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


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Old 09-22-2012, 04:39 PM #1
DFayesMom DFayesMom is offline
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Confused New Here, On Medical Leave

Hi Everyone,

I'm new to this forum. I've had three minor concussions in the last two years and am on a leave of absense from work after the most recent one due to cognitive issues. I'm sure many of you are in a much worse off position, as I never lost consciousness after any of my concussions, but I'm definitely having issues! Here's the brief version of my story.

Two years ago, when I was pregnant with my daughter, someone rear-ended me while I was stopped at a light and I whacked my head on the side window. I went to the hospital to get checked out but we were okay other than my mild concussion. A little over a year later, in December 2011, I was getting a roll of paper towels from the basement, and rather than walk all the way down the stairs, I just leaned over the railing and when I stood back up, I hit my head really, really hard on a beam of old wood that practically seems petrified. I saw some serious stars and felt dizzy. I had to sit down to compose myself. At the time, I was mainly just embarrassed that I did something so clumsy and stupid! I iced my head, took some Ibuprofen, and just blew it off, even though I knew this was a much worse concussion than the one I got during the car accident.

Ten days later, I was getting out of my car and I lightly hit the back of my head on the door frame, and it hurt like hell! It was only then that a little lightbulb flickered on in my concussed brain. I thought, "Oh my gosh, I hit my head! That's what's been wrong with me!" I had forgotten about hitting my head altogether, and so I'd been wondering why I'd been having headaches, feeling totally out of it, being extremely forgetful, losing small bits of time, and driving like a menace (due to the losing of small bits of time). I had just thought I was losing my mind! In that 10-day period, I had almost been in 5 car accidents. They were extremely close calls! One was in the parking lot at work, when I ran a stop sign and nearly hit my boss! At that point I called my doctor, but we were about to leave town for our Christmas vacation, so I just determined that I wouldn't drive until I felt better and would go in for an appointment when I got back in town. By the time we returned, I thought I felt better and didn't bother to go.

Flash forward eight months to three weeks ago, when I ran a stop sign two blocks from my house and was hit by an oncoming van, spinning out into a parked car. Yep, another concussion. I have an excellent driving record and hadn't caused an accident in 16 years (when I was 19), so I couldn't believe what I had done. I knew I had been in outerspace when I ran that stop sign, and it really scared me. Thankfully, I was the only one injured.

After the accident, my husband confronted me. He told me something wasn't right, that I'd been acting strangely for months--really spacey and forgetful. My husband told me he hadn't said anything to me about it because he was trying not to be critical, as he tends to be, and because he thought it may have just been the effects of new motherhood or maybe even post-partum hormones. I knew he was right, had noticed the symptoms myself, and had even gone to the doctor about it, but she didn't find anything wrong with me. Also, I have ADHD, so it was difficult for me to differentiate the symptoms of post-concussion syndrome and this disorder I had my whole life. I thought of my issues as my ADD symptoms being worse than they'd ever been but couldn't figure out why. When I asked my husband how long he'd noticed me acting differently, he said, "I don't know, maybe since December." Later that night, after he'd fallen asleep. it dawned on me that my concussion had been in December.

I took the day off from work to recover, but the next day, in an email, I asked my friend/coworker of five years if she'd noticed any changes in me, explaining what my husband had said. Her response was, "I've been wanting to say something to you about this for so long, but I didn't know how to without hurting your feelings." She then gave me a list of things she'd noticed, anything from asking the same questions over and over again to messing up a lot at work to being unable to make simple decisions like what to eat for breakfast to being withdrawn in group situations. This confirmed it for me, something was definitely wrong! I went to the doctor, and she suggested I take a leave of absense from work and see a neurologist.

I got a CT scan, but it came back normal. I'm still waiting to get into see a neurologist after three weeks! It's very frustrating! I'm still waiting for them to call me and make an appointment. Is it like this for everyone? As it is now, I'm not working and not driving. I'm banking on the neurologist being able to determine if it is safe for me to drive or not. I don't want to risk any lives, especially my daughters. I'm just hoping I'll see the neurologist before I have to go back to work.

