Where to find online support
Healing from a concussion or post-concussion syndrome can be an isolating experience, both for the person with the injury and the people supporting them. There is a surprisingly robust source of support and information to be found on online support groups - we are most familiar with Reddit and Facebook groups. We've found that Facebook groups are more active than the Reddit forums, but we encourage you to find your community wherever you feel most comfortable.
In this article: Facebook groups and Reddit forums (scroll down).
Facebook Groups
Facebook support groups operate as "closed" groups, meaning that you apply to join the group, usually answering a couple of entry questions. An administrator approves your membership and monitors the group to prevent trolls and advertisers. We've found that there is both emotional support and a significant amount of information shared about a wide range of treatment options.
These groups address both concussions and post-concussion syndrome, but typically members are dealing with concussions symptoms that have lasted longer than one month, which is now defined as post-concussion syndrome.
Our new Facebook group
Concussion Alliance Support Group: 96 members
Facebook groups we follow
Post Concussion Support-real support for all Concussion Types, 1.7K members
UK Post Concussion Syndrome Support Group, 237 members
Post Concussion Syndrome Support Group, 7.7K group members
Post Concussion Syndrome Support Group For Families, 899 Families
Amy's TBI Tribe, 8.8K members
Female-focused Facebook groups - Pink Concussions
PinkConcussions.com support groups
PinkConcussions.com is a superb nonprofit that focuses on education and medical care for "women and girls challenged by brain injury including concussion incurred from sport, violence, accidents or military service." They have five support groups that are female-focused.
Pink Concussions Women over 25: For women over age 25 with a brain injury (mTBI, TBI, or concussion) or post-concussion syndrome, 2239 members.
Pink Concussions Young Women's Group: For women under age 25 with a brain injury (mTBI, TBI, or concussion) or post-concussion syndrome, 238 members.
Pink Concussions Caregivers Group: For caregivers and/or parents who are caring for a woman or a girl with a brain injury, 263 members.
Pink Concussions Military & Veteran Group: For women who are active military or veterans, 29 members.
Pink Concussions Professional Group: For professionals interested in Female Brain Injury including "medical professionals, athletic trainers, researchers, graduate students, first responders, etc," 215 members.
Reddit forums
Reddit bills itself as the “front page of the internet” and is the fifth most popular website in the United States. It is a collection of forums which are called subreddits. You can read the comments on the subreddits without being a member, or join in order to be able to post comments. We follow three subreddits concerning concussions:
Post-concussion syndrome subreddit
TBI subreddit (scroll down the subreddit page to see the comments.)
More recent blog posts
Researchers at UC San Francisco have done an extensive review of cases involving children with post-concussion syndrome (PCS). They have established what treatments are most applicable for different symptoms.