Traumatic Brain Injury: Come introduce yourself

Welcome to the Traumatic Brain Injury (TBI) group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who know first-hand about living with a traumatic brain injury. Together we can learn from each other and share stories about challenges and triumphs, setbacks and the things that help.

Pull up a chair and connect. Why not start by introducing yourself? What is your experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Traumatic Brain Injury (TBI) Support Group.

My Post Concussion Syndrome Working Model.

Article in Scientific American mentioned Israeli researchers that proposed albumin leakage into the brain as responsible for a large part of post-concussion syndrome, and for downstream problems like Alzheimer's. This model fits my experience as explained below:

1. Thinking accelerates brain fog onset. Thinking also increases blood flow in the brain locally and presumably according to this model would also accelerate brain fog through increased albumin leakage. This effect was more pronounced in the first years of recovery where spirited technical discussions at work could wear out my brain within an hour; it remains a pattern today, just reduced. Today, low mental activity like watching TV can actually clear my brain a bit as the normal clear-out army seems to be able to win out over leakage with low brain activity. Mediation has been effective in that it is a practice to "stop" thinking and also of course get into a low stress state which also leads to less brain activity.
2. The brain fog creates sleep pressure, that is alleviated with a nap. This is consistent with the theory because albumin leakage is a normal part of brain activity and of course our sleep cycles clear it out. Exercise can substitute for sleep by mechanically clearing out the glymphatic similar to sleep.
3. Not napping leads to a crash. When brain fogged, my blood pressure rises into the 140's. Presumably higher blood pressure accelerates albumin leakage further leading to a positve feedback loop and a headache "crash". VO2 max type exercise every other day also lowers my BP into the 120's which is likely the reason that it has somewhat of lasting effect beyond just clearing out crap in my brain like a nap.
3. I have been able to eliminate naps a few times by using BPC-157. I tried this because it tightens leaky gut, which may end up also tightening the BBB. It has a nausea side effect and needed to stop it while I recover from a toxic GI fungal infection that I got after the accident and made my brain significantly worse. It is a little unclear if the reason BPC-157 has alleviated symptoms is because it fixed gut inflammation or that it closed my BBB, but since it causes nausea, reduced gut inflammation probably isn't the cause, and at least in my body, it likely also signals to tighten my BBB.

Are there other drugs that close the BBB? Has anyone tried these for efficacy? I kind of suspect BPC-157 is produced in the gut naturally during exercise to activate joint rebuilding as things wear down during increased exercise, and it closes the gut and brain to protect against increased BP during physical exertion but have not seen any references for it. No doc I have met has had the background to properly discuss this kind of thing.

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I'm 9 years into what was called an mTBI after a red light runner T-boned me at 35mph while riding to work on a road bicycle, and I am in the unlucky group of people with persistent post-concussion syndrome symptoms. I have found several tools that help me:

1. Naps. I normally do one around lunch and on days I don't exercise, I'll do a 2nd one in the evening. This clears the crap out of my head and resets the brain fog. Naps feel like the natural thing to do and they work. Pushing through the day and not napping leads to headaches and a strung out feeling that if I'm prevented from napping can extend like a hangover into the next day.

2. Exercise. I mountain bike close to every other day, and when I do, I'll have short bursts of climbs where I'll lose my breath. About three of these during the ride is enough to clear out the brain like a nap. Presumably this is due to increased blood flow in the brain the activates the glymphatic system mechanically to clear things out. Late day exercise is best because it can also be a bit of a double-edged sword. I have done two rides in a day and not nap, but this is not really sustainable daily.

3. Supplements: Acytl-L Carnitine 250-500mg, Red Gensing 100mg, Niacinamide 40mg, Curcumin 250-500mg, Creatine, 1g. I use powders after my lunch nap to extend the 2nd window of brain clarity in the afternoon and to get going for later day exercise. These don't stop the accumulation of brain fog but open a window of productivity later in the day. The thing they have in common is that they are anti-inflammatory and mitochondrial energy stimulants. Stimulants alone like caffeine don't work and end up making things worse.

4. Managing Inflammation. Allergy season, colds, and gut issues make my brain worse. Managing these makes my brain better. I have been on a low Omega 6, higher Omega 3 diet for two years and this has helped reduce allergies in spring to where I no longer need medication because the medicines also ruin my brain. For Omega 3's I've focused on DHA and get close to 2g/day with half algal DHA, and the other half from fish. I get 250mg of C15:0 per day from supplements and cooking fats.

