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-   Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)
-   -   Things you wish you'd known when you first got post-concussion syndrome. (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/140214-wish-youd-post-concussion-syndrome.html)

Tyson_92 03-03-2015 05:29 AM

So happy I found this page. The more and more I read on this forum/thread the more I realize how little my doctor actually knows.

Took in a lot of information while reading these comments, going to have to write some of this down :P

Hoping a new regiment will help my recovery process. Thank you

terivig 07-24-2015 02:22 PM

Quote:

Originally Posted by MarileeG (Post 723604)
Hi CS,

what a terrific idea you have here. I'm happy to add some thoughts.

1. get to a neurologist if you haven't already. you might need PT or other treatments, don't be afraid to ask questions and if you are able bring someone with you who can push back on the doctor if you feel like you're not getting answers.

2. if you suffer from over stimulation wear sunglasses and ear plugs. This tip was shared with me here and made a world of difference.

Also, I've been struggling a lot with noise sensitivity and over stim even at home. Noises like lawnmowers, weed whackers (have no idea why a lawn in seattle needs to be mowed in Dec), big trucks, esp. garbage trucks (Ugh - the worst) all cause me a lot of trouble.

Yesterday my husband came home with a set of noise canceling headphones for me. Wow is all i can say. I think there are some really pricey ones made by bose but i didn't get those. I'm not sure how much he spent, all i can say is so far its worth it. I feel protected the same way i do with sunglasses on and it takes the ear plugs to a whole new level. I wore them all day today.

hope these are helpful to anyone out there.

Hi yes I am understanding now trucks cars firetrucks emts bother me

Lara 07-24-2015 04:56 PM

Hello Teri,
Welcome!

Please feel free to start a new thread via the link below if you want, so that you can introduce yourself and ask any questions you may have. Your post here may be missed because it's on one of the "Sticky" information threads.

http://neurotalk.psychcentral.com/ne...newthread&f=92

chasann 07-26-2015 03:14 AM

As soon as you feel, or become aware of fatigue symptoms, STOP and take time out, rest that brain. Mindlessness techniques should part of your tool kit, and use it regularly. Never ever listen to anyone who says you have to push through it, by pushing you need more down time which can be days if you really overdo it.

chasann 07-26-2015 03:38 AM

Quote:

Originally Posted by todayistomorrow (Post 974406)
For people with post concussion symptoms over a month, the first Dr. appointment you should make is with a neuroopthamologist that can prescribe tinted/prism glasses. I would've saved myself a year of suffering if someone had told me this right away. Instead, I bounced around from neurologist to physical therapist to chiropractor and spent thousands of $ when the issue all along was my convergence insufficiency.

My eyesight was fine so I never thought about getting it checked but the way my eye muscles work and team together was messed up big time.

There is a reason that when Hillary Clinton got a concussion she was seen wearing these prism glasses. People well off get the health care they need right away but it's up to the rest of us to figure it out on our own.

Ditto - just went to a behavioural optometrist who as I write is organising glasses for me to counteract a number of issues. 40 to 60% of injured folk will have visual impairments which can cause nausea, dizziness, depth of perception (reason why I walk in front of oncoming vehicles) headaches, light intolerance, how the list goes on. It was a psychologist who suggested I go because I have issues with understanding plots in books, films etc and the examination has given answers to so many of my other problems.

Blairzo 08-06-2015 07:09 AM

Mtbi
 
Just because the lable says mild TBI does not mean the effects to you will be minor.
My functional level was basically nil. I slept. I could not read, follow a tv program make a cup of tea, look after myself or my children.
I hit deisel on a country road, was doing around 30 mph, my car span and hit a verge causing it to roll across the other side, it went into a hedgerow up an embankment and rolled back down.
I only remember the wheel being whipped from my hand as it span out.
I wish someone had not let me sign myself out of the hospital. I wish that I was aware enough to follow pt/OT/ and doctors advice. I thought there was nothing wrong with me.
I wish someone had told me that it can take years to recover and you will not get everything back.
I wish someone. Could have told me about the stress of legal action. I just accepted a payout at 8 yrs post accident because I had just had enough of it.
I saw a neuro phsyc at 2 yrs, to find I have severe executive function difficulties and congnitive difficulties. I have poor working memory and other memory issues, flexible thinking is affected.
Neuro ophthalmologist sorted out double vision issues with botulinum injections and prisms in my specs, also I have reactolite lenses that cut out lots of light as I am photosensitive.
I got fed up of being told you'll be better, a week, 4 weeks,6months then told you will bet better but not completely. I spent many futile months trying to prove I was intelligent and not broken. Things only started to improve once I had accepted my new limitations and adjusted accordingly.
Brain injury is scary, confusing, enlightening, funny and exhausting.
I could sleep anytime anyplace anywhere! Listen to your body!
Keep a diary. Then when Drs ask how have things been? You don't look a complete fool by having not a clue or even any idea if you have seen them before.
Thing can and do improve. I'm now working part time. It feels like full time and I really could not do any more.
I have also been told at some point that I had somatoform disorder or functional neurological disorder. This was during the medico legal process. I believed all I needed was some phsyc appointments to get well. It didn't work, I got distressed because they lied, I felt like a failure and fraud. It set my recovery back no end.
Work with what you have got, don't be afraid to try something new. Believe in yourself!

