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Eric replied on Permalink
I am almost 2 years out from my TBI due to an accident , I had an emergency craniotomy on 9.11.16. My surgeon and my neurologist were great at first but I had no insurance at the time. My aftercare consisted of a pamphlet on survival but I had zero therapy. My wife of six months at the time, was and is supportive but I fear she has reached her limit with the residual issues. On the outside I look fine, my hair covers the scar, I hide the facial symptoms well but it’s a daily struggle not to eat a bullet. I can’t remember my mother’s or sisters faces, they passed years before. I suffer from debilitating headaches , memory loss, fatigue, bladder and bowel control issues and depression. I developed seizures within a month of my accident and surgery. I was a soldier for 23 years, a very proud man I was. Now this shell I live in is a prison. My wife and stepson suffer untold misery because of it. My support system consists of only them. The financial stress is so severe that there are days I don’t eat so they can. I take 3000mg of Keppra, 400mg of Lamictal, 3mg of Klonopin daily plus Tylenol for pain. My neurologist said last visit that I will be on medication for the rest of my life. How am I supposed to do this? How can I ask my wife to endure the stress and suffer with me? I wish for death hourly. I lay in bed for days, when I try to do anything physical, I have a seizure. I need help before I put a gun in my mouth to just help my family go on.
Stephanie replied on Permalink
Please don’t give up; it does get better. Please do persist in getting help. Some states offer so much more resources, there are more out there but hard to find and your health just makes it harder. But get a social worker to help if you can, they are supposed to find resources for you. Please know, your wife does love you, and you can have a better future. I’m a wife in a similar situation to yours. My husband is profoundly changed, basically a new person. But he’s four years out, and he is getting better. He has a long, long, long way to go. But he can get there. Please educate yourself about the benefits of a Keto diet for both brain injury and seizures. You sound like your struggling with major depression; you can get better!!!! Really you can!!!! Don’t give up, breathe, pray if you do, mine will be with you
Sarah replied on Permalink
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
Lg replied on Permalink
I know exactly what you are going through. My symptoms mirror yours.
I have been unraveling for five years now. Reaching out for help has been a nightmare. Crisis line doesn't serve specific issue, VA multiple phone prompts, put on hold, voicemails not returned, 'not my department' rhetoric, nonqualified employees, lazy or unconcerned deadpan voices, unneeded advice from people that do not have a clue. I have been traumatized by the very system designed to help me.
2 months ago I worked up my pride and courage to go to a VA clinic in Bettendorf, Iowa. After explaining to a mental health expert that I was in full-blown PTSD meltdown. The unconcerned deadpan voice said, "I'm sorry you need to go to Iowa City. We can't help you here... (yawn)". I explained that it's an 80-mile trip, that I couldn't see well, and explained that I am having suicidal thoughts... (yawn) and I am in danger crisis. My TBI and PTSD mode is now Superman on steroids! I'm pissed and highly agitated.
I hang up, throw my phone against the wall exploding into shards, decide then to go to the E.R. at the local hospital...."I'm sorry we don't currently have a mental health specialist on shift." Fuck you! I then drive to the deadpan voice at VA clinic in Bettendorf Iowa. I was immediately confronted, face to face, with yepp....deadpan! "I told you to go to Iowa City." I refused to speak to the twit and complained to the receptionist that I am having severe chest pains.... BAM! Code called over P.A. system "code blue!" EKG hooked up (portable, dusty and out dated). Yep, blood pressure in danger zone and heart rate extremely high. Head is swooning and I'm sweating profusely. (I am physically fit) I then hear. "OK. Put your shirt on and take a seat in waiting area." Am I in hell?
Finally called into a office of rushed mental health garu awaiting gate departure. Whispering among VA employees and I hear "go down to blah blah room for blood test." OK...I'm floating and swooning, confused and pissed. The blood drawer only takes one vial of blood and I ask "what are you testing for?" She whispers "alcohol. They think you're intoxicated." Done.
