Adult Life after a Traumatic Brain Injury

Hi....luckily after suffering for a year and a half, taking my BP three times a day and keeping a record of each reading, my cardiologist would just have his PA send a message saying "Take another Clonidine". I was up to a mixture of 9 BP pills a day and my BP was still well over 200. Of course I worried mainly about having a stroke, but I was getting nowhere. Up until my accident my BP was in the 130's of which I also kept a record every day, they said I had stage 3 kidney disease so they were trying to get the readings even lower. So I knew exactly when it would top 200 that it was from the TBI. I went one day with my husband to see his cardiologist, funny thing, he is in the same office as my doctor who was just pushing the Clonidine. I mentioned to his nurse my issues and she said the other doctor was a high BP specialist. He took over my care. Put me on 3 pills a day (down from 9) and in less then a week my numbers came right down. I still suffer daily from head pain behind my left ear. I was diagnosed from the TBI with my eyes being out of sync with each other, who knew that was a thing. I also have something called "Abnormal Auditory Perception". I misunderstand when people speak to me. Something called "Convergence Insufficiency" and "Abnormal Optokintic Response." And they had more test to be done. They want $27,000. to treat me. I'm 75....I'll pass on that. My Neurologist confirmed that I do not have memory loss from old age, dementia or Alzheimers. It's all from the TBI. So I just let people think I'm a nutty old lady, I do not look 75....so most people when I speak think I'm just plain nuts!

Your reply was just as encouraging to me. Thank you. You have given me some idea on how to deal with my brain results since falls and accidents.
Take care and God Bless to all out there reading!

I too fell in a skiing accident in 2007. All of the attention was paid to my fractured back and none ever to my head even though I had become such a different woman. My husband and children noticed that I was different but attributed it to my pain. I needed to have them see that it was more than that, that I needed help and needed it badly. After having made so many unusual for me mistakes, definite personality changes like responding in ways I never would have if I were normal, inability to follow a recipe, leaving water running and flooding out a room, repeating myself when telling stories, being late for everything, always late, after all of this and finally even a serious suicide attempt the help I need has not come. No one has a place for me to get help. I have suffered the embarrassment of the suicide attempt and being punished by doctors for having done such a bad thing. They didn’t know what was the matter. It’s amazing to me that people don’t automatically recognize TBI’s. It’s a chronic problem but one that no one talk about. I now watch football players getting tackled and I cringe. Why don’t they know that these men are hurting themselves?
Well, over the past month I have fallen twice, planted my face first on the ground both times. My brain hurts, sounds hurt, light hurts, I’m exhausted. I broke by arm and my tooth went through my lip and chin.
No one has checked for a brain injury. I don’t even know how they do that but I know that my brain has been injured two more times and that it still hurts just like my arm.
What can I do?

Hi @loismay, I experienced a TBI over 3 years ago. I experienced extreme exhaustion, sleeping 20 hrs a day for the first several months. I lost my ability to connect my thoughts in a coherent way, let alone get the actual words from my brain and out of my mouth! In addition, I suffered with severe balance issues, memory loss, extreme sensitivity to light, visual disturbances, double vision, inability to read or retain information, nausea, headaches and more. I found it beyond exceptionally difficult to find care in NM. It was well over a year before I could get a neurology appointment! UNM neuro-opthomology was very helpful, it took 9 months to get an appointment there. InVision in ABQ was excellent!! When I saw Michelle Cohen, I FINALLY found a provider who completely understood my post-concussive symptoms, condition and how to address them. I cried, I was so relieved to find a healthcare provider who didn't dismiss me. She had a fountain of resources to share and I cannot say enough about her and her staff of providers. I lived in Santa Fe and a family member had to drive me to my appointments in ABQ as I couldn't handle driving more than a short distance for well over two years. I also had a fantastic cognitive rehab therapist at St. Vincents in SF. Additionally, I did vestibular therapy with Sarah Cohen in SF.
It has been three and a half years and I'm still not fully back to myself. My healthcare providers helped me understand that 1) I am not crazy, 2) I am not alone in this, 3) My brain is a very fragile egg, it could take 10 years to 'unscramble' it, 4) that I need to be compassionate with myself because the people around me do not fully understand what I am going through. I was too exhausted to explain to my loved ones what was going on, I had difficulty getting my words out, I frequently became confused or emotionally overwhelmed and I felt horrible all of the time.
The good news is that I can speak fluently now, my visual symptoms have subsided remarkably (I still do exercises and wear specialized glasses), I function in social situations, and my life has returned largely to 'normal' - it's just not my pre-normal. There are many small things that are still with me- I'm still sensitive to blinking lights but my light-related issues are fading, my cognition is not as good but it continues to improve, my balance is not what it was but I can take a walk now without bumping into walls or going sideways, I can read for pleasure now!
All I can say to anyone is to hang in there! The brain is incredibly elastic and takes a long time to heal. My life was very dark- for a long time. However, three and a half years later it is continuing to improve. Slooooowly but surely I am getting back to myself and you will too - it may be a new 'normal' but don't discount how much time it may take.
I am so grateful to have found this group. More evidence that I'm not alone in my recovery!