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Hey! I was involved in a head-on collision on August 15, 1987. I had to be ejected from a Datson 280 ZX with the jaws of life. I was a passenger in this vehicle and the idiot I was dating decided to go in the oncoming traffic to pass two vehicles that were talking, driving next to each other going southbound. This happened at 1:10am. I was in a coma for 9 days. I fractured my pelvis, broke a few ribs, punctured a lung, cracked a few teeth, I had the seat belt shoved into my butt on impact, needed skin grafting to repair hole. Also, a few other lacerations on my stomach becuz I was bleeding internally. On my right foot and right temple. It's been HELL!! I had 1yr of therapy. It included physio, speech, and cognitive. The Dr's told me I could never walk again. That didn't sit well with me. Yes, I struggled but pushed thru. Today, I walk, cook, drive, go to gym, all things normal people do. I struggle with remembering stuff tho. I have short term memory problem.
I have notes everywhere, lol.
I keep an agenda book. Some days are harder but I manage. I get by!
So, TBI isn't easy to deal with but if u can get past the limitations u are a true warrior!

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I can’t know whether I’m following the right steps to introduce myself - in my experience, “am I doing this right?” is a very typical experience for people with TBI.
Stumble ahead, aye?
So.
I’m a professional artist, a painter and sculptor with work in private collections around the world, and in public collections across Britain. (I’m no good at website stuff, so I don’t have a representative profile online.)

I’m also the near-fatal part of a brutal, near-fatal head-on collision between myself in a wee compact car, and 29 tonnes of fully-laden road-grit-spreading lorry (truck), on a bright December afternoon, on a blind bend on a single-track lane, just a mile and a half from our home high in the Lammermuir Hills in Scotland’s Southern Uplands.
For reasons associated with demand for beds in the ‘centre for medical excellence’ hospital in which my face was rebuilt (77 stitches in the first round of surgery just to stabilize my features), I was sent home unconscious after a few days.
One thing they can’t do while you’re unconscious is test your cognitive functions. Two and a half years passed, through which I struggled with recovery unaided. A month after my wife threw me out of our family home because I was “useless to her”, I was tested and diagnosed with Closed Head Trauma, Axonal Stretching and Tearing.
My life was pretty comprehensively overturned. My marriage was broken, my wife did her best to separate me from our infant son, and I found I couldn’t paint - the three parts of my life that I felt defined my identity, lost.

That was then. It’s been almost 22 years, my 22-year old son and I have a great loving friendship, and I’m now in a healthy, mostly sane and fulfilling relationship with a deeply caring woman, a medical professional with whom I share a passion for singing, and more. And I can paint the paintings that I want to see, sculpt the sculptures that fulfil me.
The brain damage continues to pose difficulties, misunderstandings, and stumbling blocks; I have limitations, but I don’t feel limited.
And as a Human Book in the Human Library, I have spoken face to face with a thousand Human Library ‘readers’, answering their questions about my slowly but continually unfolding relationship with my damaged brain - because we have to have the conversations about the terror and stigma associated in the public’s perceptions with brain injury (following my diagnosis, two ‘close’ friends both declared to me that I couldn’t have brain damage, I wasn’t sitting in the corner dribbling).

This will sit as a sketch of me.

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Lisa -- thank you for the reference to the caregiver support group. I will definitely check that out. Regarding The Body Keeps the Score, there's just so much of value in the book that I'm now telling people that every law student, every judge, every police officer, every medical student, every seminary student -- basically everybody who wants to work with people and ease their burdens -- should read it. Repeatedly. I have a shelf in my home where I put the most important books I've read in my life. This one sits on my desk.

My basic takeaways are these: (1) just how pervasive trauma is and how much it is needlessly inflicted in American society and culture; (2) that an understanding of the genesis of trauma and its effects is essential for anyone who is interested in the human experience; and (3) that we all need to be vastly more patient with one another.

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Profile picture for gablou17 @gablou17

@profdoyle -- Marcus, my wife suffered a TBI four and a half years ago and, with my help, regularly posts to this chat group. We just posted to MargaretAllen above. I don't know if Mayo has a chat group for caregivers. If it does, I'm hoping Colleen will direct us there. If it doesn't, it might be good to have one because for every person with a TBI, there is usually a loved one who is going through it with them. I've been a lawyer for 46 years, a civil rights lawyer for the last 25 years of that, and caregiving is the hardest, most taxing and draining thing I've ever done. It strips you down and shows you who you really are as a human being. Like you and your wife, we've really been through it, and the ignorance of the medical community where we live has just been shocking. It's easy to start feeling as if you're on your own.

I strongly recommend the book The 36-Hour Day. It's been a big help to me. I'm also reading to my wife The Body Keeps the Score, which is about the myriad ways in which trauma registers in our minds and bodies. It's been fascinating, informative, and oddly comforting. I'm happy to help, share with, and learn from you and all the other caregivers out there.

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Hi, @gablou17 - thank you for sharing about your wife's TBI and your experience as a caregiver for her. That is indeed telling that you say after being a lawyer for decades, caregiving is the hardest, most taxing and draining thing you've ever done.

You might want to check out this Caregivers support group on Mayo Clinic Connect https://connect.mayoclinic.org/group/caregivers/.

Will you share perhaps one thing you picked up from The Body Keeps the Score book you mentioned that has been informative or comforting to you?

