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


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Old 07-03-2018, 08:44 PM #1
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Hello. I've been reading the TBI/PCS forum for about a year now. The concussion that sent me over the edge happened almost a year and a half ago now.

My story is similar to many I've read on here. I don't even want to discuss anything I did prior to brain injury, because it doesn't fit now. I feel suicidal daily. I knew there was never a "quick fix" or "fix" at all for this, but I have been many places for therapy. I can list them or address them, but would clutter this message.

My dad called the police on me today for a suicide check. We got into a huge argument and he was the last person that I had still around since the brain injury.

I struggle with a lot. I always have head pressure/headache/sick feeling, even just waking up in the mornings I feel worse than hungover. Anything slightly mentally stimulating makes me feel re-concussed. Stores are hell, I can't keep up with more than one person conversations and and no way if background noise. I can't follow even slightly complicated conversations.

Reading comprehension is poor and I start to get swimming in the head. The spell checker got me through this message. Math is poor, directions too. I could go on, but don't want to put too much into one message.

I haven't joined this forum because I didn't know what to say. This is by far the hardest thing I've ever had to endure. I'm no slouch either.

I'm struggling to hold on. If anyone has come to find some happiness after brain injury can you please share?
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Old 07-04-2018, 12:13 AM #2
Mark in Idaho Mark in Idaho is offline
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BrainBoost7,

Welcome to NeuroTalk.

What have you been doing this past year and a half?

Do you work, go to school, on assistance/disability?

Staying active from a mind perspective is important. Finding that low stress activity can be a life saver.

Integrating PCS into daily life with work-arounds and accommodations can be important.

Please tell us about your injury, your struggles/symptoms, any diagnostics and treatments you have had and any progress you have made.

My best to you.
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Old 07-04-2018, 12:58 PM #3
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Hello Mark. Thank you for responding. I had to take a break from typing/computer. I was trying to respond earlier, but composed a message twice and lost it.

For the past year and a half I have been seeking out ways to cope/heal/deal with brain injury. On my own I do brain games, memory games/tricks, practice reading, and try to stimulate/but not too much my brain. I read about other brain injured people and try to see what has helped them.

I get a monthly disability check from the VA, but it's not much. I've been close to homeless many times since brain injury. After the military I went to PA (physician assistant) school and graduated. I got back to back brain injuries after school. One in a horrible car accident, then fell and hit head on cement.

My symptoms are that I feel constant pressure in head/hungover like feeling. My short term/working memory is horrible. I cannot even track my own thoughts, they disappear on me constantly. It makes me feel like I am going crazy. I have problems with people's names/names of things.

My brain will not work and I start to get sick if I am trying to think with background noise or too many people in the conversation. Reading can make me feel like my brain is swimming, same with computer use. I just cannot follow if something is even a little complicated. I feel like I cannot see the big picture. I have problems with directions. There are other things, but I cannot explain.

I've been to different medical facilities. UPMC - Mickey Collins, Dr Cantu in Boston, Neuropsych testing, vision and vestibular therapy where I live in Utah.

I'm sure this sounds crazy, but I just wanted to try everything. I figured I would spend whatever little money/effort I had to see what was out there, but have been mostly disappointed.

Dr Cantu offered an exercise program for a study they were doing, but I would have to pay to stay in Boston for 6 weeks. I have been able to exercise on my own for quite a while. He offered no other therapy, because he said it would interfere with the exercise/lactic acid build up study.

Mickey Collins may be able to help with vestibular/vision, but his therapy/treatment is too simplistic for anything else.

These are my opinions/experience. I can go into more if anyone wants to know.

There is a new program at University of CO in Aurora. It is the Marcus Brain Institute. They work with veterans and civilians too. I have been in contact with them.

I think mostly through all of this I have found what I already knew. I know what is different/not working well in my brain, better than anyone. A lot of the medical world is horrible in dealing with brain injury. Another brain injury friend told me "you know your brain better than anyone, you know what to work on". He has had his for 8 years.

I still feel suicidal a lot though.

I am mostly wanting to work on cognitive therapies/work arounds. I also feel like if I could tolerate a little more noise/visual stimulation I could feel more like I am not in prison with my brain and be able to participate more in life. I am hoping to focus on these.

Driving does not bother me anymore and I don't feel like I am in a dream like I did the first few months after brain injury.

I have totally lost my identity.

Sorry if this is too long. Much respect for those of you going through this and hanging on.
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Old 07-04-2018, 04:15 PM #4
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Sorry to hear you are struggling so.

