Brain Injury Support Group
Traumatic brain injury occurs when a sudden trauma causes brain damage. TBI can result from a closed head injury or a penetrating head injury. Symptoms of a TBI can be mild, moderate, or severe, depending on the extent of the damage to the brain. Outcome can be anything from complete recovery to permanent disability or death. A coma can also affect a child's brain.
Good Morning,
I suffered my second concussion and TBI this February and am having some adverse and lasting symptoms. These include depression, anxiety, racing thoughts, headaches, interrupted sleep, vivid dreams, sleep halucinations (mostly gone now), short term memory loss and major difficulties fulfilling my professional responsiblities. I also have extreeme attention and focus issues and am easily distracted and have difficulty completing tasks.
Due to the symptoms I was having (only) at or as a result of work, I have taken a medical leave of absence. These symptoms were, in addition to the above, diffculty reading, making major and frequent errors in my writing, which I never do, dizziness, light headedness, migraine headaches, seeing spots/tunnel vision, difficulty focusing (especially during meetings) and after pushing myself I'd feel extremely fatigued and begin to stumble in my speech and have greater difficulties in general cognitive functioning like processing information, answering questions, etc.
I have seen a nuerologist with the rehabilition medicine center at a local hospital. He has reffered me to a neuor psychologist but I am on a wait list and they may not be able to see me for 6-8 weeks or more. I am taking an anti-depressant and am about to begin taking an anti-anxiety medication. I do yoga, started seeing a therapist weekly, eat healthy and stopped drinking entirely so my brain could heal.
The doctor authorized me to be on leave from April 30th until June 30th, meaning I'd be out until the end of the school year. I'm an Assistant Principal and feel an extreme amount of guilt and responsiblity about being out of work. I told my Principal I needed to rest for 2-3 weeks, maybe more but that I aim to come in to finish the school year as there are a number of end of the year responsiblities to complete.
I feel like I do not know what to do, beyond what I am doing to encourage my recovery and healing. I also feel like no one understands what I am going through and that I appear "normal." I am very sharp and analytical by nature, think quickly on my feet and am articulate, which I have continued to maintain to an extent, so from my personal to professional life I feel alienated, I get frustrated when I can't remember a word or what I was going to say, and I don't want to vent or complain to anyone. I also feel like my medical support is not really adequate.
What I am hoping for with this post, and thank you sincerely to anyone is still reading, is recommendations on advocacy groups (I'm in NYC), organizations, things I can do to improve my healing, advice, a story about your own similar experience or anything that could possibly be helpful in this moment. Thank you!
C
I am not a TBI/Concussion patient myself, but I too suffer from depression and anxiety. I think everything you are doing right now is a step in the right direction for healing. My advice is to be patient with yourself. Healing does not always happen in the time frame we expect it to. Take it one day at a time, and don't burden yourself with guilt because you are not at work right now. Pushing yourself too hard might stunt your healing progression.
As far as memory, reading, writing, and speech difficulties, have you considered seeing a speech therapist? They are trained to help you improve or regain those skills after a TBI.
So sorry for all you are going through, but know that you are not alone. Be gentle with yourself, all will be well in time. Take care.
Thank you very much for the encouragement. I especially appreciate your thoughts on work as this is a continued struggle. I'm slowly feeling a little better while on my leave of absence but don't want to "relapse" in terms of symptoms if I return too soon.
My speech is actually ok, it's more a matter of getting mental fatigue and I, thankfully, have not experienced it since I've been home.
I definitely empathize with your struggles with depression and anxiety. I am taking both an anxiety and depression medication, see a therapist weekly and do a lot of yoga and meditation. I also journal and paint. These things work for me and just trying to constantly breathe and force my thoughts to the present, which yoga is great for.
I hope you find something that works for you to ease your difficulties and thank you again for the support.
I had to join and reach out, as I find many similarities between our lifestyles and experiences with our TBI trauma. I am an elementary school intensive special needs educator, and sustained a concussion end of January. Presently, I am on disability pay, because I am not 100% healed.
