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Headache is a common occurrence for people with multiple sclerosis (MS). More than 22,000 MyMSTeam members report headaches as a symptom. “I get these headaches. I have been told they are MS headaches,” one member said.
One small study of people with MS indicated that 78 percent had recently had a headache. Despite this, it’s still not known whether headache 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 of headache disorders: migraine, tension-type headaches, and cluster headaches. Migraines are severe headaches with throbbing or pulsating pain that is usually focused on one side of the head. They can last from a few hours to days at a time. Tension headaches are the most common headaches and feel like a band wrapped around the head. Pain from tension headaches is usually not 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 on headache types among those with MS found 55 percent of participants had had headaches in the past 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.
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 had recent headaches, only a quarter had been treated with corticosteroids.
One headache cause specifically related to the progression of MS is optic neuritis, 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 see if optic neuritis is the cause of headache, 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 from 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 migraine 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 migraine 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.
MyMSTeam members often discuss headache triggers. Different medicines have caused headaches for some members.“I just started Copaxone 40 milligrams 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.”
Treatment for headache in MS depends 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 medication like 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. 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 for migraine.
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.
Tension headache usually goes away without treatment, but over-the-counter pain relievers may help. Repeated use of them, however, can cause more headaches.
Other methods to relieve headaches were 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.” Another mentioned a rehydration solution: “The UCAN Hydrate tastes good and works well.”
Here are some recent conversations about headache and MS:
Are you dealing with MS headaches? What has helped you to live with them? Comment below or start a new conversation on MyMSTeam.
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