Adult Life after a Traumatic Brain Injury

do you have any other weird symptoms besides the head pain?. It damaged my left eye and hearing. Left me with a dent on my forehead. And now I'm sweating under my arms and have to use special deodorant that stings like crazy. I also started sneezing but exaggerated sneezing, sometimes a dozen times in a row. driving my husband nuts. My doctor is going to explain this to him next week. So many of your involuntary motions come from nerves located at your brain stem. So now I have to worry that the lesion is getting bigger pressing on those nerves. In the meantime trying to get reimbursed for my medical bills from the people that caused this is adding more stress. They seem to think that even though they admit they are at fault, I'm getting the blame for not realizing the walkway was a hazard...You just can't win!! Keep in touch if they find something for your head pain. Im tired of getting no sleep....

Time for another MRI and get some answers from your neurologist !

You have to be your best advocate and tell the doctor you need another MRI done or else need to see a different neurologist when nerve pain like numbness in extremities begins to happen it is never good and run the risk of not reversing it !! Time to get a MRI done stat !

yes I really should not wait until December but the waits to get tests done in Georgia are months out. When my BP was in the 200's after my accident the concussion clinic couldn't treat me and said to see a BP specialist at Emory University. They sent the referral to her but the earliest appointment was almost one year out. You would think they could have called her and said this lady needs to be seen sooner than a year from now. It's nuts. At this point I'm just disgusted with it all...

Thanks! I had a traumatic brain injury as an infant and am just now researching the possible connection to health issues I’ve had and that I have now. Its quite overwhelming to learn that even chronic stress, ADHD-like symptoms and gut issues may be connected to my brain injury! Thank you for sharing your experience! Gillian

@gillianu - welcome to Mayo Clinic Connect. I'm so sorry to hear about a traumatic brain injury you had as an infant. It sounds wise that you are now researching any possible connection between this and health issues you've had.

Wondering if you'd share more about what occurred with the traumatic brain injury as an infant, if it's something you are comfortable sharing? Also curious what your primary care provider or a neurologist may have said about any connection between the injury as a baby and subsequent health issues you've had?

Hi @sadivari - wondering how your sleeping is going? Also, was your doctor able to explain the exaggerated sneezing to your husband so that he understood what was going on?

Hi Dawn. I had an mTBI 45 years ago in college, 1979. Fell straight back, slamming my head on a concrete floor. I was dazed but not unconscious. From that night on, I appeared to be OK, but my cognitive state was seriously disturbed. Anxiety level was unbelievable, an analogy would be like stopping a long-term, high dose benzodiazepine cold turkey. I was scared to death. If I walked into a crowded building, I had to run for the exit and sit alone for awhile. I dropped out of school for a year, and spent 6 months in a psychiatric hospital. No problems on many brain scans led to their final conclusion that the issue was emotional, i.e. mental illness. Well, I know I wasn't mentally ill before the TBI, so I accepted the fact that whatever damage was done was beyond the detection capability of doctors. Psychologists told me that I was most likely mentally ill before the TBI but the trauma brought it to the surface. Again, a professional diagnosis based on them not having a clue.
For over 25 years I saw multiple psychiatrists.
I was told by every one of them that it was probably depression, and the sudden outbursts of anger was a sign of bipolar disorder, and it would resolve with taking an SSRI and Lamictal.
I had many meds over that time. One psychiatrist was knowledgeable of TBI effects, and said the timing of the effects told him that there was most likely physical damage, but on a cellular level, involving the disturbance of certain synapses, receptors, and axonal injury that no scan would identify. He talked about how even tiny disturbances in the wrong spot can mess us up significantly, while major damage in other areas may not cause any significant effects. He said "Neuroplasticity" of the brain was amazing, and rerouting of disturbed neural network will eventually reduce or perhaps eliminate my cognitive issues, but made it clear that some effects could be permanent, and that I should focus on finding medications that suppress my symptoms to the point where I could live as normal and comfortable a life as possible. I found those medications, finished school, had a family, but used alcohol as a crutch to further reduce the constant anxiety. I found I could perform normally, but I had to secretly study unusually more hours and spend an inordinate amount of time preparing for anything that required quick thinking. I am now 66, retired (and exhausted). Nobody I ever lived with (including my family and current wife of 20 years) believes that I use the (TBI excuse) to justify laziness and lack of motivation. I've learned to not discuss it with anybody and just suffer in silence. After all, nobody could ever imagine what I'm going through. They base their opinions on visual observations.
I started this mayo clinic site today to explore if medicine has come up with any other treatments over the years that I'm not aware of.
Take care, Dawn, and know you are not alone. I live in Deland, Florida, and would be grateful if you could stear me to any support groups in my area.
P.S. I've heard there is a way to get a formal diagnosis from a biopsychologist. With that, I may be eligible for other benefits. I realize anyone who appears normal can claim they have TBI symptoms in order to claim disability, so proof always seemed impossible. Especially since I fought like hell to graduate from college.

Friends and survivors -- I am posting this on behalf of my wife. We just found this chat room this morning and it has already been very helpful.

My wife had suffered concussions in the course of years of horseback riding. She had severe reactions to both her Pfizer Covid shots in the spring of 2021, then suffered a TBI when a guy crossed the yellow line and hit her a year later, in the spring of 2022. She had to retire from the practice of law, no longer drives, and is unable to navigate the constant distractions and complications of using digital devices like laptops and cellphones. Immediately following her accident, she was extremely sensitive to light and loud sounds, which has improved. She wore prismatic glasses for a time but no longer needs them. She struggled to read but that is improving as well. Her primary problems now are aphasia, a lack of volition, and anxiety. As a formerly high-performing professional, she struggles to accept her new "you," but she's determined to get better and we're relentless in our pursuit of that goal.

The ignorance of the medical profession concerning the issues adults experience with TBI or post-concussive syndrome is appalling. For two years, my wife labored under a diagnosis of Alzheimer's despite the absence of key symptomology until a DNA test and the new Alzheimer's blood test proved she didn't have it. Sadly, our experience is that if a woman in her late 60s complains of confusion and memory issues, the first assumption is Alzheimer's which creates a confirmation bias among treaters that is hard to overcome. All of my wife's progress is the result of our own independent research and pushing for answers. The Mayo Clinic is obviously years ahead of everyone else and it's terrific that they've provided us this forum for expression and connection.

I want to thank everyone who has posted on this site. You're are all heroes, and know that because of you my wife and I are having a better day. I hope our post helps, too. The more we talk about this the better. This needs vastly more attention from the medical profession than it gets. In the meantime, never forget:

1. You are not alone.
2. Speak up for yourself.
3. This is a long slog; hang in there and keep pushing.

We're all rooting for us, and more are joining us every day.

@gablou17
welcome to the group, or groups you've been steered toward. What an awesome amount of talent and place to ask your questions. i am a survivor of TBI also mine was like yours numerous injuries over time and finally the day i was hospitalized with a brain tumor of large proportion and cancerous, alongside lung cancer. operated in the brain twice, last time was a brain bleed. but like your family a fighter i am. i fight to stay alive for my daughter and her family, i may have some answers to questions so feel free to ask them. In march of 24 was my time to have this all found. now cancer free and every test coming back with good numbers, hardest thing for me and still is, that awful anxiety and depression but the brain heals such to be blessed with. the time to rewire seems like forever, I've just learned some things that help. have a blessed day, you are not alone by any means. feel free to message me.