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


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Old 01-04-2014, 01:14 PM #11
Mark in Idaho Mark in Idaho is offline
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Mark in Idaho Mark in Idaho is offline
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LoriLu,

You made a profound statement. "My biggest step from his treatment is finding new ways to live my new way of life." This has been my mantra for decades. Most struggle to let go of the old way of life and find a new way of life. Accepting the changes in how we can live life is the first step toward that new way of life.

I am glad to hear you have found these new ways to live. Please share your experiences. Many here need to hear how others have re-established a full and meaningful life despite their limitations.

My best to you.

btw, It sounds like your rehab specialist may be a specialist in integrative medicine. You have found a '1 in a thousand' doctor.
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"Be still and know that I am God" Psalm 46:10
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Old 01-04-2014, 10:16 PM #12
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I am very sorry to hear about your accident.
The first thing you must do is make certain that you do NOT get a second concussion!!!!!! It really complicates the issue.
I have the same symptoms as you, except I am always hungry.
I have had at least 4 Concussions and have bumped my head significantly at least 6 additional times since my initial accident, in Spring 2009.
The pain is daily and almost unceasing though it gets better and worse at irregular times during the day. The thing that helps me is to have an extremely regular schedule, drink a little coffee or coke when the headache is bad, keeping my head warm but not hot, no exercise that will raise my heart rate, and basically managing the rest of my life to accommodate the headache. It isn't easy, you become a different person. The day I fell off of that horse, the old me was gone and a whole new person began to be. It is hard because you still remember the old you, everyone around you still sees the old you, but you are no longer that person. Maybe, you will be lucky and heal in 3-6 months, but it helped me to realize that while I might get better soon, I also might never get better. Almost 5 years into this, I am pretty good at managing the pain, but it is still very difficult for my family to understand that sometimes I can't do stuff with them, or that I cannot handle disorganization at all, or that I have to sleep and eat regularly or I can't function. I was still able to finish a very rigorous bachelor's degree, but it was only because my friends were extremely supportive.

Basically, hope for the best, rest and eat well and this may just be a forgotten nightmare in a year. But, also realize that you may need to learn how to live with this and that is OK, a new you is still living, and you can still enjoy life even if it is in the slow lane.
Good Luck!
In Christ,
Margarite
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Fell off a horse in late winter of 2009 blacked out for a couple seconds, had amnesia for 10 hours (still don't remember this time), had 2 CT scans, 2 MRI's, 1 MRA all negative. Since the first concussion I have continually knocked my head into different things purely by accident or from being stupid. These many concussions over a short period of time have caused
constant migraines, nausea, and dizziness/lack of balance.
Migraine triggers are:
light sensitivity (especially to florescent or bright lights)
sound sensitivity (especially to high pitched or loud sounds)
temperature sensitivity (especially to cold or extreme heat)
activity (especially if breathing increases or head is jostled)
pressure on head (sinuses, hats, headbands, sunglasses, pony-tails)
lacks or quality (food, sleep, water)
tension (stress, tight muscles, tired eyes, sickness)
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Old 01-04-2014, 11:47 PM #13
LoriLu97 LoriLu97 is offline
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It is unfortunate you are not receiving proper treatment. My medical journey began with er refer to dr. then told can't help the other symptoms, went from dr. To dr. Thought I was crazy. Became knowledgeable and kept searching until I found one. Contact any informed brain injury knowledgeable professional you can find.

There has to be something on the East Coast even lawyers, maybe your ins. co. For specialists name, the neuro-chiro Mark gave advise on might be helpful. My diag. started PCS, ended up as MTBI. Central Auditory Processing Disorder is a part of some brain injuries. If communication is a problem ( taking in info., processing it and expressing it) write down what you need to say. If necessary just give them the paper. Never give up. You deserve treatment. Proper treatment.

Because brain injury cannot be seen people can't understand it. Even spouses, friends and family members. The young perceptive children in my life know without discussions. Have hope as better days are around the corner. Be easy on yourself. Listen to your brain it will tell you when to stop. Trying to push through it does no good for you or the healing process.

It will not reset or recondition the brain. Recognize professionals who really understand MTBI by using your knowledge to test them. I had an eval. by a university psychiatrist while inpatient asked him if he was familiar with CAPD - he was clueless I explained it to him. Do you think he was capable of proper diagnosis?

It is sad to say in the medical world the squeaky wheel receives the grease. TBI trained professionals are hard to find. Try forever if you have to. My fatigue, confusion and sleep greatly improved with seizure diagnosis and the proper medications. Best of luck. Lori
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