In his story “Does Multiple Sclerosis Cause Headaches?” posted on MutiplesSclerosis.net, author Matt Allen explores the correlation between MS and migraines. As someone with MS and also a migraine sufferer, he took notice as more and more attention was paid in the media to the possible correlation.
In his story, he cites a 2017 study that found that headaches are experienced by 78 percent of people newly diagnosed with MS.
This study alone is not enough to make a final conclusion, but it did spark a conversation in the MultipleSclerosis.net Facebook page community. We posted Allen’s story to see if other people with MS could relate to his experience.
More than 100 community members commented, and here is what they shared.
“A migraine that lasted for months is what caused my doctor to order an MRI that discovered my MS.”
Several people mentioned that they first learned of their multiple sclerosis because of their migraines. The migraines prompted doctors to order tests, including CT scans and MRIs. When an MRI is performed, doctors are able to get a better look at the lesions on the brain or spinal cord that cause MS.
“During the worst migraine in my life, I had to go to the ER. The doctor there ordered a CT scan. He mentioned that it looked like I had MS. The first time it was ever mentioned. It was also recommended that I get an MRI to confirm it and talk to a neurologist.”
“I have had migraines since I was very young. I had my first MRI because of migraines at age 8 or 9. And actually, a migraine that lasted for months is what caused my doctor to order an MRI that discovered my MS.”
“I started getting migraines a few years after my MS diagnosis.”
So many shared that they believed there is a connection between their MS and their migraines. Those who only started getting migraines after their MS diagnosis really had a reason to see a connection.
“Yes! I never suffered from headaches before MS. Now I get mini-migraines. They last from a few seconds to a couple of hours. Pain in the brain!”
I started getting migraines a few years after my MS diagnosis. It is always on one side of head. My neurologist said the pain is where one of my bigger white spots [aka lesions] on my brain is.”
“There is only so much room in your skull.”
MS lesions, aka scarring or plaques, often appear in the brain. A couple of people in the community made the connection that this scar tissue is taking up space in the brain, and might be largely responsible for the headaches. Granted, in some causes it is possible for lesions to repair themselves, but many with MS typically have some lesions whenever a flare-up occurs.
“I had my first migraine headache at the age of 9. I have the nausea, auras, “blank spots”, and then even numbness in my hands sometimes. There is only so much room in your skull. If you have lesions taking up room, then I think these have to be causing pressure and doing God only knows what else in the brain. So, yes, I believe MS can cause headaches.”
“After age 40-50, migraines can come back with a vengeance.”
A few people shared that their migraines have been different in the different decades of their lives with MS. Particularly, some shared that the migraines worsened as they got older. This could simply be because of how MS has been affecting the body, or it could be the result of something else. The science is unclear, but it sounds like many in the community know their bodies well enough to have an understanding of what this looks like for them.
“I had these long before I was diagnosed with MS. Then a few years ago I had to see an ENT for sinus issues. He looked over my MRI and said, “You have had a lot of migraine headaches, haven’t you?” I replied that I had and asked how he could tell. He explained I had a number of scattered small lesions in the frontal lobe of my brain, a hallmark sign. He went on to explain that migraine syndrome is a separate neurological disease of its own right. People with or without MS can develop this. Those with MS are prone to this. They may have had it earlier in life and it disappeared. After age 40-50, migraines can come back with a vengeance.”
“That last bit really resonates with my own history: I had migraines and tension headaches from age 10 to 20, then nothing to speak of until I hit my 40s and 50s and they were different. They lasted for weeks instead of a day and seemed connected with sinus, allergies and barometric pressure, which is just as bad. Now in my early 60s, I have no pain. I just see pretty, shimmering auras that last about ten minutes. It could change again I suppose.”
We are so grateful for how candidly so many people shared about their headaches and MS. We believe that members of the community can learn so much from each other’s experiences. A big thank you to the online MS community!