Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 02-03-2018, 09:54 PM #1
mfurest mfurest is offline
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Shocked New here...

Hello! I stumbled on this forum by accident, and I am so happy that I did. My husband was in an accident almost two years ago while on a tractor. A tree smashed his left side of his face crushing all of the bones on that side. While his physical appearance is exactly the same, he is no longer the same person.

He tries, but his personality and stamina are just not what they used to be. He says he feels like he has constant pressure in his head, the smallest tasks tire him out, and his moods are up and down dramatically.

We went to a brain injury clinic and were told he should go into 3-6 months of combined therapies, however it is hours away from home and we are not in a position to be able to make this happen. We live in the middle of the woods in a very rural area in the Upper Peninsula of Michigan and resources are not exactly close to us.

We saw his neurologist yesterday and heard for the first time what we really already knew deep down but have never heard it aloud. "You are healed from the injury, but you are not the same person you were and you will never be." UGH...tough pill to swallow.

Our marriage, our family, our lives have changed and in many ways, have been stressed emotionally to the max. We are trying to stick together and figure it out, but it is so tough sometimes. I am dedicated, however, to finding everything we can to make the most of what we have and find a way to find happiness.

The doctor said he has severe depression (not a shocker to either of us). He wants us to start Cymbalta (20 mg then work up to 30). He also wants him on 1800 mg of Neurontin (900 at dinner, 900 at bedtime). He says the Cymbalta will help with the depression and Neurontin with muscle pain/tightness, sleeping issues, and nerve pain. I've been reading a little about these drugs and am a bit concerned that he is going to have more issues from the drugs than he does now...

I'd love to hear other's experiences with all of this.
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Old 02-04-2018, 04:01 AM #2
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mfurest,

Welcome to NeuroTalk. I am so sorry to hear what you and your hubby are going through. It appears he works in agriculture. Tell him thank you for helping to feed America. People do not realize that agriculture workers have a job that is twice as dangerous as a police officer's job.

It sounds like he suffered a left frontal lobe injury with the personality changes that come with that. Yes, this is the new him but it can be endured.

My first question is simple. How does he sleep? More specifically, does he breath smoothly and regularly when he sleeps? Proper sleep can be a big challenge. Without all of the full stages of sleep, fatigue will be a problem.

Second, Read the sticky at the top about Vitamins. His injured brain needs extra nutrition to handle the many stresses a weak brain has to endure. The vitamin regimen on the first post has a link to an updated later post. The most important vitamins are the B-50 Complex, plenty of B-12. They are needed to strengthen the blood brain barrier that protects the brain from the body's toxins. Omega 3 fish oil is also very beneficial. Magnesium (citrate or other non mag oxide forms)

I agree with your concern about the Neurontin and Cymbalta. I've been on Neurontin for 16 years. I only take 150 mgs to help with sleep, muscle tension, jitters, active mind. I was on an SSRI for 14 years but finally got off it. I do much better without it. You may not like his 'not depressed' personality on Cymbalta.

Before you take the big jump into powerful drugs, you could try some more natural supplements. 5-HTP will increase the serotonin and melatonin in his brain. His brain knows what to do with 5-HTP because it naturally converts it from L-Tryptophan. 100 mgs of 5-HTP morning and night could make a big difference. Some take 500 mgs but 100 mgs is a very safe start. 5-HTP should not be combined with Cymbalta. I add 200 mgs of L-Theanine. My new doctor was impressed that I found L-Theanine. Few consider it.

He could still take a lower dose of Neurontin. High dose Neurontin is known to effect memory function. I took 1200 mgs before bed for a few years then dropped to 900, 600, 300 and now just 150. My neuro was eager to get my dose lower.

Head impact like your hubby suffered often have a neck injury component. This can be a problem. It can effect sleep (poor sleep posture), breathing, blood pressure, slowed pulse, and more.

What kind of nerve pain does he have?

I have already over-dosed you so I'll save the rest for later.

