Headaches are common in people with multiple sclerosis (MS), with more than 25,000 MyMSTeam members reporting this symptom. “I get these headaches,” one member shared. “I have been told they are MS headaches.”

For some, headaches are among the first signs of MS. A narrative review found that 50 percent to 60 percent of people with MS experience headaches. A meta-analysis of 35 studies reported that 24 percent of people with MS have migraine, a debilitating headache condition. This rate is higher than that of the general population.

This article will explore several common headache types in MS, their possible causes, and their connection to the disease.

What Do Headaches With MS Feel Like?

Most headaches, including those linked to MS, fall into three categories: migraine, tension-type headaches, and cluster headaches. However, some people may experience unusual headache patterns that don’t fit neatly into these groups.

• Migraine causes intense, throbbing pain, usually on one side of the head. The headache can last for hours or even days, and it’s often accompanied by nausea, vomiting, and sensitivity to light and sound.
• Tension headaches are the most common type and feel like a band wrapped around the head. The squeezing or pressure-like sensation usually isn’t severe.
• Cluster headaches occur in patterns. They’re usually located on one side of the face and are associated with eye redness, runny nose, and facial sweating on the affected side.

A study of 180 people with MS found that 55 percent of participants had experienced headaches in the past four weeks. Among them, 16 reported migraine, and 23 reported tension-type headaches. No participants reported cluster headaches, but this type may still occur in the broader MS population.

How Do Headaches Affect People With MS?

Many MyMSTeam members describe how headaches can disrupt their daily lives.

• “I’ve had a severe headache constantly for over a month, and painkillers do not get rid of them completely.”
• “I have a headache/migraine just about every day. They can be extremely painful, and on some occasions, I can’t function.”
• “It seems that when a stressful situation comes up, I get a headache and my brain feels hot.”
• “I seem to get headaches more frequently now.”

What Causes Headaches in MS?

There are many reasons a person living with MS may experience headaches. Their headaches, including migraine, may be linked to inflammation or demyelination (loss of the protective coating around nerve fibers) caused by MS or could be a treatment side effect. However, the exact connection between headaches and MS still isn’t fully understood.

The study of 180 people with MS suggested that headache frequency might vary by MS type. For example, relapsing-remitting MS (a type that causes flare-ups followed by periods of recovery) is potentially linked to more frequent headaches than secondary progressive MS (which worsens over time without clear relapses). However, more research is needed to confirm this. The study also found differences in corticosteroid use between those with and without recent headaches. Corticosteroids are often used during MS flare-ups, but their role in headaches is unclear.

Optic Neuritis

One headache cause specifically related to the progression of MS is optic neuritis, an inflammation of the optic nerve in the eye. If you have an MS-related headache behind your eye, optic neuritis could be the reason. The optic nerve connects directly to the brain and plays a key role in vision. One MyMSTeam member with optic neuritis said, “For the past two weeks, I have been getting a bad headache every night. This comes with pain in my eyes and straining to see the TV.”

The most common symptom of optic neuritis is pain behind the eyes, especially when moving them, which is often among the first signs of MS. To check for optic neuritis and assess other MS-related symptoms, a neurologist (a doctor who specializes in diagnosing and treating diseases of the nervous system) will typically order an MRI scan of the brain and orbits (eye sockets), with special attention to the optic nerves. At least one MyMSTeam member got a diagnosis after experiencing optic neuritis and headaches: “It did start with headaches, where it took me to the ER. They did a brain scan, which only shows my MS.”

Migraine

A study of people with MS who experienced headaches speculated that migraine and MS may be linked through inflammation. Early MS is associated with brain inflammation, which is also a known migraine trigger. “My diagnosis started because of headaches — in the migraine family, but not quite migraines,” one MyMSTeam member said. MS relapses have also been linked to a higher rate of migraine.

