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


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Old 01-03-2013, 07:03 PM #1
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Default 19 months and still progressing in the wrong direction.

19 months post-injury with no lasting improvements.

This is sooooo confusing....I really dont know what to do anymore. I cant seem to put together more than one or two "good days". Ive gotten to the point where I cant even schedule doctor's appointments because Im struggling so much with my communication. I feel like I dont know what to say and I talk over the person on the phone. Every once in awhile I will be able to hold a conversation but then I will feel like I dont know to end ot properly. My memory is destroyed....UGH...Absolutely destroyed. Word finding has gone from simple word finding difficulties to hardly being able to put a proper sentence together. My social life is diminished....I noticed my FB friends dropped from 200+ to 180 or so. People are deleting me because I dont even talk to them. Its not that I dont want to talk to them, I just dont want to embarrass myself or I dont know how to hold a conversation anymore.

I wake up disoriented everyday. You could ask me who the president is or what year it is and I literally will not be able to answer you. It takes about 10-20 min to gain my bearings.

Every time I find something that helps, such as playing a game or having a new attitude about my condition, it only works for a very short time before it starts making me worse.

I used to be able to relate to anyone. I could always hold a conversation about anything and make people laugh. Even after the injury. This started to fade away as the months went by and now it's gotten really "effing" bad.

I now have physical symptoms that werent there before. It feels weird to walk...its like my brain is sending the wrong signals to my body parts. I had trouble filling out a simple form yesterday. My writing is jacked up....I was mispelling words, screwing up punctuation, the pen felt weird in my hand and my writing was hardly legible. This is not me and wasnt me even immediately after the injury. This is new stuff that wasnt there before.

I sound like an effing cry baby....I know...but this is the only place I could vent and cry out for help and people will actually listen or relate.

My recovery has been so much different than everyone else. Im happy for everyone making progress and feeling a little better as the months go by...but its depressing to know there isnt very many people out there who is experiencing what Im going through now. I just want to get better....My son needs me at 1000 percent.

Ive tried just about everything. What now?
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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 01-03-2013, 07:35 PM #2
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im sorry to hear all that dude, I can relate to the socializing problems, I used to be able to crack everyone up and hold good conversations, now I seem to only have a couple word replies and don't really know how to end conversations as well as having trouble expressing myself besides saying I feel like shizz

sorry I don't have any advice but I understand what your going through man
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Old 01-03-2013, 08:54 PM #3
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Default Cognitive Behavior Therapy?

Dude~

Most medicaid will pay for cognitive behavior therapy....I am waiting to start in March.From my understanding it will help with a lot of different things....that's what my neurologist told me. Maybe try that route if you have not.

Hope you find this helpful
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What Happened: In 2011 I was in a MVA
.


Symptoms: Physical: I am always cold in any season!!I cannot tolerate anything pressure on my head(sun glasses,hats)longer then a hour,Lock jaw/Displaced TMJ, Dropsey, Hands go numb, Arms go numb, back of head numb (when asleep),Muscle spasms in face & upper body,migraines, concentration headaches, dizziness, nausea, neck and back trauma (from accident), tinnitus, extreme light sensitivity, noise sensitivity, EXTREME fatigue, impaired vestibular system, balance off, Pupils NEVER equal, disrupted sleep cycles,speech problems.

Cognitive: Cognitive Behavior, Brain fog, impulsivity, speech problems, word finding problems, slowed processing speeds, impaired visual memory, impaired complex attention

Emotional: Unable to handle stress or overstimulation without getting extremely irritable or angry, easily overstimulated, MAJOR depression, major anxiety, Panic attacks

Treatment so far: Treatment for PCS,PTSD,Depression & panic,Vestibular therapy, Physical therapy, Vitamin Schedule,Walking,No Dairy, No eggs, No caffeine, No artificial coloring, Sleep with 2 pillows, Very little sugars consumed, Eat healthy,No alcohol, Medications, limit stress and overstimulation.

~*~Learn to treasure yourself and your Divinity. Be willing to accept yourself completely. Be yourself, be graceful, be kind, be wild, be weird ... be true to yourself~*~
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Old 01-03-2013, 09:29 PM #4
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Nick,

I still go through these up and down. Tonight is a bad time for me. I had to meet with an attorney to discuss some serious issues this afternoon. I am a mess. I even prepared all day for the 4:00 pm meeting by resting. I am nauseous and jittery. It has been a job to keep my fingers on the right keys. I expect that tomorrow will be a slow day.

So, I will just take it slow and patient.
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Old 01-03-2013, 11:07 PM #5
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I agree. See if you can find a cognitive behavior therapist that deals with concussion/TBI patients. It has really helped me a lot.

You can always come here to vent. Even those who make bit by bit progress, still have days were we are blindsided by feeling off.

Sorry you are struggling so much. This condition is something I wouldn't wish on my worst enemy...
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What Happened: On 3/8/11 I was stopped waiting to merge into traffic when I was rear ended by someone doing 45 mph. I walked away from the accident, to fall into the pit of PCS 5 days later... (I have had 2 previous concussions, but neither developed into PCS.)

Symptoms 3 Years Post: Physical: migraines, infrequent vertigo, neck and back pain (from accident), tinnitus, visual field deficits in left eye, problematic light sensitivity, (including visual seizure activity), noise sensitivity, EXTREME fatigue, semi-frequent disrupted sleep cycles,
Cognitive: semi-frequent Brain fog after cognitive strain, limited bouts of impulsivity, unable to concentrate for more than short periods of time without fatigue, word finding problems, slowed processing speeds, impaired visual memory;
Emotional: easily overstimulated, depression, anxiety;

Treatment so far: Vestibular therapy; Physical Therapy; Vision Therapy; Vitamin Schedule; Limited caffeine; Medications; attempting to limit stress and overstimulation; Yoga; Cognitive Therapy
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Old 01-04-2013, 01:43 PM #6
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Thank you everyone.

I've been referred to a neuroscience institute (Nevada Neuroscience Institute). My appointment is on the 8th. Hopefully they will have some answers for me? I was told they give you cognitive testing, try different things to fix you and then repeat the same tests again to see if you improved, declined or stay the same.

I'll let you guys know how it goes.

BTW, I tried CBT awhile back. I have so much trouble with cognition, communication and overstimulation that I froze up and couldnt speak. I never went back ...Maybe i will try again. Problem is, there isnt any psychologists out here thay specialize in brain injury. Just the ones that work at the TBI rehab but you have to be admitted to the program to see them. Ive already graduated from there....:/
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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.

Last edited by SpaceCadet; 01-04-2013 at 02:00 PM.
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Old 01-05-2013, 02:10 PM #7
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Prayer. Exercise. Sunshine. Anything that will break isolation. I am trying to warm up to meditation. Listening to When Things Fall Apart — wonderful feedback from a Buddhist nun. You're not alone in the confusion.
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