Adult Life after a Traumatic Brain Injury

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 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.

Lisa,
Thank you for sharing your story! I am often amazed at what a person can go through because of a brain injury. As an adult, I feel that, our symptoms are viewed differently or may not be seen for what they really are. I'm so glad that you stayed strong and got through some very dark times. Love and support from family can be so very helpful. Belief in a higher power also carries me on a daily basis. I spend a good portion of my day "talking" to God. I try to be thankful for what I have and to not spend too much time grieving for what I have lost. Some days that's easier than others. The last sentence of your post is so encouraging!

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!