This is a great topic, and an easy question for me.

I wish 35 years ago someone had told me that a brain injury could change my personality. I could have started addressing extreme anger issues. Now it is too late and I have legal problems.

1. Don't waste time with a regular doctor who doesn't understand concussions or pcs

2. Never push through the pain. When you are feeling the heaches. Fatigue etc. The best thing I should have done is not try to push through school and work and take time off to just recoop. In the end the overstimulation sets your brain recovery back farther.

1) Not listen to my doctor and think I could go back to work earlier
2) Lifting weights at the gym after a few days from being released at the hospital!

I was injured at work at the end of November, 2011. I have found this thread very useful – especially the points on getting the right kind of doctors to begin with. I would have never thought of that on my own.

I want to add two points.

1. A friend had me start a daily journal right from the beginning. I write down what symptoms are notable for the day, especially with glitches in memory and with speech. I write down the highlights of each doctor’s visit including what medication I am taking at what dosage and what they say is next.

I have a treating physician and a neurologist and they both get copies at each visit. They both genuinely appreciate it because hey have something they can point to concretely to show what progress there is and what progress there is to be made. In the absence of a positive CT or MRI, a journal helps them explain why I still need to be under their care and why am not yet cleared to drive or go to work. They have in writing and in front of them during the visit what the other doctor is doing. I thank my friend for getting me started this way.


2. I take a friend with me to every doctor’s visit. (Not necessarily the same friend each time)

I may think I am fine when I am with the doctor. By the time I have gotten to the car, I have forgotten the important facts from the visit. I find that my judgment of what is important isn’t necessarily the same as the judgment of a friend without a brain injury. My friend also can help express to the doctor some of the challenges I face, especially when I am not communicating clearly in the visit.

* I really wish that I would have discovered something like this forum from the beginning, but then again, I didn't have the short term memory for it.

* That my parents had somehow known to take away my phone and computer to an extent, or at least monitor what I was doing better. I had short-term memory loss for months. I had a phone scam occur, and did a lot that I do not remember at all.

* That I had had the right doctor from the beginning, but that's not always the easiest thing to figure out.

* To know that it could possibly take years to recover and that it could be permanent. The many false promises of "only 3 more months" killed me, and I feel like I wasted time. I could have been coping instead of being in waiting all the time for it to just disappear.

* Talk to your loved ones or people you are close with about how you're really feeling. Get it out. If not verbally, than email them or something.

I felt like I was talking about it all these years, but recently my father said something on the phone that hit a nerve with me. I emailed him a very long email about everything I was feeling and going through and it has helped. He thanked me for really explaining, and it took me over 3 years to do that.

I wish that I had worn a marshmallow helmet every day and had realized that when I was starting to feel better was not the time to start doing stuff again.

I wish that I had known that it was OK for me to feel awful.

If you wear glasses , ask your optometrist about Velvatint (please correct me if I am wrong in the exact name, memory issues as we know!) Basically they are a lightly rosy tinted lens which actually reduces the glare of flourescent lights! Granted, this does nothing for the sun, nor for those who do not need spectacles, but they have helped me immensely andi no longer have to wear my sunglasses indoors! (and the tint itself is not obvious at all to those looking at you)

It is very scary- your not alone. Your not a hypochondriac.

Hey everyone! I need help. I know that I haven't dealt with PCS as long as most people on here, which is only 4 months and a few weeks. But it is hard to think that this is ever going to get better. I am only 16 years old and I struggle everyday. I feel like I am not a normal kid and that my whole life revolves around my head and what I can and cannot handle. I feel like people don't understand because there is never any light shown on PCS. Most people think that you get a concussion and your better in a few weeks at the most. I know this, because I was one of those people. That is what is so hard for me. Knowing that I am in this by myself. The struggle is only felt by me. If anyone has any hope or advice, now would be a great time for me to hear it because I am not so sure how much more pain I can take.

I am also in the early stages of PCS as I am just passing my third month. I understand your frustration as I have had numerous concussions that I have been able to just shake off. Now however its different. I wake up nauseous every day, get dizzy, light headed, lose track of time, find it hard to concentrate, find my reaction has slowed, and my emotions have severly changed. I get extremely anxious, depressed, and anti social. Not being able to participate in sports has also taken its toll on me. I have found this site to help me as every time I have an anxiety attack about the future, I read these stories of people who have been experiencing PCS for years and are okay. Even if I never fully return to normal, I am coming to terms with the fact that I can make this make me a better person or a worse one. That is up to you. When I get on here and vent, it helps with the emotional toll, and for the physical I take everything day by day. I am trying to rest my best, recconect with my faith, and understand this is out of my hands, but I can help the healing process. Keeping a journal of my symptoms each day has really helped me as progress isnt daily but rather monthly. When you are feeling down, know that you are not alone! hope this helps, stay strong

Kacee