I have had or still have many of your struggles.

I can be thinking about something then, poof, it is gone. I do my best when at my computer. It is my short term memory. I can reread what I have typed to help me get back on track.

My short term visual and auditory memory is in the bottom 10% of the population. I don't even try to remember unless I took an effort to store the memory. I need to write things down. I send myself emails as reminders.

What did your NeuroPsych Assessment report say? Where are your diagnosed weaknesses?

I carry foam ear plugs when I go out. I wear a hat to block bright lights from above. I know what restaurants I can tolerate. I have learned to sit at a wall or corner so the sound all comes from one direction. Background noise is a killer for me.

Have you considered whether you have an upper neck injury? I call them subtle neck injuries because they do not have obvious symptoms but they interfere with blood flow and nerve conduction.

How is your sleep? Do you wake refreshed or with foggy brain? Quality sleep is the most important part of recovery.

Are you taking any meds, vitamins or supplements?

My disability check sucks, too. Not VA. Just SSDI. I was very successfully self-employed but needed to drive to customers. I cannot tolerate traffic chaos and still drive safely. I drive rural roads but not much in town.

I moved to Idaho from San Jose to get away from the chaos. Then, I suffered a second injury 6 months after moving.

It sounds like you are still struggling to be the old you. It is a challenge to accept the new person and let go of the old person. Research shows it is best to accept the new person and build within those limits. 'Build within those limits' is not an oxymoronic phrase. One can do amazing things using the new standards.

Taking inventory of your capabilities and limits can help you invent the new you. You appear to know where you struggles are. What are your strengths?

You are in good company. Most of us fully understand what you are going through.

My best to you.
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Old 07-05-2018, 12:46 PM #5
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Hello. It is nice to know that there are others who deal with brain injury, even though I wish none of us had to. It seems like you can try to explain what brain injury feels like to people, but they never truly get it. The only way to "get it" is to have one and then you can't do anything but get it.

I just ordered a hard copy of my Neuropsych testing. I was given the results over the phone, so ha ha, I don't remember much of it. I do know that it was much of what I already knew from living with it.

I have been texting myself to try to help with working memory. If I have a thought that I want to ask someone later or look up or a word I am struggling with I will text it to myself for later. I wish I could hold it in my head, but one thought only and even that can disappear.

I have had a neck xray. I was told about some degeneration and straightening of cervical curvature. I was also told that my head was not on straight. In some neuro rehab they told me to look at them straight on. I did this. Then they said my head is tilted. I did not believe them until they showed me in the mirror. Maybe it has always been this way? I know my head tilts to the right when I think it's straight. When I got in my car accident I was T-boned on my left side and ended up knocking down a fence and in someones front yard. So maybe the impact? Or bad blood flow. I had to physically grab my hair after the accident in order to lift my neck out of bed. The front of my neck was so painful.

I do wake up feeling not rested. Many days I wake up with head pressure/headache and hungover like feeling. I wake up in the middle of the night a lot. I have difficulty falling asleep. I am trying to work on this. When it is just me and my brain with the dark I can get feeling panic. I will lose the train of thought, words, memories and want to get out of my body. I used to really just love to kind of "day dream" before bed or get lost in my thoughts. Now I feel literally lost.

I don't take any meds or supplements. I have looked at the vitamin thread. I was spending a lot of money on vitamins at one point. I just don't have too much money.

I have thought about moving into the woods. I really get as much peace there as possible for me. I cannot do busy, noisy, chaos.

I am definitely still grieving my losses. I would like to give myself some compassion though and try to work with the new me and see what happens.

I will try to do an inventory on what I still have. I know now I see more things that I would have missed before. I was just too busy. I see a person struggling in a motorized wheelchair to reach something. I see someone with a noticeable disability and try to think about their struggle. I see how everything is just going so fast and so was I before. This forces you to slow down and notice things more, so I think that is a good thing.
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Old 07-05-2018, 01:02 PM #6
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Wow, the tilted head thing is most likely fixable with upper cervical chiropractic.. MDs do not study this ..and rarely suggest it ,, the old MD vs DC controversy..
How about your shoulders, hips, knees are they all tilted or uneven? Same thing c1 c2 is out of alignment.. it all follows as body is trying to rebalance the weight of your tilted head on the spinal column.

Up C Spine has great info..
SIGN / SYMPTOM CHECKLIST
Up C Spine - A New Approach - Sign / Symptom Checklist
videos on you tube to show examples..

