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


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Old 06-23-2011, 04:47 PM #1
eddyx77 eddyx77 is offline
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Every post that I read on this site is so discouraging. No one seems to get better, and those that do have it happen fairly quickly after the moment of injury, maybe 3-6 months. For those of us that have been dealing with this for years, what the hell is the point? Why are we even trying? I have been living in an unspeakable hell since I was 20 years old and the advice I have seen on this board is to "accept the changes in your life". How am I supposed to "accept" being tortured by these symptoms every day? It's like asking someone to "accept" being doused in gasoline and lit on fire.

Does anyone actually get better????

I would rather die than live like this.
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Old 06-23-2011, 05:02 PM #2
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Hello,
What are your most bothersome symptoms?
What treatments or therapies have you tried?

Everyone goes thru the stages of grief - anger & frustration is one of them.

http://ibdcrohns.about.com/cs/mental...ninghealth.htm
http://www.helpguide.org/mental/grief_loss.htm

Often the ones that recover, usually stop posting as they get busy with work & family.
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Old 06-23-2011, 05:40 PM #3
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Originally Posted by Jo*mar View Post
Hello,
What are your most bothersome symptoms?
What treatments or therapies have you tried?

Everyone goes thru the stages of grief - anger & frustration is one of them.


Often the ones that recover, usually stop posting as they get busy with work & family.
Ok, I checked those links and I really don't know what to do with that information. I have tried to find "support" for a long time and have had absolutely no success. The only thing that keeps me going is the hope that I will someday get better, but everything that I read about mTBI steals that hope from me.

My symptoms are really more of an overall altered state of existence rather than a collection of ailments, but generally speaking I suffer from terrible fatigue, weakness, disorientation, cognitive deficiencies, etc. I can't eat 95% of foods. I also have developed a hyper sensitivity to light and sound. I have pain in my head, neck and jaw. The severity level of the symptoms is nothing short of debilitating.

It took me 6 years just to get a diagnosis. I tried neurofeedback for a considerable amount of time (approx. 6 months) and only experienced an exacerbation of symptoms. I saw a pcs/head trauma specialist who told me that my right parietal lobe had severely impaired function and that my brain did not know where my body was in space. I am currently doing vestibular exercises that are supposed to help but so far I have experience nothing good. I have also tried acupuncture, dietary changes, exercise, herbal supplements, etc. It has been 8 years nearly to the day since my accident.

Prior to my injury I was a very healthy and happy young man. Then at age twenty I slammed my head and SEVERELY twisted my neck in a freak accident. I got up and walked away thinking that everything was fine. Then my life began to deteriorate into an unbelievable nightmare. I could never have even conceived that life could be this bad. I have tried to be optimistic and NOT to succumb to anger and frustration but after 8 years of this hell with NO improvement I just can't take it anymore. I am not superman.
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Old 06-23-2011, 06:58 PM #4
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Is it possible your symptoms are related or exacerbated by a lingering neck/spine injury? I would assume since you had both as an injury, you had therapy for that as well. However, it might be worth a thought as many people who struggle to resolve their PCS come to realize there is neck/spine trauma invovled that is preventing complete recovery.
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Old 06-23-2011, 07:28 PM #5
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Originally Posted by SmilinEyesMs305 View Post
Is it possible your symptoms are related or exacerbated by a lingering neck/spine injury? I would assume since you had both as an injury, you had therapy for that as well. However, it might be worth a thought as many people who struggle to resolve their PCS come to realize there is neck/spine trauma invovled that is preventing complete recovery.
At this point I am so turned around and confused that I don't know what to do.

When I had this injury, I did hit the right side of my head pretty hard but it seemed that a lot of the force of the impact went into my neck at the point where the spine meets the base of the skull. In fact, there was such a loud CRACK sound that came from that spot when I hit, that I actually thought for a split second that I had broken my neck.

However, in the years since then I have seen a number of chiropractors, including a NUCCA specialist (national upper cervical chiropractic association) who have done X-rays and adjusted me more times than I can remember. I stayed with the NUCCA guy for months and payed him a good deal of cash because he said my C-1 vertebrae was REALLY off (and showed me the xrays to prove it) but when he was finished and said that I was aligned I didn't feel any improvement. I have also had body work and message done many times on my neck, back, head, etc.

Now I'm working with this head trauma specialist who is also a chiropractor and I told him about my neck injury but he is focusing solely on my brain. He has done a lot of testing on me and says that all of my problems are from a brain injury. He says that if I had injured my brain stem in some way I would be dead.

So I don't know what more to do. I feel so frustrated and confused and it seems like there is always doubt in my mind about what I am doing.

What other options are there to treat or diagnose a neck injury?
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Old 06-23-2011, 10:15 PM #6
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Have you seen a physiatrist? They are rehab specialists. I am currently doing spine rehab for my neck & lower back at a physiatrist clinic.
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Old 07-01-2011, 07:04 PM #7
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Quote:
Originally Posted by eddyx77 View Post
Every post that I read on this site is so discouraging. No one seems to get better, and those that do have it happen fairly quickly after the moment of injury, maybe 3-6 months. For those of us that have been dealing with this for years, what the hell is the point? Why are we even trying? I have been living in an unspeakable hell since I was 20 years old and the advice I have seen on this board is to "accept the changes in your life". How am I supposed to "accept" being tortured by these symptoms every day? It's like asking someone to "accept" being doused in gasoline and lit on fire.

Does anyone actually get better????

I would rather die than live like this.
Sorry to hear your state.

I was the same as yoy, wondering what the point of life is living like this...

Everywhere i turned there were no cures and I took it upon myself to find different ways to battle this problem.

Here's a thread i made with a list of things that have helped me.

If you need someone to talk to, Pm me your phone number or I'll PM you mine. You are not alone in this... And you must thank the powers that be that your are still alive and breathing. This is what has helped me most... Knowing that we could all be dead now... But we were given a chance to live.
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