I have been dealing with my PCS for 15 months. Don't get me wrong, I am way better than I was last summer, but there are still lingering things. I have daily headaches, a constant ringing in my ears, noise and light sensitivity, personality changes and probably a few other things.

I am definitely not as outgoing as I was before and I tend to be irritated easily. I tend to not have much patience with people and have to remind myself of that fact.

Because my was the fault of the hospital ER, I feel that I was not given the information that I needed concerning the fall. My neurologist, who worked for the hospital, didn't give me any information regarding rest, diet, etc. She did not want to admit that I even had a concussion. When you go into the emergency looking fine and leave with a concussion, broken nose and two black eyes, I think someone should have helped just a little bit more.

I went back to work two days after the accident because I didn't have any sick time. I have continued to work full-time since then. I truly believe that I wouldn't still have some of these problems if I just would have taken some time off. Unfortunately, this is not an option.

I was never recommended to see anyone else besides the neuro and even though every time I went to see her a complained about a headache, she wouldn't listen to me. I changed neuros after 11 months of nothing and found a good one. He has been helping me come up with a medication that will help my headaches. Since it is trial and error, I still haven't found the right one. But I have a lot of confidence in him and feel like he is looking out for my best interest. I wish I would have found him much earlier.

I have found out, maybe the long way, that you have to advocate for yourself. I had to see an ENT for my nose, a dentist for my mouth since I fell on my face, an optometrist for eye changes, a physical therapist and a woman who deals with chronic pain symptoms. These were not referred to me, I did them on my own.

Like I said, it is better than it has been, but still have problems doing the things I love to do (running, biking, playing basketball with the kids, etc.) It seems to be the activity that brings it on, but I am not going to miss out on anymore of my life and the fun I have with the kids.

Hang in there!

sheds,

I forget if this has been discussed before. Have you contacted an attorney?

You just may be in for a lifetime of struggles.

Mark,

I am in touch with an attorney. It is almost humerous at times. They were trying to blame my husband and me because there was no one else in the room with us. Then they decided to try to blame my husband for not catching me when I fell. They will say anything to get out of paying. Right now, we are headed for arbitration and if that doesn't go well, we will file in circuit court and have a jury decide. Let me be honest...I would rather be how I was before the accident than the way I am now. There is no dollar amount that you can put on 15 months of pain.

Hey Sheds,

I know what you mean about having to do it all for yourself - my experience exactly, and I bet it is very common.

You would think that a doctor and an attorney would just sort it all out for you. But no. It seems that doctors don't recognize postconcussion syndrome very well, and don't have much sensible advice. You would think that they would at least tell you to stop drinking.

Is there any organization that you can call who will give you good advice?
I'm from the UK and we have Headway, which gives advice on the phone and it is much more sympathetic than you can guarantee from a doctor.

CS

I was diagnosed with PCS five months ago and have dealt with the ringing in the ears and migraines, as well as minor balance issues (I just kind of topple over) when I have a migraine.

I got my concussion when I was playing in a soccer game and someone shot the ball and hit me in my left temple. Apparently I crumbled to the ground for a short while before I got back up insisting I could finish the game. It was my first concussion ever and I never expected, or even knew about, PCS.

Now I'm finishing up my senior year (that's right! I'm still in high school!) and struggling to keep my grades up. It's hard to deal with an illness in school that nobody knows about, or thinks you're making up.

I'm so glad I found all these stories and little pieces of advice so I can finally feel like I'm not the only person in the world dealing with this stuff.

I agree with you Concussed Scientist. I was given virtually no meaningful advice much less any sort of recognition or hint at diagnosis as to what I was going through. I only discovered what I had by researching a lot myself, and this was only months after the incident. It frustrates me to think about it. I would have appreciated some medical advice. I found that I continued partying and drinking which was quite dangerous to myself i'm sure.