" is one of the 11-point diagnostic criteria for lupus by the American College of Rheumatology. However, the link between lupus and migraines is complex. Are they caused by a lupus flare or another overlapping condition like fibromyalgia (more on that later)? Are they from photosensitivity or a medication? It can feel like a classic “chicken or the egg” scenario that continues to baffle doctors.
For the length of this blog, let’s assume that your headaches have been classified as a “secondary headache disorder.” While the exact cause of migraine headaches in individuals with lupus is not fully understood, several factors contribute to their occurrence:
Inflammation: Lupus involves chronic inflammation, which can trigger migraine headaches. However, true lupus headaches from inflammation are rare. They are so uncommon, that most lupus experts want it removed from the SLEDAI (SLE Dz Activity Index). These types of rare lupus headaches do not respond to narcotics but respond to steroid therapy.
Vascular Abnormalities: Lupus can affect blood vessels, leading to changes in blood flow to the brain and potentially triggering migraines.
Medications: Certain medications used to manage lupus, such as corticosteroids or immunosuppressants, may contribute to the development of migraines as a side effect.
Photosensitivity: For some, light can act as a trigger. It can also make their migraine headache worse. People with photosensitivity often report issues with sensitivity to artificial and natural lights before, during, or after a headache.
Overlap conditions: Fibromyalgia is a disorder characterized by widespread musculoskeletal pain and fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting how the brain and spinal cord process painful and non-painful signals. Possibly autoimmune-related, fibromyalgia presents with many possible migraine catalysts. Rheumatoid Arthritis is an autoimmune inflammatory condition that affects the joints. According to one study, published in the Journal of Headache and Pain, people with severe headaches known as migraines were at least twice as likely to also have rheumatoid arthritis.
Other factors of migraine causation: Exposure to allergens (things you’re allergic to) such as histamines can trigger your immune system to release certain chemicals, fuel inflammation throughout your body, and spur a migraine. If you’re prone to migraine headaches, your symptoms may be more severe during allergy season. Some people can also have “non allergic” triggers like perfume, cigarette smoke, and weather changes. Hormones: Migraines tend to follow a classic pattern throughout a woman’s life corresponding to the fluctuation of estrogen in the different reproductive stages. *list adapted from Lupus LA
Tips for Managing Migraine Headaches with Lupus:
Communicate With Your Doctors and Healthcare Support: Make sure that your healthcare providers are aware of your migraine headaches. Discuss your symptoms, triggers, and any medication side effects that may be contributing to your migraines. Your rheumatologist or primary care physician may discuss the need to see a neurologist. They can help develop a symptom management plan.
Identify Triggers and Maintain a Headache Diary: This was how I was able to help my migraine situation. I was able to track through a headache diary and identify my triggers (smoke, dehydration, wine, too much diary). Identifying and avoiding triggers (maybe for you it is stress, lack of sleep, certain foods, hormonal changes, or environmental factors) can help reduce the frequency and severity of migraines. Note the date, time, duration, intensity, and accompanying symptoms of each episode, along with any potential triggers.
Maintain Healthy Habits: Establishing a regular sleep pattern, practicing good sleep hygiene and stress management techniques (e.g., mindfulness, deep breathing exercises), and engaging in gentle exercise can promote overall well-being and potentially reduce the occurrence of migraines.
Eliminate Triggers: Bright lights, loud noises, and strong odors can trigger migraines. Minimize exposure to these triggers by creating a quiet and relaxing environment when you feel a migraine coming on.
Treat Yourself Well: Dehydration and skipping meals can contribute to migraines. Regular physical activity, adequate sleep, and a balanced diet can significantly reduce the frequency and severity of migraines. Ensure you drink enough water throughout the day and maintain a nutritious diet that includes whole foods and avoids potential trigger foods. Limit caffeine and alcohol and maintain regular eating and sleeping schedules.
Explore Symptom Management with Medication: Work with your healthcare team to develop a plan for managing migraine pain. This may involve over-the-counter or prescription medications specifically for migraines (but be careful of the rebound effect of certain medications like Excedrin that contain caffeine) . It’s important to follow your healthcare provider’s guidance and not rely solely on self-medication.
Mindfulness and Stress Management: Chronic stress can exacerbate migraines. Techniques such as yoga, meditation, and deep breathing exercises can help manage stress levels and potentially reduce migraine frequency. Acupuncture was something else I found really helpful to manage my migraine headaches. Some people find acupressure helpful as well.
Monitor Your Medications: Some medications used to treat lupus can potentially trigger migraines. Infusions if given too quickly can cause a headache and potentially trigger a migraine as well. Always discuss potential side effects with your healthcare provider and consider alternatives if necessary.
Hormone Help: One more note on hormones - it should be noted that 60% of women who live with migraines found attacks related to their menstrual cycle, which can be caused by a drop in the estrogen level. The problem is that oral contraceptives may affect the incidence of migraine, as well as pregnancy, and perimenopause. It is important to discuss hormone replacement therapy, and various options of contraceptives if migraines seem to be hormone related.
Seek Support: Living with lupus and migraine headaches can be challenging, and sometimes isolating. Connect with support groups, online communities, or counseling services to share experiences, gain insights, and find emotional support from others who understand your journey. *list adapted from Lupus LA
Remember, each person’s experience with lupus and migraines is unique. Managing migraine headaches alongside lupus requires a detailed approach to your specific triggers and symptoms. By openly communicating with your doctors, becoming aware of your triggers, integrating healthy lifestyle habits, and seeking support, you can effectively manage migraine headaches and enhance your overall well-being.
As someone who lives with migraines, I have learned that being patient with myself, incorporating self-care practices like acupuncture, exercise, relaxation techniques and good sleep hygiene, avoiding triggers, and working closely with my healthcare team has helped me find the best strategies for me.
Life can be a headache sometimes. For those of you who live with literal headaches, take the pressure off yourself by taking proactive steps and prioritizing your health. You can navigate the complexities of lupus and migraines if you are willing to listen to your mind and body.
Written & collected by:
Reviewed and amended by: Donald Thomas, M.D., FACP. FACR, RhMSUS
For more information on migraines, check out this informative video presented by Mayo Clinic:
The Lupus Encyclopedia, Donald Thomas, Jr. M.D. Johns Hopkins Press, pages 221-222
Comorbid and co-occurring conditions in migraine and associated risk of increasing headache pain intensity and headache frequency: results of the migraine in America symptoms and treatment (MAST) study | The Journal of Headache and Pain | Full Text (biomedcentral.com)
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2023.