Hi Kay,
You are a superstar! I hope you don’t think aphasia is ok just because you don’t need to use big words anyway. Felling “Normal” is relative to your normal, no one elses, and you deserve to reach for it on most days! Thank you for sharing your story in years. So many facts do not include “years” of recovery.
I have been recovering, and you’re right that it’s hard to see progress until it’s hindsight. But those moments are great when they happen!

Hi Sue,
I realize this post was made some time ago, but a BP of 200 is not ok, especially with an aneurysm. First I will think to see if the BP machine is one you can trust, like a new model, batteries ok, etc. Then to see if it has specific directions (like hold arm at heart level) etc. If that’s correct, then some things can cause potential misreads, like shaking or tremors, talking during the measurement, and having an irregular heart rate like atrial fibrillation. Since machines are not perfect. I would suggest a cardiologist consult. There are a few things here that can be ruled out to give you peace of mind, or that may be co-existing with the TBI. Please consider a cardiac workup today, and if your well working meter reads BP 200, I would call 911 as this requires timely expert intervention.

9 years was my response to another members post and the 6 month was since my forceful fall on hard cement, first point of contact was the middle back of head. I cannot find any place near so. NM wherethey will treat PPCS oe TBI and I pray I will find a place.

Hi, @loismay. I see you've joined Mayo Clinic Connect rather recently, so I wanted to welcome you. I am glad to hear this site helps you realize you are not alone.

Pardon me if I misunderstood in any way, but I wanted to clarify whether you have had the TBI for 6 months or 9 years?

Either way, what has helped you keep up hope with TBI?

I have only been suffering for 6 months, 9 years of suffering symptoms is beyond belief. Why is there so little awareness of TBI or PCS and its debillatating, life altering changes.

At least finding this site helps me realize I am not alone asking "Where did I go?" "Who am I today?"

We need help with adjusting. Hope has to exist.

Hi Dawn. Thank you for creating this outlet. To you and everyone who has posted, I offer my sympathy for the loss of your former self. Nine years ago, I suffered a high-speed head-on by a driver not looking where he was going. Concussion and multiple spinal injuries. I lost most of my words and after 6 months with a dictionary on my lap, got most of them back. (I start losing them again if I don't do crosswords daily.) I continue to suffer from every single symptom in the "Persistent Post-Concussion Syndrome" listing. I am better than I was the first couple of years after the accident, But so far away from where I used to be. Executive function is so lacking I used to sit by my dresser and cry because I couldn't figure out how to pick an outfit and get dressed. (I learned to wear a "uniform.") Ocular migraines are so bad I bump into people and trip on pets. My best advice is to never stop doing battle for yourself. Advocacy for TBI patients just isn't there, so if you don't have a loved one who is willing to fight with you, hire a psychologist to get to know your case and help you. Strangely, my best help has come from you-tubers, mainly with autism, who share what helps them with their sensory, communication, cognitive and energy issues. (search "autism accommodations" or "autism life hacks") For those of you with severe medical issues ongoing (BP, unbearable headaches, etc) I say shame on your primary care providers for not fighting to help you. Get your medical record copies and write a timeline of symptoms beginning with your injury, and the next time you are in a crisis take it all to the ER and demand help and answers. Keep going until you find improvement. Finally, the therapy you had at the beginning needs to be ongoing -- use it or lose it. Keep doing your physical therapy exercises, practice radical self-care and protect yourself from the stimuli and unhelpful persons that harm you. I will be praying for you all.
(Currently suffering severe burnout and exhaustion from trying to do half of what I used to ...I hold out hope it will improve soon)