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.

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.

Thank you for replying!
 

[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.

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.

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.

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.

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.

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.

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.

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.

The is a big difference between the exposure as therapy protocol and the moderated return to life that most suggest. Few support the idea of a dark room and retreating from stimulation.

Most, especially here, understand that concussions increase the tendency for anxiety and depression. The challenge is that many are predisposed to anxiety and depression prior to their concussion. These people have a serious struggle. They often are reluctant to accept the negative impact anxiety has on their recovery. When they accept that their depression and/or anxiety needs attention in order to move forward with recovery, recovery usually starts to happen. Getting stuck in the mud of depression and/or anxiety not only prolongs recovery but it can make symptoms and disabilities worse.

Many doctors and other professionals see concussions as an industry and want to over treat. OT, VT, ST, and PT can be over prescribed, often in a shotgun method. The challenge is the common goal of therapists trained in using metrics to chart improvement or lack thereof. This can be anxiety inducing. Many in the concussion industry push the idea that every symptom needs to be treated versus many symptoms need to be allowed time to heal.

Our modern day impatience of 'Doctor, fix me, now.' only makes recovery more of a struggle. Many of the best recoveries come when the person has learned patience. They have ah ha moments when they realize, 'Ah ha, I haven't noticed xyz symptom in N weeks.' or 'I forgot my ear plugs and was able to handle the noise of that restaurant.'

Journaling, whether personally or having a therapist or doc continually ask about symptoms can get in the way.

As I often tell people. Stop checking to see if you have any symptoms. But, therapist usually start every session asking about symptoms.

Other than being a form of hand holding for the concussion patient, there is not much evidence that shotgunning therapies improve recovery times. But, the concussion industry knows they can bill for these therapies.

Taking a slower and individual approach often pays more recognizable dividends. Vision can cause balance issues that get a vestibular therapy focus. Without resolving the vision issues first, the vestibular issues can persist and become frustrating.

If you spend some extended time reading about the experiences many NT posters have with 'concussion specialists,' you would see why a generic referral to OT is just that, generic. OT can do more to help a patient understand that their symptoms are real and to not fight them than to provide a healing therapy. Many with PCS are confused as to whether they are some sort of crazy or they have valid dysfunctions.

Experts have found that accepting and having a basic understanding of what these strange symptoms are so that one does not fight against them but instead moves forward by moderating them is the best way to improve.

btw. I have had PCS for 53 years. I have been under a doctor's care for concussions since 1994. I have been researching concussions seriously since my last in 2001. I have seen hundreds struggle with doctors and therapists, especially the shotgun approach. The common experience is less therapy is usually better. Understanding our symptoms so we can seek targeted therapy is usually best. Baby steps are often needed.

Mark,

That is a great post. I wish I had seen that in the early stages of my injury.

I was not over-prescribed therapy initially. I was quite the opposite in that I saw doctors who didn't really give me much guidance other than "time". I was not told how the injury affected me, and at the time I did not understand the anxiety associated with it. That is why I shared the article.

It has been my experience, that more people tend to be under-treated than over-treated. I can't imagine where I would be right now if I had followed my first neurologist's advice. But I agree with your comment about "shotgun therapy".

I could not agree more regarding being too focused on one's symptoms. That has been a challenge for me... how can I not focus on my symptoms when they're in my head?! But I have had a few of the "aha" moments you described.

I've spent a good deal of time reading messages on this board before I even posted. I'm sorry for what you've been dealing with for so long. Clearly you are very knowledgeable on the topic.

I understand that he needs to complete his therapy and I am doing what I can to convince him of that but at the end of the day I cannot force him - I'm looking for other advice and resources please.

Hi. I'm new to the forum and haven't ever really talked to anyone about my TBI experiences. It's definitely been a long road.

I got my TBI when I was a teenager, and was unconscious for quite a while and then developed chronic migraine and depression after. I spent a night in the clinic and got my face closed up and they woke me up every half an hour, but after that I went back to schoolwork and sports the next week, which we now know isn't what you are supposed to do. Unfortunately, I'm pretty stubborn and love to be active, so through sports, I managed to sustain 3 more concussions before I stopped being so active. If I could say one thing to people who have gotten a TBI or a serious concussion it would be to take the advice of their health care providers seriously and take the time off after the first brain trauma and also protect their heads and stop getting more concussions in the future. I didn't get another TBI, but I definitely messed my head up.

I have been pretty religious about trying to stay in shape, exercise, eat well, and do what I can. That said, since the TBI I have suffered from depression, low mood, and chronic migraines. The migraines most often center around where my TBI was. I am on preventive therapy for them with topiramate and emergency therapy with some mild pain medication and triptans when needed, but due to work I rarely can take the latter ones. I try to stay hydrated and exercise. For sleep I tried sleep meds for a while but they messed me up so now I use melatonin instant dissolve tabs every once in a while.

I have a hard time focusing and sleeping, and can be a bit moody. I am an ENTP (myers-briggs) which means that with that personality type I am a direct and un-emotional person anyhow, but I think that the TBI may have worsened some aspects of my personality. It is hard to say - I definitely am not risk-averse and am pretty direct and emotionally blunted.

In terms of meds, I would say be completely candid with your husband's doctor, and don't be afraid to "start low and go slow" especially with mental health and sleep medications. Often prescribers push straight to higher doses when lower ones would work with less side-effects. Also, don't be afraid to push for medication changes if some meds don't work well or have bad side-effects. There are lots of options out there.

I have started neurofeedback and TENS therapies which are interesting. I felt especially from TENS immediate changes, but not permanent. I need to go back as I didn't finish the treatment.

It is frustrating I think to not function at my highest level. It is also strange because when I have migraines I can't think or function, so I am on the topirimate, but as a side-effect it causes cloudy thinking, so I'm not at my mental best. But of course without it I'm not at my mental best. With the TBI I'm not at my mental best, but would it be better without the topirimate? I went off it for a while but the headaches were almost debilitating. Hard to know. People tell me I'm smart but I feel like I am a pretty muted version of the self I would be without the TBI. Not that I can rewind though.

Anyhow, sorry for the long post. Nice to meet you all.

Sehah,

Welcome to NeuroTalk. If you have any symptoms that you could use some help with, please feel free to ask. You can start your own thread is you want.

As you have already experienced, migraines are a big challenge. Some have found there can be an upper neck isue that can trigger migraines.

My best to you.