As my injury happened at work, I have been treated through work comp doc. They are just as bad as everyone says. I was returned to work after 3 weeks, starting with 1-2 hours--wearing sunglasses and earplugs. No kid contact time, just office work. I did this for about 4 weeks, increasing the hours to 5 per day, 2 hours with children-- but came home each and every day, fatigued. Explaining to the work comp doc, the response was "you gotta just push yourself; you're gonna get tired--you haven't been working; wait till you're 50!"
Let me tell you from the heart: I BELIEVE YOU. I UNDERSTAND.
These people want to compare their 10-14 hour day (as the doc said) of feeling tired, to my 3 hour day (I continue my after school club) of feeling FATIGUED. I finally got to see the neuropsyche, and here's the scoop: your nervous system is still on high alert, so your body's ability to filter out information/stimuli it does not need to pay attention to is confused. To begin to retrain this system, "pacing" is recommended. and once I began following this method, I have been feeling better, and now, 2 weeks later, am able to sustain activities for longer periods, getting 'just' tired.
I too was/am able to putter around my home without fatigue. It's when we get out into the world of more stimuli, that our nervous system gets flustered and then exhausted. So to practice for these events--and go to ones as necessary!--try pacing. Choose an activity--like taking a walk--and do it for just 20 mins, then take a 10-15 (or longer) break. There are no strict rules about the type of activity, or length of break, only the length of time you allow to do an activity.
I chose to mow the lawn this way: I cut for 20-25 mins and stopped, feeling fine, but went in the house and did breathing cycles for 10 mins. Then I moved on to cleaning the kitchen 20ish minutes, then sat on the couch and listened to classical music for 15 mins.
The idea is to NOT try to get a bunch of stuff done while you're feeling good, and then CRASH, into fatigue; it causes your body to have to recover from farther down, prolonging total healing even longer.
And do not be strict with yourself to do one thing for 8 hours of 20 on/10 off. Go about your day as you have been, but take breaks, even though it will not "feel" necessary to do so. Our bodies need to relearn how to relax in multiple stimulus situations, and getting exhausted only teaches our bodies that is how situations will effect us.
Those are my brief ideas for comfort and self-help. Please reach out for any further details you may want clearer or other I FEEL YOU! support.
Keep on healing...
While the last 2 weeks have been sooo much better--as I believed, due to pacing--today through me for a loop...
The Last Thursday in April, I spent 3 hours out and about, in a busy natural products drug store, for their spa day, and it was great! Finally feeling like myself again--not just the absence of symptoms (light and sound sensitivity)--for the first time since the injury in January!! So excited!!!
So I continued going out more through the week; co-hosted my after school club and didn't get exhausted (first time!), visited with dentist twice (yarg), and did errands 4-6 hours some days! I did get 'tired', but not "fatigued." So I thought I had that part handled--until today. Again I co-hosted my after school club, but this time, after only 25 minutes, I was getting tired. I'm glad I finished the whole meeting, and clean up duties, but I am beyond tired; yet not totally fatigued, which is a blessing.
But it is still a bit of a let down, feeling as though I had progressed past this symptom stage. My conclusion then, is that it is the variety of stimulation in the environment, AS WELL AS trying to concentrate within such, that causes our energy to be zapped. So while the doctors and tests may say "your brain is fine," we all can feel--even if we can't name, and other people can't see--the parts that are still catching up.
I situations are almost identical. Same exact symptoms. I suffered a second concussion / TBI in February 2018 from a vehicle backing into me in parking lot - was still recovering from post-concussion syndrome from my first car accident in Nov. 2015. My neurologist took me out of work in Feb. 2016 because he said working and stress would not help with recovery. I haven't been able to go back since. From first accident I had to go to rehabilitative vision therapy, vestibular therapy (for dizziness & balance issues, as well as cognitive and speech therapy. All therapists told me the most that could be recovered would be 80%. Your so right, no one understands. Honestly if I had not gone through this I am not sure I would understand. I didn't understand so much when it first happened but I have done a lot of research. However, it is so difficult to convey to someone who has not experienced this to understand what one who has suffered concussions / tbi / post-concussion syndrome goes through daily. It truly is a daily struggle for me. It takes me so much longer just to get through daily living activities that previously were just automatic - meals, brushing teeth, bathing, etc. Some days I am so fatigued and out of it that it doesn't get done. One good days it takes an entire day to do it and keep up. Work is out of the question, at least at this point.The noise with multiple conversations, distractions, lighting, busy environment, and finding the right words to verbally communicate overwhelm my brain. Low soothing stress-free music helps with sleep dysfunction and with anxiety as does yoga or walks in nature. Green tea with matcha also helps with focus. I am on ADD meds to help with that as I get distracted driving although I don't drive much. I totally get where you are coming from. I never know how I am going to feel when I wake up and my sleep cycle is so dysfunctional. Courage is being able to get back up the next day and try again ;-). It helps tremendously knowing others who have gone through this get you! You're not alone!
