I just posted on this thread before I read the rest of the posts (and figured out how to qoute someone to!), including yours muddyriver- our situations seem to be VERY similar. Both athletes in college, both missing out socially watching our friends live the lives that we were so accustomed to. I was also on amitriptyline for about 6 weeks for my neck pain but it started to lose its affect and it made me dizzy/faint.

I am starting the subsymptom threshold recovery program today with my Athletic trainer. I have been doing rehab for my neck and upperback with her and today I am going to get on the bike for a few minutes. I will be traveling with my team down to baltimore for our game this weekend but will report back to everyone next week how the program is going. Ultimately I would have liked to go to Buffalo and been admitted into their program, but the doctors I saw at home assured me that the medical staff up here could administer the program themselves. If things don't work out I want to go down to the clinic in Buffalo and admit myself when schools over (beginning of may).

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.

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 can definitely appreciate what you're going through. I'm a senior PhD student who suffered my MTBI back in July 2008. I was hit by a line drive while pitching in a recreational softball game. I had major issues with dizziness, nausea, light and noise sensitivity, fogginess, headaches, etc... For close to a year I was basically bed/couch ridden, feeling listless and completely out of things.

Having played a lot of competitive sports as a kid my first reaction was the same as yours in terms of trying to push through any health issues, thinking that this would accelerate healing. I tried to continue working and going to school and I eventually learned that in the case of a concussion you need to go 100% in the opposite direction. The stress was taking its toll on me and making all the PCS related issues worse. Moreover, my psychological health plummeted which left me in the same difficult cycle of having depression and dealing with a concussion that you describe.

It's been almost two years since my injury and I still have not completely recovered. However, from my experience I feel I can share three pieces of advice that I hope will help you.

1) Your priority needs to be rest. Focus your attention everyday around the goal of resting as it is the key to your recovery. You should try to remove as many of the demands on you and responsibilities you have as possible. Only in this way can you minimize stress which will hinder your recovery more than anything else I can think of (less a second head injury!). It's hard to go from being an active person (especially athlete) who was fully engaged in life to essentially doing nothing. However, you need to slowly build things up from zero rather than trying to find the minimum amount you can compromise and still "push through". I ended up taking a 5 month medical leave of absence from school. This helped immeasurably!!!

2) Seek professional help for your psychological health. Yes, there are stigmas about depression which can make this difficult. Ultimately though, a psychiatrist/psychologist/social worker can help you learn to cope with the challenges you are facing. Improving your psychological help will go a long way to keeping you motivated as you try to improve your physical/cognitive health. Be a consumer though. You may have to try a few different doctors/therapists before you find one that you are comfortable with. Navigating the health care system can be a long and frustrating process. Keep in mind that you're doing your best to try and get better.

3) Don't be afraid to ask for help. A concussion is a tough thing to deal with because of the "invisible" nature of the injury and the lack of education people often have about the injury. What I have found is that people are more understanding and supportive than you often think. This may also be related to "distorted thoughts" you might be having as a result of depression. Let your family and friends help you, let them support you, and let them know what you're going through. My family and friends have really helped me to work on #1 and #2. Without them I don't think I would have made as much of a recovery as I have so far.

I can empathize with what you're going through because I've been living the same thing for almost two years. Please give my suggestions a try, I think they will help you. It's tough to take action though, so a little bit at a time. Don't get discouraged. Remember, you're recovering from a brain injury. It's expected that things are more challenging and frustrating to do now than before your injury. Good luck!

Great post, tangje. Welcome to NT!

Thanks for the welcome. I've just found this forum and it has been comforting to read about how others have coped with PCS.

miitchan and tangje,

Welcome to NT. How are you doing?

Tell us a little about your experiences. There is a wealth of knowledge and experience on this forum. Many of us have been dealing with PCS for years or even decades as is my case.

miitchan, It sounds like you suffered a rotational concussion injury. They can be difficult. The searing forces and other impacts with the bony protuberances inside the skull can far more damaging than a simple straight on impact.

As you deal with the ignorant at school and such, it will help if you can describe a symptom in a way that they can understand.

For example, I struggle with sensory overload. My brain tries to make sense of EVERY sound and visual image it takes in. This overwhelms it. There is a filtering function in the brain that is supposed to block the extraneous sensory information so that you can focus on the important information. This filter function is commonly disrupted in PCS.

I also have very little visual memory. I can look at some thing and turn my head away and have no idea what i just saw. The critical situation for me is driving. I can stop at a stop sign, look to my left and see the oncoming cars. Then I look to my right and see the oncoming cars. But, I have already forgotten what I just saw to my left. This explanation is usually understood by others.

