1. < Traumatic Brain Injury (TBI)
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Adult Life after a Traumatic Brain Injury

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.

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morkat | @morkat | Apr 1 7:28am

I can empathize with you, so sorry about your TBI. I suffered brain damage after being put in medical coma, they were afraid I would lose my airway. I was 62 at the time and worked as Director of Grants for a college. I was in very bad shape afterwards and the brain damage wasn't found until about 2 weeks after discharge. My whole job revolved around reading and writing. When I looked at the PC screen all the words melted down the page; I never went back to work, never even cleaned my office out. I found the Sepsis Alliance great, many survivors have brain damage. Also, The Brain Injury Association is a national organization that takes in both acquired and traumatic brain injury. I don't know what state you are in but put BIA in your browser, it should take you right the info. They are nice people who understand your condition, you are dealing with people who know all the latest treatments and resources that can help you. I did regain the ability to read, but not to my former level. Good luck, if there is a support group in your area I suggest you try it. It did wonders for me.

i never went back

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jaberg | @jaberg | Apr 5 9:01am

Thank you for your response. My EEG was canceled. My team has not rescheduled it, so I am not sure what is going on. I have a Thermoregulatory Sweat Test on April 9th. It is crazy, but right now, exercise makes my Blood Pressure and Heart Rate skyrocket. Being a runner, this is hard to live with. I hope my team can help me control my Heart Rate and Blood Pressure so I can exercise again. Happy Easter, and enjoy the biking as the weather gets nicer.

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laura | @laura1961 | 5 days ago
In reply to @kayabbott "@laura1961 I'm on low dose generic Keppra and don't have side effects or any of the..." + (show)
Profile picture for kayabbott @kayabbott

@laura1961 I'm on low dose generic Keppra and don't have side effects or any of the issues I had with older drugs such as phenytoin (dilantin) that are metabolized through the liver. Keppra is metabolized through the kidneys, so best if one has healthy kidneys. There are new treatments that don't involve drugs, and clinical trials that your neurologist should be familiar with. Here are some links, in case any are useful to you: https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/seeking-new-treatment-for-generalized-epilepsy/mac-20592034 https://my.clevelandclinic.org/health/diseases/atonic-seizure https://www.epilepsy.org.au/research/participate-in-research/

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@kayabbott Thank you for that information - I have Drop seizures but have not had time to look into these new meds yet. One was a link to an Epilepsy site here in Australia. Hope you are doing well.

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laura | @laura1961 | 5 days ago
In reply to @morkat "I can empathize with you, so sorry about your TBI. I suffered brain damage after being..." + (show)
Profile picture for morkat @morkat

I can empathize with you, so sorry about your TBI. I suffered brain damage after being put in medical coma, they were afraid I would lose my airway. I was 62 at the time and worked as Director of Grants for a college. I was in very bad shape afterwards and the brain damage wasn't found until about 2 weeks after discharge. My whole job revolved around reading and writing. When I looked at the PC screen all the words melted down the page; I never went back to work, never even cleaned my office out. I found the Sepsis Alliance great, many survivors have brain damage. Also, The Brain Injury Association is a national organization that takes in both acquired and traumatic brain injury. I don't know what state you are in but put BIA in your browser, it should take you right the info. They are nice people who understand your condition, you are dealing with people who know all the latest treatments and resources that can help you. I did regain the ability to read, but not to my former level. Good luck, if there is a support group in your area I suggest you try it. It did wonders for me.

i never went back

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@morkat Thank you for sharing that info. I struggle with seizures caused from a TBI after being bashed about the head by my partner at the time 20yrs ago that destroyed my life. I was put on meds for Epilepsy that made the seizures worse. They went from 2 a year to around 20 plus a year (22-24). I stopped the meds in 2012 but am always looking for something or somewhere to find new info. Sorry to hear about having to stop everything - no fun at all

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kayabbott | @kayabbott | 5 days ago
In reply to @laura1961 "@kayabbott Thank you for that information - I have Drop seizures but have not had time..." + (show)
Profile picture for laura @laura1961

@kayabbott Thank you for that information - I have Drop seizures but have not had time to look into these new meds yet. One was a link to an Epilepsy site here in Australia. Hope you are doing well.

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@laura1961 I hope you find a treatment that works. Mine is well controlled on a 1/4 dose of generic Keppra; I've had two seizures in 50 years (one 45 years ago after year off meds, the other after going on a generic 25 years ago when they were less regulated). Consider checking with a neurologist at a research hospital, research and meds have evolved since 2012, and there are also clinical trials.

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laura | @laura1961 | 5 days ago
In reply to @kayabbott "@laura1961 I hope you find a treatment that works. Mine is well controlled on a 1/4..." + (show)
Profile picture for kayabbott @kayabbott

@laura1961 I hope you find a treatment that works. Mine is well controlled on a 1/4 dose of generic Keppra; I've had two seizures in 50 years (one 45 years ago after year off meds, the other after going on a generic 25 years ago when they were less regulated). Consider checking with a neurologist at a research hospital, research and meds have evolved since 2012, and there are also clinical trials.

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@kayabbott I was trying to get into an Epileptologist I had seen about 2yr ago a month ago, he is going away for 1yr. When I get a chance I am going to look another. Thank you for your reply so glad your seizures are controlled. I have been on Keppra but ended up at the hospital because of s/e. They have been wanting me to try it again the last 2 years. I looked up the s/e & it said it can bring on a seizure. I asked my GP who also agreed so i didn't try it again. There is another newer drug that i thought was the new version of Keppra, Briviact I had a bit of a look at.

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