Anyway, at this point, though my doctor thinks the concussion likely caused the symptoms, I have basically diagnosed myself. I'm still waiting for the neurologist to determine what's going on, I guess. Question--could the pyschoeducational testing I got done twelve years ago provide some kind of baseline for my neurological evaluation. Just wondering, since I do have attention deficits to begin with! I really don't know what to expect!

Thanks for reading. Sorry if I went on for too long! Any advice would be appreciated!
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Old 09-22-2012, 10:37 PM #2
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DFayesMom,

Welcome to NeuroTalk. I am sorry to hear of your struggles and injuries this past year. You will likely get better information here than from the neurologist. Most have very little understanding of concussion let alone what you are experiencing.

If you want a good driving analysis, you need to be checked out by a driving rehab therapist. The neuro can not make that decision for you.

I stopped most driving on my own. I would defer to my wife when we were together. Then she was following me, pulled me over, and I came clean. Now, I only drive on my good days and in light traffic. I had three close calls last fall when I needed to drive because my wife was at work. I had bumped my head working on my truck in early October and it sent my brain spinning for 6 months.

The common problems with driving caused by PCS are:
Easily distracted by other stimulation.
Loss of peripheral vision skills
Almost imperceptible absence seizures where the brain loses focus for a second or two.
Lack of ability to multi-task leaving the brain completely focused on one task. For me this was, trying to shift, watch for traffic, and work the brake, clutch and gas pedal at the same time. I just froze.

I know far too many brain injured people who have received their life changing injury from another driver who was not fully focused on driving. Life is too long to live it with a history of maiming or killing someone with your inattentive driving.

Plus, you have a little one who needs you safe at home. Or not putting her at risk.

You likely have what is called Multiple Impact Syndrome. It is an accumulation of concussions that combine to cause longer term dysfunctions. You need an extended period of quiet rest to see if your brain can recover. You should also be supplementing your brain's nutrition with B-12, omega 3,6, and 9 fish oil and a bunch of other stuff. I can list it all later.

Unless you can seriously reduce your work load/stress load at work, you need to take some time off. Many have tried to recover while continuing their busy life. It rarely works.

As one who fully understands what limited driving is like, please be very careful before you get back on the road. I drive less than 500 miles a year most years and less than 1500 miles on my good years. I went 2 years without driving at all. Those near misses can be very scary. I have never made contact with another vehicle and do not intend on letting my brain cause an accident.

Actually, I should call it a collision. Accidents are accidental. Driving while compromised results in collisions. Here in Idaho we have a violation called inattentive driving. You don't even have to violate the rules of the road to be cited for inattentive driving.

Hear is a link I found for you. http://medicalcenter.osu.edu/rehabil...g-Program.aspx

My best to you and yours as you deal with these struggling issues.
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Last edited by Mark in Idaho; 09-23-2012 at 01:25 AM.
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Old 09-23-2012, 09:06 PM #3
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Default Thanks, Mark!

Thank you so so much for telling me about driving rehab therapists. I had NO IDEA they existed. I'm going to talk to my doctor about it on Wednesday. I'm assuming she would have to refer me?

I know the driving issue is a very serious one. The only reason I kept driving was that I was totally in denial. Denial can kill you! I'm so glad that it didn't kill me or anyone else! Now I am committed to not driving until I feel it's safe, and a driving rehab therapist would really help me evaluate my capabilities, so I'm really excited about that, because I don't think I'm a good judge of myself. I obviously haven't been in the past.

From your post: The common problems with driving caused by PCS are:
Easily distracted by other stimulation. YES! This may be my main problem! I just know that when I'm driving, it is absolutely excrutiating to have to focus on the task at hand.
Almost imperceptible absence seizures where the brain loses focus for a second or two. I wonder about this. Would this explain my losing time? An example of this is that I would carefully check my blind spot, see no one was there, and start to merge, only for a car to be there after all. It wasn't because they were speeding up or I wasn't seeing them. It was like more time passed between me checking my blindspot and me merging than I thought, or at least that's how it seemed to me.

