A headache disorder that is characterized by periodic severe, unilateral orbital, supraorbital, and/or temporal pain, and is associated with ipsilateral cranial autonomic symptoms.
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for cluster headache syndrome is limited due to its relatively rare occurrence and the challenges in systematically studying such a specific headache disorder. Because it affects a smaller population, comprehensive clinical studies have been scarce, leading to gaps in our understanding of its clinical features and potential genetic underpinnings. This can be frustrating for patients seeking answers, but ongoing research may provide more insights in the future.
To navigate your journey with cluster headache syndrome, consider consulting a neurologist who specializes in headache disorders. They can provide targeted care and management strategies. Additionally, organizations like Clusterbusters (https://clusterbusters.org) and the Organization for Understanding Cluster Headaches (O.U.C.H.) (https://ouch-us.org) offer valuable resources and support for patients. Participating in patient registries or natural history studies may also be an option to contribute to the understanding of this condition and connect with others facing similar challenges.
There are currently 30 active clinical trials focused on cluster headache syndrome, which indicates a growing interest in understanding and treating this condition. While there are no orphan drug designations, these trials may explore various treatment options and interventions. You can find more information about these trials by visiting ClinicalTrials.gov and searching for 'cluster headache syndrome'. This research offers hope for better management strategies and potential therapies in the future.
Actionable guidance for navigating care for cluster headache syndrome
To navigate your journey with cluster headache syndrome, consider consulting a neurologist who specializes in headache disorders. They can provide targeted care and management strategies. Additionally, organizations like Clusterbusters (https://clusterbusters.org) and the Organization for Understanding Cluster Headaches (O.U.C.H.) (https://ouch-us.org) offer valuable resources and support for patients. Participating in patient registries or natural history studies may also be an option to contribute to the understanding of this condition and connect with others facing similar challenges.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the cluster headache syndrome community
Helpful links for rare disease information and support
The documentation for cluster headache syndrome is limited due to its relatively rare occurrence and the challenges in systematically studying such a specific headache disorder. Because it affects a smaller population, comprehensive clinical studies have been scarce, leading to gaps in our understanding of its clinical features and potential genetic underpinnings. This can be frustrating for patients seeking answers, but ongoing research may provide more insights in the future.
To navigate your journey with cluster headache syndrome, consider consulting a neurologist who specializes in headache disorders. They can provide targeted care and management strategies. Additionally, organizations like Clusterbusters (https://clusterbusters.org) and the Organization for Understanding Cluster Headaches (O.U.C.H.) (https://ouch-us.org) offer valuable resources and support for patients. Participating in patient registries or natural history studies may also be an option to contribute to the understanding of this condition and connect with others facing similar challenges.
There are currently 30 active clinical trials focused on cluster headache syndrome, which indicates a growing interest in understanding and treating this condition. While there are no orphan drug designations, these trials may explore various treatment options and interventions. You can find more information about these trials by visiting ClinicalTrials.gov and searching for 'cluster headache syndrome'. This research offers hope for better management strategies and potential therapies in the future.
Actionable guidance for navigating care for cluster headache syndrome
To navigate your journey with cluster headache syndrome, consider consulting a neurologist who specializes in headache disorders. They can provide targeted care and management strategies. Additionally, organizations like Clusterbusters (https://clusterbusters.org) and the Organization for Understanding Cluster Headaches (O.U.C.H.) (https://ouch-us.org) offer valuable resources and support for patients. Participating in patient registries or natural history studies may also be an option to contribute to the understanding of this condition and connect with others facing similar challenges.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the cluster headache syndrome community
Helpful links for rare disease information and support
The documentation for cluster headache syndrome is limited due to its relatively rare occurrence and the challenges in systematically studying such a specific headache disorder. Because it affects a smaller population, comprehensive clinical studies have been scarce, leading to gaps in our understanding of its clinical features and potential genetic underpinnings. This can be frustrating for patients seeking answers, but ongoing research may provide more insights in the future.
To navigate your journey with cluster headache syndrome, consider consulting a neurologist who specializes in headache disorders. They can provide targeted care and management strategies. Additionally, organizations like Clusterbusters (https://clusterbusters.org) and the Organization for Understanding Cluster Headaches (O.U.C.H.) (https://ouch-us.org) offer valuable resources and support for patients. Participating in patient registries or natural history studies may also be an option to contribute to the understanding of this condition and connect with others facing similar challenges.
There are currently 30 active clinical trials focused on cluster headache syndrome, which indicates a growing interest in understanding and treating this condition. While there are no orphan drug designations, these trials may explore various treatment options and interventions. You can find more information about these trials by visiting ClinicalTrials.gov and searching for 'cluster headache syndrome'. This research offers hope for better management strategies and potential therapies in the future.
Actionable guidance for navigating care for cluster headache syndrome
To navigate your journey with cluster headache syndrome, consider consulting a neurologist who specializes in headache disorders. They can provide targeted care and management strategies. Additionally, organizations like Clusterbusters (https://clusterbusters.org) and the Organization for Understanding Cluster Headaches (O.U.C.H.) (https://ouch-us.org) offer valuable resources and support for patients. Participating in patient registries or natural history studies may also be an option to contribute to the understanding of this condition and connect with others facing similar challenges.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the cluster headache syndrome community
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 15, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
1 peer-reviewed source from PubMed
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.