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


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Old 06-09-2014, 04:27 PM #1
Willgetbetter Willgetbetter is offline
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Default Is it all in our minds?

Sometimes I wonder if this whole PCS thing is all in our heads. Some of the symptoms are completely legitimate (dizziness, tingling, etc), but I feel like that fact that we are all on this forum and have done a lot of research into PCS, we may be actually feeling exaggerated symptoms because we are so aware of them. Things like brain fatigue, tiredness, etc are all part of daily life. I think at times we may be just reaching on these symptoms and over-exaggerating them.
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Old 06-09-2014, 05:00 PM #2
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I think the point here is that many times we cause ourselves anxiety by focusing on every little symptom and concern. Our ability to question every little issue can lead to making a mountain out of a mole hill. I have learned to accept each symptom and work with it rather than fight against it. Take a break. Stop to think. Close your eyes for a moment. These are just a few of the many accommodations we can use to get past symptoms rather than getting stuck circling the symptom.
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Old 06-09-2014, 05:25 PM #3
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Speaking for myself only, I can tell you that I was not exaggerating anything - perhaps I was even underplaying symptoms.

The fatigue I suffered from a couple of years ago made it VERY difficult to clap during the annual year-end staff assembly. We just had it again last week and I was able to clap and chat and even left the room twice - I could NOT have done that two years ago.

Of course, the concussion I suffered caused my pituitary gland to malfunction and I'm only getting better due to HRT. Without it, I would still have difficulty clapping.
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Old 06-09-2014, 05:26 PM #4
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Yep, the self doubt gets to me... but then I have incidents like yoga last week where I just can not function... I can not focus on anything... and then I know that this is all real...
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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Old 06-09-2014, 05:31 PM #5
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I think you can easily get into a situation where you're constantly assessing how you're feeling and comparing it to what you remember as how you were before. I read that after about 3 months the physical damage of PCS has healed and what you are left with is psychological scars, I don't hold with that myself, I think you can double that to 6 months or even a year for hormones to rebalance etc. I do think the mind controls the body and simple things like exercise, laughing, positive outlook and good company can work wonders. I wish more research was done into mtbi it's such a common injury but until drugs companies see a buck in it then there won't be the funding!
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Old 06-09-2014, 05:36 PM #6
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there are many times throughout the day where I say "was i like this before?" and then beat myself up and say "no, i wasn't". At times I think that we are victims to all or nothing thinking, confirmation biases, etc.

I agree with Mark, I feel like a lot of us build mountains out of mole hills...sometimes you just need to relax and accept things will get better.
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Old 06-09-2014, 05:44 PM #7
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Quote:
Originally Posted by EsthersDoll View Post
Speaking for myself only, I can tell you that I was not exaggerating anything - perhaps I was even underplaying symptoms.
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Exactly. Ive downplayed my situation to everyone incept for this forum and my wife.
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Old 06-09-2014, 07:56 PM #8
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Quote:
Originally Posted by SuperElectric View Post
I wish more research was done into mtbi it's such a common injury but until drugs companies see a buck in it then there won't be the funding!
There will never be a real buck to be had because everyones head heals differently... mine did not heal like Kev's... we had accidents about the same time... Mine will not heal like the MANY MVA's that we have on here...

The bad part is there is NO fix for this.. you can only manage symptoms... and everyone manages those in different ways.. some think that the holistic approach is just as good as drug cocktail... it has to be what works for you and what gets you to the point where you think that you are "healed" or able to consistently work around the symptoms you have and make it work in your life...
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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Old 06-09-2014, 08:11 PM #9
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Quote:
Originally Posted by willgetbetter View Post
sometimes i wonder if this whole pcs thing is all in our heads. Some of the symptoms are completely legitimate (dizziness, tingling, etc), but i feel like that fact that we are all on this forum and have done a lot of research into pcs, we may be actually feeling exaggerated symptoms because we are so aware of them. Things like brain fatigue, tiredness, etc are all part of daily life. I think at times we may be just reaching on these symptoms and over-exaggerating them.
absolutely not!!!!!
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Old 06-09-2014, 09:53 PM #10
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Ditto what Hockey said!
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*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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