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


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Old 09-13-2022, 05:12 AM #1
DeanBJJ DeanBJJ is offline
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Default Will I ever be able to live almost normally again?

Hey everyone.

I'm at a point now where I am thinking about my QOL long term for certain things

I've been seeing the following:

PT - for neck pain, tightness etc. Have had acupuncture weekly, massage and now some strengthening exercises.

Phsychologist - For servere anxiety about little bumps/knocks and constant worrying about concussion.

Concussion specialist - Just monitoring me and my recovery

For anyone who hasn't seen my journey I'll give a brief list here:

April 2020 - Fell off Motorcycle and hit my head. No concussion but definitely took a knock.

November 2020 - First concussion. I used to train BJJ (combat sport/grappling) and took a knee to the eye by accident. Never had a concussion before. Wasn't knocked out just pain in eye. Drove home but felt off and light in the head and just wrong. Got checked and yep concussion. Was off work for 7 days, and was pretty **** for the first 3 or 4 days where I couldn't look at screens and slept a lot.

Went back to BJJ 3 weeks later, and was great.

March 2021 - Second concussion. Was such a light knock. Head bounced off a semi-soft mat a few times from like 5-10cm height. Instantly felt off and got diagnosed with another concussion. Weird thing was I started a new job 3 days later and took in A LOT of new info and was working mostly fine. I definintely felt light headed/dizzy/tired at points, but apart from avoiding sport I did everything pretty much normal.

PCS/anxiety/WAD started after this injury.

Advised to take a year off from BJJ and did so. Did not exercise for 5 months (definintely a mistake). Got back into sport etc and started to get better.

Was going great and cleared to return to BJJ.

Returned in March 2022.

May 2022, received a light bump to head. Kept training but when walking out of training I was a bit unstable and felt wobbly. Went to doctor and they "diagnosed" a concussion. Thing is I had not eaten for about 7 hours, was dehydrated and had a REALLY hard training, so I could have just been overworked/exhausted. I wouldn't have even thought of it as a concussion.

May 2022 - Three weeks later, I recieved an actual hit during training. I was bumped forward and more forehead drove straight into the ground. Wasn't TOO hard but I did feel my neck bend. Definitely felt off. I had 3 big nights the following 3 days (events etc), and while I was able to attend them, I had to rest all day and then go to them and then was tired/exhausted after. So this one felt like a concussion slightly.

June 2022 - Sadly, as I was coming right from the previous "knock" I had my car boot slam down on the back of my head. Definitely threw me and I basically slept for the next 2 days straight so definintely thought it was another concussion.

So anyway, here I am September 2022 and while I am feeling better, I'm certainly worse than I was when recovering during the 2021 year after 2 concussions.

The main things I am concerned about now are wanting to feel normal again and return to being active.

Right now, I can not even run down the stairs or even run full stop. I can't even walk fast without the back of my neck and head flaring up.

I don't want to return to combat sports, that has sailed.

But I want to be able to jump, run and MOVE fluidly again. Right now, I avoid jumping, or running or anything harsh that creates a jolting motion in my head.

I am working very well through the anxiety triggers like little bumps A LOT better now.

So now that I am beginning to control that, I'm looking towards wanting to get moving again.

I read this:

(Minor things jarring my head-Is this my life now?)

Someone mentioned that some people "have to deal with this phenomenon for the rest of their lives and do learn how to adjust their movements to minimize this from happening."

This worries me and makes me think I'll always be battling.

I just want to be able to do things like snowboard, or ride roller coasters, or drive without feeling the bumps in the road, run, jump, headband at a concert etc.

Right now, I just feel so stiff. I literally walk slow and careful all the time, afraid of bumps/jolts. I literally cannot walk hard in dress shoes as I FEEL the jolt through my head.

It is honestly so depressing.
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Old 09-13-2022, 09:01 AM #2
davOD davOD is offline
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Normal? In all honesty what is normal? You are doing all the right things, KEEP IT UP!
Your life will change, you will change, and thats not a bad thing....I say it alot that "acceptance" is the key. Now for each of us thats all different.

I had a harder time not being able to ever work again, and that took me 10 years to accept that part.
For all my other problems, it took help, therapy, meditation, yoga, and slowly starting to listen to music again.

Im now getting close to 16 years. I have forgot so much, lost so much. But Im here, Im alive, I have peace, understanding, empathy, and try very hard to always see the bright side.