I have accommodations and work-arounds for these problems. I close my eyes if I can when I am visually overwhelmed. It helps me listen better. I use foam ear plugs when there is too many sounds.

If I am driving, which is rare, I verbalize what I saw to the left. My auditory/verbal memory is bit better than my purely visual memory. I will say, "Clear to the left" as I am looking to the right. This holds on to the memory of the traffic to the left so I can combine it with the vision of what I see to the right.

There are lots of work-arounds and accommodations that we can use to deal with our symptoms. I believe that they are more beneficial than the psychological help. The anxiety and depression is enhanced by the feeling of helplessness as we try to deal with our symptoms.

Don't get me wrong. There is a component of depression that is physiologically caused by the concussion. Good brain nutrition and a low stress environment is good medicine for this.

The rare psychologist/psychiatrist/social worker/occupational therapist who has skills at helping you with these work-arounds and accommodations are a God send. If you have found one, cherish your opportunity to get good help.

BTW, I hope you have decided to stop playing soccer. I had to stop playing after my sophomore season (1971). It is a tough decision but worth it as you look forward to a long and concussion free life. Multiple Concussion Syndrome is a real bear to deal with. You never know when the next life changing concussion is going to happen.

My best to you two.

I am a college athlete in my senior year of college and sustained a concussion back in october of 2009. It was my second concussion in the same year (first one was january of 2009). In late october I returned to playing, lying about my symptoms (idiotic of me I know) and ended up having major whip lash from running into a metal pole when I was running to save a ball from going out of bounds. It gets worse- I stood up into a metal pipe at my teams holiday party in december.

I have been struggling with severe headaches and fogginess since day one of my second concussion, and developed neck pain in january 2010 which in turn made my head feel like it was going to explode. That headache is different from my concussive headache which is more a pounding in my forehead, which has caused me to wear earplugs often and also keeps me from being able to even talk at times. No one has been able to address this foggy feeling I'm having--it's not that I cannot concentrate, i've never had issues doing that, but its this strange feeling, kind of like when you first wake up in the morning and things aren't entirely clear.

The doctors here at my school have repeatedly told me that cognitive rest (no TV, no computer, no NOTHING, basically being a vegetable), is the only way I am going to get better. I've tried their way multiple times, with little to no improvement. And they have repeatedly come back at me claiming that the reason I'm feeling this way still is because I haven't done what I've been told--which has been absolutely infuriating. Laying in a dark room with nothing but my thoughts only makes me cry. It has been pretty depressing to say the least when I am missing my entire senior year of college- I don't go out, I've grown apart from all my friends, I don't even attend practices because standing on the sidelines is way to taxing and as I"m sure all of you can relate I often think I will never get better.

I've had to take incompletes this semester in some of my classes and was planning to come back next year for a fifth year to play (I'm redshirting this year). But as the weeks and months go by I am becoming more and more doubtful that I will get to have my senior year.

My mom has been my one and only advocate in this entire ordeal. My parents brought me home for a week so I could see some doctors at home, to get second opinions. I received some EXCITING news and thought this was my chance to get better and get to play for my senior year. It's something called the subsymptom threshhold recovery program-- It is a study done and performed out of Buffalo and one was done out of Montreal-
It won't let me submit the link but Just google "Subsymptom Threshold Recovery Program" and It's an article by J. Leddy. It's some breakthrough stuff and they have found success with each person that has participated.

Muddyriver- I posted in another thread under this forum and one of the moderators suggested I post here with my story and information. You mentioned that UB clinic and that is where I to am wanting to go. As you said training and weight lifting have been an integral part of your life, and mine to. It is utterly depressing to think that I will never get to finish out my college career. As of right now I am trying to get in touch with John Leddy, the director of the clinic but he is out of town till April 12th. I will post on the forum what response I get from him.

A month later after seeing those doctors who introduced me to this research, the doctors here at my school are now just starting to administer the program with me. (actually starting tomorrow) They have been very difficult and reluctant to treat my situation in any other way but their own.

I wanted to not only share my story but see if there is anyone else out there who is suffering from PCS with similar symptoms and if they got better. I hope that I will be able to report back to this forum that this subsymptom threshold recovery program helped cure me, for it is not only my wish to feel NORMAL again but to be able to have a senior year.

I have noticed a problem with the good advice to take loads of rest (thanks for that, Tangje). The problem that I have is how to make a living when I am taking rest. I don't have any savings to fall back on so I basically have to work to pay the rent and feed myself.

I expect some of the rest of you can relate to this. I wonder how much having to work for a living is slowing our recovery. I don't feel that I can just take a year off and relax and stay out of debt.

I am trying to think of jobs that aren't too taxing on the brain but then you get to do minimum wage jobs that could be even more of a hassle. Has anyone solved this problem?

CS