What is Occipital Neuralgia (ON)?
Occipital Neuralgia is a chronic nerve pain condition caused by inflammation, irritation, and/or compression of the occipital nerves — the nerves that run from the upper neck up through the scalp. These nerves include the greater, lesser, and third occipital nerves, which run on both sides of the head, totaling six nerves, as shown in the image. When these nerves become compressed or irritated, patients may experience severe, often debilitating pain.
Patients are commonly misdiagnosed with migraine, tension headache, post-concussion syndrome, cervicogenic headache, or trigeminal neuralgia. It is important to understand that the difference between Occipital Neuralgia and these other conditions goes beyond symptoms alone. ON has a distinct mechanical cause — compression of the nerves by scar tissue, fascia, a blood vessel, or anatomical anomalies — whereas conditions like migraine are driven by neurochemical processes within the brain. This is why many patients with ON do not respond to typical migraine medications or treatments, and why accurate diagnosis is so critical to getting the right care.
Image from occipitalneuralgia.ca
Occipital Neuralgia is an invisible condition — real, debilitating, and often dismissed. It is the only headache neuralgia officially recognized by the International Classification of Headache Disorders (ICHD-3), yet it remains one of the most frequently misdiagnosed conditions in neurology. A recent study showed nearly 1 in 4 patients who presented to a headache clinic with the chief complaint of a headache were diagnosed with ON.
(Mathew PG, Najib U, Khaled S, Krel R. Prevalence of Occipital Neuralgia at a Community Hospital-based Headache Clinic. Neurol Clin Pract. 2021 Feb;11(1):6-12. doi: 10.1212/CPJ.0000000000000789. PMID: 33968466; PMCID: PMC8101323.)
Symptoms
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Head pain/ache which may be constant or intermittent
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Throbbing or aching pain at the base of the skull
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Radiating pain that follows the distribution of the occipital nerves, as shown in the pain sketches
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Shooting pain, sometimes described as jolts or lightning bolts through the head or scalp
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Allodynia — heightened sensitivity to touch, where everyday activities such as brushing hair, resting your head on a pillow, or water from the shower hitting the scalp can trigger or intensify pain
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Sensitivity to light and/or noise
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Numbness or tingling in the scalp or back of the head
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Neck pain or stiffness accompanying the headaches
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Fatigue
Image from Hazewinkel, M. (2025). Nerve decompression surgery in the head and neck: From novel screening modalities to patient reported outcomes. [Doctoral Thesis, Erasmus University Rotterdam].
Understanding Occipital Neuralgia & Treatment Options:
In-Depth Interviews with Leading Surgeons
Dr. Ziv Peled
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Dr. Angelo Leto Barone
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Dr. Ivica Ducic
Occipital Neuralgia: Symptoms, Causes, & Possible Treatment
Occipital Neuralgia: A Pediatric Surgeon's Perspective
Occipital Neuralgia: Proper Diagnosis & Early Treatment
A Milestone in Headache Surgery Research
We are thrilled to celebrate Dr. Merel Hazewinkel, the first PhD student in headache surgery, who has successfully defended her thesis at Erasmus University in Rotterdam. Her work is a beacon of progress for patients, surgeons, and researchers alike.
We are proud to have contributed to the printing and open access publication of her thesis, ensuring this important work remains freely available and reaches our entire community.
Interested in learning more about Dr. Hazewinkel’s findings?
You can access her publication here: Nerve Decompression Surgery in the Head and Neck – From Novel Screening to Long-Term Outcomes
Voices from the Community:
What Patients with Occipital Neuralgia Are Facing
We partnered with Patients Rising to better understand the unmet needs within the Occipital Neuralgia community. This initiative was prompted by a widespread dissatisfaction with the healthcare experience—something many patients found difficult to articulate and something we sought to better understand through data and lived experience.
The survey uncovered several important findings, including prolonged time to diagnosis, insurance-related barriers, variability in treatment approaches, and other challenges that continue to impact patient care.
Trusted Partners & Resources
Occipital Neuralgia Canada is a patient-driven website created by Karla Gronsdahl, PhD. Karla has turned her personal journey with occipital neuralgia into purpose—creating a platform that helps individuals better understand their symptoms, explore treatment options, and navigate the often complex realities of insurance and care access.
Karla first connected with our foundation through one of our patient education interviews, which helped guide her to an experienced surgeon—an example of how access to the right information can truly change a patient’s path! We are grateful to collaborate with individuals like Karla who are making a real difference in the community.
This website serves as a particularly valuable resource for individuals in Canada seeking region-specific guidance and support. Together, we are working to ensure patients feel informed, supported, and empowered to access the care they deserve.
The Facial Pain Association (FPA) is the leading nonprofit and advocacy organization dedicated to improving the lives of people living with neuropathic facial pain conditions, including trigeminal neuralgia. Serving everyone affected by facial pain, including those living with it, their families, care teams, and healthcare professionals, the FPA provides educational resources, one-on-one and group support, and advocacy initiatives that help navigate the complex physical, emotional, and financial challenges of living with facial pain.
The FPA connects people with accurate information, leading medical specialists, and a compassionate community. Their recently launched Facial Pain Registry is a longitudinal research database that empowers members of the facial pain community to contribute to and benefit from cutting-edge research. The organization also works to raise awareness among healthcare professionals and the public, while supporting research into better access and treatment.
With a mission rooted in hope and empowerment, the FPA is a trusted partner for the facial pain community, their families, and clinicians worldwide.