Some regular chiros can treat at a lower cost ( no fancy equipment to pay for ) if they studied it and use visual & leg length checks.
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Old 07-05-2018, 03:46 PM #7
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The tilted head may or may not have any relation to a subtle neck injury. The inflammation of an unstable neck can interrupt blood flow or nerve signals. Sleeping posture can make a huge difference. For some, an upper cervical chiro or PT therapy can help but personal discipline to sleep in good alignment is the key. A upper cervical treatment can be ruined by a night of bad posture.

The minimum of vitamins is affordable and valuable. B-12, B-50 Complex, D-3, Calcium-Magnesium, Omega 3 fish oil. Curcumin concentrate can get expensive but is worthwhile.

The need to lift your head suggests you strained the muscles in the front of the neck. This is usually in a whiplash injury. I've experienced if from whiplash. It just indicated neck strain.

I found my best sleep was in a recliner with my head supported so it does not roll to the side. Finding that best position can be a challenge but pay the most rewards. After learning to sleep on my back, in a recliner, I can now sleep on my back in bed and wake up in the same position. I usually wake up alert and rested.

There are lots of notes and alarm apps on smart phones that can help with poor memory. I don't use a smart phone because I lose things easily because I forget where I set it down. I have a flip phone that I keep on a lanyard around my neck.

I think there are many things you can learn so you can do more with your life. You just need some help figuring them out. Learning memory work-arounds and sound/voice accommodations are the most important.

What do you do to accommodate sounds and voices?
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Old 07-06-2018, 10:28 AM #8
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Thank you for the reply Mark.

I will work on the sleep posture to see if this helps and thanks for the affordable vitamin regimen.

I am not sure what to do about the sound/voice accommodations. I wear earplugs sometimes. Yesterday I just had just one in all day because I had to go to a car shop with a lot of background noise. I really struggle with noise distraction. I had to sign a paper and the guy wanted me to sign multiple times while he was explaining the document and I can't listen and sign at the same time.

I try to work around this by letting people know, like family, that I can't have a conversation with the TV blaring. This has gotten me into arguments with family multiple times. I try to tell them and explain about how brain injury does this. It seems like some just think I'm being difficult and next thing you know the TV is blaring and they are talking to me again until my head is swimming. I have been told that it is their house and they will do whatever they want and to quit feeling sorry for myself. This example and worse reasons are why I don't speak with my mom. I have asked her to read about brain injury and she won't.

I guess what I am trying to say is that I feel like if family won't try to work with me a little bit, then trying to have a stranger understand would been impossible.

Anyway. I'm not sure how to make it so I can participate more in life. I feel very isolated because of my lack of ability to be around much noise. I would love if I could be able to be out more, socialize, etc. Any advice or things that have worked for others would be greatly appreciated.

I am going on a road trip, so I will only have phone access. I hate typing/sending messages from my phone, but will try. Thank you.
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Old 07-06-2018, 05:09 PM #9
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Do you have access to a WiFi pad/tablet? Many smart phones can become a Mobile HotSpot so you can use a pad/tablet with a better keyboard.

Tell you family you have hyperacusis. That is the medical term. It is the most common struggle people with brain injuries have.

Tell them, "If you want to talk or discuss something with me, we need to step outside or into a quiet room."

You need to learn to just walk away from the noise. Or, put the foam ear plugs in if you need to be where the noise is.

The TBI Survival Guide at TBIGuide.com is great. It is 84 pages to print but a selective printing of the pertinent pages can be worthwhile.

BrainLine has a good page that is simple to read. Lost & Found: What Brain Injury Survivors Want You to Know | BrainLine

Use the print function in the upper right so you can hand a copy to your family members.

Check out BIAA to find a local support group. Find BIA | Brain Injury Association of America

Support groups can be a life saver.

Just know that we understand.

My best to you.
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Old 07-07-2018, 04:13 PM #10
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Thank you for the advice Mark. I really appreciate it. I know it takes time and brain energy to respond, so I appreciate it even more.

I will try to see if I can get family to read more about brain injury from the resources you provided.

I also just need to advocate for myself and if people can't work with this, then I guess I don't need them.

I am typing this on my phone and need to get a better set up. I am traveling in Colorado mountains with poor reception. It's beautiful though and I don't even need earplugs here.

My living situation/location has not been too stable, so I haven't gotten into a real long term brain injury support group.

I'll check back when I get to a better reception/typing situation.

Thank you Mark. I wish anyone reading this a peaceful day.
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