“Oh, I get that, too.” Those of us with multiple sclerosis (MS) and other chronic conditions are more used to hearing that reply than we care to be. Particularly when talking about fatigue, we hear that everyone gets tired sometimes and, perhaps, that we should just power through it.
After reading a paper published last year in the journal Multiple Sclerosis and Related Disorders, I can only imagine talking with people about MS headaches.
The authors stated that while headache is rarely a symptom of multiple sclerosis, “Migraine-type headache occurs in pwMS [patients with MS] more frequently than in the general population.”
The eye rolls we’re going to get from our less-empathetic acquaintances from this one …
RELATED: MS and Migraine: For Me, the Connection Feels Real
Headache in MS Can Have Numerous Causes
The simple fact appears that MS and migraine are linked, they share some risk factors, and they often coexist. The study even suggests that migraine, tension-type headache, and cluster headache — the most frequently reported primary headache syndromes in pwMS — sometimes precede MS diagnosis (prodromal MS).
As with many other MS symptoms and comorbidities (the simultaneous presence of two or more diseases or medical conditions in a person), there can be secondary and often serious issues that cause the headaches many of us experience, including “cerebral vein thrombosis, CNS or systemic infection, cervical or cranial trauma, headaches associated with psychiatric disorders, medication-overuse headache, etc.,” the authors wrote.
They go on to say, “In pwMS, the headache could be an adverse effect of the disease-modifying therapies, or a complication of pain medication overuse prescribed to relieve other causes of pain related to MS (neuropathic pain, mechanical pain, pain associated with spasticity, and other types).
These, of course, are all medically significant headaches and not typical headaches, which can be caused by lack of sleep, physical tension, dehydration, hypoglycemia, menstrual cycle, and more.
So those who think they “get that too” may very well not.
For what appears to be a significant number of people with MS and migraine, an association (possibly causative) between brain-stem lesions (around the fourth ventricle or midbrain) can often be drawn. But the research jury is still out on that relationship.
What to Do About Headaches When You Have MS
If headaches are part of your life with MS and are not related to some of the more serious or mundane causes, they are often considered a “quality of life” issue. For those of us who have experienced bouts of “bad” or even debilitating headache, we can attest to the decline in quality of life during said events.
If you have severe headaches and you have MS, it’s important to talk about them with your neurologist. Help the doctor complete (and insist upon) a medical history of your headaches. They may be unrelated to MS, and they may be unrelated to more severe health conditions. Either way, there will be telltale clues in that history that might help to unveil the cause of your pain.
“Clinicians need to understand that both conditions [migraine and MS] are linked and can coexist,” say the study authors. It could be understood from this that some clinicians may not fully understand that MS and migraine can be two heads of the same beast.
As always, being an informed, “professional patient” is an important part of our medical self-advocacy. If a symptom is real to you, it’s real. Don’t let anyone tell you — be they doctor, friend, or family — any different.
Wishing you and your family the best of health.