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


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Old 10-18-2015, 08:45 PM #11
seth8a seth8a is offline
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One thing that I just can't get over is that I somehow caused this PCS by not following a step-wise approach to concussion recovery. I just pushed too hard after the accident, I realize now. And sometimes I wonder if I made this thing permanent or caused permanent brain damage by cycling too soon afterward.

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Originally Posted by MicroMan View Post
The responses you received in this thread, Seth, are excellent, particularly Mark's first response. I'm currently working through the transition where I used to try and understand the biology of my mTBI so that I can fix it and return to my old self... this has been a difficult quest filled with angst, anger, frustration, etc., and of course all of those issues get vented at the ones I love, particularly my children.

In the past 6 months, I've taken a new approach similar to what Mark very nicely outlines. I'm working on who I am now while trying to push my recovery... acceptance of my situation has been a relief, in some sense, and I'm sincerely hoping that it improves, but for now I'm trying to "roll" with things rather than "rail" against them. I have fairly significant activity intolerance but I understand the cycle between activity and consequence, and I think that will help.

So, push when can, but not too much, and be patient with your recovery... I've learned trying to speed it up isn't productive
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Old 10-18-2015, 10:49 PM #12
Mark in Idaho Mark in Idaho is offline
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seth, For every 'rest' protocol out there, I can show you someone else who suggests an "exercise" protocol if exercise can be done without causing symptoms like headaches, nausea and dizziness.

But, there is broad consensus regarding the negative impact anxiety has on recovery. That is why so many doctors put their patients on benzos and SSRI's that can create a whole new set of problems.
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Old 10-19-2015, 10:33 PM #13
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Seth,

Second guessing won't change anything of your current situation.

I think anxiety is more counter productive than exercising to early, it certainly has for me.

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Old 10-20-2015, 10:42 AM #14
RidingRollerCoaster RidingRollerCoaster is offline
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Hi Seth

I have been reading your posts and it looks like you've gotten a lot of good advice. I thought I might add my two cents. It sounds like you are a very intelligent person that likes to accomplish a lot and push your capabilities to the max (and maybe a bit stubborn as well). This sounds a lot like me and maybe like others on this forum.

If I could have exercised like you throughout my recovery, I would have definitely. But my symptoms and my body told me that exercising was a no go unfortunately. I seriously doubt you did damage be exercising because your body was ok with it.

What does strike me though is that you said your brain is fried after 4 hours of work - and then you exercise hard - and then you have to have time and energy left for your family. I spent several months of my recovery pushing through like this to the point of total exhaustion every day - to the point where I would just collapse on the couch and be worthless at 4 PM. During this period I felt no improvement and actually felt worse. It wasn't until I made changes in my life and focused on recovery that I was able to make improvement. It looks like you are still early on (3 months?). You have not done permanent damage and you still have plenty of time to figure out a path to healing.
__________________
Injury: March 2014. Hit hard on top of head by heavy metal farm tool. LOC. MRIs and Cat Scans clear. PCS ever since. 33 year old female. Trying to stay positive!

Persisting Problems:
fatigue, dizziness, lightheadedness, vestibular balance and vision problems, vision static, tinnitus, hearing loss, slight sensitivity to noise, sometimes the insomnia comes back, sensitivity to stress, exercise intolerance, emotional problems - But I still have much to be thankful for.
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Old 10-21-2015, 10:21 AM #15
seth8a seth8a is offline
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Yes, I'm definitely a bit of a stubborn person. I am convinced that I probably really made things a lot worse by trying to push through early on. Not the injury worse, just my recovery a lot more prolonged. I didn't take much time off work, and started exercising way too soon afterward.

I actually talked to work on Monday, and they have been amenable to me reducing my hours to nearly part time for awhile. It is a real blessing for me to be able to do this. I don't think I'll ever truly recover with my job at its current pace. I'm also getting a neuropsych test done in a few weeks, and that will tell us more.

I am at 7 months now, actually, so a little ways down the road of recovery. I still cannot get passed the fact that somehow my ignorance of protocol caused this!





Quote:
Originally Posted by RidingRollerCoaster View Post
Hi Seth

I have been reading your posts and it looks like you've gotten a lot of good advice. I thought I might add my two cents. It sounds like you are a very intelligent person that likes to accomplish a lot and push your capabilities to the max (and maybe a bit stubborn as well). This sounds a lot like me and maybe like others on this forum.

