The Risk for Migraines When You Have Multiple Sclerosis
More and worsening headaches were hard to ignore early into my new MS diagnosis. I wondered whether I’d just imagined them, to be honest. I was stuck in this “diagnosis mind” perspective, in which every little physical sensation seemed destined to be caused by MS. But especially on hot days, or when I became overcome by sensory overload, the headaches disrupted my life in a way that headaches never did before.
My mother suffered from migraines and I remember how much they disabled her. It made me wonder whether I might also have migraine disorder in addition to MS. Eventually, my headaches happened less frequently as my MS flare faded into remission following treatment with Tecfidera. This made me think that my headaches weren’t a migraine disorder at all, but related to MS.
MS and migraines: Double trouble
Then I began to read about recent research linking MS and migraines.1 Check out these things I learned, just in time to recognize June as Migraine and Headache Awareness Month.2
It would make sense, generally, that people with MS experience headaches as a result of inflammation. During an MS flare, inflammation sets in as part of the immune system’s organized assault on the myelin coating of our nerve fibers.
Specifically, migraine headaches have been linked to MS for years. Some research suggests that migraines are, in particular, more common among people with MS than in the general population.3 Findings from the Nurses’ Health Study II in 2012 also found a conclusive history of migraine linked to an increased risk of MS.4
How are MS and migraines connected?
However, theories about why remain at odds in MS research:5
- Are migraines a precursor syndrome of MS?
- Do migraines and MS share common disease pathways?
- Is the migraine experienced by someone with MS a distinct subtype?
Researchers may be unable to answer these questions conclusively right now, but recent research shows there’s a clear link between migraine and MS that shouldn’t go ignored by clinicians.
After all, migraine in MS patients leads to symptoms such as:4
- Trigeminal and occipital neuralgia
- Facial pain
- Lhermitte’s sign
- Temporomandibular joint pain
- Non-headache pain
Screening for headaches in MS patients by their doctors can lead to better, more individualized treatment approaches.1
Does it matter whether headaches and MS are linked?
Dr. Daniel Kantor, in MS Focus Magazine, makes a great case for noting the presence of headaches in people with MS. He suggests that if researchers and patients together could identify an “MS-specific” headache as an official MS symptom, then:6
- people whose MRIs suggest MS disease activity without symptoms, who also have this “MS-specific” headache, could then be diagnosed with either MS or clinically isolated syndrome (CIS)
- disease-modifying therapies (DMTs) used to treat MS may be offered earlier for a better outcome for those having “MS-specific” headaches
- a person with MS experiencing such a headache may be better able to note “breakthrough disease activity,” which could better inform healthcare decisions moving forward
Is there such a thing as an MS-specific headache?
The research isn’t far enough along to say so with any certainty. However, it does appear that people with MS often experience headaches with migraine features, such as:3
- pain on just one side of the head
- moderate to severe intensity
- lasting for longer than four hours
- worsening with activity
- sensations described as throbbing, pulsating, dullness, stabbing
- light and/or sound sensitivity
Ultimately, Kantor says: “Some people with migraines also happen to have MS and some people with MS have migraines. Sometimes this is simply coincidental, but sometimes the MS itself may be to blame for the migraines.”6
The most important thing: Pain relief
I finally decided that whether I had MS-related headaches or a separate migraine disorder, mattered less to me than treating the pain. Headaches cause fatigue, disability, and disruption, no matter what kind they are.
My neurologist prescribed a pain relief medication as needed for my headaches that took care of them when a strong cup of coffee — my previous approach to treating headache pain — didn’t hold up. And now I, more or less, have my headache situation under control.
If you’re having headaches that keep you from living your best life, talk to your neurologist. They should help you by offering both pharmaceutical or non-drug options for pain management when your favorite approaches — such as over-the-counter medications, strong coffee, or hot or cold compresses — aren’t giving you the relief you need. They may also take a closer look at your current treatments. Several DMTs can cause headaches, such as natalizumab (Tysabri), interferons (Avonex and Rebif, for example), and fingolimod (Gilenya).7
*Important: Do not discontinue use of any MS medications without the guidance of your neurologist.
Do you live with any comorbidities aside from MS?