Please know that we understand what you are going through. I wish we had a TBI caregivers forum, especially for wives. Their job is draining but they are often lifesavers. My wife attends a TBI caregivers support group at a local Neuro Rehab hospital. Here is a list of Michigan TBI support groups. https://www.biami.org/resources/support-groups/

My best to you.
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Old 02-04-2018, 08:44 PM #3
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[QUOTE=Mark in Idaho;1258586]mfurest,

Welcome to NeuroTalk. I am so sorry to hear what you and your hubby are going through. It appears he works in agriculture.

We live in a very rural area on 80 acres. My husband is a contractor who previously had his own business. He moved up to the Upper Peninsula about 8 years ago to live on the family property with his son. He does side jobs here and there, but mainly is the caretaker of the family property. He was out on the tractor on the back of the 80 acres clearing downed trees from the trails. He approached a tree that he thought was completely down, but it was still attached. When he pushed it out of the trail with the bucket of the tractor, the tree sprung back and over the bucket and struck him in the side of the face.


He was not knocked unconscious. He was able to get the tree off of the tractor and drive the mile back to the house. When he entered the house, he told me to call 911. To me, it appeared he just had a little road rash on his cheek. However, once the ambulance arrived and took us to the local hospital (30 min away) they informed me that his left cheekbone, orbital bone, and sinus cavity were all crushed. He had also broken his jaw in three places. They gave me the choice to have him transferred to Marquette or Traverse City. Then, an ambulance took us to T.C. We stayed there for two weeks, they reconstructed his face with titanium, and he was good as new, or so we thought.



It sounds like he suffered a left frontal lobe injury with the personality changes that come with that. Yes, this is the new him but it can be endured.

Yes, we have been told frontal lobe injury. We are still adapting to the new him. I think the hardest part is prior to the injury e was the classic textbook definition of ADHD. Now, his energy and motivation are just gone.

My first question is simple. How does he sleep? More specifically, does he breath smoothly and regularly when he sleeps? Proper sleep can be a big challenge. Without all of the full stages of sleep, fatigue will be a problem.

He sleeps...but never too soundly. One complication is that since we live in a rural area in the middle of the woods, we heat with two wood stoves in our home. So he is up a few times a night to feed the stove. That is one of our concerns as he begins Neurontin. The doctor prescribed 1800 milligrams. He wants me to administer 900 at dinner and 900 at bedtime. We are a little Leary after reading posts about the meds just making people. completely out of it. He wants to start with a smaller dose. Tonight, I gave him 300 at dinner and he wants 300 at bedtime. We will see how it goes.

Second, Read the sticky at the top about Vitamins. His injured brain needs extra nutrition to handle the many stresses a weak brain has to endure. The vitamin regimen on the first post has a link to an updated later post. The most important vitamins are the B-50 Complex, plenty of B-12. They are needed to strengthen the blood brain barrier that protects the brain from the body's toxins. Omega 3 fish oil is also very beneficial. Magnesium (citrate or other non mag oxide forms)

I agree with your concern about the Neurontin and Cymbalta. I've been on Neurontin for 16 years. I only take 150 mgs to help with sleep, muscle tension, jitters, active mind. I was on an SSRI for 14 years but finally got off it. I do much better without it. You may not like his 'not depressed' personality on Cymbalta.

I am going to pick up the Cymbalta tomorrow from the store. I am a little nervous, but he is so clinically depressed, that it is really impacting everyone in the house. Sex life? ugh...depressing. His love for all the things he used to like to do even if he has the energy to do them? Not around. How long does it take to see a difference with Cymbalta? He was on Lexapro, but we saw no change. The Dr. told us that sometimes with TBI, antidepressants don't work well...so we are eager to try, but we are not sold on the idea that this is the only way to fix this.



Head impact like your hubby suffered often have a neck injury component. This can be a problem. It can effect sleep (poor sleep posture), breathing, blood pressure, slowed pulse, and more.

