Living without an accurate migraine diagnosis can be very challenging and frustrating. My migraine symptoms started when I was about 9. It shocked the whole family because I was pretty healthy up until that point. And all of a sudden, I kept laying down with an excruciating headache, nausea, and sensitivity to sounds and lights. No one in my family knew anything about migraines. My mom took me to my pediatric doctor who suggested we see an adult neurologist. They didn’t have any children’s headache specialists where I grew up. I was misdiagnosed for 4 years.
Accurate migraine diagnosis is vitally important because it will inform your treatment plan and any lifestyle changes that you may need to do. There are several types of migraines – like those with or without aura, ocular migraines, and many others. You should see a headache specialist to ensure your migraines are not just diagnosed but the physician identifies exactly what kind of migraines you may have. Here are just some of the steps it took to receive an accurate migraine diagnosis:
1. Find a headache specialist or a headache clinic.
Schedule an appointment with your primary care provider. Sometimes they attempt to diagnose and prescribe medications for migraines. But you need to ask them for a referral to a neurologist or a headache clinic. Tip: avoid the temptation to save time on seeing the specialist. Migraines are a complex condition. It is not just another headache and proper treatment requires thorough diagnostic workup and deep expertise.
2. Be thorough about all your migraine symptoms.
When you get a referral and see the headache specialist, they will likely ask a lot of questions about your symptoms but also order some imaging tests for the head. It is very important to have the imaging done. You want to exclude the worst possibilities first like tumors, cancer, etc.
3. Have a robust discussion about your migraine diagnosis with your physician.
Once all tests are done and you see the specialist for a follow-up and discuss your treatment and medication plan. This is your opportunity to ask a lot of questions. What did the tests show? If the diagnosis is migraine, then ask what type of migraine it is. Ask, how the doctor if he/she thinks there are any other possibilities in terms of diagnosis. You need to walk away from this meeting with a high confidence level about your diagnosis and know all the background about how this diagnosis was made.
Personal perspective:
The doctors gave me a wrong diagnosis for nearly 4 years because they were not specialized. I took an incredible amount of medications that taxed my system but did nothing for the symptoms. Here is what I remember from my appointment with a headache specialist: Wow! How do you know I am seeing these little sparking dots right before? Yes, yes, yes to light and sound and smell sensitivity. Absolutely true! I feel especially productive right before the attack and then the pain comes. I felt like he understood me and what I was going through. Needless to say, I started taking the correct medications that helped me during the attack. If only I met this doctor 4 years sooner!