If I could have exercised like you throughout my recovery, I would have definitely. But my symptoms and my body told me that exercising was a no go unfortunately. I seriously doubt you did damage be exercising because your body was ok with it.

What does strike me though is that you said your brain is fried after 4 hours of work - and then you exercise hard - and then you have to have time and energy left for your family. I spent several months of my recovery pushing through like this to the point of total exhaustion every day - to the point where I would just collapse on the couch and be worthless at 4 PM. During this period I felt no improvement and actually felt worse. It wasn't until I made changes in my life and focused on recovery that I was able to make improvement. It looks like you are still early on (3 months?). You have not done permanent damage and you still have plenty of time to figure out a path to healing.

Last edited by seth8a; 10-21-2015 at 01:34 PM.
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Old 10-22-2015, 12:21 PM #16
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Mark,

my swimming teacher had a bad concussion which lasted for about 7 months about 5 years ago, she was behind on her school and spent a miserable year. Yet she now claims she is 100% and never had a set back since.

I feel you have a tendency of telling people that this is something you have to deal with the rest of your life, that downturns WILL happen. I am confused. Most people I know don't seem to agree and I really do hope you are wrong on this

After all if I knew that for the rest of my life I won't be able to fly/run/exercise/drink/listen to loud music (concerts) for the next 10 years of my life, I would make a more dramatic decision.

I really really hope that there is such thing as 99% recovery. And if any of you know of these it would be really great to let us know.

Thanks

J
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Old 10-22-2015, 01:15 PM #17
Mark in Idaho Mark in Idaho is offline
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I never said you can't fly/run/exercise/drink/listen to loud music (concerts). What I said is, These activities may cause you to have a poor day afterward. Most are more sensitive to alcohol. They may get drunk easier or have a hangover that is more problematic. I did not say you cannot fly. I fly in airline cabins. But, private pilots flying in unpressurized cabins at high altitude for extended periods may be putting their safety at risk. Flying as a passenger is not a risk.

Exercise that cause high peaks in pulse and BP may cause headaches more easily that prior.

If you choose to go to a loud concert and have a bad day after, take it slow and you should return to normal soon. I just would not plan a loud concert the day before a critical task at work or elsewhere.

If you find from experience that you can push the limits, good for you. Most people do not connect their prior concussion to later bad days. Instead, they might load up on caffeine thinking they are just tired.

btw, If you like loud music, spend a day in a retirement community and observe the frustration people have when they struggle to hear. I have a 10% loss in the high frequencies due to noise.

It's not like these activities will cause PCS to come roaring back. Just that they may cause one to have a slow/bed day. As you age, you will find that many body systems have less tolerance for stress. This is true for people who never had a head injury. It's just more so for us.
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"Thanks for this!" says:
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Old 10-29-2015, 09:01 AM #18
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Mark, the post you wrote for Seth was a wonderful thing for me to read. I was at a very very low point, and it was exactly what I needed to hear. I have felt so much fear and anxiety over my future. To not be able to interact with people, to not be able to have my intellect handy, I am self-employed and haven't been able to work. My wife is a stay-at-home mom it feels like we're about to lose everything. That fear is worse than the symptoms.
Thank you everyone on this blog or formum for sharing your symptoms and your struggles I don't feel as alone as before I began reading yesterday. Before I would try to shake my head and just snap out of it felt like it was my own weaknesses, Like maybe I was just after attention. Now I know.
I am almost 2 1/2 years removed from my last concussion which was a baby concussion I didn't even hit my head just ran into a pick playing basketball and the lights went out it didn't help that was my 12 time unconscious, And several of the earlier ones were very big. I never got any anger with any of the earlier ones just a little bit of irritability and a hard time finding my words. Now I can't take motion or sound, my right ear is always plugged,and when it does hear it sounds very funny, the tmj on that side always feels like it wants to pop. I take tons of supplements. I have tried juice feasting a ketogenic diet, gluten-free dairy free grain free. Organic vegan. I thought the ketogenic diet was going to be a answer, I felt hundred percent normal for a month and then I think I must've overdid it and this is the worst I've ever been I haven't been to work for a week and a half and I don't know if I'll ever get to go back. I love my job I think that's part of my stress my anxiety and my fear.
For a couple hours a-today usually after I am rundown I think I'm done, I don't want to play this game anymore, I feel as though I am a large burden on my wife and family. I think I can make it, and I think this message board is going to help.





