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


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Old 01-12-2016, 07:50 PM #1
qtipsq qtipsq is offline
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Default Great recovery blog!

This guy had the right idea on how to heal. Good recovery blog.

http://postconcussionsyndromerecover...ome-story.html

Last edited by qtipsq; 01-13-2016 at 09:37 AM.
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Old 01-12-2016, 09:10 PM #2
Mark in Idaho Mark in Idaho is offline
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This blog is a long read. Likely too much for many trying to recover.

It is actually written by a man. I bet he and his insurance company likely spent close to $100,000 for all of his treatments and travel. Everything he tried, whether it worked or not has been suggested and used both successfully and unsuccessfully by people on NT. UPMC, Buffalo, neurofeedback, neuro-ophthalmology, PT, vestibular, etc. One needs to find the right mix of these diagnostics and therapies. Remember, every brain injury is different and will respond differently.

An important part in his blog was the advice to stop tracking and grading symptoms. A more general approach to dealing with the pattern of symptoms and improvements reduces anxiety.

I'm surprised there was no mention of B-12, folate and D-3 to help nerve fibers heal.
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Old 01-13-2016, 08:38 AM #3
DannyT DannyT is offline
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Isn't the part about expose and recovery contrary to what is preached here a lot?

I also received similar advice from the head of the concussion clinic at Dartmouth. It seems the brain needs some stimulation and exposure to uncomfortable settings or it will readapt to its new way of life.
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Old 01-13-2016, 09:37 AM #4
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Default Yep

Seems like everybody and anybody who has recovered has had to expose and recover. Rest is best at the start but, not sure how it's going to fix anything if you get stuck like this, vestibular therapy, vision therapy, graded excercises, and slow exposure to your triggers plus staying positive seems like the key to healing.

As much as I love the vitamin regimens, they haven't really done anything for me other than change the color of my pee. For me, personally the depression has hurt, screen time is my other big problem, I need to start going out of the house. Start on the buffalo protocol and stop searching for answers on the internets.

Mark his dedication is what sets this guy apart, he follows all of his doctors advice religiously and it seems like it paid of. Doing therapy all day everyday for 13 months in a row, while staying optimistic. I have a feeling that most people on NT have not done that. I know I haven't.
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Old 01-13-2016, 12:13 PM #5
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Qtip, how and which part of your brain did you injure? My main trigger is screen time and it's really frustrating and depressing. Especially in winter, when there is literally nothing to do. Concentration is a problem also, so that pretty much rules out any other activities. It's the nightmare that won't end, but I've kind of got used to living in it. Weird as that sounds.
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Old 01-13-2016, 01:45 PM #6
Mark in Idaho Mark in Idaho is offline
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Expose and recover is controversial for PCS. I think it's value is mostly psychological, not physiological. Realizing that we can be exposed to a trigger and recover and survive is empowering.

To me, the valuable part of expose and recover is short exposures. I know my limits. I don't have to avoid the exposure. I just need to know I am approaching my limit of the exposure. It is not a formulaic time. It is understanding when my brain is starting to be negatively impacted. And, I don't look for that negative impact. I am just able to notice it when it happens. My wife can recognize it in me, too.

My sound sensitivities are as bad as they have always been. I am just better at tolerating them by not adding to them with an anxiety response. Our psychological response can feed a physiological response. What might have been an annoyance becomes a crisis if we let our mind get away.

Dr Norman Droige's book is full of these 'recoveries' that take hundreds of hours of disciplined therapy. Most do not have the time, resources, or concentration to maintain these levels. The intellectual OCD it takes to keep up with these is exhausting in itself.
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Old 01-15-2016, 11:54 AM #7
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Default That's my blog!

Thanks for posting my blog here. I had so many unanswered questions during my recovery and very few resources and I'm happy to see the things that I learned getting out, and hopefully to the people who it can really help.
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Old 01-15-2016, 11:30 PM #8
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Three months ago I participated in 6 week concussion clinic that uses this emersion philosophy (expose yourself to everything that bothers you). The program I was in was very similar to what was described, and included vestibular, occupational, physical, psychological, and neuropsychological components to it.

I've been reluctant to post my personal thoughts as I haven't been doing very well. Keeping this short, this emersion philosophy did not work. At all. Outside of doing some physical activity and talking to people other than my family, this program had an escalating and wholly negative impact on me. By the end of the program I was an utter mess. I was back and continue to need narcotic analgesics on a daily basis, I had increased anger and frustration problems at home, nausea and disorientation issues were back, sleep disturbance became the norm (again), and, worst of all, my ability to tolerate any kind of stimulation was significantly diminished.

Fast-forwarding 3 months post clinic, things have not improved. I am more sensitive to noise and conversations, and my constant headaches are worse and more easily intensified.

So, when I see clinics and people touting these success stories, I think it's very important to remember that every concussion is unique. It will work for some, and it may not work for other. Whilst I'm glad that I tried it and saw it through, I cannot say it was beneficial to my recovery per se.
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Old 01-16-2016, 08:24 AM #9
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That really sucks to hear MicroMan, I hope things turn a corner for you soon.

There's got to be some kind of predictor for how a particular concussion case will respond to these two "camps" of concussion recovery, right? Absurdly complicated, I'm sure, but if you had enough detailed histories and outcomes, shouldn't fancy statistics be able to pick up something? It seems clear to me that both camps work for some, but not for others. There's gotta be a reason why.
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26 year-old PhD student in evolutionary biology, slipped on ice in Feb 2014 while clipping my fingernails and walking to save time (dumbest reason for PCS ever?). Initially just had headaches and didn't feel quite right, but a minor head bump 5 days later started a downward spiral of anxiety, depression, insomnia and fatigue. Had trouble concentrating on reading/looking at screens

April 2014 - did exertion test, passed, started exercising and doing more, but didn't feel much better.

May 2014 - Went on backpacking trip OK'd by doctor, trip itself went fine, but felt worse a few days after getting back, more difficulty concentrating, worse headaches.

June 2014 - Bumped head on ceiling walking slowly down stairs, no immediate symptoms, but caused worsening headahces, more difficulty concentrating and looking at screens. Have not felt as good as I did before this since this bump.

December 2014 - after feeling relatively better I went xc skiing and fell but didn't hit my head (something my psychologist who specializes in brain injuries told me he hoped would happen so I saw it was OK), felt worse

Feb 2015 - back in grad school, light teaching load and some research, nowhere close to operating at my full capacity. Still have constant headaches, difficulty reading/looking at screens, mild anxiety and depression, and just not feeling like my normal sharp self.

Trying, but struggling, to believe that I'll get back to my old self, or at least get close.
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Old 01-16-2016, 12:18 PM #10
Mark in Idaho Mark in Idaho is offline
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The researchers have been confounded by the lack of a statistical pattern. They cannot even find a way to grade impact force or symptoms immediately after the impact and connect them to recovery timelines.

What they are starting to see is a possible genetic component. But, they have not yet developed a treatment to the genetics-based response to the impact. Nor have they found an affordable way to identify that genetic component.
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