Long story short I am now facing 30 years in prison. Never been charged with any felonies in 56 years. They say I shoot someone twice. Dead pan voice....2 class x aggravated battery charges. 15 years per shot. Game over. I appear for preliminary hearing on August 28th 11 am Rock Island County. Enter deadpan voices of money hungry lawyers. My home, my animals and freedoms gone. I spray painted my beautiful home with words I don't remember. Neighbors are terrified because I posted $10k and out on bond on $100,000 dollar bail awaiting my fate or should I say dead pan voice "seeking carotid artery? "
Mirren replied on Permalink
Lg, I was horrified by your experience, the trouble you are now facing and having to deal with so many unhelpful, apathetic, deadpan people - how incredibly Frustrating!! I hope you can find some help/support through this
Anonymous replied on Permalink
I'm so sorry that you've hard such a hard time getting the help that you need. I'm unsure if this information will help but here are two free legal resources for veterans:
Public Counsel Center for Veterans' Advancement
They provide advocacy and direct representation, or representation through probono partners, to veterans and their families on the local and state level.
For Veterans, call (213) 385-2977 x301
They assist service members, veterans, military families, and advocates access benefits, find free legal help, and better understand legal issues.
Stuart replied on Permalink
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!!!
Laura replied on Permalink
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.
Carolyn Gibbs replied on Permalink
I feel for anyone who lives with TBI. There are definitely multiple perspectives and not everyone is just an inconsiderate asshole by default.
As someone who works with someone with a TBI, it's impossible to know what they do or don't remember and of course it's incredibly difficult to be the punching bag for their anger. I have compassion but when shit is thrown at you daily and they blame you for their shortcomings, it's challenging to continue to show compassion. It's challenging to help someone as much as you can and just be screamed at, belittled, blamed and accused of sabotage.
How much do you allow someone to abuse you because they suffer from TBI?
Faith replied on Permalink
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 ?
Helen Murphy replied on Permalink
I suffered a traumatic brain injury 32 years ago. I was not aware of the moodiness, anger, or frustration I go through daily. I believe that with my not being able to always see what everybody else considers not "normal", as my fault. Suffering such an injury has closed many doors for me. I am trying to better myself and grow. I am thankful for all these sites that allow me to learn and grow.
MarShon Peoples replied on Permalink
I was shot in the head while protecting teens from gang violence. This article described my sentiments perfectly! I shared this article with many of love ones so they can understand me better with this very precisely articulated article. Thank you!
Annette replied on Permalink
I have been dating a man with a TBI with a severely narcissistic personality for 4 years. I am a nurse and I feel a very caring person. I have struggled to prevent the suicidal ideation in my own life due to the constant negativity and anger management issues that he struggles with daily. There's no rhyme or reason to the moods. I actually moved out for 6 months and then felt like I could handle it and came back. The worst part is I have a daughter who is 7. We both love him but we are getting hurt so badly. I always felt I was never a quitter in life. I could always see the good even during my worst days. I have always battled depression myself. I don't know what to do anymore. I love him 200% but I'm not sure we can handle what we are all going thru. I feel that I'm going to have to love him from afar for my own sanity. Need help. Not sure what to do.
Stuart replied on Permalink
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!!!
Laura replied on Permalink
Seek professional counselling to learn how to handle the mood swings. My boyfriend committed suicide 2 years ago .My situation sounds very similar to yours... The love was there but needed off the roller coaster... I miss him so terribly and wish I had sought help.. I feel like I failed him so badly. I also being a nurse should have realized the mood swings were to be expected. I did not educate myself enough and just took everything personally. Sounds to me he's someone you really don't want to live without... Do whatever it takes...
Nick replied on Permalink
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 :)
Lauren replied on Permalink
Speaking from the person on the other end, aka the girlfriend with a TBI who had a boyfriend, also named nick, (would be super weird if you’re the same guy) that did the exact same thing. I understand that this is incredibly hard to process for you as well however you have a brain that’s full functioning and able to process and she doesn’t. If you’re girlfriend is like me, shes going through the darknest, most painful and horrific moment of her life and she needs all the help and support she can get. So please, try to find a way to show up! Be there because the TBI’s and all those symptoms lead to such a crippling depression which honestly the only thing I think would help me most of the time is to be held tightly during those times I fall a part and then laid next to during the night hours when the thought of another day coming feels crippling. So if you could, and if you do really absolutely love her, then try and practice that love with action by being there for her. And I say this only because I believe love/ unconditional love is the worlds most powerful healer...better than any fucking drugs or therapy. (Not saying those things don’t help) but love is the ingredient for life’s biggest challenges and she going through hers! So give that to her, show that , be a part of her team because that’s part of the fuel she’s needs to keep going so she can reclaim her life.
Sarah Lund replied on Permalink
Well said. If you can't find a way to look after the relationship, it can easily collapse without effective communication. Communication is key in any relationship.
