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


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Old 01-12-2011, 12:10 AM #11
Mark in Idaho Mark in Idaho is offline
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Not Emo,

At your age, your body is still settling into adulthood. Your hormones still need to get settled. The stress of college, especially freshman year could easily be triggering your symptoms. Add to that the hecticness of college life and you are ripe for relapse.

My empathy is with you as I hit college head on with a 4.2 gpa from high school, survived my first semester and crashed miserably the second. It took me another 3 or 4 years to start to understand my need to modulate stress in my life.

You should read the TBI Guide before the semester starts. It will be a great benefit to have it available for others to understand your situation.

When you get stuck, be straight forward about it. Say," I suffered a brain injury as a child and sometimes my brain just loses track of my thoughts or words." Most people are very understanding when you are up front about it.
You can add that "Stress just makes this problem worse so I try to ignore it and go on."

If you find an explanation in the TBI Guide that works, it can help to use medical terms. People believe medical terms even when they do not understand them.

Often, I get lost or stuck. I will say, "I have an auditory processing disorder from a brain injury." Or, "I have very limited short term memory function due to a brain injury." Either one works very well.

Now, go read the TBI Guide and memorize your explanations for when you stumble.

My best to you.
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Old 01-12-2011, 01:27 AM #12
sandralee_2162 sandralee_2162 is offline
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Quote:
Originally Posted by Xx_Not_Emo_xX View Post
So first a little background...when I was 3 months old my dad threw me because I wouldn't stop crying, skull fracture, coma.....long story. I posted here once about 8 months ago, but I think I had to deal with everything emotionally first. I think I've done that enough so now I want to figure out what besides my peripheral vision was affected.

There's one problem that's always frustrated me I'm beginning to think was caused by that, and its hard to explain. I've noticed sometimes I have trouble getting my thoughts into words. I usually know exactly what I'm thinking and I try to say it and I can't. It's really hard to explain. Most of the time it doesn't happen at all, but its a lot worse when I'm tired or frustrated/stressed, and when combining frustrated/stressed/tired with someone asking me a question that I have to think about a bit. Sometimes when it's really bad I can't even sort out the thoughts, and occasionally my mind just goes blank after a minute. Then I get frustrated which just makes it worse and I end up stressed out, angry and not being able to communicate or think right which makes it worse. Another aspect of it that's weird is it seems to be only talking, not just communication in general. It's not nearly as bad if I try to write or type in that kind of situation.

I don't know if that made any sense at all, but does anyone know if that could be caused by what happened? Thanks

I would go to a Neurologist ASAP
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Old 01-12-2011, 02:21 PM #13
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Rather than going to a neurologist, a better doctor would be a specialist in Physical and Rehabilitation Medicine. They often work at Rehab clinics. They will have access to the tests and therapists to diagnose and treat your issues. Most likely, you just need to learn some work-arounds and accommodations. Some therapists are good at helping you learn these. Others are clueless.

As I said earlier, your increased stress load is most likely the cause of your flare up of symptoms. Getting a good review of your hormones would also be helpful. There is a good referral system to find a doctor who truly understands hormones at https://www.womensinternational.com/..._referral.html

My best to you.
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Old 01-13-2011, 11:43 PM #14
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Quote:
Originally Posted by Xx_Not_Emo_xX View Post
I actually do rehearse things in my head before I say them, even entire conversations and thinking of how to respond to anything the person might say. Mainly because of shyness/social awkwardness (possibly social anxiety) but I also want to know exactly what to say in case I have trouble saying or finding the words, especially with someone that's not family.

My family hasn't read the TBI Survival Guide, though I will when I have time (college semester starting soon. fun...lol). As far as the rest of my family, none of this is brought up, ever. Especially around my dad. It's like their huge dark secret that's not a secret anymore, but still never talked about. But, I'm basically an adult now (18 next month) I can deal with this myself. Well, I have to. Thanks for the reply and the links

Hi Not Emo,

I rehearse things in my head too a lot. Sometimes it helps and sometimes I feel like it makes me stumble more. Also, I can get so involved in rehearsing things in my head and planning before I speak, that I feel disconnected from what's going in that moment. So I try to balance it.

Sometimes, if words aren't coming to me the way I need them to- I say "I just need a little time to get my thoughts together" or "I'm thinking a lot about what you just said and want to convey my thoughts clearly...it may take me a little time to do that" or "I'll think about that more and let you know." If it's a friend or family member that knows about the brain injury, I may just say "my brain feels foggy, I'm hearing what you're saying. Don't have my words together yet." Then there are the times when I just say "my brain feels fried."

