Boring patients with boring diseases

When focusing on the paper crackling between my chilled skin and the vinyl of the exam bed wasn’t enough to distract from the discomfort of my treatment, I asked my neurologist why there are so few specialists for migraine. I’ve been seeing a specialist in stroke for the last 5 years while I wait for a spot to open up. He told me that migraine is a boring disease to treat. I tried not to move as he started a series of injections in the base of my skull.

Migraine affects more than one billion people. During a migraine attack, people may suffer severe pain, nausea and vomiting, painful sensory sensitivity, perceptual disturbances, profound fatigue, confusion, and other neurological effects. Attacks last many hours or even days. A fraction of patients with migraine develop a chronic form of the disease. Isolated and relatively infrequent attacks become nearly continuous and many symptoms, such as light sensitivity persist between attacks. The World Health Organization classes severe chronic migraine with its most severe disabilities, on par in its effect on quality of life, productivity, and financial security to quadriplegia, terminal stage cancer, and severe depression. Including less severe variants of the disease, it causes more total years lost to disability than all other neurological disorders combined.

Migraine has a whole host of neurological symptoms and causes noticeable neuroanatomical changes and brain lesions, but the genes associated with migraine largely act in the cardiovascular and gastrointestinal system. Reconciling the neurological symptoms and changes with genetic findings is a fascinating puzzle that could illuminate complex connections between bodily systems and lead to treatments for many disparate diseases.

And with all that, research funding is 10-100x lower than for other diseases with similar individual and population level burdens, treatment options are limited and have considerable tradeoffs, and neurologists find it boring.