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.

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.

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.

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?

Have you seen a physiatrist? They are rehab specialists. I am currently doing spine rehab for my neck & lower back at a physiatrist clinic.

Have you had any MRIs yet? Or only X rays?

eddyx77,

The point to accepting the limitations is not to just go on with life as if nothing had happened. It is to define and accept the limitations so that you can start building a set of skills and tools )work-arounds and accommodations) so that those limitations have less impact on your life.

I have undergone many downward steps since my first injury in 1965. That was 46 years ago. I can't tell you all of the work-arounds and accommodations I use daily because I can no longer tell most of them from my previous ways of living. I still live a very full life only limited by my driving limitations and some financial limitations.

The constant wondering about symptoms and what they truly are leads to frustration. Getting a good neuro-psych assessment so that you have a good understanding of how your brain is and isn't functioning helps as a start.

I have very little visual or auditory short term or immediate memory. before I fully understood this, I was constantly trying to live as if those memory functions were working correctly. Now, I use other skills to make up for these limits.

There is a book written by a concussion survivor that has 365 tips and tricks for living with brain injury. Here is an Amazon link. http://www.amazon.com/Brain-Injury-S...8889040&sr=1-1

From what I understand, Dr Sullivan is no longer practicing medicine but has learned to go on living.

Tell us about your more frustrating limitations. Someone here will have some ideas for you to try.

Eowyn:

No I have not seen a physiatrist. What exactly do they do when compared to a chiropractor or an orthopedist?

Jo*mar:

I did have an MRI done way back in 2006. I had to beg my neurologist to give me one. After it came back clean he told me there was no way that anything could be wrong with my brain. I was dumb enough to believe him.

Mark in Idaho:

I am glad to hear that you are living a self-described "very full life" despite your symptoms. I know that it must have been very hard for you and you have displayed a great deal of strength in overcoming this hardship.

I wish I could say that same thing about my life. I promise you that I am not a weak person and I have tried harder than anyone will ever know. After 8 years of this I have come to the conclusion that I cannot live with these "limitations" if that's what you want to call them.

I can't see anything. I took an eye test and they said my vision is fine. Nothing is clear, I can't track movement, and I can't focus on peoples faces or objects in front of me. I can't even read. I wanted to be a writer, I was majoring in English, I got into UCLA and UC Berkeley, now I can't even read a magazine. I've heard about vision therapy but my Dr. told me that my brain doesn't know where my body is in space and doesn't think vision therapy will help me. I don't know what to believe. I just know that everything I do seems to make things worse. How do you adjust your life to that?

I can't eat 95% of foods, literally. Its not an exaggeration. Eating almost anything causes HORRIBLE reactions in my head like you would not believe. Its like the computer crashes. I can't eat anything sweet, not even fruit, no bread or pasta (even gluten free quinoa pasta), can't drink juice or milk or ANYTHING. I have eaten the same handful of foods everyday for years. I have no desire to eat anymore, I just do it to stay alive. Everything that I put in my body, even herbs or herbal tea, medicine of any kind if it involves my digestive system can be detrimental. My Dr. says that the part of my brain that the vagus nerve fires into when my digestive system is activated is damaged and can't handle the stimulation. I have also wondered if the vagus nerve itself is damaged somehow. No idea how to figure that out or what to do about it.

The fatigue is debilitating. I have tried to push myself physically by going on long walks, doing yoga, doing push ups or other exercises, it doesn't matter. I am still on most days so weak that to walk to the top of the hill to get the mail is difficult and disorienting. My Dr. says that its basically like I am walking around with giant foam shoes and thick goggles on, my brain has lost connection to my body and the world around me. How am I supposed to adjust to this?

As if all of that wasn't bad enough, last year I tried doing vestibular exercises and I pushed myself too hard. I wanted to be better and instead I made myself so much worse. Now as a result I have an incredible ringing in my ears (I had it before but not as bad) and an extreme sensitivity to sound. The ONE thing that I had to keep my mind off of this nightmare was my guitar; now I can't even play my acoustic anymore because the sound is like a drill in my brain. Even the sound of people's voices can set me off. Again, how am I supposed to adjust to that? Its been that way for the last 8 months.

I'm sorry if I seem so negative but I am at the breaking point. I'm 28 years old and my life is worse than my 70 year old neighbor's. There were so many things that I wanted to do with my life, and now I can barely watch TV. What is the point of living like this?

Sounds like you are having a really difficult time. I am only on month 6 and already extremely frustrated, so I can only imagine how I would feel after years of this.

My physiatry clinic is specifically for neck and back pain. The physiatrists evaluate your symptoms, range of motion, etc. and then prescribe an exercise program that very gradually increases strength. I go twice a week and work out with a PT or rehab specialist. My particular clinic has specialized weight equipment that very specifically isolates the muscles on either side of the spine. I just started a couple weeks ago and WARNING: it feels worse before it feels better. Apparently this is not uncommon, but my clinic reports that 2/3 of people who complete the 9-12 week program do not need to seek medical attention for back pain again.

As I understand it, the major difference between this and chiropractic is that a chiropractor manually adjusts the bones of the spine. It can be a good complement to muscle strengthening as it correctly aligns the spine so the muscles are holding it in the proper position.

Not sure about the difference between physiatry and orthopedics.

Also wondering if you have contacted your local Brain Injury Association. Mine provides referrals to brain injury clinics, where they might have a variety of different types of rehab.

Hope you're able to find some solutions and/or peace soon.