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


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Old 05-25-2012, 09:58 AM #1
wakey wakey is offline
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Default Out of idea, hope

After 9 months, I have no reason to suspect I will improve. My brain is still messed up. I still cannot work for any sustained period of time. I'm napping every day. I can't exercise. I can't read/write/use the computer for more than 1/2-1 hour. I can't watch TV. I can't watch movies. I can't talk with friends for more than an hour before I feel terrible. I can't enjoy any activities in life. The only thing I have noticed improve is my headache, which, although still constant, is less severe than initially.

I am all out of ideas and energy.
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Old 05-25-2012, 10:29 AM #2
"Starr" "Starr" is offline
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I don't have any advice, just wanted you to know you are not alone in your frustration. Sometimes its just so overwhelmingly disheartening.

I've seen lots of people on here say they've seen dramatic improvements much later in their recovery than you are. That's part of what keeps me going.

Hang in there. I'm thinking good thoughts for you.
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Old 05-25-2012, 10:56 AM #3
Mark in Idaho Mark in Idaho is offline
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wakey,

What steps have you taken consistently to help with your recovery?

What steps have you been unable to take?
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Old 05-25-2012, 11:50 AM #4
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wakey,

Thinking of you. I am so sorry that you are feeling this way. does listening to quiet music bother you? or maybe listen to TV (rather than watch) quietly if you can...I know that it is not the same.

Sometimes, when I feel really bad, my daughter reads to me, which helps. I don't know if you have anyone that can do that for you. (its so cute when she reads her little clifford stories to me)
I hope this helps?

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March 2007, Oct. 2007, and Jan 2012 concussions sustained in martial arts/police academy training; suffering from PCS symptoms of fatigue/exertion problems,tinnitus,dizziness, overstimulation issues, photophobia. Also suffer from PTSD.

So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed every day.
2 Corinthians 4:16
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Old 05-25-2012, 12:00 PM #5
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Quote:
Originally Posted by Mark in Idaho View Post
wakey,

What steps have you taken consistently to help with your recovery?

What steps have you been unable to take?
I don't even know what steps to take. I have started a very light exercise program--in addition to the walking I've been doing. Sleeping, and avoiding stimulation. What else is there?
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Old 05-25-2012, 12:03 PM #6
ConcussedJ ConcussedJ is offline
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Please don't give up hope Wakey.

I have had PCS for more than 2 years. For a long time (about 18 months) my recovery plateaued at about the same level as you are at now except I also had bad sound and light sensitivity. All the doctors said they could do nothing for me, that only time would tell if I would be stuck this way forever. It was a terrible existence.

But with another 8 months and a rehabilitation program specifically for mTBI (that I had to look for, and found on my own!) I am now able to live an almost-normal life. I can exercise moderately. I use the computer for as long as I like. I can listen to music if it's not too loud, watch TV or movies if there's not too much fast action. I bike and take public transit everywhere. I hang out with friends, and I volunteer regularly.

Am I 100%? No. But I am getting there, slowly. Will I ever be 100%? I don't know. But I guess what I am saying is, it will get better. Keep looking for the help you need. Don't give up hope.
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Old 05-25-2012, 12:24 PM #7
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Quote:
Originally Posted by ConcussedJ View Post
Please don't give up hope Wakey.

I have had PCS for more than 2 years. For a long time (about 18 months) my recovery plateaued at about the same level as you are at now except I also had bad sound and light sensitivity. All the doctors said they could do nothing for me, that only time would tell if I would be stuck this way forever. It was a terrible existence.

But with another 8 months and a rehabilitation program specifically for mTBI (that I had to look for, and found on my own!) I am now able to live an almost-normal life. I can exercise moderately. I use the computer for as long as I like. I can listen to music if it's not too loud, watch TV or movies if there's not too much fast action. I bike and take public transit everywhere. I hang out with friends, and I volunteer regularly.

Am I 100%? No. But I am getting there, slowly. Will I ever be 100%? I don't know. But I guess what I am saying is, it will get better. Keep looking for the help you need. Don't give up hope.
Great story. I also have light/sound sensitivity. I am glad you recovered so much, and sounds like you will continue to recover. Honestly, right now I just would like to have one day where I felt normal. Then one day where I could work normally. And so on. Waiting is tough.
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Old 05-25-2012, 01:10 PM #8
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Quote:
Originally Posted by ConcussedJ View Post
Please don't give up hope Wakey.

I have had PCS for more than 2 years. For a long time (about 18 months) my recovery plateaued at about the same level as you are at now except I also had bad sound and light sensitivity. All the doctors said they could do nothing for me, that only time would tell if I would be stuck this way forever. It was a terrible existence.

But with another 8 months and a rehabilitation program specifically for mTBI (that I had to look for, and found on my own!) I am now able to live an almost-normal life. I can exercise moderately. I use the computer for as long as I like. I can listen to music if it's not too loud, watch TV or movies if there's not too much fast action. I bike and take public transit everywhere. I hang out with friends, and I volunteer regularly.

Am I 100%? No. But I am getting there, slowly. Will I ever be 100%? I don't know. But I guess what I am saying is, it will get better. Keep looking for the help you need. Don't give up hope.
ConcussedJ, thanks for posting this. If you don't mind my asking, what techniques/approaches did you find helpful in recovering to the point you're at now?
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Old 05-25-2012, 02:57 PM #9
ClumsyCharlie ClumsyCharlie is offline
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I completely understand how you feel, I've been battling for 7 and half months now, I'm so frustrated that this has happened to me, as I'm sure everyone here is.
I'm just like you, needing to nap every day, constant headache, missing the things I used to, and still do, love... I don't listen to music now.. I sometimes make myself because I miss it so badly.. then pay the price for my actions :/

I'm upset that I know I won't be well tomorrow and that it's my anniversary with my boyfriend - he's been amazingly supportive, I'd love to give him a day off from the worry and clear upset my head injury causes him. I don't think I'll be so lucky to last more than an hour as my 'normal' self.

I don't think anyone has any advice as such - we're all so different. But please, try not to give up hope. I look forward to the day where I can watch a film with my boyfriend just like we used to.. I look forward to the day I can spend time with him where he doesn't need to carry me to bed and watch me sleep away our precious hours together.

I guess my advice is find motivation... an end goal.. that you want to be able to do.. without having severe symptoms.. Mine is be able to last a whole evening for the person I love and maybe watch a film as well.. Yours could be being able to watch a favourite programme? Or a favourite film... If you're familiar with it.. it might provide some escape from the pain for a while...
Motivation always works for me.. I hope that maybe it could be beneficial to you.. In the meantime, rest like hell and always remember that no matter what it will be ok in the end. And if it's not ok, it's certainly not the end
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Old 05-25-2012, 05:02 PM #10
Mark in Idaho Mark in Idaho is offline
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wakey,

Maybe this will help me and others understand where you are right now.

You have probably posted some of this information before but I do not have a good memory, duh...I wish I did but don't get frustrated by it.

What is a normal day like for you? What is you normal schedule?

What do you consume?

What do you do during the day?

What do you think about during the day?

How do you relate to your symptoms?
Do you get frustrated?
Angry?
Depressed?

What is your living situation like?
People, visual and auditory environment?

Maybe there is some piece of your day or environment that is counter to recovery.

Do you have any 'work-arounds' or other tricks to help you deal with specific symptoms?

Have you connected with a local brain injury support group?

Respond with the lower right reply button and insert you comments after each question.
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