How to Utilize Available Community Resources and Support Services to Help Headache Patients

How to Utilize Available Community Resources and Support Services to Help Headache Patients

Headache disorders are an invisible epidemic. Nearly 90% of the US population has experienced some type of head pain such as tension-type headaches, migraine attacks, cluster headaches, or new daily persistent headache.¹ If you are a healthcare provider currently practicing in family or internal medicine, pediatrics, women’s health, urgent care or emergency room, you will encounter people living with various headache diseases.

Headache diseases are often comorbid with the psychological state of loneliness.² It is not only the pain but the social stigma that can lead patients down a lonely and unhappy road. A healthcare provider is in a key position to help patients navigate both available treatments and support services. Sometimes, when a busy provider does not have time to discuss available support groups with a headache patient, giving them a copy of a printed article or sending them a website link is enough information to help empower them to get involved in the headache community and change their quality of life.

The Importance of Finding a Headache Tribe

How can those who experience a high level of pain and stigma connect and receive the support they cannot get from their immediate family and healthcare community? Connecting patients with different support organizations can help address loneliness and may help improve health outcomes and management.² Technology has expanded to make this easier, and virtual support groups are available. Social media and websites provide space for people to connect.

Highlighted Support Groups (More at The End of The Article)

Miles for Migraine – Community Support Groups, Teen Talks, Parent to Parent Support Groups

Migraine Meanderings – Facebook Support Group

Clusterbusters – Virtual Support Groups or One on One Support

Chronic Migraine Awareness Support Groups

Facial Pain Association – In-person and Virtual Support Groups

Many organizations also have scheduled annual or quarterly in-person and virtual events to help people connect. Imagine yourself walking into a room, conference, or event and finding many others who understand your pain because they live with the same disease as you. This level of connection is unlike any other. In support groups, such as a Facebook page or an in-person event, people often state “I thought I was the only one living with this pain and yet here is a large group of people who also experience this and understand me without words.”

Highlighted In-Person or Virtual Events (More at The End of The Article)

Shades for Migraine – Awareness Events

Miles for Migraine – Walk/Run/Relax Races and In-Person Events

Migraine Meanderings – Virtual Gathering: Real Talk, Chat and Snack

Alliance for Headache Disorders Advocacy – Headache on the Hill

Clusterbusters – Annual US and UK Conference

CHAMP – Retreat Migraine (On hold for 2024)

Importance of Volunteering

If your patient has experienced the connection of meeting others like themselves, maybe they should consider volunteering? When volunteering for an organization or event, a person gets an entirely different perspective. It is a front row seat to hearing the stories and the changed lives.

Almost every non-profit organization can use the help of volunteers and some organizations run solely on volunteers.

View the list of non-profit organizations at the bottom of the page and your patient can decide which organization is right for them.

Highlighted Volunteer Opportunities³ (More at The End of The Article)

Alliance for Headache Disorders Advocacy (AHDA) – Advocates for fair policies at the federal level for Americans affected by headache disorders and sharing personal storytelling helps lawmakers understand the impact of their decisions. Patients and healthcare providers can volunteer to advocate and share their stories. 

Shades for Migraine – Awareness Events: Help us coordinate an awareness event in your state or volunteer at an event

Migraine World Summit – Each fall, the Migraine World Summit looks for volunteers to help with multiple aspects of putting on and running their spring Summit.

Miles for Migraine – Help volunteer at a walk/run/relax event, education day or social event

US Pain Foundation – Submit an article idea to Remedy, their blog series.

How Can Others Help

Supporters and caregivers have an important role to play. They also need to connect with others in the same role. They can also help a person who experiences migraine or cluster headache, for example, to manage the smaller tasks such as signing up, getting to an event and navigating treatments and self-care.

Chronic Migraine Awareness – Caregivers Support Group

Join an Advocacy event – Shades for Migraine or Miles for Migraine Event

Learn More About Migraine – Assoc. Of Migraine Disorders

Ready To Network?

Joining the headache community will help your patients battle loneliness and isolation. Many of them will also gain a new “family” and many friends. There are many organizations that stand ready to connect patients, caregivers and supporters. We are sharing information on the US-based patient-oriented organizations that can help your patient with local and virtual support.

The organizations are listed by the type of headache disease in alphabetical order.