I'm REALLY interested in knowing what supplements will be helpful to me or any literature on this subject. If you could post a list, that would be great. I'm also just wondering, if the neurologist isn't going to be that helpful, which I find disturbing, where can I turn for concrete research on this syndrome? Lastly, I'm interested in what you are saying about rest being helpful in recovery. I can say from my experience thusfar that I am doing MUCH better at home than I would be if I were working right now, but I just wonder if there's research about this?

The sad thing is, my job shouldn't even be very stressful, because it's not hard! I've always joked that a trained monkey could do it, and now, I can't seem to do it without screwing up. Therein lies the stress!

So, I guess when I return to work in three weeks--I have no choice, I need the income--I will have to implement some stopgap measures to try to prevent my errors. I've been thinking a lot about it, and I think that the kinds of mistakes I've made in the past eight months are preventable.

Thanks so much for responding to my post with such useful information. I really appreciate it!

Best,
Kristen
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Old 09-24-2012, 01:46 AM #4
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Kristen,

Thanks for your honesty about your driving struggles. It is the start of learning to self-evaluate. PCS causes many blind spots, both visually and cognitively. I used to be a private pilot and owned my own high performance aircraft. I stopped flying after my second episode where I landed my plane without completing the pre-landing checklist.

Checklists are drummed into the mind of pilots during training. I used them with discipline. I know I started the pre-landing checklist but only completed 2 or 4 checklist steps. The second time this happened, I realized something was wrong and parked my plane while trying to figure out what happened.

When I drive, I am aware that I sometimes have similar struggles. At least when I am driving, the car will not dig a smoking hole into the ground. It still requires serious discipline to drive safely.

If you see a driving rehab therapist, please keep in mind that they only see you drive in limited circumstances. My check ride went lousy for me but the therapist said I was fine to drive because I pulled over and stopped when I had a problem. She did not consider the problems that could have arisen if I did not have a chance to pull over and stop. I had a melt down crossing a very busy intersection with cars, bikes, and pedestrians. I made it to the other side and stopped.

Regarding nutrition, I recommend a daily regimen of:
Vitamin b-12, 1000 mcgs
a B-50 complex
a high potency multi-vitamin like GNC Mega Women (not One a Day or Centrum)
C,
D3,
E,
Magnesium,
Calcium
Omega 3, 6, and 9 fish oil

Avoid caffeine, alcohol, MSG, and artificial sweeteners (aspartame/Equal/Nutrasweet and sucralose/Splenda are the worst)

Good meat protein is good from amino acids, pork is the best.

Regarding your job,
The environment of a job can be as stressful as the cognitive effort. If there is noise, visual clutter, visual stimulation, smells, voices, and any other stimulations, they all cause stress, especially to the injured brain.

As you consider your financial needs, consider than you will be able to save on child care costs and even be able to reduce car insurance premiums if you continue to not drive. I reduce my insurance to just comprehensive when I know I am not going to be driving.

Those who have researched PCS and have long term experience treating PCS have all found that quiet rest is the only reliable way to recover from a concussion with prolonged symptoms. Dr Robert Cantu in Massachusetts is likely one of the top 5 in the world. He has been writing about concussions since the mid 1980's.

The brain needs the rest so it can start to sort out the injury. The constant metabolism of the brain needs to be slowed so that toxins can be purged faster than they accumulate. The most common concussion injury is called diffuse axonal injury. This when the millions of fine axons that transmit the information get damaged. These same axons are covered by myelin, a insulation like covering. This myelin has a drainage system similar to the rest of the body's lymph structure. It is called the glymph system because is is part of the glial cell system.

