Post Concussion Syndrome for 11 months......
 

I am 20 years old, and will turn 21 in April. I have had multiple concussions as I participated in Football and Wrestling in high school, and then went on to play a year of college football. I've been playing rugby, until last spring during a game I was kneed to the head, received 20 stitches, and another concussion......I then returned to play 3 weeks later, with no real problems. The next week at a rugby tourny the first game I felt concussion symptoms again and then took my self out of the game. That was May of '09 and I have had this hell since. Symptoms are/were nausea, migraines, hazy, no motivation, depression, dizzy, zoned out. I was on Amitriptyline for 6 months, which I've recently weened my self off. I have not been able to lift weights or train since, which was the biggest part of my life. At first I pushed through it like athletes are taught, as it was engrained in me to do so personally. Drinking is up and down as some times Ill feel fine and laugh and be loud as I usually am, and then other times I'll feel stuck or in a haze, basically feel like garbage. I've always been the loud, funny, and people person my whole life, and now it all seems gone.....Depression is what becomes of this, which no one ever wants to admit, but when your whole life has been taken away for damn near a year, it what becomes of it.......if anyone has any advice I'd appreciate it greatly or strories of someone who has become them selves again after a long struggle with Post Concussion Syndrome.....I'd appreciate it more than anyone could imagine.......Thank you very much

Hello bud. First off, I am terribly sorry to hear about what you are going through. My only possible comfort I can give you is my story. Although my concussion does not seem as intense as yours, I suffered a concussion five months ago that have given me a multitude of severe symtoms. Some of them were/are extremely blurry vision (tunnel like, very sensitive to light), lethargy, head aches, anxiety, depression (month and a half), decreased sex drive (virtually none) and many, many more. I, like yourself, would become very hit and miss when I was drinking. Sometimes I could forget a little, other times I took it to heart and became even more depressed. Prior to my concussion I was the happiest, most outgoing and funny guy you could ever meet. My injury caused me to become very dependent on friends/family/girl I was involved with. I became very socially withdrawn and felt like trash, just as you describe. These symptoms began to wein three months ago. The improvements were EXTREMELY slow and unnoticable day to day. The trick i've found is to track your improvement week to week. Very slowly things will come back to you. My depression/concussion was the darkest time of my life by far.

Five months in, I have regained a lot of what I had lost emotionally. Although I am still on sleeping pills and weining myself off, I am a much more functional and happy person. Time does not inch by, nor do I stare at the clock anymore. Life is much brighter. Although i'm no where near 100 percent, I know that I AM getting better and that thought makes everything bearable. My advice to you is to rest as much as you can. I made the mistake of taking on 55 hour work weeks through the heat of my depression because I wanted normalcy. You will feel MUCH better when you rest and are idle (even though it's emotionally difficult). The best thing I can tell you is that there IS hope, you WILL get better, I know because I went through something similar. I lost hope, never thought I would get better. I am, and just like you, I more than anything else would kill for the day I wake up "normal" again. You will buddy, keep the faith. Concussions are by defiintion temporary. Keep yourself out of harms way, rest up, and try and stay as hopeful and positive as possible. The happiness you lost will return to you. All the best :)

Welcome to NeuroTalk and the PCS forum.

Where do I begin???

Muddyriver,

You are likely suffering from Multiple Impact Syndrome. With each additional concussion, the damage you do to your brain gets much worse. Do some research about the NFL and concussions. They are struggling to find a safe way to keep players playing without destroying the rest of their lives.

The impact of a concussion may be temporary, but the symptoms are not necessarily temporary. Many symptoms do not even manifest the first few days. Some symptoms will not show up until weeks later. The brain is very slow to heal and also slow to respond to the injuries. The alcohol is contra-indicated. Light alcohol is OK but do not get drunk or even buzzed.

