Getting a migraine diagnosis can be a long and winding journey. Know the road ahead and you’re less likely to get lost along the way.
If you were to break your arm, you’d go directly to the doctor, who’d diagnose and treat you immediately — right? Of course. When you have migraine, however, the process isn’t nearly so speedy or straightforward. Migraine doesn’t show up on any X-ray. It can mimic the symptoms of other disorders, and often stumps non-specialists, who are less aware of how to diagnose migraine. When the University of Stanford’s Headache Clinic did an analysis of their own headache patients, it found it had taken patients an average of 18 months and $12,000 to obtain the correct diagnosis.
No one should have to wait so long to have their migraine recognized and treated. But some knowledge can go a long way to shorten the winding path to diagnosis: If you have a map, you’re less likely to get lost. Here’s the journey, complete with detours, wrong turns, and delays.
The Journey Begins: Delays And Roadblocks
Step 1: You neglect to tell your doctor about your headaches. The stigma around migraine is so powerful that people suffer headaches and other symptoms for years — maybe even since childhood — without questioning or complaining, least of all to their doctors. An estimated 60 percent of migraine patients never see their primary for help with their condition. And when patients do bring it up, it’s often an afterthought late in the visit, in what doctors call a “doorknob diagnosis”: As the doctor puts a hand on the doorknob to leave, the patient will offer, “By the way, I’ve been having these headaches…”
Step 2: Your primary doctor doesn’t take it seriously. Many people with migraine initially feel shrugged off by a doctor. Because so many doctors lack migraine knowledge, they may not see the significance of your headache for all the reasons society misjudges it: After all, you don’t look sick, there doesn’t seem to be a pressing emergency, plus the doctor may have more urgent cases to get to. Sometimes that seemingly unconcerned doctor might prescribe a migraine medicine to test out a diagnosis. But if the meds don’t work, the patient often won’t follow up, thinking the doctor either isn’t interested or can’t help.
Where Is This Going? Detours And Wrong Turns
Step 3: You see lots of doctors. In their dogged quest for answers, people with migraine often wind up consulting many specialists, including ear, nose and throat doctors; eye doctors; gastroenterologists, immunologists and chiropractors. In the process of seeing all those doctors…
Step 4: You get lots of unnecessary tests. In doctors’ dogged quest for answers, they order up a lot of poking, prodding, and scanning via blood tests, swabs, MRIs, CT scans, EEGs, X-rays, and so on. The good news is, the scary stuff is ruled out, like tumors and brain bleeds, along with everything else. Or perhaps…
Step 5: You are misdiagnosed. Unfortunately, it happens all the time. Patients may be treated for conditions they don’t have. Or, if doctors still can’t come to a firm conclusion, patients may be sent home with a misdiagnosis of fibromyalgia or chronic fatigue syndromes, which have amorphous symptoms and no clear treatment. At that point, doctors usually give up, and so do many patients.
But not you!
Destination Ahead: Migraine Diagnosis
Step 6: You start the process over again. It might be months or even years later. But your symptoms have never gone away — they may have gotten worse — and something or someone spurs you to take action again. You call one of your doctors and ask them to take another look.
Step 7: Diagnosis! Some heroic doctor decides to start from scratch. They ask for a detailed history of your headache frequency, severity and symptoms; your family history; and the effect your headaches have had on your everyday life; and recognize it as a particular kind of migraine. Eureka! You get your diagnosis and leave the office with a treatment plan.
Congratulations, you’re finally on the road to improved health. Stick with your treatment plan, and you’ll increasingly get to decide where the road goes from here.