How to Find a Neurologist or Headache Specialist to Fit YOUR Needs

I find myself back in the trenches. My long-term headache specialist retired two years ago. Since then, I've been piecemealing my care for cluster headaches and migraine through my OBGYN. Unfortunately, the time has come to find a new neurologist or headache specialist. As many of you know, this is a unique doctor-patient relationship. 

How did I find my last headache specialist?

My cluster headache diagnosis was hard-won. While I initially got the correct diagnosis, I moved away after that. Every medical professional I saw for the next 7 years dismissed my attacks and denied my diagnosis. Emergency healthcare workers, primary care providers, Urgent Care doctors, and others said I must have migraine because of my sex. Finally, I found a PCP who referred me to a neurologist to confirm the diagnosis. That center led me to my absolute favorite headache specialist in Denver, Colorado. I was so impressed with her that I traveled from Southwest Michigan to Denver once a year to keep her as my doctor. 

I'm so sad she retired because it takes a lot for me to trust my headache doctor. She saw me at my lowest, helped me compile research for my book on cluster headaches, and managed my treatments for 8 years. I can't go to just anyone after such amazing care. Ten years in headache advocacy has taught me a good neurologist or specialist is a needle in a haystack.

Who is best equipped for my care?

Most headache specialists have at least a decent understanding of migraine disease and what medications or treatments are available. However, rare headache disorders require a neurologist with more detailed knowledge and experience in diagnosing and treating them. Cluster headache care is like the Wild Wild West. Some neurologists prescribe "standard treatments" that are ancient and not indicated anymore. At the same time, they refuse to prescribe high-flow oxygen (the actual standard of care).

I turned to my cluster headache community for recommendations for a new specialist. That way, I choose someone who understands cluster headaches and values patient input. Unfortunately, I can't schedule a meeting with them until my PCP gives me a referral in a few months.

Why aren't there more headache specialists?

The American Headache Society reports that 55 million Americans have migraine disease, and many others struggle with similar conditions, such as SUNCT, trigeminal neuralgia, and cluster headaches.¹ Yet, there are less than 700 certified headache specialists in the United States. 

Are there headache specialists near me?

Several states have zero headache specialists, forcing patients to seek care out of state. I am fortunate to live within driving distance of Chicago and Detroit, two major cities with several neurologists to choose from, including MHNI (Michigan Headache and Neurological Institute) and the Diamond Headache Clinic. 

I have several options for managing cluster headaches. That allows me to be picky. I'm willing to drive to meet with a headache specialist who understands cluster headaches and stays up to date with new treatments.

When should you find a new doctor?

Don't be afraid to "fire" your doctor. I've done it with primary care physicians, OBGYNs, and specialists. Your neurologist should treat you with respect and listen to your symptoms. People with headache disorders may develop new types of headaches. Your doctor should not ignore changes in your pain level and frequency of attacks. Find a new doctor if you don't feel comfortable and heard during appointments.