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


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Old 07-01-2016, 09:56 AM #1
JBuckl JBuckl is offline
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Default Another Setback--Any Advice?

I made some really good progress the past two months or so, but the past three weeks I've declined significantly. I would suggest not trying cold showers or exercising to the max. Clearly, my brain can't handle those things.

But the part that caused the most decline was "overdoing it." I had a week or so of really good days, but I guess I did too much. For a while, I thought it was a new supplement that caused the decline, but I'm finding out that that was a wrong assumption.

I'm just wondering if anyone has advice. I can't live my life taking an hour break every 1.5-2 hours. That's my biggest issue. I get overstimulated frequently, and then need around an hour to return to activity.

I'm still exercising, eating healthy most of the time, taking supplements, sleeping very well, and keeping my brain stimulated.
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Old 07-01-2016, 10:47 AM #2
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What things are you doing when you feel you have overdone it ?
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Old 07-01-2016, 10:57 AM #3
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Brain games. puzzles, etc. And reading.
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Old 07-01-2016, 11:12 AM #4
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Have you tried to learn when you are at the very beginning of over-doing it ?

How long do you play the brain games ? Lumosity like stuff ?

What kind of puzzles ?

What kind of reading ? fiction, non-fiction, technical, news, ?
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Old 07-01-2016, 12:55 PM #5
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Have you tried to learn when you are at the very beginning of over-doing it?

Yes. I usually am great at knowing when I'm at the beginning of over-doing it; mostly because I can easily overdo it, and the consequences are not worth it. The week where I felt good, I thought headaches were something that could be ignored, but was clearly wrong.

How long do you play the brain games ? Lumosity like stuff ?

I played for around 10-15 minutes at a time. Yes, Lumosity and similar apps, as well as Donalee Markus' Designs For Strong Minds exercises.

What kind of puzzles ?
Brain Games #1: Lower Your Brain Age in Minutes a Day (Brain Games (Numbered)): Editors of Publications International: 978141271451: Amazon.com: Books

What kind of reading ? fiction, non-fiction, technical, news, ?

Mostly non-fiction. During the good week, I read about 200-300 pages. Maybe more. Why Isn't My Brain Working? by Datis Kharrazian, Norman Doidge's The Brain That Heals Itself, and The Ghost in My Brain by Clark Elliot were the books that I was reading.
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Old 07-01-2016, 06:19 PM #6
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I suggest you stop reading about brains. Many have found that spending a lot of time reading about brain injury and such serves to increase their symptoms. A few on NT have been told to stop reading and even reduce their NeuroTalk frequency by their therapists. They have reported back that it helped, especially for those who have anxiety issues. Better to read enough to put together a written plan of action. Then, use that written plan to direct your activities.

When you consider books like Normal Doidge, keep in mind that some of his anecdotes are in reference to focal injuries. They have a different recovery path than concussion/diffuse axonal injuries.

Brain training is not the cure all many make it out to be. Extensive research shows that it improves the specific functions in the activity practiced but rarely does that improvement cross over into other disciplines/functions.

The personal improvement goals of Donalee Markus are more appropriate for healthy brains with high stress tolerance. The goal is often to maximize focus and cognitive function during high stress. One needs to keep in mind that many such programs are primarily focused at taking an unorganized brain but healthy brain and teach it to be organized. The real capabilities have not changes. The claims of increased intelligence are not supported. Instead, the person has increased their skills at test taking so they perform better on intelligence tests.

I have had roughly the same intelligence my whole life with peaks in my early teens and early 20's. But, I have had struggles with testing that shows deficits during that testing. Remove the stress or other challenges of the test and I unfreeze my brain and am back to normal.

Concussion research shows that learning to work with and through our limitations is the most successful path. Trying to force a return to pre-injury without needing any work-arounds or accommodations is not usually successful.

There is very little I cannot do. But, many times, I have to stop and find a detour around a mental roadblock or a memory limitation I have. It is counter productive to try to force my way through that mental roadblock. It will cost me. But, stepping back, re-examining the task, and finding a different way to get it done is very rewarding and usually successful.

If you read these brain injury books, you will find than many have used this, "Find a way around the roadblock" concept.

What tasks are you struggling to accomplish ? What happens when you hit a roadblock ?

I and others have likely already discovered ways around those roadblocks.

From my observation, it appears you come up against roadblocks and spin your tires trying to push through rather than look for a detour around it. That is extremely frustrating and counter-productive. Been there, done that, stunk up a Tee shirt doing it.
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Old 07-02-2016, 01:39 PM #7
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There was definitely a point where reading about brains and brain injuries gave me some anxiety, but that is not the case anymore. Stories of improvement give me hope. Plus, I would rather know what I’m up against, and find ways to make improvement. I would stop reading about brains and brain injuries, but I have no game plan. Time is not the ultimate healer in my case. I stopped pushing through symptoms a year ago, minus the really good week (that caused this setback) where I had some headaches. The concerning thing to me is that I have only made progress because of therapies and supplements this past year. On its own, my health only improves at such a slow rate, and that confuses me. I am extremely disciplined about taking breaks. I sleep well, anxiety is not an issue, I eat pretty well, I exercise when I can, and I have moderate amounts of stimulus.

“What tasks are you struggling to accomplish ? What happens when you hit a roadblock ?”

