Symptom Management

Recently, I had been having these headaches at work. At first, I blamed the fluorescent lights above my head. Then I blamed staring at monitors for eight hours a day. The one thing I didn’t blame was my MS.

The pain was constant. It started over my right eye and stretched to the back of my head. These headaches lingered for more than two weeks without letting up. By chance, I had my semiannual appointment with my neurologist. Because the headaches were literally at the top of my mind, I told him about them. Surprisingly, he said headaches can be a symptom of MS. Specifically, he was concerned they were MS-related because they were lasting so long, weren’t responding to over-the-counter medicine, and were happening so frequently. I’d also been having trouble staying asleep throughout the night, which I attributed to increased stress in my life. My neurologist prescribed a low-dose antidepressant to take before bedtime. The results were almost immediate: the headaches disappeared the very next day, and I was finally able to sleep through the night.

I have MRIs coming up, which may reveal some kind of MS activity. But my experience reminded me that with MS, even something as “ordinary” as a headache might be a sign of disease activity.

Headaches and MS: What the research says:

• Common in MS: Studies show that 35 to 70 percent of people with MS experience headaches. Migraines and tension headaches are the most common types.
• Not just coincidence: Research suggests migraines may be part of the MS prodrome (early warning signs), sometimes showing up years before diagnosis.
• Therapies matter: Some MS treatments can trigger or worsen headaches (like interferons), while others may have less effect.
• Mechanisms: Scientists think headaches in MS may be tied to inflammation, changes in the blood–brain barrier, or overlapping stress and sleep problems.

Why it matters

For me, headaches were easy to dismiss. I thought they were just from work stress, bad lighting, or too much screen time.  My neurologist, however, helped me see the bigger picture. With MS, it’s always worth paying attention when symptoms change, linger, or don’t respond to typical fixes.

What You Can Do

If you live with MS and start having new or worsening headaches:

• Don’t ignore them: Mention them to your doctor.
• Keep a headache diary: Make a note when they occur, what they feel like, and what might trigger them.
• Prioritize sleep and manage stress: Both lack of sleep and increased stress can worsen headaches and MS symptoms.
• Review your medications side effects: Some disease-modifying therapies can contribute to headache frequency.

Headaches may seem ordinary, but for those of us with MS, they can carry a deeper meaning. My story is just one example of how MS continues to surprise me, even years into my diagnosis. Sometimes it’s not just a headache, it’s my MS reminding me to listen to my body and keep the conversation open with my care team.