Amber replied on Permalink
It sound like you are all going through a very hard time, I would suggest reaching out to friends and family for support as well as a counselor who can help you both sort this out. The Brain Injury Association has local offices all over the place and they offer a great support network, not just for those who have had the brain injury but for those closest to them as well. BIAMA.org is their nationwide site. I hope things get better.
Stuart replied on Permalink
Amber, I will have to apologize, but I've fount BIAC (Brain Injury Association of Colorado) to be almost worthless to a TBI survivor that doesn't need help getting a place to stay, doesn't need help getting SS disability. I want to talk about the issues I have in dealing with life. Strategies for driving the rewiring of my injured brain. My group offered nothing like this, so I quit after three years. And I'm now 10 years post Severe TBI.
I have found Psychologists (Counselors) to be almost worthless. They can't prescribe the medications a survivor needs to get back to living.
Whether the Survivor likes it or not...the old adage of "better life through modern chemistry" is exactly right.
My life has been so much better since doing a 72 hour Mental Health hold in my local hospital. The Staff Psychiatrist was so much help because people like us make up a fair portion of their patient load.
Her changing my medications, dramatically upping my Venlyfaxine anti-depressant from 30 to 150mg/day has made a huge difference in my life. I'm happy, I can take on projects and complete them. I can be with others without my TBI showing up. Just feel good and know that I'm doing good!! Some people are a bit wowed by the 150mg dosage. After the first year my PCP allowed me to vary the dosage and then choose what worked best for me...wound up back at 150mg/day.
Now for men anyway, it can give you a great case of anorgasmia. But there are ways to deal with that.
So get this person the help they really need, as I have described is working so well for me, and hopefully life will get much better.
Oh, and I'm a survivor so I ramble...but she (I can't remember he or she) needs to realize who they were pre-TBI is gone and they are now on a voyage of discovery to learn who they are today. Mental fatigue means limiting your days to the number of hours that don't cause fatigue to lead to anger. Gotta learn when to say "stop".
Ken replied on Permalink
I am two years out from my TBI, and just recently have been diagnosed with having epilepsy! I have a hard time accepting my new normal , but I am very fortunate to have a loving wife that loves and accepts the new me! I am sure she has to bite her tongue quite often, but she does willingly! The people at work don’t really catch or understand how hard a TBI survivor has to work every minute of the day just to keep their head above the water! Losing short term memory, forgetting the reason you walk into a room and coming back 3 times before you remember, having thoughts run through your head like a pinball in a pinball machine or how little things that would not be stressful to the normal person become giant to a TBI survivor! My goal each week is to make it to Friday,so I can sleep all weekend so I can make it through the next week! I am paranoid in large groups - don’t really know why, it may be I am worried people will notice I am different, or that I am afraid of having a seizure in public!
Stuart replied on Permalink
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.
Karissa replied on Permalink
Great post! We will be linking to this particularly great post on our site.
Keep up the great writing.
Carolyn replied on Permalink
Thank you for this article. Maybe it will help educate someone and help them be more sensitive to this disability.
Donna Johnson replied on Permalink
Mother of adult son 29 with TBI DUE to concussion football 8th grade to semi pro ball
2014 his life just froze he just stop all activities completely changed
From independent living on his on to no memory and confusion.
After getting loss one day .for a werk we found him .
By doing missing person
He was founf .but confused, scared .we didn't know what to do so our local hospital sent him retaliation center he was given med for schizophrenia sadly to as he was misdiagnosed.
We had him tested by a Nurologist doctor found out it was not. stop meds jan 2017 which caused him more issues thank God it was low dose of meds .As his mom i told the doctor something has happen to him . NOT Scko
he still has some issues .caused him not to trust doctors . Cognitive,
Emotions all of the TBI systom but since we were able to see a Neurologist tested him and we found out it was TBI we are being patient as
We rebuilding trust with my son allowing him time to ajust to his new situation our life as a family leaning to live with all the new day by day changed in him .
person but greatful hes a live and
willing to live at home with us mom and dad.
Thanks for all the
information its very helpful.
Jonathan replied on Permalink
In your article, you mention that some prescription drugs have been shown to reduce apathy. I would like to know if you can elaborate on this. I am having trouble finding any reliable scholarship on drugs that reduce apathy.
Stuart replied on Permalink
Well, I think my anti-depressant is what got me moving away from apathy. I take 150mg of Venylfaxine every morning.
