Community Guide

About the Cluster Headache Support Group

The Cluster Headache Support Group, Inc. is a 501(c)3 non-profit organization dedicated to improving the lives of those suffering with cluster headache and other trigeminal autonomic cephalgias and migraine through research, education, scientifically-backed Information, and compassionate support.

We provide practical, relevant information for the patient community and help patients learn to live with this debilitating disorder. We also drive scientific research in collaboration with physicians, pharmaceutical companies and other healthcare delivery services to find better treatment options that increase the pain-free time available to patients.
Our ultimate objective is to work with our strategic partners to find effective prevention strategies, and eventually a cure, for cluster headache and related disorders.

New Patient Guide
Oxygen Use Guide
Facebook Page
Facebook Group
Google Community

Censorship versus Moderation
Because of our firm stance against the discussion of either unproven or illegal treatments of CH, some have accused us of “censorship” and felt slighted because we would not “help” patients. CHSG was never intended to be a “free-for-all” forum. Unproven, alternative, and illegal treatments are outside the scope of our mission and values.

Every organization must have rules and guidelines by which it functions. This is not censorship. It is moderation and every successful discussion group does it. Please read our rules carefully before participating. Participation in our private group or public page constitutes an understanding of, and agreement to abide by, these rules. After a careful reading, if you have questions or concerns, feel free to contact one of our moderators for clarification.

We want our online resources to be a safe, supportive environment for everyone. That is why we ask that everyone agree to abide by our rules.

Acceptable Behavior
• BE NICE. Respect each other’s differences. Agree to disagree, politely.
• Share your experiences related to life with cluster headache, including medications, other treatments, interaction with doctors, relationships at home and work, coping strategies, etc.
• Offer words of encouragement and support to others.
• Ask for support, suggestions, ideas, and comments from others.
• Share humor (in good taste) and inspiration that helps you cope.
• Share information about new research, new treatments, etc.
• Ask questions about new treatments, research, etc.
• Like, comment, and share posts (public page).
• Like and comment on other members’ posts (public and private pages).
• Report unacceptable behavior to administrative team. We catch most of it quickly, but occasionally we miss something, so don’t hesitate to let us know if there is a problem.

Unacceptable Behavior
• Posting links to unrelated or offensive content.
• Posting, liking, or commenting as a PAGE. Only INDIVIDUALS may like, post, or comment on our public page. Any activity from a PAGE will be deleted.
• Solicitation, advertising, or promotion of any product or service without the prior written consent from our administrative team.
• Soliciting contributions for a charity, GoFundMe, or other private donations is strictly forbidden without prior written consent from our administrative team.
• Discussion of, reference to, or linking to pages promoting any illegal activity. Examples include: sharing of Rx medicines and treatments, use of LSD or psilocybin (i.e. “busting”), use of cannabis in states or countries where it is not legal, etc.
• Discussion of, reference to, or linking to pages promoting any unproven treatments. Examples include: MLM/direct marketing plans, daith piercings, herbal, homeopathic, magnets, energy, New Age/Spiritualist, and even dental or chiropractic treatments that have no scientific evidence to support their use for the treatment or prevention of cluster headache. If it doesn’t have solid, scientific research to support its use, then we do not allow it on our public page or private group.
• No politics, period.
• We are faith-friendly. All faiths and religions are welcome. Expressions of belief or faith are welcome. However, we will not tolerate hate speech, preaching, witnessing, or proselytizing. Likewise, ridiculing someone’s expression of faith is also unacceptable. It’s okay to offer to pray for someone or ask for prayers. It’s not okay to get nasty with someone because you don’t believe in prayer. Just live and let live.
• Bullying, harassing, threatening, stalking, etc. will not be tolerated. Do not contact members privately encouraging them to leave the group, ditch their doctor, etc. Of course, friendships will develop. Only contact members privately with mutual consent.
• This isn’t a dating site either.
• If you’re not a cluster headache patient or caregiver, please do not ask to join the private discussion group. Our private group is not a place for you to solicit our members for your own agenda.
• Members of our private group may not block or ban any of our moderators or administrators (see list below).
• Promotion of self-harm behaviors will not be tolerated. We take threats of self-harm or suicide very seriously. If you are having thoughts of self-harm or suicide, please reach out for help using one or more of our Emergency Support options listed below.

Consequences for violating our rules
• Removal of post
• Removal from private group
• Blocking from public page
• Private message explaining why your post was removed
• Private message explaining why you were removed or blocked
• Repeated or egregious violations will result in a permanent ban.
• If you have questions or believe the action taken was unjustified, you may appeal the action by submitting a message through our public page. Appeals are reviewed on a case-by-case basis.

Emergency Support Options

North American Team:
Tammy Rome, MA (Counseling)
Heather Spencer (Social Work)
Rachel Hawkins Crawford
Bobbie Bumgardner Dickens
Ann Matthews
Laura Saegert
Susan Reinhart Kolb

European Team:
Andi Green

Other Support Services:
United States:
National Suicide Prevention Lifeline
800-273-TALK (8255)

OUCH Helpline: 01646 651 979

OUCH Helpline: 13 11 14

Other helplines


Tammy Rome
Chris Hannah


Andi Green
Ann Matthews
Bobbie Bumgardner Dickens
Chloe Bailey
Eric Segaard
Jennifer Wrazen
Laura Saegert
Mike Zerbe
Rachel Hawkins Crawford
Sheryl Barnes
Susan Reinhart Kolb
Tracy Morgan Belanger

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