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

Recovering From TBI syptoms .

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Unread 04-19-2012, 09:23 AM   #1
GraceInTheRain
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Default Recovering From TBI syptoms .



As per one of the welcome team's suggestion, I copied/pasted my "new member' post here.
I really wish I had known about your guys earlier, right after my accidents.
I only konw a couple folks with TBIS's, and frankly, my level of affliction is no where NEAR theirs', and who can complain about a high wind thunderstorm when the person wiht antoher TBI suffered a Tsunami??
SO. Here I am, Here's My Intro, and I'm looking forward to having a conversation with others who are dealing with the same issues. !!!


Hi....!
I just found your forum last night and am so glad I did!
Wish I had known about it months ago.
In Feb. 2010 I had a rollover accident and was hospitalized for 2-3 days and a couple months later entered a fantastic mTBI outppatient program to help me deal with the vision issues, cognitive issues and the psychological component.
I saw a Speech Pathologist, an Occupational Therapist and a NeuroPsycholgist PH.d for several months when I had ANOTHER HEAD Injury.

I was on a steep flight of old stairs and fell. *I have amnesia for that entire day, so if it weren't for a witness, I would have no idea*.
i was unconscious for several hours and ultimately had to be air lifted to the nearest large hospital where I spent 4 days.
Then I went to one of ***THE BEST*** Rehabilitation Hospitals in the Region .
I was there for a month.

Now I'm dealing with all the residual symptoms of TBI.
Debilitating Chronic Daily Headache, Retractable Migraine, Vision, Hyperacusis and Light Sensitivity, ((Actually I developed a SensoryModulation Disorder in general))
Dizzy Spells (not too bad) Tinnitus **I hear both Buzzing and MUSIC in my Ears**
and There's Cognitive Deficits as Well.

If there's ONE THING I can say with absolute conviction is I am So Incredibly LUCKY AND BLESSED.
Some of the patients at the Rehab hospital were so severely and profoundly traumatized that I find it difficult to complain.

So.....a Little about me.
I'm 50, **how the HELL did THAT happen??** LOL
Have had 4 children, live in a small where I have what I call the "sweet cottage on the prairie'.
a Double Lot on the Corner, Surrounded by the Quintessential White Picket Fence.

I haven't been released to go back to work as of yet; my attorney urged me to apply for SSD.
Next Friday I have an appointment set up by SS for a Neuro Psych Exam and I am a bit concerned after reading/hearing that the 'whole shebang' can be a set up for denial.
(((Like If I answer honestly about pain and mood, It could look like I'm malingering)) and if I do poorly on certain areas, the tester could REMOVE the data that shows I'm impaired.

I am hoping the psychologist is Ethical and there is "no such arrangement' set up between him and the department.

Am on a LIST of medications -----and recently had 25 botox injections from my neurologist to try and curtail the migraines.
Right now all I see is most of my neck muscles are parlized, so I can't lift my head if I look down, haha.....My big ole heavy head has two positions. chin to chest and Up.
And if I want to lift it up after looking down at the floor, I have to use my hands to guide.
weird.

Well, It's taken me several sittings to get this comprised.
My attention span and vision headaches prevent me from doing too much in one sitting.
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Lightrail11 (04-19-2012)
Unread 04-19-2012, 09:43 AM   #2
camyam73
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I'm new here as well, and haven't seen a specialist yet, so I cannot really offer any help at all... I do have a question though... what is a Retractable Migraine? I've googled it and couldn't find anything on it....
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Unread 04-19-2012, 09:47 AM   #3
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Welcome GraceInTheRain,
You have found the right place for support.

Your injuries sound severe but it also sounds like you have come a long way (overcome a lot).

I suffer from debilitating headaches/migraines as well and I have had the BOTOX injections frontal/temporal. They were extremely painful for me due to the inflamation and scar tissue from the injury. I hope yours work better for you than mine did.

Many on this forum will be able to tell you about their experiences with the Neuropsyche eval. I haven't had mine yet but I've heard to just go into it with no expectations and let them see your real challenges.

Best Wishes to you and keep us posted.
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Head Injury 10/2011. Diagnosed with contusion/concussion....Now PCS with Tension/Migraine combo headaches.

Symptoms: focus/concentration issues, short term memory issues, nausia, dizziness, sleep problems, noise/light sensitivities, extreme fatigue, irritability, vision problems, slow processing, tingling in extremeties and a few more I can't remember.
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GraceInTheRain (04-19-2012)
Unread 04-19-2012, 09:55 AM   #4
GraceInTheRain
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Quote:
Originally Posted by camyam73 View Post
I'm new here as well, and haven't seen a specialist yet, so I cannot really offer any help at all... I do have a question though... what is a Retractable Migraine? I've googled it and couldn't find anything on it....
I'm SORRY, I MEANT to type "Intractable"....
It's basically a Migraine that doesn't go away.
The Pain is different than my "past traumatic daily headache". ..
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Unread 04-19-2012, 01:19 PM   #5
EsthersDoll
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Welcome to neurotalk!

