9 Things NOT to Say to Someone with a Brain Injury

Oh that sucks, I kinda know how you feel with answering questions I can’t always work out what the main focus in the question was and quite frequently I loose words mid sentence and can’t think of the word (even commonly used words) So then I get stuck and I can’t complete the sentence until I find that word or another word to replace it. Have you looked up brain injury support groups in your area? I go to one and I didn’t think I’d find it helpful but I did, being able to discuss my everyday challenges with people who understand completely what I’m experiencing is actually very freeing. And we share our different strategies for dealing with the everyday challenges of brain injury life so that we can help each other if all we’re currently trying doesn’t work. That and it’s just nice to talk somedays and not feel judged (especially since I struggle with my decency filter)
I hope all goes well for you that you never have to feel alone again. All the best

I also live with someone a lot what you say yes it is hell and it feels like a prison within just when things get good something's happens that sets us way back and it's like starting Uber day after day we got weak and I'm feel like I got this major weight around my ankle and I can't pull myself up out of the hole on the ground but still with hope and loving compassion I tried to move on from the date to relive another day like the day before and the day before and the year before and the year beforbut all I can say is don't give up I don't know how your wife handles it So out of frustration I yell scream say horrible things because I don't know what else to not getting app and not making an effort no matter what and just give it app like you don't care it's not the best ideal option be proactive be productive even if he's get app go for walk go to library even see a counselor even if you don't believe it helps I didn't think it did either but I've spent my whole life in mental health and counseling in Spotify Can have patience and not give up so easily on those that are just discovering a new life or just needing help because of a tragic situation

Ask your nerologist if you can take a lower dose of Keppra (I am not a nurse/doctor) but I DO know what the side effects of Keppra can do to you. I have nothing what you are going through, but all these things about suicide and depression is the Keppra. I wish you luck, love and health

Eric, I'm 10 years post Severe TBI. I have found that I do better year by year. Couple of things I would ask about. I was on Keppra for seizures. Anger issues about had life get away from me...and I did a 72 hour Mental Health hold at the local hospital. Best thing that has happened to me! The staff Psychiatrist changed my "anti-convulsive" from Keppra to Oxcarbazepine. Reason, Keppra gives the brain almost no time before things go off. Oxcarbazepine is not only an anti-convulsive but is also a "mood stabilizer". I take 900 mg a day. 300 mg in the morning and 600mg in the evening.

I don't recognize the other meds. But I'm now taking Venlafaxine, an anti-depressant, 150 mg tablet in the morning. WOW....I haven't felt this good in a very long time...if ever.

I take Clonazepam, an anxiety med, when I need it. Or mostly when my wife sees my behaviour and know I need one. I see that you take Klonopin which seems to be the same.

I would suggest talking with the Drs right away on the Anti-seizure meds. Why are you taking two different ones? My Neurologist prescribed the Keppra and 10 mg of Venlafaxine. The Staff Pyschiatrist at the hospital laughed. The Keppra didn't give my brain time to "think" before getting angry and the 10mg dose of Venlafaxine was way, way too small!

I'm no Doctor, but after 10 years I have lots of experience as a TBI survivor. So let me ask a few questions:

debilitating headaches - Have you spoken with the Drs on a med like Imitrex that will kill and incredible headache in 30 minutes? I have gotten migraines throughout my adult life. And have Imitrex. But PCP thought NO. Neurologist and Psychiatrist don't see any problem with it. And after 10 years, I'm OK with it. I take 100mg Imitrex when a headache begins to develop

memory loss - I've had an EEG and about 1/3 of my brain is just "Scar tissue". No longer electrically active. So things I could always remember...some times take a couple of days to pop into my brain. So what. I'm getting good at using Samsung Notes on my phone to keep track of things and Google calendar on my phone to keep life in order. And yes, my wife, my most wonderful caregiver helps me stay on track.

fatigue - Yup, every TBI survivor deals with it. The reason, as your brain rewires itself it often takes more sections of your brain to complete a task that used to take just one section. So I keep getting better. But I get up at 6AM, shave, shower, dress and by about 6:35 I'm out the door to one of two mens breakfast group. I continue to be amazed at how much better life is if I have "routine" up, out, and meeting with others. Nope I don't have a lot in common with either of them. But I listen, ask questions, and am accepted. It works...get out and do it!!

bladder and bowel control issues - these ones are no fun at all. For the first eight years, there were times my brain gave me a couple of minutes or less that my bowel was going to move. What a mess!! So I tried to prepare, and worked to accept that it happens. And as my brain rewiring continues, it doesn't happen very often and I know how to deal with it. If you're just lying in bed...that's the worst thing you can do!! As your legs get weaker the pelvic floor muscles get weaker and there goes bladder control. Just wear Depends while you're in recovery and accept that life will get better, and if it doesn't...well you can deal with it!!

depression - This is a biggie for me. I have to work to be aware of it. And my wife is very good about asking about it. Go to a Psychiatrist and talk about what's going on in your life that is causing depression so that you can deal with it. The Venlafaxine is also very helpful. Who cares if I'm on it for the rest of my life. If I'm feeling great, that's what matters. Yes, it can give you an awesome case of Anorgasmia, but there are ways to deal with that too!!