I truly wish you the best to find that light hold on to it and never let go! Life is so short, I got a second chance, and now you have a second chance!

Make the best of it, you will have ups and downs, just do not give up. Giving up is the easy way out.
You can PM me anytime, as I want everyone here to have some happiness in their lives.
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Old 09-15-2022, 09:40 PM #3
Mark in Idaho Mark in Idaho is offline
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"I just want to be able to do things like snowboard, or ride roller coasters, or drive without feeling the bumps in the road, run, jump, headbang at a concert etc."

Give up on ever head banging. That is very dangerous. It disrupts the fluid flow and control in the brain and can cause life threatening damage.

Head banging IS NOT NORMAL BEHAVIOR.

Riding roller coasters will require learning how to ride them so the vibrations and quick movements are moderated.

Think of it this way. You made bad choices with BJJ. You cannot undo those choices.

I bet your PT and others are over stressing your neck. You need strengthening with minimal movement. Expect it to take up to TWO years to stabilize your neck if you are disciplined. You need to learn new movement disciplines.

STOP WHINING. That only makes improving more difficult. It stimulates the wrong chemicals in the body.

From past experience, most in your situation need a short period of medication. An SSRI, SNRI, or such. Some use natural supplements like 5-HTP and L-Theanine.
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Old 09-16-2022, 08:23 PM #4
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It sounds like you have made progress handling triggers better. Keep it up. Progress is slow. The fare-ups should become less severe over time.
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Old 09-23-2022, 06:07 AM #5
DeanBJJ DeanBJJ is offline
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Quote:
Originally Posted by Mark in Idaho View Post
"I just want to be able to do things like snowboard, or ride roller coasters, or drive without feeling the bumps in the road, run, jump, headbang at a concert etc."

Give up on ever head banging. That is very dangerous. It disrupts the fluid flow and control in the brain and can cause life threatening damage.

Head banging IS NOT NORMAL BEHAVIOR.

Riding roller coasters will require learning how to ride them so the vibrations and quick movements are moderated.

Think of it this way. You made bad choices with BJJ. You cannot undo those choices.

I bet your PT and others are over stressing your neck. You need strengthening with minimal movement. Expect it to take up to TWO years to stabilize your neck if you are disciplined. You need to learn new movement disciplines.

STOP WHINING. That only makes improving more difficult. It stimulates the wrong chemicals in the body.

From past experience, most in your situation need a short period of medication. An SSRI, SNRI, or such. Some use natural supplements like 5-HTP and L-Theanine.
Hi Mark

I just want to preface by saying I appreciate all the help and advice you give to everyone on here.

However, I have started to see a few things that I disagree on and that I think you are making an incorrect judgement on.

Firstly for the headbanging. You say it is not normal behaviour. I disagree. Headbanging is a type of dance and as long as it is done at a reasonable rate does not cause any issues.

I'd like to see some actual evidence regarding this "It disrupts the fluid flow and control in the brain and can cause life threatening damage." Because if this is true, I'd like to know this.

But I play in a Thrash/Death metal band and have played music and headbanged all my life. I've attended MANY concerts and thrashed around, headbanged HARD when I was younger, pushed and threw myself around in the pit with others and never suffered anything more than a sore neck the next day or two.

I'm not disagreeing entirely that headbanging is dangerous, as it CAN be when done too aggressively, too prolonged or too fast, but when I say I want to return to headbanging, I'd not saying I want to return to thrashing my head up and time like I am trying to rip my head off, I'd just like to be able to move my head back and forth at a reasonable rate without fearing I'm going to injure my brain.


Onto my next point "You made bad choices with BJJ." I really don't think it is fair to say they were bad choices. That is like me saying to you that you made bad choices driving everyday to work as you could crash and really injure yourself.

BJJ was a hobby, a huge passion and love for me, and I did it without issues for the better part of 2 years. Yes, I did suffer setbacks, but I did a sport I enjoyed.

I then tried to go back, found I couldn't, and hung it up. Those are not bad decisions, those are tough decisions I made for a sport and hobby I love, something in life I enjoy.

Now, I did actually have a few questions:

"Riding roller coasters will require learning how to ride them so the vibrations and quick movements are moderated."

- Can you explain what you mean to moderate vibrations and quick movements?


"I bet your PT and others are over stressing your neck. You need strengthening with minimal movement. Expect it to take up to TWO years to stabilize your neck if you are disciplined. You need to learn new movement disciplines."