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Profile picture for margaretallen @margaretallen

@gablou17 thank you so much for all the advice I find the morning is the worst and I think it could be hormonal by night time and feeling pretty good. I listen to meditation podcasts and I see a therapist. I am also learning to let people know I am lying down and not feel guilty about it

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@margaretallen ps. After 9 months of the surgery I get very tired still

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Profile picture for gablou17 @gablou17

@margaretallen -- Hang in there. You are not alone. Things I have and have tried that have helped: deep breathing, meditation, compression blankets, exercise. We have two cats that make us laugh and keep us sane. I've tried to identify all the stressors in my life that I don't need and don't have to put up with and eliminate them. Those I have to put up with and can't control I try not to think about. Music is hugely important. Put on music you like and try to play along on a piano or guitar, or beat out its rhythm on your knees, or dance with a partner or just with yourself. Sing. Paint. I know you won't want to, because I've been there, but if you take that first step it can accelerate and develop a momentum of its own.

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@gablou17 thank you so much for all the advice I find the morning is the worst and I think it could be hormonal by night time and feeling pretty good. I listen to meditation podcasts and I see a therapist. I am also learning to let people know I am lying down and not feel guilty about it

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Profile picture for nanacate @nanacate

Hi, this is Cate from Atlanta. 78 yrs old and still working as a freelance court reporter, although reduced schedule due to post-concussion syndrome. In Jan of 2025 I had a serious fall at Walmart when the tip of my shoe caught on a piece of buckled aluminum. Fall was so severe it knocked hearing aid out of left ear, knocked pierced earring out of left ear, broke Apple watchband, unable to rise from pavement without assistance for almost 30 min, and on and on. Subsequently had to have left hip replaced because of fall. After surgery had 5 or 6 significant falls to left side and head, with 3 ER visits and 3 concussions and diagnosis of postconcussion syndrome by my neurologist.
Fortunately, all head CTs and MRIs were normal. I did need cognitive therapy after the last fall in January of this yr, 2026.
In addition to the physical challenges from the falls to my knees and hip and wrists, I experienced severe mental confusion, extreme fatugue, mind fog etc. At the time of my 1st fall was grieving the recent death of my spouse of 47 yrs, which complicated my mental symptoms.
I asked the neurologist how she knew it was post-concussion and not grief I was experiencing, or age decline, she said because she knew me prior to the falls and could see my changes. I also failed several routine neuro tests, i.e., remember 3 words, etc.
The most difficult aspects have been the extreme, all consuming fatigue, irritability and and brain fog, as I know I present to friends as composed and present. But it is all smoke and mirrors!! I feel that people don't and can't really understand how I'm feeling.

I have returned to work as a freelance court reporter , but at a greatly reduced work load, as I can't sit for long periods of time and it is very fatiguing to focus.
After excellent cognitive therapy and physical therapy I am learning to give myself grace, rest when I feel the need and not blame myself, and to be very mindful of my surroundings. BUT it is getting very, very old and I want my former self back!! Thank you all!

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@nanacate
PS: I was fortunate that my falls did not result in serious headaches, other than the sutures to the back of my head and stitches to my chin.

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Hi, this is Cate from Atlanta. 78 yrs old and still working as a freelance court reporter, although reduced schedule due to post-concussion syndrome. In Jan of 2025 I had a serious fall at Walmart when the tip of my shoe caught on a piece of buckled aluminum. Fall was so severe it knocked hearing aid out of left ear, knocked pierced earring out of left ear, broke Apple watchband, unable to rise from pavement without assistance for almost 30 min, and on and on. Subsequently had to have left hip replaced because of fall. After surgery had 5 or 6 significant falls to left side and head, with 3 ER visits and 3 concussions and diagnosis of postconcussion syndrome by my neurologist.
Fortunately, all head CTs and MRIs were normal. I did need cognitive therapy after the last fall in January of this yr, 2026.
In addition to the physical challenges from the falls to my knees and hip and wrists, I experienced severe mental confusion, extreme fatugue, mind fog etc. At the time of my 1st fall was grieving the recent death of my spouse of 47 yrs, which complicated my mental symptoms.
I asked the neurologist how she knew it was post-concussion and not grief I was experiencing, or age decline, she said because she knew me prior to the falls and could see my changes. I also failed several routine neuro tests, i.e., remember 3 words, etc.
The most difficult aspects have been the extreme, all consuming fatigue, irritability and and brain fog, as I know I present to friends as composed and present. But it is all smoke and mirrors!! I feel that people don't and can't really understand how I'm feeling.

I have returned to work as a freelance court reporter , but at a greatly reduced work load, as I can't sit for long periods of time and it is very fatiguing to focus.
After excellent cognitive therapy and physical therapy I am learning to give myself grace, rest when I feel the need and not blame myself, and to be very mindful of my surroundings. BUT it is getting very, very old and I want my former self back!! Thank you all!

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