My most important thought to you Eric...you gotta get off your ass and get back to living! What happened, happened. You may, like me, have to accept that who I was pre-TBI died that day and I have to discover who I am now and get on to living. Looking back a decade. I'm doing better than anyone thought I would. And that's because I refused to quit. This is my life and I'm going to make the very most of it I can. Yes, its full of pitfalls and some failures, but I just keep working away. And enjoying looking back each year at how much better I'm doing!!!

Dear Eric,
You haven't gotten the medical help you've needed to recover, and that isn't fair at all...! I don't know what state you live in or if they have a system or organizations to help, but please reach out and ask for help. Life can and will be better than what it is right now. I would say to be patient, but you have been, and healthcare isn't treating you right. You have every right to be angry. You deserve better care. I wish I could help you. I came across your message and it broke my heart. Please remember in the dark moments that it will get better. Everything changes. Heck, even when we don't want them to, things still change. Please remember that no matter how frustrated other people get that they still love you just as much. You're being way too hard on yourself. Be kind to yourself. Please, whatever you do, Don't check out. It's time to fight, demand the care you need.
Sending peace and healing across the Internet to wherever you are.

Laura

My fiancé was hit in the head by a falling heater he has been hearing voices that won’t stop he gets a loud ring in his head for hours is this something that is unusual for head Trama ?

He needs Psychiatric help. Not counselling. Someone that can better delve into what's going on and can prescribe medications to get things on track.

You didn't comment on what medications he is on. But he needs to be on an anti-depressant like Venylfaxine. That's what I take, and I take 150mg a day. Most people hear that dosage and are "wow". But I dropped back to 100 mg...and just like that my wife noticed a negative difference. So back up to 150mg and life is better than is has been in a long, long time. I am 10 years post Severe Traumatic Brain Injury.

Each year I can look back and think that life is better than the one before. The first few years are just awful. The brain is rewiring itself as best it can. That means mental fatigue will be an issue for the rest of his life, like mine. I have to be aware that by about 4PM its time to sit in my chair and read, play games on my phone or watch TV. If I try to continue working on something, things go wrong, I get angry, and nothing is gained. But I do have Clonzapam 30mg to take for the anxiety when things start to go off the track. He needs to see either a Neurologist that deals with TBI patients or a Psychiatrist that will working with TBI survivors.

One thing he must come to understand is that who he was pre-TBI died that day. And now his quest is to learn who he is now and how to manage life. Can't keep going back to "I used to be able to". Because that's gone now. But learning how to do new things...provides a great sense of accomplishment.

Its also very important that he get back out in the world and socialize. You his caregiver are not the right person. I now belong to two mens breakfast group. I have a high school classmate that introduced me and got me started. The rest of the men in both, I don't have that much in common with. But I go and listen and ask questions...and all have become aware that I'm a survivor, and all take the time to answer my questions. I may not understand the answer, I'm not a sports person and one group are all retired high school coaches. So what. It gets me out there. I have breakfast at 7AM, five days a week. I have friends that if I bump into them out in the world. We always share a hello, how are you. That's very important for a TBI survivor. To sit at home invites dementia into the brain, and that is a disaster that everyone should do their best to avoid. How? Keep the brain active. I belong to four online forums that revolve around things I like to do...that keeps me searching for answers to others questions...because I have some time.

Its also important that you attend some of the Psychiatric appointments, but not all of them. I found that sometimes its important for the Dr to chew me out and get me thinking, give me things to work on. Sometimes it will be important for you to be there, so that you can be honest and tell the Dr what you are seeing and experiencing.

Yes I ramble some, but...I'm a survivor and I do my best!!!

Hi Annette, I have a Girlfriend with a TBI. She is very similar to your husband in regards to the constant negativity and anger management issues she has. Now we don't have any kids but from my own experience I did have to take a step back and love her from afar for my own sanity. I love her so much and it was the hardest thing to do. We stopped all contact for a couple months at first and it really helped me mentally because it was like walking on glass before. I completely understand what you are going through and if you have any questions or anything you would like to know I would be happy to help :)

Work with your Dr to find an anti-convulsive that works for you. Mine is Oxcarbepazine, 300 mg in the morning, 600 mg in the evening. Its also a mood stabilizer, and that really helps.

Its not wrong at all to tell your co-workers that you are a TBI survivor and that for all of us, mental fatigue is a big issue. So we jump into the real work in the morning, and do the lesser things towards the end of the day. For me, the last three years of work about a six hour day was it. But I was there for 10 did the best I could, and that's it. Now in retirement it can be even more difficult. I sometimes beat myself up for not getting enough done in a day. Here on my place I used to work 15 to 17 hours a day getting the place built up. Well, its still about 6 hours a day and I have to learn not to be hard on myself. Hey we are still alive aren't we?

