Everybody has a headache occasionally; however, people with multiple sclerosis (MS) are much more prone to migraine-like or cluster headaches than people in the general population. While the cause of most headaches is a mystery, some headaches in people with MS can be caused by lesions, depression or specific medications that they are taking. You should see your doctor for: Any type of unusual headache, a headache that keeps recurring, or one that lasts for a long time.
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What Do MS-Related Headaches Feel Like?Headaches that are directly associated with MS have been described as:
These seem to be more common in people with relapsing-remitting MS. They can be described as:
- Often preceded by an aura (blurry or distorted vision signaling that a headache is about to begin) or prodrome symptoms (including fatigue, hunger or anxiety)
- Throbbing on one or both sides of the head
- Can be accompanied by sensitivity to light or sound
- Typically accompanied by nausea, vomiting or loss of appetite
- Residual pain and discomfort often follow headaches
- Lasting from 4 to 12 hours
Cluster headaches have the following characteristics:
- May begin as a severe burning or stinging sensation on one side of the nose or deep in one eye
- Pain peaks rapidly
- Feels like electric shocks or “explosions” in or behind the eye
- Only on one side of the face
- Comes on without warning (unlike many migraines)
- Tend to recur at the same time every day (often soon after falling asleep), usually for a period of several weeks
- Can cause eye to water, nose to run or eyelid to droop
- Pain completely resolves after headache (until next headache)
- Lasting from 15 minutes to 3 hours
These headaches are the most common in the general population, and can be described as follows:
- Rarely causing severe pain, more often moderate or mild
- Constant, band-like aching or squeezing sensation
- Pain is either right over the eyebrows or encircling the head
- Comes on gradually
- Can happen any part of the day, but usually occurs in the latter part of the day
- Lasting from 30 minutes to all day
How Common Are Headaches in People with MS?Up to 58 percent of people with MS experience chronic or recurring headaches, compared to 16.5 percent of the general population. Of course, almost everyone (over 90 percent of people, MS or not) gets occasional headaches.
What Causes Headaches in People with MS?Many different things can cause headaches in people with MS, including:
Lesions: A study looking at 277 MS patients suggested an association between number of midbrain lesions and migraine headaches. Interestingly, cluster headaches in people with MS have also been shown to be linked with lesions in this area of the brain, where the trigeminal nerve, which is also called the fifth cranial nerve, originates. (The 12 cranial nerves emerge directly from the brain instead of from the spinal cord.) This is the nerve that is involved in the other “most painful MS symptom” – trigeminal neuralgia or tic doloureux. However, most headaches are not associated with MRI findings.
Optic Neuritis: Headaches are also common during episodes of optic neuritis. These headaches are usually only on one side and worsen when then eyes are moved.
Depression: Depression, a very common MS symptom, has also been associated with headaches in people with MS. Depression and migraine headaches are both linked to low serotonin levels.
Medication Side Effects: The interferon-based disease modifying therapies (Rebif, Betaseron and Avonex) can cause headaches or make pre-existing headaches worse. Provigil, Symmetrel and other drugs used for fatigue also have headaches as a primary side effect.
How Severe Can Headaches Get?Headaches can be extremely disabling. Migraine headaches can be incredibly painful, and the accompanying light and sound sensitivity can lead to people withdrawing to a quiet, dark space for hours at a time. Even when the migraine has passed, people are often left with residual symptoms (called the postdome phase), which include fatigue, irritability, problems concentrating and dizziness.
Cluster headaches are often described by people as the worst pain they could ever imagine, akin to “a burning ice pick being plunged into their eye.” The pain from cluster headaches causes many people to fall on the floor, pull at their hair, bang their heads on the wall, rock back and forth, scream and weep. Although the pain from cluster headaches resolves (no lingering effect like with migraines), people often feel completely exhausted after each headache. Just as disabling as the headaches is the fear and dread that people feel, knowing there is a good chance that another one is coming within hours or the next day. This anxiety can interfere with daily activities or social contact, as well as lead to insomnia, as people avoid falling asleep (most cluster headaches occur at night).
Additional Points/InformationNaps: Some people find that a long nap (5 or more hours) following a migraine helps relieve some of the residual symptoms.
Take Notes: It is helpful to keep a symptom log where you record the specifics of your headaches, including time of day they started, how long they lasted, any triggers that you might have noticed and anything that you did (including medications) that helped. This will help your doctor to determine what might be causing the headaches, what type they are and what kind of treatment to try.
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Gentile S, Ferrero M, Vaula G, Rainero I, Pinessi L. Cluster headache attacks and multiple sclerosis. J Headache Pain. 2007 Sep;8(4):245-7.