Adult Life after a Traumatic Brain Injury

@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.

@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.

@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

@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.

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.

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

@jaberg If you do need to go on seizure meds, current ones are not zombie drugs, and there are other options as well. If your BP is not stable, then it would also be good to get a cardiology workup as well. Knowledge is important, particular with the changes from your work injury. Hopefully you can keep up with the exercise, I know it helped me (I'm 72 now, and biking cuz of old knees and weights). Meditation has been useful as well, particularly when I can't turn my brain off (figuratively speaking). Let us know how it goes for you.

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.

@laura1961 - For context, I do not have a traumatic brain injury. I did, however, have cognitive behavioral therapy (CBT) years ago. I didn't purposefully go to a counselor who used that method, but the counselor my doctor sent me to happened to use that method often.

CBT was really helpful in getting me to identify my own recurring negative thought patterns. I would not have even realized I had these.

I ultimately ended up thinking, "No wonder I feel terrible! I'm telling myself such awful things about myself all day long!"

@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/