Quote:
Originally Posted by Mark in Idaho View Post
seth,

You don't need to accept that this is as good as you will get. You just need to accept that this is real and where you are right now and move forward from here. This is a starting point for the rest of your life. This is not an ending point. You must not look at this as a deficit point. What happened is done and past. You cannot change what happened when you fell.

We can impact our future. We cannot impact our past. Getting stuck in the past prevents us from moving on into the future.

You have all the intelligence and skills you need to make a brilliant future your yourself and your family.

Researchers notice two things about intelligent and accomplished people with prolonged or even persistent PCS. First, they are far more aware of and focused on their struggles because they are used to such high levels of function. Second, they are the best at learning work-arounds and accommodations because they use their intellect to figure things out. They notice patterns and triggers. They adapt.

If you were lost in time about the date, it does not change anything. I could not tell you the date without looking at the clock on my computer or at my cell phone. I have lived successfully for decades like this. I actually learned that I do better when I am less focused on time. I plan my day better. I was in business in an industry where I needed to arrive on time at customers homes or businesses. A wall clock at the shop was all I used. No watch. I planned my day with a looser schedule but was still just as productive. But, I was not as anxious.

If you feel better exercising, that is evidence that you should continue.

But, as I have said many times, recovery is measured in long time intervals, two weeks minimum with one month as a a common interval. As you ride the roller coaster, if last month you had 10 down cycles but this month you had 8 down cycles, you are improving. But, those down cycles will happen, even after you have achieved peak recovery.

If there is one issue you need to accept for the future, it is that you are highly likely to experience down cycles from time to time for the rest of your life, usually as the result of a stressing trigger. Many of us plan on these down cycles because we want to take on the stressful activity and the down cycle is an acceptable temporary risk.

But, it appears you have not yet been able to fend off your anxiety over your symptoms or future yet. When you achieve victory over these, the next step in your recovery will begin. Maybe you will benefit from counseling. Only you can make that decision.

But, I for one, believe you can do it. You can defeat your anxiety. You can focus on a new future rather than your past.

And, you can accept the fact that you did nothing subsequent to your injury that changed the progression of your symptoms. The only thing that would have changed the progression of your symptoms would have been another fall and injury or maybe getting blotto drunk or ill with a very high fever. If you delayed recovery, it was only by a few weeks. But that would not even be measurable.

So, look to your future. You have a lot to look forward to.

btw, Over the past 6 years, I bet there have been at least 10 people who saw big improvements after 18 months.
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Old 10-29-2015, 01:47 PM #19
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Tony,

I am self employed also. Been a hard road being scared and unable to make decisions at something you enjoy and have been doing for years without problems making decisions.

Hang in there...we'll make it. I am gaining ground very slowly, but gaining.

Bud
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Old 11-04-2015, 10:38 PM #20
lilyNYC lilyNYC is offline
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Hi Seth,
I understand the internal conflict and the guilt about our actions that we feel may have prolonged this battle. I still haven't figured this out for myself, or found acceptance. Not meant to confuse, but purely provide some positivity with the following link.

http://www.buffalo.edu/news/releases/2013/03/001.html

Apparently, they found graded exercise to be beneficial. The Dali thing? Totally relate to that at the end of a long 12 hour shift, it literally happens every day at work. It seems there needs to be a happy medium place between a little exercise/activity and too much. If it helps at all, all of the doctors I have seen about the PCS and symptoms all say the same thing, 30 minutes max of exercise but daily if possible to encourage blood flow to the bruised parts of our brains.

I hope you find peace on this subject, even a pinch is a milestone when it comes to dealing with this. You aren't alone, I personally appreciate posts you've responded to of mine. It seems that when we aren't strong, at least someone else on here can be strong for us at that moment in time.

I recall you mentioning something about your vision. Random - but have your pupils been more dilated than usual? A fellow nurse pointed out to me that mine have been incredibly dilated, I've noticed this too since the accident. We were trying to figure it out. Going to the eye doc tomorrow, but perhaps this is what's causing the photophobia/part of the visual disturbances for you?

Wishing you well.
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