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Unread 04-19-2012, 08:43 PM   #6
Lightrail11
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Hi Grace and welcome. While there is no way of really knowing the ethics of your Clinical Neuropsychologist, you could do a look up and see what other patients say. You can call me nave, but I think that by the time a clinical neuropsychologist finishes their education (PhD level) and internship they should be pretty well set professionally, and it would seem to me to be against their professional best interests to do anything other than give an honest evaluation. The two that Ive had have been very professional, and I admire what they do. At least thats been my experience.

Best to you in your continued recovery.
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What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was traumatic brain injury and multiple fractures (pelvis, ribs, skull). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
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Unread 04-19-2012, 08:48 PM   #7
GraceInTheRain
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Default thank you for the welcome!

Have been sleeping most of today....
Ended up going to the ER last night for a bad migraine and then today took my reg. meds.
The combination of the two sent me into a Sandman-Sleep all day.
I hate that.
I've never been one for napping during the day, so it still feels like I've lost so much valuable time I could have used doing something else.

Looks like this forum has SO MANY topics covered, there's very little reason for me to ask a question, because I'm betting the topic is covered here already!

I just feel like my life has been grabbed like a drawer and dumped out a window.
Everything is strewn about........some lost, some laying damp in the rain and some things carried off by thieves.

But...........sigh.
I also try and remember there ARE MORE drawers in the china cabinet from upon I can draw.

I hope to gain some ''friends'"" here...I'm pretty adept at finding the information I need on a specific topic --symptoms, meds, treatments, etc., but the feeling of being alone is like being tied over a avast ocean.

------------Grace.
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Unread 04-19-2012, 08:55 PM   #8
Lightrail11
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Quote:
Originally Posted by GraceInTheRain View Post
I've never been one for napping during the day, so it still feels like I've lost so much valuable time I could have used doing something else.
Getting caught up on your rest was probably absolutly the highest and best use of your time today. You were doing the most important thing, getting better.
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What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was traumatic brain injury and multiple fractures (pelvis, ribs, skull). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
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GraceInTheRain (04-19-2012)
Unread 04-20-2012, 12:44 AM   #9
Mark in Idaho
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GITR,

Welcome to NeuroTalk. Your experience sounds familiar except mine was just the opposite. I fell down stairs then a short time later had a catastrophic concussion from a bike accident. That was in 1965.

Don't worry about the psych eval. SSDI does not pick biased psychs. Applicants attorneys would have them for lunch. SSDI applications are not adversarial like a Work Comp or personal injury claim is.

Be truthful. Take the tests as they come without any pretense. The first SSDI application is often denied as a matter of policy. The second application is where the claim is looked at with more consideration.

Your history will provide lots of medical records so the psych eval which is usually an abbreviated neuro-psych assessment, will likely be just to confirm the information in your medical records. In my opinion, you stand a good chance of approval on your first application.

There are plenty here with years of experience who can help you work through and around some of you symptoms. Feel free to ask you questions.

My best to you.
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59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 04-20-2012, 08:19 AM   #10
GraceInTheRain
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Default Appreciate the Words of Encouragement.

[b]Just read your response and I thank you for the reassurance.
I'm not sure if I'm authorized to post links yet (since I'm so new), but the website talking about the testers 'throwing out the data' and 'staking the deck against the disabled" was


"""The Truth About Neuropsycholgical Tests By Linda Nee at Wordpress"
google those words and you should find it.
I have to have 4 more posts to be able to add links in my posts.

Yeah....(nods nods nods) she pretty much says we're all screwed. :+(
But from looking at her site/page, she may not be the most OBJECTIVE source out there.

At least most of the meds have worn off this morning, so I can get a few things accomplished. Sure, I'll have the normal fatigue and brain fog, but those are familiar. That horrible fuzz/lethargy from more potent drugs is miserable.
And that's one of the things that's been so hard for me. Before the accident I was so fast paced; always on the go, up early, out late and did miles and miles of driving for my job.
After the rollover accident in late Feb. of last year, that was the Dr.'s major complaint. That I had to slow down.
BUT, I needed to pay my bills. Work is a necessary evil and my injuries were not severe enough (in my opinion) to warrant disability claim.
So I burned my candle at both ends.
With this injury it doesn't much matter just HOW much I want to go, My Neurological system simply can't handle the stimulation of noise, light, movement and conversation.

Off to get a cup of coffee.....pet my dog...........enjoy my morning. There's a lot of beauty out in that yard, and I'm going to go wallow in it!

Grace............Maybe in the Rain, but There's Still Peace and Hope.
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