Adult Life after a Traumatic Brain Injury (TBI)

Posted by Dawn Pereda @dawnpereda, Sep 27, 2017

Hi, My name is Dawn and I am an RN. Just over two years ago I received a work related injury. This injury has left me with a traumatic brain injury (TBI). Even though two years have passed, I still suffer with lingering tbi symptoms. I have some issues with memory. Some things I remember with no problems, other things I just don't remember and I can't explain why... I also suffer with issues related to mood dis-regulation. I can be angry at times and not understand why or end up having explosive outbursts. This has greatly impacted my life. I still work but no longer with patients. Also, this has been a huge turn around for my family. I'm no longer the mom who has everything under control. I used to work full time, manage my kids' schedules, pay household bills, and keep my house clean. Now I struggle to remember to brush my hair before leaving for work. My husband pays the bills and my kids write their schedules on a large calendar (that hangs in our dining room) so I can visually be reminded where they are and what they are doing. I am a "new" me and I never would have imagined this journey for myself.

I know there are things out there for youth that suffer from concussion/tbi, but I don't always find a lot of discussion/support for adults, like myself. I get up every day and work to live my life to its fullest. If you would like to know more about my life and journey, you can listen to a podcast that I did with my family. Its called "Terrible, Thanks For Asking". We're season 1, episode 5. Its brutally honest. If any of this rings true to your life please join this discussion with me. Thanks for your time!

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

kayabbott | @kayabbott | Nov 7 7:41am

In reply to @cd8 "In the hip replacement surgery recovery room (August 27, 2015), when I woke up,(groggy from the..." + (show)

@cd8

In the hip replacement surgery recovery room (August 27, 2015), when I woke up,(groggy from the anesthesia) I was covered in sweat. My first night out of the hospital (in the "re-hab center), I woke up in TERROR at 3am, with severe PRESSURE in my head, dizziness, slight frontal headache, ringing in right ear [my nervous system was reacting to vibrations of the wall in my room from an oxygen concentrator up against the wall in the adjacent room=first symptoms of CENTRAL SENSITIZATION SYNDROME--hypersensitivity to most all sensory stimuli: sound, light, smell, temperature, motion/ vibration, touch/pain etc. As days progressed, I had neck pain/upper left jaw pain, difficulty concentrating. unable to focus on a task, (BRAINFOG) excessive sweating episodes, waking up in the middle of the night with "linked" severe pain in HEAD and "new hip", (not knowing what was triggering what). I had vision problems/blurred vision, had several falls, difficulty swallowing/choking, difficulty with abstract thinking (unable to continue with my garment design & implementation endeavors), unable to get restorative sleep, PTSD episodes---- most all this continues 9 years post-op!! With the post-op rehab process, I was so hypersensitive, physical therapy was NOT effective/too much hip pain. [Surgery team discounted my symptoms/refused MRI/refused to schedule my 12 month appt at 12 months post-op, & abruptly departed in February 2017/denying my symptoms] 2nd opinion orthopedic MD diagnosed "severely eroded gluteal tendon at the attachment point in March 2017 (but too much pain to proceed with PRP). 2nd opinion hip surgeon commented " trauma to the SPINE". TBI neurotherapist Phd [author of book: Understanding Mild traumatic brain injury] diagnosed MILD TRAUMATIC BRAIN INJURY April 2018, but retired shortly thereafter & not replaced. Neurologist diagnosed post-traumatic cervicogenic headache, basilar migraine in Feb 2018. Chronic centralized pain diagnosed Nov 2019. Behavioral optometrist diagnosed "Post-trauma vision syndrome" in Nov 2021. ENT MD diagnosed hyperacusis in April 2022 . [new PCP in Nov 2018, verified (in April 2023 "most all symptoms lead to "AUTONOMIC DYSFUNCTION/DYSAUTONOMIA"); 2d opinion neurologist diagnosed "Functional Disease of Central Nervous system", & PPPD (motion hypersensitivity) May 2023.

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Some of your symptoms do sound a bit like hyperesthesia . After my TBI 31 years ago I was very sensitive to noise (less now) and some odors (perfume); brain trauma can damage the filters we use to shut out irrigating noises and such (including hubby slurping soup....AAAHHH). Here are some links in case any are useful: https://pubmed.ncbi.nlm.nih.gov/1564487/ https://www.ncbi.nlm.nih.gov/books/NBK563125/ https://www.webmd.com/brain/what-is-hyperesthesia

lanieg | @lanieg | Nov 8 6:41am

I've had 4 concussions since 2014. The mood "changes bothered me the most bc my spouse was the affected one. Over the years they have lessened in frequency and intensity. What we did during the hardest time was to agree that I would go to a quiet place where I could just be. That would reorient me and I could join my family again. That might be harder with children, I know. But explain it to them and it might calm things down.
Blessings to you and your family.

Lisa Lucier, Moderator | @lisalucier | Nov 25 5:28pm

In reply to @lanieg "I've had 4 concussions since 2014. The mood "changes bothered me the most bc my spouse..." + (show)

Hi, @lanieg - I'm guessing that others who've experienced a traumatic brain injury to various severities can relate to you with going through mood changes. What types of mood changes did you experience after your 4 concussions? How did you feel these mood changes affected your spouse?

lanieg | @lanieg | Nov 27 10:51am

In reply to @lisalucier "Hi, @lanieg - I'm guessing that others who've experienced a traumatic brain injury to various severities..." + (show)

I was quick to anger at any little trigger. For example, if she questioned why I had done something I would yell or cry for no apparent reason. I felt like I was falling apart. No control over my reactions. I know they affected my spouse in that she was afraid to talk to me, she was fearful of my reaction to he and she was afraid I didn't love her anymore. It almost destroyed us.

kayabbott | @kayabbott | Nov 28 7:53am

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.

Lisa Lucier, Moderator | @lisalucier | Dec 3 10:25am

In reply to @kayabbott "My emotional filters were stripped after my moderate TBI 31 years ago (took a few years..." + (show)

Hi, @kayabbott - I'm sorry to hear people at work were calling you "drame bamaged" and "brain dead" 31 years ago or so after your moderate TBI. It's understandable you felt gut-punched each time this occurred. Kudos to you for telling a person who was saying things like this to you that you were going to contact HR.

I recall you said your TBI recovery took 8-10 years. Do you feel like your emotional filters are back now? If so, how long did it take for this to happen? Do you have any other suggestions for relating to others when you feel like your emotional filters are stripped after a TBI?

kayabbott | @kayabbott | Dec 3 3:08pm

Regarding stripped emotional filters, give yourself time and space to recover. If the world is crowding in on you then find escapes into books, TV, music, exercise, or wherever you feel safe. If someone is confrontational (a low bar with TBIs) then back off rather than engaging. Find people or TBI counselors that you can talk with about what you are going through.

My filters are all in place. The emotional filters took 1.5 years, and corresponded to completing my dissertation and graduating with a PhD. I realized that I was beating up on myself for not doing well enough, and it didn't hit me (so to speak) that I accomplished a lot under difficult conditions. To recover from TBIs takes a lot of mental, physical, and emotional work and one doesn't always see how hard it is until it is in the rearview mirror.
The only lasting damage from my TBI was minor balance (damage to left inner ear), possibly slightly suppressed smell and taste (olfactory bulbs), and some aphasia: finding and remembering words and numbers. Considering that I wrote papers as a research scientist, it isn't bad enough to limit me. The longest recovery was driving and tasting beef, getting back to 100% on driving took about 8 years because I could see the subtle differences between before and after. Driving is surprisingly complicated, juggling a lot of info and stimuli at the same time.

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