When the axons, myelin, and glymph system is damaged, the toxins are very slow to be removed from the brain. When any of these systems try to heal, they need to discharge the toxins from the injury and the rebuilding process. So, it is an all or nothing kind of healing system. The rest reduces the speed of the toxic build-up so it can be flushed.

There are many on NT who have experienced the value of rest after trying to work through their need to recover.

The rule of thumb I suggest for cognitive activities during this rest is anything that requires manual effort but not a computer or mouse. The hands can not work faster than the recovering brains limits. Things like playing solitaire with a deck of cards, knitting, sewing, crafts, fishing, and just about any manual activity are just enough cognitive stimulation. Playing with a toddler would fit with this.

Taking a nap during the day will also be good.

There are no ways to prognose how much recovery you will experience. As you recover, you can undo weeks of recovery with a single high stress event like a trip to the mall that was too long or attending a social activity with lots of sounds and voices. Grocery shopping should be done during slow times or by someone else. Plan an escape route for those times when you need to escape excessive sights and sounds when you are out in public.

If you need some resources to help others understand your condition, there are two great resources. The TBI Survival Guide at www.tbiguide.com is 84 pages of great information. The 6 segment YouTube video series "You Look Great" at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be takes about an hour to watch.

More later if you have more questions.

My best to you.
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Old 09-24-2012, 09:57 AM #5
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Default Relaxing!

Thanks, Mark! I will check out the resources you suggested. I had no idea that rest was so important to my recovery. I have not been doing a lot of resting, to be honest. I mean, I feel guilty for being at home. I feel like, well, if I'm going to be home, I'd better get stuff done. I've been cleaning like a mad woman, doing projects around the house, and living by a to-do list (I wouldn't know what to do otherwise). Now I wonder if I just wasted three weeks of recovery time? I can't help but laugh at myself! Well, from here on out, I'm going to really try to reduce my stress and relax more, rather than scheduling short periods of downtime during my busy day. I do go for walks every day, which is relaxing!

I probably spend too much time on the computer or messing around on my iphone. I haven't been reading much due to lack of attention. It's difficult for me to not be distracted, which is unusual for me, even with my ADHD. I've always been an avid reader. With that in mind though, are there any books you'd recommend to me? It might take me longer to get through a book, but I could still give it a shot!
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Old 09-24-2012, 11:50 AM #6
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I found reading to be too taxing. Fiction was the worst. The need to track multiple characters and plots was too much for my brain. I read a half dozen magazines per month. I ended up cancelling them all.

I do think you wasted recovery time. You were put on medical time off for your need to quiet down.

Your ADHD is another issue. My whole family (siblings) have been diagnosed ADD/ADHD over time. Most have found they do better with choosing to change their behavior than rely of meds. The long term risk from ADD/ADHD is a tendency for Bi-Polar Disorder. Learning to let go of the need to respond to everything and do everything is possible. Much of the behavior is learned. CBT (Cognitive Behavioral Therapy) can be very helpful. My signature verse "Be still....." is about letting go of the need to be constantly busy. I used to be the worst work-a-holic.

As for something to read, Download and print out the TBI Survival Guide and read it slowly. Highlight the appropriate concepts. Understanding your condition will be very worthwhile.

Have you had your little one home with you?
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Old 09-25-2012, 08:03 AM #7
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Default Hmmmm . . .

Yes, as I said, I did waste my recovery time. I laughed about it, because what else can I do? I just have to do better from here on out!

