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


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Old 05-05-2011, 09:08 PM #1
Cheers Cheers is offline
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I just wanted to say thanks. Thanks to everyone out there asking and answering questions about PCS and it's related fall out. I have felt so lonely and isolated since my slip and fall and subsequent PCS diagnosis back in Feb. It has been so welcoming to find this neurotalk chat and investigate it, following threads of things I was wondering about too.

My situation:
Slip and fall in unshoveled parking lot at work, "mild concussion". World has been a spinning, dizzying, head-achy place ever since hit. A lot of balance issues even though spinning has stopped. Seen neurologist x 2, "healing nicely, no I can't tell you when you'll get your life back, it is what it is." Had epley procedure done 3x, but no lasting relief. Attempted to return to work light duty, but employer won't take me, which is probably safest (only WC has cut me off too for a variety of reasons)....as I just failed cognitive and brake response time of driving evaluation. Don't have results on ENG yet (felt like Space Mt. at Disney), have Funcl Cap Eval and neuropsych on the horizon.

I think what bugs me the most about it all is the unpredictability...I don't know if I'll be able to handle an hour of something or three hours...or 10 minutes. I don't know if today will be a "headache day" or semi-productive. I hate the not knowing, the hoping that today will be an "on and productive day" that takes me towards healing or if I just have to veg in a semi-dark room ignoring my kids and responsibilities. I hate feeling like my brain needs to get oiled to work correctly. I feel so lonely, like all my friends have forgotten me, but conversely grateful for all the running, driving, errands and attention they've given me, I'm just resentful my own ability to do these things is on hold. I hate knowing what my kids are sacrificing for me, their actitivities, homework help, friends, fun, etc. I hate it when my husband is peeved that x,y, or z isn't done around the house, OK, I never liked sorting mail, so now I have an "out", but in truth it just kills my head to do it, same w/answering phone, taking messages is next to impossible, so I avoid the things that trigger me...meanwhile important stuff gets missed and I suspect he thinks I'm just "lazy" some days vs the pcs (although he hasn't outright said so, but it's clear I'm a burden at times). I think it boils down to hating the vulnerability that a diagnosis like PCS gives you. There is so much grey area, as my dr said, "it's so easily abused", that it leaves me on the defensive to "prove" I've got it, meanwhile I just want it all to go away so I can have my life back. I'd do anything to just wake up and be me again. I feel like I'm hostage in my own body, like a movie on pause and the remote got lost.

Ok, enough ranting, just needed to clear the decks. Thanks to everyone out there in cyber space, may you heal well and regain your fullest potential...as I pray to someday soon! Cheers.
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Old 05-06-2011, 06:11 AM #2
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Originally Posted by Cheers View Post
I just wanted to say thanks. Thanks to everyone out there asking and answering questions about PCS and it's related fall out. I have felt so lonely and isolated since my slip and fall and subsequent PCS diagnosis back in Feb. It has been so welcoming to find this neurotalk chat and investigate it, following threads of things I was wondering about too.

My situation:
Slip and fall in unshoveled parking lot at work, "mild concussion". World has been a spinning, dizzying, head-achy place ever since hit. A lot of balance issues even though spinning has stopped. Seen neurologist x 2, "healing nicely, no I can't tell you when you'll get your life back, it is what it is." Had epley procedure done 3x, but no lasting relief. Attempted to return to work light duty, but employer won't take me, which is probably safest (only WC has cut me off too for a variety of reasons)....as I just failed cognitive and brake response time of driving evaluation. Don't have results on ENG yet (felt like Space Mt. at Disney), have Funcl Cap Eval and neuropsych on the horizon.

I think what bugs me the most about it all is the unpredictability...I don't know if I'll be able to handle an hour of something or three hours...or 10 minutes. I don't know if today will be a "headache day" or semi-productive. I hate the not knowing, the hoping that today will be an "on and productive day" that takes me towards healing or if I just have to veg in a semi-dark room ignoring my kids and responsibilities. I hate feeling like my brain needs to get oiled to work correctly. I feel so lonely, like all my friends have forgotten me, but conversely grateful for all the running, driving, errands and attention they've given me, I'm just resentful my own ability to do these things is on hold. I hate knowing what my kids are sacrificing for me, their actitivities, homework help, friends, fun, etc. I hate it when my husband is peeved that x,y, or z isn't done around the house, OK, I never liked sorting mail, so now I have an "out", but in truth it just kills my head to do it, same w/answering phone, taking messages is next to impossible, so I avoid the things that trigger me...meanwhile important stuff gets missed and I suspect he thinks I'm just "lazy" some days vs the pcs (although he hasn't outright said so, but it's clear I'm a burden at times). I think it boils down to hating the vulnerability that a diagnosis like PCS gives you. There is so much grey area, as my dr said, "it's so easily abused", that it leaves me on the defensive to "prove" I've got it, meanwhile I just want it all to go away so I can have my life back. I'd do anything to just wake up and be me again. I feel like I'm hostage in my own body, like a movie on pause and the remote got lost.

Ok, enough ranting, just needed to clear the decks. Thanks to everyone out there in cyber space, may you heal well and regain your fullest potential...as I pray to someday soon! Cheers.
welcome cheers

this group has helped me so much over the past 4 yrs thanks for your thanks time and rest are best headway uk call head injury the hidden injury and the hidden epidemic

best wishes
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Old 05-08-2011, 11:08 AM #3
aggieteacher04 aggieteacher04 is offline
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Thank you so much for putting in words so eloquently the way I have been feeling for the last 9 months.

I'm tired of being told, "I'm cazy" or "I'm making more out of this than it is." It has been very difficult for me to have to rely on people for such small every day aspects of my life.

It has gotten easier in some aspects. There are good days and bad days, and I am still trying to figure out what my limits are as far as how much to push the good days so I don't have multiple bad days afterwards to get back on track with the good days, but I am learning just as you are!

Good luck, and once again thank you for gettin inside my head and putting my feelings in words!
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"Thanks for this!" says:
Concussed Scientist (05-08-2011), Theta Z (10-05-2012)
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