I do know that some of my apathy came from a comment my wife's daughter made, an RN, and further research has shown to be correct. Upon coming back to life from a severe TBI all my self confidence was gone. Its been 10 years now. I'm getting better year by year, but self confidence is something I'm still working to understand how to improve on.
But the anti-depressant was the key for my situation. Feeling good about getting up and getting going. Taking on tasks and getting them completed. Being out and around other people. Learning how to socialize again. That's where one returns to living after a TBI.
One also needs to be cognizant that who they were pre-TBI is not who they are now. So its a voyage of discovery learning who you are again. And as the danged Dr always says to me "It just takes time". Pfffttt!!!
Alexa R replied on Permalink
I have a different approach to dealing with the emotional effects of my brain injury: I accept that I'm apathetic and that I don't care about anything or anyone anymore, but still I get up every morning and go to work and I hope that there will come a day when I will feel a passion for life again, far away from the surroundings I'm in and amongst people I care about, doing things that I love to do.
Likely is this to be "in the next life" considering Everything, but that's the long-term objective towards which I'm forcefully moving at "the speed of a snail", especially considering that and how one's life, reputation and finances also become ruined as an effect of brain injury and so one becomes stuck, also in horrible surroundings, because one has no means or opportunities left to move away from it and them, as well as no peace or means with which to heal.
Kevin replied on Permalink
I have a traumatic brain injury which caused me to become more alcoholic any suggestions?
Badlandsbabe replied on Permalink
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.
David Bruce replied on Permalink
This Is a Very True Article. 10 1/2 years ago, I had a Right Temporal Lobectomy to cure Seizures of 23 years due to a childhood head injury. I had to return to work in a mere 6 months to Survive, and at that time I didn't mind because I had more energy than I had ever had because of no seizures. It took 5 years for the Bruise on my brain to heal, and I was one irritable human being. I looked fine, but my short term memory was Tremendously affected, and I was working inna manufacturing capacity. Had I not had confidence in myself, I would have been a disaster to those around me. If you lose friends because of your injury,, they weren't real friends to begin with. The friends that stuck by my side and the new ones who have accepted me since, have a Friend For Life.
T J replied on Permalink
The most frustrating part is you are consciously aware that you are not the same and there is nothing you can do to go back to who you were. I am 180° different than who I was and it is horrible. I was positive nothing bothered me now I am negative and everything is a huge ordeal.
Stuart replied on Permalink
Then you must get help...and by that I mean medications that helps keep your brain in a good mood. Yup, anti-depressant. I take 150mg a day of Venylfaxine. My Severe TBI was 10 years ago, May 2008. In Oct 2013 anger issues got the best of me. I did my 72 hour mental health hold at the local hospital...best thing that's happened to me!!
The Venylfaxine makes me feel very good about life. I can get past the being 180 degrees different. I look at it as "who I was pre-TBI died that day. Today I'm on a journey of discovery to learn who I am now" Some things I can no longer do, But I get to celebrate all the things I can do.
Rewiring the brain takes a lot of time. I've read more on the web, had more discussions with my Neurologist and Psychiatrist as time passes. And I can look back each year and see that I'm doing better.
Hate to admit it, but I would recommend you see your Dr and ask for a 72 hour Mental Health hold at a local hospital. Believe me, you will feel better, you'll get a chance to work with Physicians that understand what you're going through. know a whole lot more about medications for your issues than your PCP.
You will be given a transition plan that will include participating in groups like anger management, adjusting to life with an injured brain, but it sure worked for me.
You can do it. You just have to make your motto, "I am not a quitter" and I will survive!!!
Mike replied on Permalink
Same for me.
Bridget Bell replied on Permalink
I had 2 strokes in March 2016 at 29yrs old. At that time I had many close friends. A handful of which I had been friends with since grade school and many more that I had been friends with since 10th 11th grade. Now 2 years later I have only one friend that even bothers to pick up the phone and call me and very few others that even keep in contact. I think a lot of that has to do with getting older people starting families me being the only single one without children has a lot to do with that but I believe you even more so the fact that it's because they don't understand where do they care to understand what actually happened to me. I have been told hundreds of times to try to be more positive, I should try harder, go to the gym more, stop taking soo much medicene. Asked why am I so irritable and crabby? Do I know how lucky I am to be alive? Why don't I find a hobby? Why don't I go out and meet a guy?