Yes, there is a neck injury component to this big time. The brain injury clinic told us the neck is prob what is causing the nerve pain in his face. Although, it could also be due to the reconstruction in that side of his face. He gets a lot of pain around the eye where his orbital bone was reconstructed. He describes it as a constant feeling of immense pressure...like someone is grabbing at your face and either pushing in or out with 20 lbs of force...if that makes sense.
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Old 02-05-2018, 12:56 PM #4
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mfurest,

OUCH,

Has anybody suggested BOTOX for the nerves in his face?

The Cymbalta may make sex more problematic before it may get better.

I struggle to find things that give me a sense of pleasure. Anhedonia is a symptom of depression and frontal lobe injury. It is hard to tell which is the cause. I would expect his emotions to be all over the map. That is part of the injury. I had to learn to express myself differently. When the feeling do not come naturally, I have to use mechanical thought to form a memorized response. For example, when my wife come home, there is no feeling of 'glad to see you.' but I know that it is a good thing that she is home so I greet her.

This has been a lifelong struggle for me since my frontal lobe injury was in 1965. As a 10 year old, I could not understand why I suddenly lost all of my friends. My mother could not understand why she lost her sweet little boy. I did not start to understand this condition until about 15 years ago.

Learning memorized responses is very helpful. The stimulation received by positive responses to these memorized responses is very good. It appears as if our brains have forgotten how to respond in a pleasurable way and we need to practice to restore those memories.

I don't think the Neurontin is going to make it so he cannot wake up to feed the stove. It is more than Neurontin helps the body let go of tension than it puts the mind to sleep.

I used to have 13 acres next to the National Forest and I used a Case 450 to maintain defensible space and improve the land. I miss my tractor. It was a great way to keep my mind and body active. My Neurontin never stopped me from sensing the room was getting cold and it was time to feed the stove. Rarely did I sleep so deeply that I let the stove burn out.

Cymbalta and the like often take a few weeks to see full effect. Don't expect miracles. The first week may be confusing to you both.

Off to the Y to play ping pong.

My best to you.
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Old 02-16-2018, 10:43 AM #5
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Hi there, I am new to this forum as well and my boyfriend of 7 years was hit by a car while riding his motorcycle about 6 months ago. I don't have any advice, necessarily, but we are going through the same things - he is having a lot of anxiety and fear in situations that never bothered him before, big changes in his personality, like he is a different person. He says the same things about his moods being up and down. It is definitely having an affect on our relationship and I'm trying to find ways to better support him and also find happiness in a new situation. He is only 6 months out so I'm not sure if this will change as he continues to heal, but in the mean time, it has been difficult. He did see a concussion specialist who sent him to occupational therapy as well as a concussion-specialized psychiatrist, but he didn't feel that they were helpful. I think the depression is getting in the way of him getting himself up and to these appointments, but I don't find that nagging/pushing him works either. It's nice to know that there is at least someone out there who understands I hope you and your husband are able to find your happiness again.

Quote:
Originally Posted by mfurest View Post
Hello! I stumbled on this forum by accident, and I am so happy that I did. My husband was in an accident almost two years ago while on a tractor. A tree smashed his left side of his face crushing all of the bones on that side. While his physical appearance is exactly the same, he is no longer the same person.

He tries, but his personality and stamina are just not what they used to be. He says he feels like he has constant pressure in his head, the smallest tasks tire him out, and his moods are up and down dramatically.

We went to a brain injury clinic and were told he should go into 3-6 months of combined therapies, however it is hours away from home and we are not in a position to be able to make this happen. We live in the middle of the woods in a very rural area in the Upper Peninsula of Michigan and resources are not exactly close to us.

We saw his neurologist yesterday and heard for the first time what we really already knew deep down but have never heard it aloud. "You are healed from the injury, but you are not the same person you were and you will never be." UGH...tough pill to swallow.

Our marriage, our family, our lives have changed and in many ways, have been stressed emotionally to the max. We are trying to stick together and figure it out, but it is so tough sometimes. I am dedicated, however, to finding everything we can to make the most of what we have and find a way to find happiness.

