Beyond Head Pain

by Rebecca McKinsey

A pounding head, a dark, quiet room, and a cool cloth—this is the public perception of migraine disease. For many, head pain is not the only symptom during an attack. A 2015 survey of more than 4,500 Americans with migraine found they experienced an average of 16.5 symptoms, only one of which was head pain.

Migraine attacks can affect the whole body, carrying with them a wide range of symptoms, not just the searing, pounding pain felt in the head.

Other symptoms include: depression, anxiety, memory lapses, and difficulty concentrating; hallucinations and visual disturbances; earaches, sinus pain and pressure, jaw pain and yawning; heat flashes and chills; gastrointestinal complications; frequent urination; dizziness, temporary paralysis, numbness, tingling, joint pain and stiffness; and sensitivity to smell, touch, motion, and light, according to the Headache and Migraine Policy Forum.

“Even after I had been disabled by chronic migraine for four years—and writing about it for two—I had no idea that many of the weird things happening in my body were due to migraine,” writes Kerrie Smyres for
In another piece, fellow writer Sarah Hackley, who also lives with migraine, shares, “Living with migraine is an exercise in coping with the unpredictable. Symptoms and severity can change from one attack to the next.

Frequency fluctuates. Medications stop working. The disease rarely presents in exactly the same way for any two of us. At times, this uniqueness can make us feel lonely even in the midst of those whom we feel understand the most.”

A complex and evolving disease

Researchers believe that more than 50 “susceptibility genes” can increase the chances of having migraine. They combine in different ways to produce different symptoms, explains Frederick Godley, MD, president and cofounder of the Association of Migraine Disorders and an ear, nose, and throat doctor, sometimes referred to as an otolaryngologist.

“The common denominator is that there’s sort of a hypersensitivity, over-reactivity of the systems, and that there’s a lot of variability between people because you get different combinations of these susceptibility genes,” he says. “So migraine is really a spectral disease, like autism.”

Some symptoms, such as vertigo, sinus issues, and vision problems, can show up outside of migraine attacks. And in certain cases, migraine disease might not come with head pain at all. Retinal migraine attacks are painless visual changes in one eye that are quickly resolved. Some children have abdominal pain, vertigo, or muscle spasms before developing more common migraine symptoms as they age.

Many people with migraine have separate but concurrent chronic conditions, or comorbidities, which can include fibromyalgia, hypothyroidism, or endometriosis, Godley says.

The existence of unusual symptoms and comorbidities actually can help diagnose migraine disease. Godley notes that some treatments address multiple problems—such as melatonin, which can help with both sleep disorders and migraine head pain—or the antidepressant amitriptyline, which also treats pelvic floor pain, tinnitus, vestibular migraine (which affects balance), and headaches.

Living with an unpredictable, invisible disease

Migraine and its fluctuating symptoms often impact mental health. Some of the most common comorbidities of migraine are mood disorders, Godley explains.

“When you have attacks of migraine, you start to develop this fear of the next attack,” he says. “It’s psychologically devastating to have to live with this disease, which is unpredictable. And then it’s also an unseen disease, so people are not very sympathetic, and a lot of people don’t understand the disease.”

The lack of understanding can extend to the exam room. Some physicians are averse to working with people with multiple symptoms or conditions, who may be more difficult to treat, creating not only a social stigma but a medical one.

“The way you dispel stigma is through education,” Godley says. “Raising awareness of migraine as a disease that is much more than an occasional bad headache, and one that is beyond the control of the victim, is critical to improving the lives of those living with migraine.”

The challenges of treatment

In light of all the variables, specialists often disagree on best practices for migraine and struggle with how best to treat it. Many people wait seven or eight years for a migraine diagnosis and then experience starts and stops in the effectiveness of treatments.

“Because [people with migraine] have all these disparate, simultaneous symptoms, they’re very confusing for clinicians,” Godley says. “There isn’t any single treatment—whether it be medication or cognitive behavioral therapy or neurostimulation—there’s no single therapy that’ll fix everybody who is under this umbrella. It’s challenging, but it’s also satisfying to try to help people who have been wandering in the desert for a long time.” •

Unusual migraine symptoms

A survey reported a variety of symptoms beyond head pain:

  • Tooth pain
  • Metallic taste
  • Strange smells
  • Swollen lymph nodes
  • Speech difficulties
  • Tingling arms, scalp, or face
  • Energy bursts
  • Hearing noises that are not actually present
  • Euphoria
  • Sensitive skin that is painful to the touch
  • Restless legs
  • Altered perception of the body, also referred to as Alice in Wonderland syndrome