Adult Life after a Traumatic Brain Injury

@jenniferhunter I have struggled for 20 years after a TBI which left me with seizures. They were started after multiple blows to the head by my x partner. It is a difficult time after this terrible tragedy just like your father, things change & are never the same again. You are so good to be looking after your father. I was looking after my mother up until 2022 as she had been left in pain 24/7 after her gallbladder was removed. She had a stroke in 22 so had to go into a home as she ended up in a wheelchair & is now struggling with Dementia.

My emotional filters were stripped after my moderate TBI 31 years ago (took a few years to rewire my left temporal and basal frontal lobes). I withdrew from people because I was vulnerable. I wasn't in a relationship, but a few bullies and clueless people at work would joke about me being brain damaged, or called me "drame bamaged" and "brain dead". Each time I felt like I was gut punched. It stopped after a year when I told the bully I was going to contact HR. I was able to get caught up on work and finished my PhD during that year (so I wasn't much fun to be around anyway). Amazing what we can accomplish even when we are a few neurons short of a full deck.

FINALLY! People like myself!
Hello!
I have suffered a very serious TBI about 4 years ago (wow, has it really been that long!?) I was injured by a few men while living at my worst possible way of living. So I blame myself for being in that awful environment and blame myself for being so young on these streets thinking no one would hurt me! Fast forward to now it doesn’t matter why, how, or any of that…I still got this dang TBI tho…and had to return the the town where everyone remembered the old Emma, and she’s sadly gone from this injury. I finally tonight googled TBI and found this written by you guys. And as much bad stuff as I read…it placed this huge smile on my face. Because there’s no one that understands how I didn’t mean to but have some how changed completely into a different person only you guys seem to know anymore. I used to LOVEEEE 24/7 being around people, friends,anyone! Now I sit at home, mostly in my room alone. I suffer from anger that is just from no where and will scream at anyone “ STOP BREATHING SO LOUD!” Knowing damn well they can’t help it. And as for memory…that it’s almost most annoying because the doctors give me these memory tests that I pass but that’s not the type of memory I have problems with. If someone says do you remember so-and-so and I was just with that person yesterday…doesn’t matter..I still can’t tell you who that is because names don’t ring a bell in my head unless I say that name like every day a bunch of times type of interaction i mostly can’t tell you who that person is by the name you are giving me. That’s super annoying.
So here I am back at “ home” and that’s why I stay in my room..I was one of those loved people that everyone likes to be around and I don’t want to change that, which lets be real..it would…with my TBI, your TBI. WITH TBI! Only a very few people can deal with me anymore..and I know they don’t understand me, but they still love and deal with me so I’m crazy thankful. But to finally read entries written by people who are just like me, that has brought a genuine joy to me. A feeling that I don’t feel for myself too very often anymore so thank you!

@laura1961 Bless you for taking care of your mom. I know that is difficult and tiring. My dad did pass a few years back.

Are your seizures under control with medication? I have heard that there are new medications now that are more effective.

@laura1961 DV is a physical and emotional assault. I hope your epilepsy meds are ones with minimal side effects; meds have changed a lot just in the last 10 years. I was at around 90% at 10 years, and probably gained another few percent since with challenging my brain with crossword, suduko, and other puzzles and hobbies. I cheat at the games cuz I'm working my brain, not my game scores. I will always have word finding blips and some aphasia, but it is me now. People don't realize how hard TBIs are, and we don't always have a good support network. I beat myself up emotionally because I wasn't healing quick enough and kept forgetting things. It would have been useful if I had written down the parts of me that were still whole. I tried to find areas where I was underutilizing my mind, things that I took for granted and still had. I hope they can find meds to control your seizures, and that you have people that are there for you.

@kayabbott How did you rewire your brain? I have struggled with seizures for 20 years now after a TBI. My seizures have become Drop seizures the last few years & I would love to be able to rewire my brain. Not very nice what the people at your work said. I read something on this Mayo clinic site today that spoke about Cognitive Behavioral Therapy CBT that I will look into in Australia.

@kayabbott I have not had any meds since about 2012, as they were making my seizures worse or not helping at all. I have looked into a few new drugs, Epidiolex & the new version of Keppra I think it is Brivaracetam. I need to do some more research as I did not like the s/e from all the drugs I tried.

@kayabbott How did you rewire your brain? I have struggled with seizures for 20 years now after a TBI. My seizures have become Drop seizures the last few years & I would love to be able to rewire my brain. Not very nice what the people at your work said. I read something on this Mayo clinic site today that spoke about Cognitive Behavioral Therapy CBT that I will look into in Australia.

Wow... I have read through everyone's posts. TBI's are hard. I was diagnosed with a Severe TBI when I was in a motor vehicle accident when I was 16, which left me in a two-week coma. I struggled for many, many years. I was put on seizure meds when I was in college because an EEG showed I had seizure activity in my brain, but I chose to eventually go off them because I was a zombie. I have always had these twitches, but never lost control. I know they are not seizures. After my accident, I got into cross country. Running has saved my life because no matter what I went through, the pain, I would run more/ push through it. For some reason, running releases endorphins and hormones that make me feel good about myself.

I am here again today because a box fell on the back of my head at a leisurely, seasonal job that I took for the socialization aspect. It has been hard because when I, a TBI patient who had a concussion 30 years ago, was treated like a regular person. I had to advocate for myself because I was given the "wait and see" protocol. When I got in to see a General Neurologist, it was still the "wait and see" protocol. The Brain Rehab Physical Therapy I was in wasn't working, so all my sessions were canceled. I am having problems with fluctuations in my blood pressure. My baseline pre-2nd concussion was 100/70, and now resting BP is around 130/80, and when I exercise, it can get up to 150's/130's. Also, my twitches have turned into clearly visible involuntary jerks. I have an EEG scheduled in late April that I fear will show seizure activity in my brain. I do not want to be put on seizure meds when I have never had a problem with seizures. I have many other diagnoses

I understand the struggles TBI patients go through. I haven't experienced problems with seizures, and my heart goes out to all. If anyone can relate to anything I have written, it is nice to know I am not alone. Finding Mayo Connect was good for me, and I look forward to reading any updates. The support has been a good change because I currently dread Mato Appointments. I may need support going to future appointments, so I was thinking about asking my mom to go with me.