From experience I tried to push myself through this and it doesn't work. You will have set backs. It's hard because when you have a good day you try to make up for lost time by doing all the things that have been on hold. however, for me that led to setbacks for a few days. However, its hard to gauge what is too much because you feel you can do it at the time. However, the next day you realize you over exerted your brain. It doesn't have the same stamina it use to. It is easily fatigued and it needs a steady supply of fuel (nutrition). I have had this happen to me.
Have a TBI from a bad car accent in March 2018. Have been out of work since. Problems include, problems with headaches, speech, memory loss, ringing in ear etc.
The problem with TBI, doctors and Workmans comp is that they all suck. Well almost all. I found a great physical therapist and neurologist in NYC that are dealing with my TBI. My Neurologist put me on a one month course of treatment with Amantadine (A Parkinson's Drug), that is used to help the healing process. in two weeks he is putting me on another medication for the TBI. I am also going to Cognitive therapy 2x a week.
In terms of people not understanding, they don't. I can't explain to someone why I can't speak all the time or why my memory is off. The more complicated the task mentally the more difficulty I have. This can also feel very embarrassing
at times. I am in Finance and all I do is calculate, analyse and work on spreadsheets all day. Having a TBI is also very isolating, other then going to physical and cognitive therapy every day, I make sure I get out of the house and be around people. At the moment I am at a coffee shop writing this, which is my usual haunt theses days. Its just good to be around people where I don't have to talk. The good side is that this will all improve and get better in time. You need to be patient. This will sound silly, but at the coffee shop I also watch romantic Christmas movies, because they make me laugh and feel good.
Anyway, I hope this help in some manor. Feel better soon, you will :)
Big Hugs.
He just started taking the purest form of CBD Oil, Hemp 5 days ago. He is like s new person. He is happy, can actually plan his day, and no more depression. He says his focus is amazing and he sleeps well now!! He just texted me this morning to tell me that he’s amazed and feels so great. I cried!
Hemp, without THC, is God’s healing plant. Drug companies use to sell it on the 20’s and 30’s. They don’t want it on the market because it can help with so many health issues that it wold affect their $$.
There are many types of Hemp on the market, but the one he takes is pure, and has up to 95% absorption so it takes affect right away. Others only have 3-6% absorption. I know because I have been taking it for 3 weeks. My shingles, migraines, arthritis and sinus pain are gone!!
People are going to soon learn more as the industry explodes. It is legal in most states now if it does not have THC. I. An send you some info on it.
This is not an ad!! I’m so happy about my son and I want to give all of you some hope!!
He just started taking the purest form of CBD Oil, Hemp 5 days ago. He is like s new person. He is happy, can actually plan his day, and no more depression. He says his focus is amazing and he sleeps well now!! He just texted me this morning to tell me that he’s amazed and feels so great. I cried!
Hemp, without THC, is God’s healing plant. Drug companies use to sell it on the 20’s and 30’s. They don’t want it on the market because it can help with so many health issues that it wold affect their $$.
There are many types of Hemp on the market, but the one he takes is pure, and has up to 95% absorption so it takes affect right away. Others only have 3-6% absorption. I know because I have been taking it for 3 weeks. My shingles, migraines, arthritis and sinus pain are gone!!
People are going to soon learn more as the industry explodes. It is legal in most states now if it does not have THC. I. An send you some info on it.
This is not an ad!! I’m so happy about my son and I want to give all of you some hope!!