It sounds hard with the situation with your dad. Just because you're about to officially become an adult, doesn't mean you have to handle this all alone. I hope you have friends or professionals who can provide some caring support to you. A lot of people have difficulties with their families, for all sorts of reasons (whether they have a brain injury or not!) and it can help to have someone to talk to and work through this stuff with.

What types of things are you most concerned about people asking that you won't know the answers to?
-Hazzell
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Old 01-14-2011, 01:00 AM #15
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Quote:
Originally Posted by Hazzell View Post
Hi Not Emo,

I rehearse things in my head too a lot. Sometimes it helps and sometimes I feel like it makes me stumble more. Also, I can get so involved in rehearsing things in my head and planning before I speak, that I feel disconnected from what's going in that moment. So I try to balance it.

Sometimes, if words aren't coming to me the way I need them to- I say "I just need a little time to get my thoughts together" or "I'm thinking a lot about what you just said and want to convey my thoughts clearly...it may take me a little time to do that" or "I'll think about that more and let you know." If it's a friend or family member that knows about the brain injury, I may just say "my brain feels foggy, I'm hearing what you're saying. Don't have my words together yet." Then there are the times when I just say "my brain feels fried."

It sounds hard with the situation with your dad. Just because you're about to officially become an adult, doesn't mean you have to handle this all alone. I hope you have friends or professionals who can provide some caring support to you. A lot of people have difficulties with their families, for all sorts of reasons (whether they have a brain injury or not!) and it can help to have someone to talk to and work through this stuff with.

What types of things are you most concerned about people asking that you won't know the answers to?
-Hazzell
Usually when that happens it's hard to even explain what's going on, ironically because of the problem itself. I'll usually just say I don't know or I don't care, although the frustration is obvious in my voice. I might be able to try the brain feeling fried explanation though, I don't know if I would be able to try the other explanations because they're longer, which would make them harder to say or think correctly. Maybe I'll try explaining this to some people when its least likely to happen (when I'm not already frustrated, tired, etc) so they don't get frustrated when this happens.

The situation with my dad will get much easier when I move out sometime next year, but yeah for now its tough. I would talk to my mom but certain details of what happened make me angry at her too, for example she didn't even divorce him. Most days they act like nothing ever happened. ANYWAY, I could talk to my best friend, she doesn't know but I could tell her if I felt like I needed to. She's always understanding and supportive, partly because she's been through alot of the same things I have (except for this).

It's not really particular things people ask and I not know the answer to that's the problem, its just random things that I at first don't know how to respond to and then it just becomes a huge mess of things making other things worse. Can't get my thoughts straight so I can't say the right words, mind goes blank, I get frustrated, not thinking straight gets worse....fun....lol

Thanks
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Old 01-16-2011, 09:32 PM #16
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Quote:
Originally Posted by Xx_Not_Emo_xX View Post
Usually when that happens it's hard to even explain what's going on, ironically because of the problem itself. I'll usually just say I don't know or I don't care, although the frustration is obvious in my voice. I might be able to try the brain feeling fried explanation though, I don't know if I would be able to try the other explanations because they're longer, which would make them harder to say or think correctly. Maybe I'll try explaining this to some people when its least likely to happen (when I'm not already frustrated, tired, etc) so they don't get frustrated when this happens.

The situation with my dad will get much easier when I move out sometime next year, but yeah for now its tough. I would talk to my mom but certain details of what happened make me angry at her too, for example she didn't even divorce him. Most days they act like nothing ever happened. ANYWAY, I could talk to my best friend, she doesn't know but I could tell her if I felt like I needed to. She's always understanding and supportive, partly because she's been through alot of the same things I have (except for this).

It's not really particular things people ask and I not know the answer to that's the problem, its just random things that I at first don't know how to respond to and then it just becomes a huge mess of things making other things worse. Can't get my thoughts straight so I can't say the right words, mind goes blank, I get frustrated, not thinking straight gets worse....fun....lol

Thanks
Hey Not Emo!

I know...it can be very hard to explain and help someone understand why you can't talk or express yourself clearly when you can't really talk or express yourself clearly. This has happened to me a lot and is pretty frustrating.