I disagree with your opinions on ADHD. I think that a combination of meds + changing cognitive behavioral patterns is the best approach for me. Of course, everyone is different! My brother has ADHD too and meds don't help him, so I would never try to tell someone what is best for them. Also, it's not true that "the long term risk from ADD/ADHD is a tendency for Bi-Polar Disorder." Having ADHD is not going to lead to bipolar disorder. What is true is that ADHD and bipolar disorder can be comorbid, just as ADHD and depression or anxiety or OCD can be comorbid. I am not bipolar, but I have a tendency toward depression and anxiety. (Who wouldn't get depressed or anxious now and again when it feels impossible to live up to society's expectations for you?) Lastly, the idea that "much of the behavior is learned" totally misses the point of what ADHD actually is! For one, there's plenty of evidence that it's a genetic condition. It is certainly not a set of learned behaviors! It is a difference in how one perceives the world and in how one's brain functions. My whole life, it's like I've been in this fog, trying to do what everyone else does and to connect with others. I won't go on and on about it, but I was just surprised by your idea of what it is, because I think it shares a lot of common ground with symptoms of PCT. All of this said, our current culture of iphones and multi-tasking does encourage ADHD-like symptoms in non-ADHD people. That isn't ADHD though!

Being still is difficult for me, but I've been working on being present in the moment. It's hard.

My LO has been home with me 2-3 days of the work week and in daycare the rest of the time. We wanted to keep up some of her routine. I enjoy having her home with me, but it's nice to have the other days free to deal with insurance issues and go to doctors' appointments!
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Old 09-25-2012, 09:09 AM #8
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Everyone's entitled to their own opinions here, and that's what this forum is all about -- sharing of opinions, information, experiences, what works for them and what doesn't work for them.

I'd encourage members to not state their opinion as a fact, however. It is not a fact, for instance, that long-term ADHD turns into bipolar disorder. That may be one member's opinion, but it's not anything established by the research.

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Old 09-25-2012, 01:04 PM #9
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I may have mis-stated the link between ADD/ADHD and Bi-Polar. It was in reference to my siblings and others I know. 3 of 4 siblings diagnosed with ADD/ADHD have been told they are Bi-Polar. One is more seriously bi-polar and 2 others have many symptoms, tried the bi-polar meds, and found they did best with mild meds and behavior mods.

I have had a long time view that much of ADD/ADHD problems are do to everybody expecting the same behaviors of each other. I see it as the ADD/ADHD are racing through life at a fast pace darting in and out of traffic as everybody else is trying to stop them from darting in and out of traffic. Instead of the conflict, we need to just learn to side step to avoid each other to avoid collisions/conflict. At least that was how we tried to deal with things before I went on an SSRI to deal with my brain getting stuck on a mundane thought and looping that thought for hours or days.

I may have a different view of ADD/ADHD because most of those I know with the diagnosis have been able to achieve academic goals easily and most of their ADD/ADHD struggles have been interfacing with co-workers and teachers/ fellow students. I know that some struggle to achieve academic goals due to their ADD/ADHD but I have not known many with that struggle.

There have been many successes using qEEG based neuro-feedback to help the brain find balance. Volitional neurofeedback/biofeedback has a long history of use with ADD/ADHD. Some have found improvements with their PCS.

I can't imagine how the mix of serious PCS and ADD/ADHD can mix. Sorting through the mix of symptoms must be miserable.
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Old 10-02-2012, 02:10 PM #10
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Default Thanks, Mark.

Yes, it is frustrating!

I've been avoiding this forum, since it was just causing me anxiety, but I came back due to new symptoms--vertigo, ringing in my ears, and a headache triggered by bending over one too many times I guess. (It's hard not to when you've got a toddler to chase around!) I am now taking rest very seriously, praying that this spinning sensation stops!

I think the issue with ADHD is that you are going to want to be constantly distracted but you have to fight that impulse. I think the concussions have made that much harder for me. I've had to seriously restrict my tv viewing and internet surfing and force myself to just focus on healing and on my family.

I did struggle in high school and college due to my ADHD, but my grades went up a full grade letter after I got on meds and got better organized. In grad school, I got straight As! On a normal day to day basis, before the concussions, I was doing fine. I had my moments and definitely tended toward spaciness, but this is something else all together! I'm just glad that I at least know what is going on now, but I just wish these physical symptoms would go away! The cognitive ones are no fun either, but I'd rather be forgetful and foggy than constantly dizzy! It sucks!

Thanks for listening.
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