I've always been a person of lists. I've gotten a "smarty phone" and learned how to use the Samsung Notes app and the Google Calendar with reminders to keep me on track with life. Just takes a bit of getting used to.

No you've got to stop sleeping all weekend. You have to get out in the world, experience new things. That's what drives the brain to rewire itself...and that is probably them most important thing in TBI recovery and survival!!!

Now my left optic nerve was damaged in the accident, so my left eye is completely blind. So I to am fearful of large groups. But I'm learning how to adapt. Stay by the wall. Stay close to an exit door if it makes you feel more confident. Oh, I forgot to write that loss of all self-confidence is a trait just about all of us survivors deal with.

I don't do stairs without a handrail. I like to hold onto the rail with my left hand. So if I come nose to nose with someone, I tell them that my left eye is blind and I like to hold onto the rail with my left hand so that my right eye can see the rest of the stairs and help me make sure I don't fall. You know what? Not a single person has gotten angry. They all tell me "you're doing well, let me get out of your way".

Yup, I'm a survivor and tend to ramble...my apologies.

I'm sure you are aware that consuming alcohol is one of the worst, most self destructive & dangerous things you can do to yourself when you have a TBI.
I don't know if you have a support system in your life of people who care? If not, there are meetings in your city & programs for people who have sustained TBI & these programs will all help you & also, connect you will other people who are going or have gone through the same, or very similar situations. All it takes is a phone call. There's obviously a reason that you are self medicating, dir pain, depression etc.. You will benefit from getting in contact with your local programs & resources. Talk with a counselor, a trusted friend or family member, just talk to someone. There's plenty of creative things you can do to make yourself feel better.
Best of wishes.

Same for me.

Losing friend post-TBI is very normal for just about all of us Survivors. I lost everyone I biked with...some 20 friends. I retired 3 years post-TBI and have lost just about everyone I worked with. So be it. I like to think that is their choice.

So I work to make new friends. Something I have virtually no skills at. I was an army brat until I was 12. Dad retired and we settled down in one place. But during the first 12 years of my life we moved every year, two years, at most 3 years. And when you moved, you never, ever saw any of your friends again. So you didn't work hard to stay in touch, you just started over. But settling down in one place, starting 7th grade...and all these people grew up together. Had been friends forever. So I was still a loner. But 10 years post Severe TBI. I take my medications, especially the anti-convulsive and the Venylfaxine anti-depressant.

For the first time in my life, I'll strike up a conversation with anyone, anywhere and on just about any crazy topic that I see around me.

Remember, you struggle with mental fatigue as your brain is injured and it now takes more pieces of the brain to solve things. Be more positive...do that through "modern chemistry". ie. Medications. Do not be afraid to take what has been prescribed. Do not be afraid to investigate every med and see what it has for side effects and how it interacts with other meds. And then take them as the Dr says...talk with the Dr often so you have time to prepare for medication questions.

Yes, you must find things to do with your time. Keeping the brain active and learning new things is what keeps dementia away from your brain. That is oh so important!!

Go to the local Barnes & Noble book store and look through the magazines. Doesn't hurt one bit to buy a few that have articles that seem to interest you. But keep going back until you find something that "trips your trigger".

Way back when I got out of Engineering School in 1976 and went to work for an Electric Utility...I attended my first retirement meeting. I learned there were four types of Retiree.

The Leisure Retiree - a few holes of golf and a few hours in the bar. Then call it a day.

The Struggler Retiree - did some good financial planning for retirement, but doesn't have a clue what to do with themselves.

The Lost Retiree - didn't do any financial planning, trying to retire on Social Security and has no idea what to do with themselves.

And the Reinventor Retiree - that's me. Did good financial planning and did put a lot of effort into planning for what I was going to do in retirement. Seven years retired now an have lots of things to do. I built a big shop building I can do about anything you can think of with metal, weld, bend, CNC cut, roll...you name it...I can do it.

I also got into the Side-by-Side off roading lifestyle. So 5th wheel trailer, truck to pull it. And have some grand times out there. Not really that expensive...but I like it!!

Meet a guy? Well go to the websites like e-harmony. Be very upfront about what has happened in your life and I'm sure there will be replies that are good and some that are bad.

But don't be a quitter...stay out there doing you're best and life will be good!!!

Bridget,
Friends can be a loose term nowadays.  I used to have a lot myself. Now, no. Partially my fault. TBI has pretty much made me a loner. It's ok. I don't mind, much. But, ya, friends get married, kids, jobs, and don't have idle time. And even though it may look like they have it together; chances are they don't but mask it well and don't even have time for themselves.  If you have 1 good friend; feel fortunate. Even 1 is hard to find. Make sure if you reach out to someone or hear those question; steer them to this site. Maybe they will understand. There are support groups for people like us, Idk if you ever went to one. Where I'm from they call it BIA. Brain Injury Assoc. Might want to look into it.  It is good to share with those who know what you are going through and understand, Friends can be there as well.