A meta-analysis on MS and migraine proposed that demyelination in MS could contribute to cortical spreading depression, a brain process known to trigger migraine. The findings also suggested that migraine might be an early symptom of MS. While one study linked migraine risk to interferon-beta treatment, headaches are a common symptom in MS regardless of medication. It can be difficult to tell whether a headache is due to MS itself, a treatment side effect, or another cause. If headaches worsen after starting interferon-beta, it’s important to talk to your doctor.

Another theory suggests that migraine in MS may result from immune system changes that make brain nerves more sensitive to pain.

Trigeminal Neuralgia

Another type of head pain that isn’t exactly a headache is trigeminal neuralgia, a sharp, stabbing facial pain that usually affects the cheek or jaw area. Trigeminal neuralgia can be linked to MS and often appears before an MS diagnosis. In younger people, trigeminal neuralgia may be a sign of MS and should prompt further testing.

MS Medications

Research suggests that headaches are a common side effect of many disease-modifying therapies, including interferon-beta. Teriflunomide (Aubagio), a treatment that reduces MS flare-ups, has also been associated with headaches, though the reason isn’t fully understood.

Different medicines have caused headaches for some MyMSTeam members. “I just started a new medication this week, and after each injection, I’ve had a horrible headache that lasts for about 24 hours,” one member said.

“I’ve been on Tysabri for 17 infusions now. I have frequent headaches while on it. Varying intensity,” another member said.

How Are Headaches Treated in People With MS?

People with MS who experience headaches can manage them in the same ways that the general population does. Some treatments help prevent headaches, while others provide relief when they occur. Headache treatments for people with MS may depend on the type of headache.

Treating Trigeminal Neuralgia

When trigeminal neuralgia is the cause of head pain, anti-seizure medications are the first-line treatment. “I have this and take carbamazepine,” one member said. Anti-seizure medications work by calming overactive nerve signals. Surgery is considered only if drug therapy doesn’t work.

Treating Migraine

Mild migraine may be treated with over-the-counter (OTC) medications such as ibuprofen (Advil) and naproxen (Aleve). However, frequent or long-term use of these medications can lead to rebound headaches (also called medication overuse headaches) and increase the risk of gastrointestinal side effects, such as stomach bleeding — especially in older adults or people with a history of ulcers.

Several prescription drugs are available to treat migraine:

• Triptans reduce swelling in blood vessels in the brain and are available as pills, injections, and nasal sprays.
• Dihydroergotamine (D.H.E. 45) is an injection used at the start of a migraine or when an aura (sensory disturbances before or after a migraine attack) appears.
• Anti-calcitonin gene-related peptide (anti-CGRP) therapies (erenumab, eptinezumab, fremanezumab, galcanezumab) and botulinum toxin (Botox, Dysport, Xeomin) injections show promise for treating chronic migraine. Research on their effects in people with MS is still limited.

Some MyMSTeam members discuss migraine medications that worked for them. “Relpax is a super effective migraine med for us,” one member said. “I take topiramate, too, 100 milligrams at night. First thing that has finally helped,” another explained.

Although personal experiences can be valuable, it’s important to consult a healthcare professional to determine the safest and most effective migraine treatment plan based on your needs.

Treating Tension Headaches

Most tension headaches go away without treatment, and OTC pain relievers may help. However, like with migraine medications, frequent or excessive use of OTC pain relievers can lead to medication overuse headaches.

Home Remedies

Several MyMSTeam members have mentioned other methods to relieve headaches. One advised, “Essential oils (rosemary or basil are other oil options) placed on temples. CBD and chiropractors are good suggestions. Consider acupuncture.” Note that CBD products are legal, with some restrictions, in most but not all states.

Cold temperatures helped one member with headaches: “I have used ice and cold compresses.” Another member mentioned a rehydration solution: “The Ucan Hydrate tastes good and works well.”

Getting enough sleep on a regular schedule can also help manage headaches. Your healthcare provider may be able to offer more suggestions for relief targeted to your type of MS headaches.

Talk With Others Who Understand

MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 218,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.

Are you living with MS and headaches? Share your experience in the comments below, or start a conversation by posting on your Activities page.