As much as it hurts and breaks my heart that Ive lost so many important people In my life I don't miss those questions.
Stuart replied on Permalink
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!!!
Forrest G Adams replied on Permalink
I have suffered two brain injuries. The first in the oilfield in 1992 and a second reinjury in Afghanistan in 2010. Many things change after an injury. Friends come and go as in life. People don't understand but even trained professionals have to listen to you to comprehend things you are experiencing and from my own experience even then they don't actually understand. Most importantly,at least in my case, it seemed to be most important for me to understand who I am. Today, tomorrow, and future. I seem to have a few problems from my injury and people do not seem to notice but that's okay. I have personality change but it's for the better. I work on short term memory every single day. I function,at least as far as anyone can tell. Even the professionals. Do not be discouraged when they don't understand. That was the hardest thing for me to come to terms with. The professionals can be idiots too!
Denny replied on Permalink
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.
Vicki replied on Permalink
I found this article this morning. I thought it was helpful and thought you might too.
Susie replied on Permalink
My husband is a TBI since 2010. I've taken care of him at home with a lot of help. He has come a long way in his recovery. He too had multiple strokes 3 weeks into his accident. Since this time the trach has been removed, I had to reteach him how to breath, how to hold his head up by strengthening his neck. He has had to relearn a lot of things like brush his teeth, comb his hair, put a shirt on. All with assistance. He has a G-tube, he can't swallow and has a suction machine by him all the time. I make all his foods, which is another reason he is on NO medications. He does OT/PT 4 days a week at home. Right side mobile and the wheelchair is a blessing. He only gets one day in bed a week. We keep him moving so he doesn't get blood clots.
I have worked very hard to stay positive and help in his memory loss. I have visited a therapist and this helps to keep me going.
My husband can be any age on a daily bases. He also doesn't remember losing his mom. He wants to see her all the time and denial sets in when I say she has gone to heaven to be with God. Not sure how to handle this one? Any help from TBI persons would be great.
Family doesn't know how to act with him, so they don't visit. We have 4 adult children 1 is full time on his care, another visits as often as he can. The other two can't deal with it. Our grandchildren are troopers, they have no problem with his condition.
God gave my husband back to me and I'm so grateful for that. I love him and will never give up. God is with us and helps with everything. We just ask.
So for all those loved ones out there dealing with a person that they love with TBI, I say be patient, be kind, take a breath, walk away when you are frustrated before saying anything damaging. I do this all the time. Compassion is the key.
Monique replied on Permalink
Your story sounds a lot like mine! It’s comforting to know I am not alone. My husband 6 months ago went into cardiac arrest and suffered two strokes. It’s super hard I commend you because I try to stay strong guys it’s so hard. He has 6 brothers and two sisters and a mom no one wants to bother the hard thing is he can’t accept it
Maureen replied on Permalink
I was engaged to a young man( he was 34 and i was 28) in the early 1980's who suffered permanent brain damage as result of a bad auto accident. Although he resided here his parents who were quite on in years took him back to Florida to live with them and his fraternal twin. They are all deceased. I lost contact with him as his family thought I should go with my life but I found him recently . He is in a retirement home and I spoke to him briefly. I want to go visit him but do not know if that would be worst for him. The staff said they knew of me as said he spoke of me all time and knew my name. He was a wonderful, intelligent, loving man and his accident altered his life , mine and that of so many others. I am sending cards, letters, almost daily as he no longer has any family, never gets mail or visitors ., He does have a guardian. What can i do for him? It must be awful. I want to be a friend of sorts as everyone needs to know they are cared about, remembered on their birthday! make him smile, laugh, be happy. I always hold a special place in my heart for. him. He referred to me as woman of his dreams. I regret we were not married as I know there are frustrating days but I loved him so much and visited him daily in hospital and rehabs for 2 years! Then they chose to move him back to their home down South ( I understood that). What can I do for him? Should I take a trip down to visit? I know what we had can never be as he is the same yet different. I just want to be his friend, let him know he is cared about., never forgotten. Thanks!
Rose replied on Permalink
I am so sorry that he was moved away, even if it made sense for the family. It sounds like he loves you so much and you him. I don't know the extent of his condition, and these visits can end up being difficult emotionally, not just because the sorrow of what was lost, but because of his confusion. That said, I think you should still go if you think you can handle it. After that initial visit you will be able to know how live interactions with him will be. TBI can be the most lonely thing in the world. Sending letters, little gifts like his favorite snacks or books, if he is able. . . maybe virtual games such as Words With Friends. Anything you feel good doing, that lets him know that he is remembered and connected in this world, is an amazing gift and will help him greatly. You are an amazing women for staying connected with him. I know it can be so much easier to turn away. Sending you love and strength.