I can do lots of tasks, but in very small amounts of time. Like I’ve said, I overstimulate/flood very quickly--always around every 2 hours now--and need an hour or so break for the overstimulation to go away. I can either go for a walk, exercise, or need to be in a dark quiet room during my breaks. Some things cause me to overstimulate more quickly, like reading, playing guitar, and brain games. When I do those things, I have to switch tasks, and I do switch tasks. I’m trying to be as productive as possible because my time is limited, and I definitely understand that pushing through symptoms does not fit in the equation of being productive.

Because I overstimulate quickly and need breaks, many things are not realistic right now--a job and school.

“From my observation, it appears you come up against roadblocks and spin your tires trying to push through rather than look for a detour around it. That is extremely frustrating and counter-productive. Been there, done that, stunk up a Tee shirt doing it.”

Yes, that was me spot on for the first two years post-concussion. I have learned though. Minus a few bad days, this is my first setback in over a year. I thought I was working within my limits, but was obviously wrong. Regardless, I’m here right now with symptoms the way that they are, and I have to improve. I don’t know how I will improve though. That’s the hard part. Time is not my ultimate healer. I am considering seeing Dr. Zelinsky in Chicago, but that's honestly just part of the shotgun approach.

I sometimes wonder how much my schizoaffective disorder plays a role in my recovery. Anyways, thanks for taking the time to comment and share your ideas and knowledge.
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Old 07-02-2016, 03:38 PM #8
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If you over-stimulate reading, playing guitar, and brain games, why do you continue doing them ?

I had to give up most kinds of reading. I quickly over-stimulate when trying to read overly descriptive writing. This is common in fiction as they try to paint word images. Many other writers, especially women, use such overly descriptive styles in factual writing or reporting. As many publications such as Popular Mechanics, Pop Sci, Flying magazine, started pursuing women readers in the early 2000's, they changed the writing styles to be more touchy feely and I could no longer read them.

I have a limit of how much abstract information I can process at the same time. When writings have too much, crash........ If technical writings have a poor organizational structure where I need to juggle the information to make it fit together, I will also crash. If the information fits together like puzzle pieces, I can start assembling the puzzle and read on.

I recently tried to read a news report where the author used 3000 words to convey what could have been conveyed in 1000 words. It was very difficult to read.

When I do brain games, I know when I am approaching my limit and quit before I hit it and trigger problems. I have found it of no benefit as a therapy. I do it as a challenge that occupies my time. I usually quickly acquire the skills to excel with each exercise. My goal is often to improve my ability to perform at the subconscious level, especially in the observational/vision oriented exercises. I have very poor vision memory/processing, at least where I can visualize a memorized image. But, I can sometimes make successful guesses based on very faint, almost subconscious images.

I find I get more 'exercise' playing simpler games like Minesweeper or Freecell, or 2 suit Spider Solitaire. I play for win percentages and time. They are good exercises in vision to hand functions with intellectual/strategy or even probability challenges (minesweeper). I can play these three for an hour or more without crashing. That is great brain blood flow stimulation.

I also do online JigSaw puzzles, Just Words (Scrabble) at MSNgames, thejigsawpuzzles.com or games.com. I don't push for the most challenging levels. I want the exercise, not the ego. Over 15 years, I have been able to maintain my skills but not improve them. Stats suggest I should be experiencing deterioration, especially at my age.

I have struggles with music. I love well composed musical orchestrations. I will crash with poor orchestrations. Very little contemporary music uses good composition. I love acoustical guitar if it has picking based cords. Strumming chords are harder for me to process. My brain can pick out missed timings very easily. Same goes for echos. They quickly cause fatigue.

I have followed a brain training marketing firm since its beginning about 10 to 15 years ago. All of the claims for new developing technologies have fallen flat. Instead, they just repeat the same hype about neuroplasticity with no data to show brain training helps with injuries. I believe the only thing new is knowledge that the brain can continue to change without time limits. Many already knew this long before the neuroscience research industry. Doctors, therapists and insurance companies just did not pursue continued efforts because of the long and costly efforts needed. Most of that change is noticed in severe injuries like stroke, tumor removal and focal injuries. Very little is noticed in global injuries. The expense and effort put in by the man who is chronicled by Droidge shows the extremes it can take. So, I don't wrack my brain trying to fix what is broken. Instead, I just try to maximize what I have by learning new ways to do things. My neuro was shocked to see how well I do with the amount of brain dysfunction I have.
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Old 07-02-2016, 04:37 PM #9
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I still read and play guitar because they allow me to keep my sanity. I enjoy them, they help me fufill my sense of purpose, and they occupy my time. I have definitely cut back on how much I read and have switched more to pocasts and audibooks.

I can read for 5-15 minutes before I need a switch in activity or a break. I can play guitar for 20-30 minutes and brain games for about 10-20 minutes. I have stopped the brain games for now and will try the ones that you do. I started those up thinking that I could rewire and heal my brain, but as you have said in another thread, that's not the case.

Most of me still thinks that I will get most of my life back. I don't know if that's realistic or not. That's part of the reason why I still play guitar and read. I want nothing more than to be able to be fully independent. Right now, I'm fully dependent on my family.
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Old 07-02-2016, 06:49 PM #10
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I guess by getting independence back means a job and place to live. What kind of work were you doing ? What are you trained to do ? Can you reinvent yourself and do something different where you have control over intensity ?

I don't remember (duh) if you have ever had a thorough post concussion Neuro Psych Assessment to determine what works and what doesn't. It can help you find ways to reinvent yourself.

What limitations does schizoaffective disorder cause ?

Have you had any sort of vision testing by a local specialist in behavioral optometry ? You may not need to go to Chicago. Health Care Locator Custom
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