Mark in Idaho 08-06-2015 11:43 PM

"Just because the label says mild TBI does not mean the effects to you will be minor.
My functional level was basically nil. I slept. I could not read, follow a TV program, make a cup of tea, look after myself or my children.

I hit diesel on a country road, was doing around 30 mph, my car span and hit a verge causing it to roll across the other side, it went into a hedgerow up an embankment and rolled back down.
I only remember the wheel being whipped from my hand as it span out.

I wish someone had not let me sign myself out of the hospital. I wish that I was aware enough to follow pt/OT/ and doctors advice. I thought there was nothing wrong with me.
I wish someone had told me that it can take years to recover and you will not get everything back.

I wish someone could have told me about the stress of legal action. I just accepted a payout at 8 yrs post accident because I had just had enough of it.

I saw a neuro psych at 2 yrs, to find I have severe executive function difficulties and cognitive difficulties. I have poor working memory and other memory issues, flexible thinking is affected.
Neuro ophthalmologist sorted out double vision issues with botulinum injections and prisms in my specs, also I have reactolite lenses that cut out lots of light as I am photosensitive.

I got fed up of being told you'll be better, a week, 4 weeks, 6months then told you will be better but not completely. I spent many futile months trying to prove I was intelligent and not broken. Things only started to improve once I had accepted my new limitations and adjusted accordingly.

Brain injury is scary, confusing, enlightening, funny and exhausting.
I could sleep anytime anyplace anywhere! Listen to your body!
Keep a diary. Then when Drs ask how have things been? You don't look a complete fool by having not a clue or even any idea if you have seen them before.

Thing can and do improve. I'm now working part time. It feels like full time and I really could not do any more.

I have also been told at some point that I had somatoform disorder or functional neurological disorder. This was during the medico legal process. I believed all I needed was some psych appointments to get well. It didn't work, I got distressed because they lied, I felt like a failure and fraud. It set my recovery back no end.

Work with what you have got, don't be afraid to try something new. Believe in yourself! "

Wow, you got a lot of bad care and counsel. Welcome to the club.

shayan 08-10-2015 03:12 PM

I wish had avoided the negative thoughts that made me depressed. I thought I was depressed because a bad thing that could destroy my dream to become a doctor had happened to me. But my depression was the result of structural damage to the brain.

The other thing is slight acceleration and deceleration of the head in every day life. A normal brain can tolerate them if they are smaller than 10G . But after a concussion, I think, the ability of the brain to tolerate them is lessened. when I was driving I felt something because of the bumps on the road. It is not like that the 1G has no effect on the brain( in my opinion)
but the ability of the normal brain to recover from that is so good that it does not leave any effect. And the greater the acceleration is, It is harder for the brain to recover. fast roller coasters have accelerations up to 2.7G so do not try them after a concussion.

Some people thing that the only thing that cause the damage in a concussion is the impact of brain to the scull but that is not true.The acceleration can cause the veins to tear and leave bruises because the blood does not want to change It's speed but the vein is accelerating.
the same thing happens with axons which are even weaker than the veins, although they might be at the center of the brain and do not hit the scull they will tear apart( not all of them of course). because of this, water diffusion increases and scientist use the water diffusion as a marker of axonal damage.
A really good way to SEE this is to drop a watermelon on the ground you will see that its color is more red which is because of the fact that water comes out of it's cells.
with all this you might be disappointed but don't be. because the ability of the brain to recover is great. just as the brain can learn a new language it can also learn how to remember things better or hear voices without hearing the ringing.
by the way the solution for avoiding road bumps is to lean a little forward. this was given by someone else.

Chemar 08-10-2015 04:18 PM

Hello shayan
As there seems a lot to discuss in your post, I have copied it to its own thread below http://neurotalk.psychcentral.com/sh...d.php?t=224384

Kanna 09-17-2015 04:18 AM

You are not alone in Seattle!
 
The issues I have are with florescent lights and noises from crowds (too many distractions visually and audibly). My biggest issues with sound is hearing clicking, high pitched noises, harsh noises like dogs barking, eating noises, background disturbances, and multiple (more than 3) conversations going on at once. I come from a large family and have a boyfriend with Cerebral Palsy, so sometimes I have to just deal. The hardest part for me is hearing myself chew. It grosses me out and is hard for me to block out. So, I prefer to eat somewhere that has noise of some sort.

The only problem I have with lawnmowers are my allergies. LOL...

Thank you so much for the idea of sunglasses. I may try that in class and see if it helps.


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