Headaches are common among people with multiple sclerosis (MS). More than 22,000 MyMSTeam members report experiencing this symptom. “I get these headaches,” one member wrote. “I have been told they are MS headaches.”
One small study of people with MS indicated that 78 percent of participants had recently experienced a headache. Despite this, it’s still not known whether headaches should be considered an MS symptom. Migraine headaches are commonly reported by those living with MS, but 40 million people in the U.S. report problems with migraine headaches, making them a common symptom in the general population as well.
Most headaches, those associated with MS included, fall into one of three categories: migraine, tension-type headaches, and cluster headaches.
A study of 180 people with MS found that 55 percent of participants had experienced headaches in the prior four weeks. No cluster headaches were reported from the group, but 16 people reported a recent migraine and 23 people had recently had a tension headache.
Another type of head pain that is not precisely a headache is trigeminal neuralgia. This is a sharp, stabbing facial pain that usually appears in the cheek or jaw area. Trigeminal neuralgia can be associated with MS, and typically precedes the diagnosis of multiple sclerosis.
Many MyMSTeam members discuss how headaches can incapacitate them.
There are many reasons why a person living with MS may experience headaches. The study of 180 people with MS found that a person’s MS type may affect whether they experience headaches. In the study, those with relapsing-remitting MS suffered from headaches more often than those with secondary progressive MS. Medication also seemed to have an effect. Half of the participants who hadn’t had a headache recently had also taken corticosteroids. Of those who’d experienced recent headaches, only a quarter had been treated with corticosteroids.
One headache cause specifically related to the progression of MS is optic neuritis, which occurs when the optic nerve in the eye is inflamed. The nerve is directly connected to the brain, and is a major part of the ability to see. 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 when moving them. It is often the first symptom of MS. To determine whether optic neuritis is causing headaches, a neurologist will order an MRI scan. If there is visible damage to the brain, spinal cord, or any two separate areas of the central nervous system — and other diagnoses have been ruled out — MS can be considered as a possible diagnosis. At least one member got a diagnosis following optic neuritis and its associated headaches: “It did start with headaches, where it took me to the ER. They did a brain scan, which only shows my MS.”
A study of headache sufferers with MS speculated that migraine and MS could be related by inflammation. Early MS is associated with meningeal inflammation, which is also associated with migraine. “My diagnosis started because of headaches — in the migraine family, but not quite migraines,” one MyMSTeam member said. MS relapse is also associated with a higher rate of migraine.
A meta-analysis studying MS and migraines speculated that demyelination could lead to cortical spreading depression, which is a known risk factor for migraine, or that migraine itself could be an early symptom of MS. A third study gave evidence that interferon beta, used to treat MS, could trigger migraines as a side effect. In the study, 72 percent of participants who had been treated with interferon reported headache as a symptom, whereas only 54 percent of those without headaches had used interferon.
See what MS specialist Dr. Aaron Boster says about managing MS headaches.
MyMSTeam members often discuss headache triggers. Different medicines have caused headaches for some members. “I just started Copaxone 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,” said another. A third member mentioned temperature as a headache trigger. “I get them if I overheat.”
Headache treatments for people with MS will depend on the type of headache. When trigeminal neuralgia is the cause, anticonvulsants are the first line of treatment. “I have this and take Carbamazepine,” one member said. Anticonvulsant drugs work by calming overactive nerve signals. Surgery is prescribed only when drug therapy does not work.
Migraines can be treated with over-the-counter (OTC) medications like Advil (ibuprofen) and aspirin, but only for mild headaches. These drugs can also cause headaches and stomach bleeding if taken for long periods of time.
Prescription drugs used to treat migraine vary in type. Triptans reduce the swelling of blood vessels in the brain and are given as a pill, injection, or nasal spray. D.H.E. 45 (dihydroergotamine), an injection, is given at the onset of a migraine or when an aura is present. Reyvow (lasmiditan) and Ubrelvy (ubrogepant) are two recently developed oral medications that are used to treat migraines.
Some MyMSTeam members discuss migraine medications that worked for them. “Relpax is a super effective migraine med for us,” one said. “I take Topiramate too, 100 milligrams at night. First thing that has finally helped,” another explained.
Most tension headaches usually go away without treatment, but OTC pain relievers may help. Repeated use of them, however, can cause more headaches.
Other methods to relieve headaches have been mentioned by several MyMSTeam members. One advised, “Essential oils (rosemary or basil are other oil options) placed on temples. CBD [where legally available] and chiropractors are good suggestions. Consider acupuncture.”
Cold helped one member with headaches. “I have used ice and cold compresses,” they wrote. Another mentioned a rehydration solution: “The UCAN Hydrate tastes good and works well.” Adequate sleep cycles can also help control headaches.
MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 163,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
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