Cluster Headache

ClusterBusters – Virtual Support groups, In-Person Conferences (US and UK), Patient Education Events, One-on-one Peer Support program, Forums

The Cluster Headache Support Facebook Group (CHSG) 

Chronic Pain 

Psychophysiologic Disorders Association’s (PPDA) mission is to end the chronic pain epidemic and opioid crisis by advancing the awareness, diagnosis and treatment of neuroplastic symptoms including chronic pain and migraine

US Pain Foundation – Virtual support groups, pediatric pain warriors groups/events, patient education webinars, Invisible Project (highlights stories of people who experience various pain conditions)

Facial Pain Association – Patient education, virtual and in person support groups, Facebook support group

Migraine

American Migraine Foundation – Facebook Support Group, Advocacy training program

Association for Migraine Disorders – Provider and Patient Education resources, Shades for Migraine Awareness campaign

Chronic Migraine Awareness – Virtual support groups, Facebook groups, Caregiver groups

Danielle Byron Henry Migraine Foundation – Free classes: Resources for Migraine Management Courses for migraine patients, Yoga for Migraine, Migraine at School program

Migraine.com Articles on migraine, cluster headache and other headache diseases. Forums where patients can connect and ask questions.

Migraine Meanderings Facebook Support Groups, patient education events with doctors and patient advocates

Migraine Again – Website with articles for patients by patients, Facebook support group

Migraine Nation – Patient connections in the Denver Metro area

Migraine Strong – Provides Migraine Education, Connection and Hope

Migraine World Summit – Patient education 

Miles for Migraine – Virtual and in-person support groups, Run, Walk, or Relax in person and virtual events, patient education events, social events, Mindfulness virtual events, ACT Now advocacy training for patients and headache fellows

National Headache Foundation – Provider and patient resources, videos, Migraine at Work and Migraine University programs, CME and a free phone app for primary care providers. 

Parenting with Migraine – Facebook support group for parents who experience migraine disease

New Daily Persistent Headache

NDPH Aware: Patient education, awareness, resources

Spinal CSF Leak

Spinal CSF Leak Foundation – Patient education, awareness, resources

TMJ 

Temporomandibular Disorders (TMJ Association) – Patient advocacy organization fighting for the best science that will lead to a greater understanding of TMJ

Trigeminal Neuralgia

Trigeminal Neuralgia Support Group 

Vestibular Disorders

Vestibular Disorder Association (VeDA) – Provides support to anyone affected by vestibular (inner-ear and brain balance) disorders. 

Psychological web-based services 

Headache psychologist, Dr. Dawn C. Buse, PhD provides many headache & pain resources on her website

Pain psychologist Dr Melissa Geraghty, PsyD provides headache and pain resources on her website 

References 

  1. Alliance for Headache Advocacy (AHDA) (2023). https://allianceforheadacheadvocacy.org/
  2. Lui, J. Z., Young, N. P., Ebbert, J. O., Rosedahl, J. K., & Philpot, L. M. (2020). Loneliness and Migraine Self-Management: A Cross-Sectional Assessment. Journal of primary care & community health, 11, 2150132720924874. https://doi.org/10.1177/2150132720924874
  3. CHAMP Volunteer Opportunities

Author

Vera Gibb, DNP, APRN, FNP-C, AQH, CCTP is a family nurse practitioner and an Assistant Professor, Graduate Studies Department, School of Nursing of The University of Texas Medical Branch (UTMB) at Galveston. She holds additional certifications in headache medicine and clinical trauma. She graduated from the UTMB in April 2022 with her DNP. Her doctorate quality improvement project was focused on migraine preventive management in primary care. Her article titled “Managing Migraine in Primary Care: 5 Things to know” was published by Medscape as a part of Editorial Collaboration with The American Headache Society the same month. Vera Gibb serves on the Advisory Board of The First Contact – Headache in Primary Care Program of the American Headache Society and is a Co-Chair of its APP education Task Force. She also serves on the Board of Directors of Coalition for Headache and Migraine Patients (CHAMP) and an active member of The National Headache Foundation and ClusterBusters. Vera Gibb was a participant in 2021, 2022, and 2023 Headache on the Hill (HOH), annual advocacy event in Washington DC, organized by the Alliance for Headache Disorders Advocacy (AHDA).

Anna Williams is a patient advocate in the headache disease space. She experiences migraine, cluster headache, trigeminal neuralgia and SUNCT. She encourages patients to share their stories and helps connect them to resources. Writing from the patient perspective, she has articles published on Migraine.com. She serves on the board of directors of ClusterBusters and is a patient opinion leader for the Coalition of Headache and Migraine Patients (CHAMP). She also works with the Facial Pain Association, the Danielle Byron Henry Foundation, Chronic Disease Coalition and the Alliance for Headache Disorders Advocacy.

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