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


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Old 05-18-2012, 03:29 PM #1
xxxxcrystalxxxx xxxxcrystalxxxx is offline
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Well the last couple of months have really been taking it's toll on me. I have been inpatient to get my medications adjusted. I was told I would have cognitive and mood issues for the rest of my life. It'll be a year in July and just now are people starting to realize just how much PCS has effected my life. I cant drive. I'm on alot of meds and I keep bumping my head or falling and giving myself concussions. I am recovering from one this week. I'm discouraged. I was told to give it another year and some therapy and see if my "totally disabled status" into partial but I dont think it's going to happen. In order to stay "stabalized" I need to be on meds that I cant drive on. The painkillers are also scary. It has declined my cognitive functioning but my mood is better and I'm not thinking bad thoughts anymore. Where do you draw the line here? I'm scared and unsure about how to approach at my next therapy appt. I was told last week if I didn't slow down like I was in the hospital he will put me back so I can rest. I have to nap 3 two hour sessions to give my brain time to heal. I'm so confused. Any feedback will be appreciated no matter how much I may not want to hear it. lol
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Old 05-18-2012, 03:50 PM #2
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Crystal,

I'm sorry to hear about your continued struggles. Is there some way you can set aside a good length of time (months, maybe even a year or more) to just rest and recover and live a very low-key life with minimal obligations and sources of stress? Can you delegate some key responsibilities to others during this period, with the understanding that you this will benefit you and your family in the long run (i.e., by allowing you to maximize your recovery)?

I have been extremely lucky in that I have been able to do this over the last year. My significant other has been incredibly patient and understanding, and has helped create a (temporary) protected, low-responsibility, low-stress environment for me. I still have a ways to go, but this has made a big difference in my recovery.
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Old 05-18-2012, 03:57 PM #3
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I wasn't able to drive for more than a year after the concussion I sustained and it had nothing to do with medication (because I wasn't taking any). I'm still not able to drive on the freeway because my brain can't process all the pieces fast enough in order to drive safely.

But I am able to drive short distances on side streets now. It took about 16 months for me to be able to drive on side streets for short distances.

It was only after I started going to speech therapy, a year after sustaining the concussion, that I got better and was able to function well enough to do so.

Just do what your Dr. says and take it easy. Take the naps you need.

Go to therapy and see if it helps you to recover.

Did he say whether physical therapy might help you get out of the pain you're in that necessitates the pain meds you are taking? Physical therapy helped me too.
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Old 05-18-2012, 03:57 PM #4
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Quote:
Originally Posted by xxxxcrystalxxxx View Post
Well the last couple of months have really been taking it's toll on me. I have been inpatient to get my medications adjusted. I was told I would have cognitive and mood issues for the rest of my life. It'll be a year in July and just now are people starting to realize just how much PCS has effected my life. I cant drive. I'm on alot of meds and I keep bumping my head or falling and giving myself concussions. I am recovering from one this week. I'm discouraged. I was told to give it another year and some therapy and see if my "totally disabled status" into partial but I dont think it's going to happen. In order to stay "stabalized" I need to be on meds that I cant drive on. The painkillers are also scary. It has declined my cognitive functioning but my mood is better and I'm not thinking bad thoughts anymore. Where do you draw the line here? I'm scared and unsure about how to approach at my next therapy appt. I was told last week if I didn't slow down like I was in the hospital he will put me back so I can rest. I have to nap 3 two hour sessions to give my brain time to heal. I'm so confused. Any feedback will be appreciated no matter how much I may not want to hear it. lol
I don't really have any advice for you, Crystal, but I'm right there in front of you/next to you...coming up on a year next month. My cognitive symptoms/speech/expression is still very much screwed up, my personality is changing all the time and I, too, am unable to drive. Not because of medications, but because it takes a toll on my brain and causes even worse cognitive symptoms. I'm in therapy but it only seems to be helping with my anxiety and my mood. I've been very positive since I started the program, but my cognitive stuff has worsened.

Anyways, I know I said that I didn't have any advice for you...but, I do. Stay positive. I know being in this position sucks, I'm pretty much in the same position as you, but there is nothing we can do to change it. My counselor told me...you can either be a victim or a survivor. The choice is your's. Its a battle everyday to accept "what is", but once you conquer that...you can move forward in life with confidence.

There is life after a brain injury. You just have to put the pieces back together. You can do it...

Nick
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What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
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Old 05-19-2012, 06:38 AM #5
xxxxcrystalxxxx xxxxcrystalxxxx is offline
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Thanks everyone for continued support. It means alot to me. I think my family is just starting to understand that just cause I "look" good doesn't mean that's how I feel. Today I'm supposed to go to my mom's house. My head is whooshing and hurting. I dont want to cancel cause that's what I always do and I'm lonely at home. See how this goes? I guess in the end I will have to.

I am fighting with workman's comp to get into the Easter Seals rehabilitation program. I'm so excited/nervous. My time at the hospital was full of flourescent lights. ouch.

I have been slowing myself down. I only allow one walk a day if I can handle it. Yesterday I went to the park that's it and today...well you know.

Thanks all for supporting me. I try to write more but another side effect of the meds is the blending of the computer screen. Happens on the road too. Good thing I dont drive lol.
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Old 05-20-2012, 03:56 PM #6
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Hi...I feel your pain, and can relate. I guess that is why we are all here. just know that too.
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Old 05-20-2012, 06:21 PM #7
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Quote:
Originally Posted by xxxxcrystalxxxx View Post
Well the last couple of months have really been taking it's toll on me. I have been inpatient to get my medications adjusted. I was told I would have cognitive and mood issues for the rest of my life. It'll be a year in July and just now are people starting to realize just how much PCS has effected my life. I cant drive. I'm on alot of meds and I keep bumping my head or falling and giving myself concussions. I am recovering from one this week. I'm discouraged. I was told to give it another year and some therapy and see if my "totally disabled status" into partial but I dont think it's going to happen. In order to stay "stabalized" I need to be on meds that I cant drive on. The painkillers are also scary. It has declined my cognitive functioning but my mood is better and I'm not thinking bad thoughts anymore. Where do you draw the line here? I'm scared and unsure about how to approach at my next therapy appt. I was told last week if I didn't slow down like I was in the hospital he will put me back so I can rest. I have to nap 3 two hour sessions to give my brain time to heal. I'm so confused. Any feedback will be appreciated no matter how much I may not want to hear it. lol
No don't ever drive on pain-meds/good call. It's been a little over 2 years since my last brain surgery and I'm just now starting to drive. I only take short trips for food and an occasional bank-stop. Still I take a cell phone and a note with exactly where I need to turn an a map (I'm new to this area). I understand that bad feeling of losing driving privileges, you feel tied down.Also I find I need alot of good sleep and I need to be fully alert before I even think of turning that key! You gotta think of others safety too!..It took me a long time to get it through my head that I need/my BRAIN needs to heal. All those little tiny neurons in there are still trying to re-connect.Takes time, a good diet, exercise, and most of all plenty of rest.
I wish you well an best of luck.
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