The doctor said he has severe depression (not a shocker to either of us). He wants us to start Cymbalta (20 mg then work up to 30). He also wants him on 1800 mg of Neurontin (900 at dinner, 900 at bedtime). He says the Cymbalta will help with the depression and Neurontin with muscle pain/tightness, sleeping issues, and nerve pain. I've been reading a little about these drugs and am a bit concerned that he is going to have more issues from the drugs than he does now...

I'd love to hear other's experiences with all of this.
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Old 02-16-2018, 04:24 PM #6
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Katiess1128,

Welcome to NeuroTalk.

I'm sorry to hear about your BF. I understand what you both are going through.

Has he had a Neuro Psychological Assessment done? An NPA can be a big help at understanding his functions and dysfunctions. A Neuro Psychologist who works with a Neuro Rehabilitation hospital would be good. The generic 'concussion specialists' are not all many expect them to be. A couple of weekend seminars to qualify as an ImPACT certified specialist leaves a lot to be desired.

There are some resources you should try to find. Is there a brain injury support group that you can attend. BIAUSA.org has a database of support groups.

His personality may improve or he may be this way for a long term. He can learn to respond to situation based on memorized response rather than natural emotional response. He can learn that he may have a tendency to over-react to situations and that he needs to try to walk away to gather his thoughts. I'm not saying that these are his issues but they are common parts of personality changes due to brain injury.

One of the important concepts is for you both to accept that his brain is broken. Trying to push against his limitations is counterproductive. If he can be counseled to accept your help to get to appointments and continue with needed tasks, he will do much better.

He may be spinning in confusion and get frustrated with the tasks he needs to do. Lists, notes, a white memo board on the refrigerator can be a big help. You both need to figure out how he can function best.

If you could tell us more about his struggles in every area, we can be more help.

Many need to improve their nutrition to help the brain heal. The Vitamins sticky has a regimen worth considering. The first post has a link to a later updated regimen. The blood brain barrier get damaged and needs proper nutrition to rebuild.

Has he been prescribed any medications?

Every brain injury is different so finding what works for him will be unique to him.

My best to you both.
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Old 02-16-2018, 04:42 PM #7
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Quote:
Originally Posted by Katiess1128 View Post
Hi there, I am new to this forum as well and my boyfriend of 7 years was hit by a car while riding his motorcycle about 6 months ago. I don't have any advice, necessarily, but we are going through the same things - he is having a lot of anxiety and fear in situations that never bothered him before, big changes in his personality, like he is a different person. He says the same things about his moods being up and down. It is definitely having an affect on our relationship and I'm trying to find ways to better support him and also find happiness in a new situation. He is only 6 months out so I'm not sure if this will change as he continues to heal, but in the mean time, it has been difficult. He did see a concussion specialist who sent him to occupational therapy as well as a concussion-specialized psychiatrist, but he didn't feel that they were helpful. I think the depression is getting in the way of him getting himself up and to these appointments, but I don't find that nagging/pushing him works either. It's nice to know that there is at least someone out there who understands I hope you and your husband are able to find your happiness again.
6 months is early in brain recovery. He needs to expose himself to things that bother him in small doses so that his brain can habituate. He can most certainly improve. There are plenty of recovery stories years later after an accident. In order to recover though: consistent sleep, minimize alcohol use, cardio exercise. He may need a low dose anti anxiety to help even out the moods. Improving mood can improve outlook which can enhance recovery efforts.
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Old 02-16-2018, 05:03 PM #8
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Quote:
Originally Posted by Katiess1128 View Post
Hi there, I am new to this forum as well and my boyfriend of 7 years was hit by a car while riding his motorcycle about 6 months ago. I don't have any advice, necessarily, but we are going through the same things - he is having a lot of anxiety and fear in situations that never bothered him before, big changes in his personality, like he is a different person. He says the same things about his moods being up and down. It is definitely having an affect on our relationship and I'm trying to find ways to better support him and also find happiness in a new situation. He is only 6 months out so I'm not sure if this will change as he continues to heal, but in the mean time, it has been difficult. He did see a concussion specialist who sent him to occupational therapy as well as a concussion-specialized psychiatrist, but he didn't feel that they were helpful. I think the depression is getting in the way of him getting himself up and to these appointments, but I don't find that nagging/pushing him works either. It's nice to know that there is at least someone out there who understands I hope you and your husband are able to find your happiness again.
He needs to finish his therapy! It takes time for it to be effective.