- What do you mean I am overstressing the neck? Too much massaging and acupuncture?

- What are "new movement disciplines?"

Cheers
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Old 09-23-2022, 06:10 AM #6
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Quote:
Originally Posted by DrewDigital View Post
It sounds like you have made progress handling triggers better. Keep it up. Progress is slow. The fare-ups should become less severe over time.
Thanks Drew!

It is tough and my gosh, no injury has ever been as debilitating.

The fear of concussions and movements is 1000x worse when it is your brain vs bones/ligaments etc.
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Old 09-23-2022, 01:57 PM #7
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Quote:
Originally Posted by DeanBJJ View Post

Firstly for the headbanging. You say it is not normal behaviour. I disagree. Headbanging is a type of dance and as long as it is done at a reasonable rate does not cause any issues.

I'd like to see some actual evidence regarding this "It disrupts the fluid flow and control in the brain and can cause life threatening damage." Because if this is true, I'd like to know this.

But I play in a Thrash/Death metal band and have played music and headbanged all my life. I've attended MANY concerts and thrashed around, headbanged HARD when I was younger, pushed and threw myself around in the pit with others and never suffered anything more than a sore neck the next day or two.

I'm not disagreeing entirely that headbanging is dangerous, as it CAN be when done too aggressively, too prolonged or too fast, but when I say I want to return to headbanging, I'd not saying I want to return to thrashing my head up and time like I am trying to rip my head off, I'd just like to be able to move my head back and forth at a reasonable rate without fearing I'm going to injure my brain.
DeanBJJ, I have no personal experience with PCS or TBI, but even I know that there are a number of research studies, and also other reputable warnings regarding the potential damage of headbanging to both brain and neck. If you do a search on eg Google you will find a lot of info.

Here is just one example
Headbanging: Doctors highlight potential dangers at hardcore rock 'n' roll acts -- ScienceDaily
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Old 09-23-2022, 08:15 PM #8
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DeanBJJ,

We had a heartbroken mother here on NeuroTalk some years ago. Her son went to a concert and spent the night headbanging. He almost died from the damage he did to his brain. He eventually was committed to a mental hospital because he could not control his behavior and had residual brain injury symptoms that prevented him from being able to take care of himself.

There have been many cases of serious brain injury from headbanging.

The brain has two primary fluid systems, blood flow and cerebral spinal fluid. Both are regulated by a complex systems of shunts/valves. These can become disabled by excessive stress.

Second Impact Syndrome is a failure of these fluid regulating systems. A person suffers a concussion/mTBI and this system becomes challenged. Improperly regulated fluid pressures cause headaches, and the various neurological struggles/symptoms. Another impact/stress before this fluid regulating system restores proper function can be deadly. Second Impact Syndrome has killed many and seriously injury many others. A world champion snowboarder named Kevin Pearce almost died. Read his story. He talks about how he has to moderate risk.

Headbanging can challenge these same fluid regulating systems. It can also prevent your upper neck from becoming stable.

If you think it is normal, then return to doing it. See how you tolerate it.

To be direct, your past experience with headbanging could have put you at a higher risk of your recent concussion experiences.

BTW, My neck instability allowed my neck to get inflamed when stressed. That inflammation caused my brainstem/autonomic nervous system to be challenged by poor blood flow. When this happen, my blood pressure can drop to dangerous levels. My breathing control can fail and I stop breathing. Central Sleep Apnea has plagued my for 22 years. I manage it my keeping my upper neck healthy and by not sleeping with poor head and neck posture. It took me almost 3 years to regain neck stability.

Regarding roller coasters...

I love roller coasters. When I ride a wooden roller coaster, I sit forward so my upper back is not impacted by the shaking seat back. My upper back absorbs the quick movements and I have no problems.

On steel coasters that go much faster, are smoother, but have higher G forces, I hold myself in the safety guard so my head does not impact the guard or seat back.

Regarding PT and such overstressing your neck...
The occiput to C-1 and C-1 to C-2 joints are not faceted like the other vertebra. They do not self center into normal position. They are held in place by ligaments and tendons. When those ligaments are stretched and/or torn, they do not heal readily. Normal movements continue to stretch them. The standard PT protocol is to work on range of movement.

You can believe me or deny me. Doctors do no often discuss these issues because they have no objective way to diagnose these problems. MRIs, CT Scans, and such will not show these. A few concussion experts started to highlight neck issues about 5 or 6 years ago.
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