Post-concussion syndrome (PCS) & Healing

@whiteseld
I’m sorry to hear you are dealing with this condition. My young son (who is now a teen), had 2 concussions, one at 7 and the other at 8. The first was mild and the 2nd was moderate. He does have some residual effects from them (migraines, etc.) on top of his ADHD/anxiety.

Welcome to this group. This site is for others with similar experiences and conditions to share and support each other. There are not set meetings that are moderated.

Here is what AI suggests for your condition:

“Post-concussion syndrome (PCS) can be a challenging condition to manage, and finding the right support and treatment options is essential. Here are some treatment approaches and resources for support groups that may help:

### Treatment Options for Post-Concussion Syndrome

1. **Medical Management**:
- **Neurologists**: Specialists who can assess and manage symptoms related to concussions and PCS.
- **Physical Therapy**: Targeted exercises can help with balance, coordination, and vestibular issues.
- **Occupational Therapy**: Focuses on helping individuals return to daily activities and work.
- **Cognitive Behavioral Therapy (CBT)**: Can help address anxiety, depression, and cognitive difficulties associated with PCS.

2. **Symptom Management**:
- **Medications**: Depending on symptoms, doctors may prescribe medications for headaches, sleep disturbances, or mood issues.
- **Lifestyle Modifications**: Recommendations may include rest, gradual return to activities, and avoiding triggers that exacerbate symptoms.

3. **Rehabilitation Programs**: Some clinics offer specialized concussion rehabilitation programs that provide a multidisciplinary approach to treatment.

### Support Groups and Resources

1. **Brain Injury Association of America (BIAA)**: This organization provides resources, support groups, and information on brain injuries, including concussions and PCS. They have local chapters that may offer support groups.

2. **Local Support Groups**: Many communities have support groups for individuals with brain injuries. Check with local hospitals, rehabilitation centers, or community health organizations for information on available groups.

3. **Online Support Groups**:
- **Facebook Groups**: There are several private groups where individuals with PCS share experiences, coping strategies, and support.
- **Reddit**: Subreddits like r/concussion can provide a platform for sharing experiences and advice.

4. **Concussion Clinics**: Some specialized clinics focus on concussion management and may offer support groups or resources for individuals dealing with PCS.

5. **Mental Health Support**: Consider seeking support from mental health professionals who specialize in trauma or chronic illness, as they can provide coping strategies and emotional support.

### Conclusion

Managing post-concussion syndrome can be complex, but there are treatment options and support resources available. Connecting with healthcare professionals and support groups can provide valuable assistance and help you navigate the challenges associated with PCS. If you're looking for specific local resources, consider reaching out to healthcare providers or organizations dedicated to brain injury support.”

I'm wondering if anyone has experience with, or has learned about, a recurrence of PCS symptoms well after the initial injury and concussion and after what felt like a "full recovery."

I’m wondering about those with multiple concussions over a lifetime with a diagnosis of PCS whose effects are permanent.

PCS science and research are continuing, and more is being learned all the time.
Are you concerned about whether you may have it? Have you been evaluated by a neurologist?

I'm wondering about PCS myself. I had a retro sigmoid craniotomy 7 years ago- to remove an AN tumor. It left me with some balance issues, partial deafness, brain fog and fatigue. In April I fell and was diagnosed with a concussion. Now dealing with constant headaches- dull, usually top of head, intensified fatigue and very low moods etc... all, and more of which I understand is normal for brain concussion. I see an OT

As of late- I've notice an occasional stabbing pain in the left side of my head- which is the side of the brain surgery.
No one has suggested a neurologist. Am I over reacting to think seeing one would be a good idea? I'm not sure if I should go back to Mayo (where I had the surgery) or push for one in Mpls- where I live.
Feedback welcome and appreciated.

Our 16 year old daughter ran headlong into a metal support beam in the dark, full speed, three months ago. She hit it across the face , directly over her nose and mouth. She suffered a concussion, whiplash and passed out for a "moment", had severe tooth pain in many teeth for weeks ( thankfully tooth pain has totally subsided), had a lot of bruising inside the mouth and around her nose, thankfully no broken bones, experienced dizziness and nausea at first, and severe headaches. They did a CT scan at the ER. She came out clear with that, thank God. We took her also to the chiropractor, and many times since. Our chiropractor has now mentioned the term "Post Concussion Syndrome" to us, after 3 months post injury, referring her to a neurologist clinic, which we are waiting to hear from. Our daughter has slept a LOT over the past few months, especially the first many weeks. Her symptoms have subsided mostly, but she continues to have headaches, every day, since her injury. Not constant, but comes and goes. We don't even know what brings them on. She cannot run or jog or even go for a brisk walk without getting a headache from the jarring of her head. We've had a lot of prayer for her and we'll continue in that, praying she continues to heal. We never anticipated these headaches to continue this long. We hope our insurance will cover what she needs, although we have no idea what that means. This is totally new to us and unexpected with her recovery. Hoping for some answers, and soon. She remains tired as well. ❤️‍🩹

Hi, @maryjaneevelyn, and welcome to Mayo Clinic Connect. I moved your post here so you could talk to members such as @juliannm79 @whiteseld @sueinmn and others discussing post concussion syndrome:

- Post-concussion syndrome (PCS) & Healing https://connect.mayoclinic.org/discussion/new-to-group-7/?pg=1

I experienced a concussion from a fall on the ice a number of years back. I remember experiencing symptoms such as a brain that struggled to match items on the grocery store shelves with my shopping list and being very worried I might never return to normal. I did finally return to normal, and I've not had any related problems since that time.

When your daughter experiences the headaches you mentioned, does anything help relieve that pain?

@maryjaneevelyn - I had a TBI 3 years ago. What I learned in therapy is that if I start to feel dizzy, anxious or feel the beginning of a headache, it is time to stop what I'm doing and take a rest. For me, those were symptoms of over stimulation because my brain couldn't keep up with my activity whether physical, mental, sound, movement or otherwise. Difficult to tell your 16-year-old to stop what she's doing and use calming techniques, but it helps me greatly. I noticed that after starting to take more breaks, my headaches have decreased significantly. May be worth looking for a neuro-opthomologist in your area. They often work with people on the autism spectrum, post-stroke and PCS patients. Good luck as you continue to seek care. Your daughter is fortunate to have an articulate advocate on her side!

Sorry to hear about the situation. My wreck, coma, tbi was in 1997. I slept a lot and needed to be reminded of a lot. The headaches eventually went away after many years but the short term memory never returned. The headaches got worse and then I developed epilepsy. Mild at first, more severe now but not completely severe. The best thing for me was full strength aspirin, I didn’t want to get addicted to pain pills. The headaches come and go now, not nearly as severe as before but still comes. My accident was in 1997.

Thx all,
Dear @maryjaneevelyn you are a member of TBI. I am there and today is 13 years. I’m glad - to all - are alive this moment. I’m sorry for those have ended. I’m glad is members and helping all of you.

Some of us has”needs” (not problems). I am alive with my families/friends/brothers-sisters (ay my church)/members of this.

I’ve lost 80% of my brain uses: memory, professional needs, playing my musician needs, working like swimming, and on, BUT I a, alive & with a fantastic wife, Karen.

Thx,
Greg D. @greg1956