You have likely developed a brain that is much more sensitive to impacts than it was before. Rotational impacts are often the worse. There is far more shearing or tearing action in a rotational impact than in a direct impact. A boxer can be easily knocked out with a round-house to the jaw.

You need to understand that the brain does not behave like muscles do. Muscles can be challenged while they are healing without serious damage. The brain needs rest to heal. Very light exercise to keep blood flowing throughout the body is helpful but it can easily be overdone.

You need to learn to read your own brain. There are signs that it is getting too much strain. If you get a starry eyes feeling, you have gone to far. Note how much effort you were putting out. Next time, stop short of that level of effort. If you pay attention to all of the symptoms you feel when you relapse, watch for them when you exercise.

Exercise that causes an adrenaline rush is probably going to cause problems. Treat your brain like an injured body part. If you have muscle cramps, you adjust your nutrition. Same goes for the brain. It needs B vitamins, and a whole host of other nutrients to heal.

You may have long term to permanent personality changes. This is common with PCS. It will help if you identify where you are now and try to learn to accept the new you. Many PCS subjects develop problems with emotional/anger outbursts. Friends and family need to understand this. They can then help you learn to adapt to the outburst triggers.

It is great to hope for a full recovery but is helps to accept the here and now and try to move forward. Let us know how you are doing. You two appear to be new to the concussion experience. There are many here with long histories of concussions.

btw, You guys can help us out by limiting paragraphs to six lines or so. Many of us have visual struggles that make it hard to find the start of the next line when the paragraph gets too long.

My man......I appreciate you taking the time to write that....it means a great deal. I agree with everything you have written haha......It's just wild, and how most of the doctors just try and not shoot straight about this. Alls I've heard is new meds and no justifying answers(which I know PCS is not well researched or known for knowing answers to. I've been going to U of Iowa Neurology department. I recently found the U of Buffalo Sports and Medicine Concussion Clinic, which I am tossing the idea of going out there for there studies and therapy that have gotten athletes suffering from the same hell as we have, and got their lives back........I'm just hitting some real lows now, and no one really understands until they have gone through it or are going through it. I appreciate the comment and glad to hear your getting better bro. Hope is up and down, and like you said, Never been the guy to lose hope, or not be the life of the party.....thanks again!

You need to realize that with each concussion it caused more damage.

I personally have had more than a couple of concussions over the
years. Its easy to see now how long it takes to recover.

Donna

I understand time and patience are key to pushing through PCS, and I've never been the guy who wanted pity, showed weakness, nor wanted anyone to feel sorry for me, but it's very difficult while in college to watch all your buddies participate in the sports and training you have done your whole life, and drinking booze, as you know you can not anymore......Environment plays a huge role. What do any of you think of sleeping pills?

And I've been off my meds for about 2 weeks now, do you think I should stay off meds??? The Amitriptyline I was on was 100 mg tablets, which made me in a haze when I'd wake up and through out the day, then they switched me to Gabapentin, which I took for about a month, but I was dizzy and had nausea all day. So I talked to my neurologist and he said to stop taking them and they had another medicine in mind, but I do not want to take anymore medication, I feel better as in less dizzyness and nausea off of the meds.

What do you feel would be my best bet for the treatments all of you had posted?

Also, does drinking alcohol prolong symptoms and the PCS saga? One neurologist from the U of Iowa said he doesn't feel as if it should make things prolong PCS any longer.......but it just doesn't make sense to me.

For a while, Chewing Tobacco seemed to have no effect on my symptoms, but lately it seems as if it does have effect. I've read Nicotine slows blood flow to the brain.......which could be the reason for this. Anyone's thoughts?

I want to let you guys know that it's really good to talk to good people who genuinely care about others symptoms/problems, and know what each other are going through. I'm glad I'm reaching out and expressing questions and feelings on this **** **** PCS!

Thanks again for you opinions and comments! I really appreciate them! SQUAD UP MUDDY!!

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.

Having to do it all for yourself
 

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