Virginia replied on Permalink
I have a brain injury, go see him. Stop being so afraid. You can change his life.
Steve replied on Permalink
You are an angel. Stay in contact and keep being his friend, no matter what. After a lifetime with TBI, lonely is my worst condition! I am surrounded by my large family, yet no one in my circle really understands what it’s like to be PTBI! If you can, make the trip! May God bless you for your loyalty .
Denny replied on Permalink
Your husband is very lucky to have you. Sure your faith in God is the backbone of who you are. I have TBI as well. Told possible CTE. Stage three. My wife too is a Christain. She is a blessing. I can not relate to what your husband is going thru. I have had multiple concussions due to sports. It has taken its time to catch up, but it has. This I do know. My wife's mother lives with us. She is 93. Her husband also lived with us but passed three years ago or so. Alzheimer's. Wife's mother has dementia. Pardon my spelling. My spelling used to be really, really good. Now; not so much. Mom still asks where her husband is. We keep her husband's obituary on the table by where she sits. We tell her and give it to her to read. Don't know any other way to do it. I hope your husband gets better. There is not much worse than remembering what you used to be able to do, and now, not. There are support groups for caregivers. In CT they have them through the Brain Injury Assoc. It is good to talk to those going what you are. I think for you, it's an opportunity to share your faith. Someone out there may need you besides your husband, God bless you.
Ed replied on Permalink
13 years ago today at 16:32 hrs (New Year's Eve), I died for "38 minutes to an hour" according to CARE Ambulance. My head hit the ground so hard, the lights just went out. I was moving a dirtbike in between shots in back of my studio when I got hit by a truck...no helmet since I was just moving it over to the dirt and I grew up racing motorcycles.
I've always been blessed with the ability to use both hemispheres (I'm an engineer/inventor and photographer), and my recovery has been truly remarkable. However, it's BECAUSE I appear fully functional again that my close friends/family lose patience with my short-term memory...I'm told that I repeat myself constantly.
I've sent them this page's link...so, thank you.
Kristina replied on Permalink
My guy just got a TBI. Nurse said he hit his head and it appears multiple times causing his entire brain to bruise. He gets the hummingbird out today and maybe tubes out tomorrow. Tomorrow be 2 weeks since the initial accident anyhow he was trying to sit up but couldn't cus his hands were strapped to side rails and he was crossing his leg. They say he will never care for his self but I seen that and I'm more hopeful. He does not know me or his dad how long does that go on for? His memory will be hard to get cus for 6yrs he would remind me of stuff we have done. Dr.s I have seen, places we have went. I don't have TBI but he has always had enough memory for us both. How much does TBI people change. He was amazing, patient, kind and loved me like no one ever has. He has told me for 6 yes I'm the one he meant to marry and I'm beautiful no matter if I looked like hell. I'm just worried I will be pushed away by him and his dad He brang me 1300 miles from home to NM. I'm still only here cus his dad said he brang you here and wants you here. How much is gonna change?
Nadine replied on Permalink
Hi Ed, that was an amazing story! It really goes along with what I believe. I formed my ideas from reading books such as Richard Bach's "The Bridge Across Forever" and "One" and reading "The Education of Oversoul 7" trilogy by Jane Roberts. It resonates perfectly with these, especially the Richard Bach.
I was very disappointed the golf lady derailed the subject and continued to do so even after the host mentioned the subject had turned off topic.
However, I am glad that you mentioned the book by Dr. Eben Alexander and will order it soon. Have you written a book? I would love to hear more.
Andrew replied on Permalink
Hi. I've been married 11 years. My wife has had a series of brain injuries ongoing. I was working and became disabled. We communicate like D-Day sometimes. Its like the art of connection to someone with TBI is unique and method is not interchangable. With insufficient tools, a plier being the last tool- it strips a hexnut... and that is not the end. You can go for the hexnut, stop, cry, ache... there is no hexnut! But aggressivity and defenses build around what seems insurmountable to accept! One day is here- today.
I am willing to face the fire of the desparation but not today. Now I get Xmas cookies. I can use conversation and encouragement. I'm still getting my @$$ kicked by life trials.