People Who Suffer Depression And Anxiety After A Traumatic Brain Injury May Have Damaged White Matter

Also check out the link above.
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Old 02-16-2018, 05:14 PM #9
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TomAce,

Exposure therapy is not a tried and true protocol for PCS. It is not effective in many situations. What works for one person can be detrimental for the next.

Occupational therapy will not overcome the depression that is common after a brain injury. The White Matter study does not offer help to move forward.

It would be helpful if you posted your comments in one post. Even better if you used the Post Reply button at the bottom left so the previous post is not quotes. It makes scrolling much easier.
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Old 02-18-2018, 12:33 AM #10
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Mark in Idaho,

Thank you for the advice regarding the message board. I apologize for my multiple posts, for some reason I didn't think the first one posted. I will try to improve my posting etiquette.

I am not a doctor, and I do not pretend to be one. I do have a tremendous amount of experience dealing with multiple doctors, therapists, and other patients when it comes to PCS as well as a lot of personal research into the matter. Your point is noted, and I will try to soften my language, as you are correct, there isn't one solution for everyone's injuries. What is beneficial to some is not to all. However, I hope someone wouldn't blindly follow advice on a message board without consulting a doctor first. I do hope to offer another perspective- having multiple perspectives and different experiences is more beneficial than only one person sharing their opinion.

The article I sent does not provide a solution to anxiety or depression after brain injury. However, in my opinion, it does provide awareness for how someone may potentially feel after a brain injury. I certainly didn't understand the cause of anxiety and irritability I felt for the couple months after my injury, and I wish I had known there was a physiologic reason for those issues. The article was intended to shed a light on the cause of her boyfriend's anxiety. Sometimes being reassured of a cause for your issues can help you (at least it does for me, but I recognize it doesn't apply to everyone!)

I was not implying that occupational therapy would assist with depression. In this case, a concussion specialist advised that OT was needed and the patient decided very soon into treatment that it wasn't worthwhile. I would argue that it's better to continue therapy (as long as it's not detrimental) for at least the assigned period of time. We know that recovery from a brain injury takes a long time and immediate results would not be expected from any therapy. I personally have been conducting OT/PT for months. I've never seen a drastic improvement, but as I look back I am certainly more capable now than I was a few months ago.

Exposure therapy may not be tried and true for PCS. However, I would argue, it is a common mistake after a mTBI to isolate oneself while also not recognizing the visual and vestibular issues contributing to one's symptoms. These issues can be addressed (to a certain degree) by sound occupational and physical therapy. In MY experience (I am not talking about everyone), I've found that isolating myself leads to increased repetitive negative thoughts and a decreased mood. I've also found that actively partaking in therapy gives me a sense of control over my recovery, providing me hope for the future while also improving my mood. Additionally, interacting with friends and colleagues, even if only briefly, also proves to be beneficial for me.

Some people are also too aggressive in their return to work or previous activity level, which can worsen their symptoms. It's important to recognize when to take breaks and rest. Others may not benefit from exposure at all. Regardless, I would once again recommend someone to speak with a qualified doctor and ask what the best rehabilitation program is for them. Brain injuries, their symptoms and recovery, are highly individual.

This post has tried to be vague when it applies to everyone, and specific when regarding my experience. I hope it is perhaps helpful to someone, but I recognize it will not be helpful to all.

Mark, please let me know how can improve this post's content and etiquette so that I may not let down the board again. Thank you.
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