The longer examples I gave are things I've used in professional situations. The shorter ones I use more with friends and family. I think what you came up with about talking with people ahead of time can be very helpful. I've done this- and basically came up with a key word or phrase, like brain fried or disoriented or I'll think about it etc and so that when it happens, I can just say a word or two and the person usually gets it.

Not sure if this is helpful to you- but I've also found that I do better at talking when I'm in a quieter, less hectic environment and when I've had time to settle in with whoever I'm with and whatever setting I'm in. For instance, if I'm out to dinner with a friend and they immediately ask how I'm doing etc, I try to refocus on them for a while because I genuinely want to know how they are doing and I know with a little time my mind that just went blank will have thoughts that I can better express. Or I'll say, it'll take me a minute to get my thoughts together but I want to know about you- how'd it go with ____? Hope this makes sense.

These things help in many situations but there are still times when I feel frustrated or embarrased. And I'm trying to learn to not get as stressed about it- because stress just makes it worse. But it's a process.

I hope your friend is helpful about the situation with your parents. I know it can be really hard to have an issue that is so poignant and constantly there be treated as if it doesn't exist.

I hope you had a good weekend!
-Hazzell
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Old 01-17-2011, 11:26 PM #17
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Quote:
Originally Posted by Hazzell View Post
Hey Not Emo!

I know...it can be very hard to explain and help someone understand why you can't talk or express yourself clearly when you can't really talk or express yourself clearly. This has happened to me a lot and is pretty frustrating.

The longer examples I gave are things I've used in professional situations. The shorter ones I use more with friends and family. I think what you came up with about talking with people ahead of time can be very helpful. I've done this- and basically came up with a key word or phrase, like brain fried or disoriented or I'll think about it etc and so that when it happens, I can just say a word or two and the person usually gets it.

Not sure if this is helpful to you- but I've also found that I do better at talking when I'm in a quieter, less hectic environment and when I've had time to settle in with whoever I'm with and whatever setting I'm in. For instance, if I'm out to dinner with a friend and they immediately ask how I'm doing etc, I try to refocus on them for a while because I genuinely want to know how they are doing and I know with a little time my mind that just went blank will have thoughts that I can better express. Or I'll say, it'll take me a minute to get my thoughts together but I want to know about you- how'd it go with ____? Hope this makes sense.

These things help in many situations but there are still times when I feel frustrated or embarrased. And I'm trying to learn to not get as stressed about it- because stress just makes it worse. But it's a process.

I hope your friend is helpful about the situation with your parents. I know it can be really hard to have an issue that is so poignant and constantly there be treated as if it doesn't exist.

I hope you had a good weekend!
-Hazzell
Thanks, hope you had a good weekend too

If I ever do tell my best friend I know she'll be helpful. Not necessarily with my parents or anything but I can talk to her about anything.

Bit of a rant here:
I keep thinking of other things that might have been affected by what happened, for example I've lived in the same very small area for about 6-7 years and I've just recently memorized how to get to karate which is 10 minutes away. I can't think of anything else right now, but there were other things I thought of. I can't stop picturing how what happened must have looked like. I may need to take a break from trying to figure things like this out. My semester hasn't started yet and I'm already stressed to the point of struggling to avoid certain self destructive things that I decided to stop this year. Once the semester starts that will probably just make things worse. So I might need to take a break from here for a bit. I'm sure I'll be back if I do.

I really appreciate everyone's replies, they've been very helpful and if I'm not on here for awhile I'll be back
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Old 03-04-2011, 02:07 PM #18
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Hi Xx,

Yeah, malls can make me a little crazy!
That's great that playing music helps you! I have a guitar but don't know how to play it- yet. I find listening to music helps me sometimes. Also writing, light movement. I've also noticed for me what I eat can make things better or a whole lot worse. Singing and laughter also seem to help- all of it when it's quiet and I'm away from chaos.
-Hazzell
Hit my head on the car window in a collision 1.5 months ago and now I'm dealing with the noise/light sensitivity, spaced-outness, clumsiness, and especially.... HEADACHES!! I was wondering which foods make it better/worse?
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Old 03-04-2011, 08:52 PM #19
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Avoid caffeine and food that may cause your blood pressure to increase. Some PCS headaches are due to residual neck injuries. The muscles from the neck to behind the ears can spasm and cause head aches.

Overdoing it with work or other stimuli is a big cause.

Food alone is not the usual and/or long term cause. Many factors can come into play.

Many of us are on vitamin and other supplement regimens to help our brains tolerate the PCS and stress.

Tell us more and we may be better at understanding your situation.
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