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 I became very socially withdrawn and felt like trash, just as you describe.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

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.

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!

:Good-Post:Great post, tangje. :welcome_sign: 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 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).

erica,

I've looking into the Buffalo U concussion program and am not encouraged by what I saw. It appears to be focused on getting an athlete back on the field as its priority. It does not appear to make any effort at helping the athlete prepare for life after a life changing concussion.

My biggest concern is the risk of a second or third concussion. The graduated exercise sounds worthwhile. It will increase blood flow to the brain. If this can be done at a sub-symptoms threshold, it could be worthwhile. But, the concussion subject must remember, no matter how good you feel and how well you can perform on the treadmill and other exercises, you have a history of concussion.

Depending on your personal circumstances, you are at risk of Second Impact Syndrome that can be deadly, and Multiple Impact Syndrome that is cumulatively disabling. The NFL has found that most of the problems from Multiple Impact Syndrome do not show up until the subject is in their forties.

So, is another year of playing at-risk sports worth the risk of dementia at forty or so. Living with any level of Mild Cognitive Impairment is a real bear. I suffer from it and had a mind freeze just now. I could not recall the word "Impairment," even though I have used it and typed it hundreds of times.

Luckily, I could type in mild cognitive into google and it gave me options to complete my phrase. Getting stuck with 'word finding' in any form, anomia, or any of the aphasias can create social barriers and other life struggles. It is not uncommon for PCS subjects to need circumlocution skills to overcome their aphasias.

They will make a unfound word into a sentence or phrase. Sometimes, they can hide the circumlocution. Other times, it is very evident, like, " I have an appointment to see the man who fixes teeth. I can't remember the word but you know what I mean." The unfound word is "dentist."

The language dementias can be quite humbling. The other memory dementias can also create serious life struggles. I have to go through a rolodex in my mind to remember the names of people I have know for years or even decades. I had to stop driving at 46 years old.

Download Dr Glen Johnson's TBI Survival Guide at www.tbiguide.com. He does a good job of discussing the various symptoms that may become permanent as a result of Multiple Concussion Syndrome.

btw. I suffered a concussion playing soccer as a high school sophomore than forever changed my opportunity to go on to dental school. It was only my third concussion, my other two were during fourth an fifth grade.

Please, consider making your goal finishing and graduating college and going on to life a full life, but not playing another year of soccer.

Mark,

As i've been reading around on different threads, you seem to be a real expert, and I want you to know I appreciate your advice/response. Believe me, I've had those close to me question if whether or not returning to play when and if I get better is the smart thing to do. I will say, I would be completely lost at this point in my life if I just decided to quit; for being an athlete (lacrosse, not soccer) has been my life passion. All of my friends here at school are on my team, and it's all I've ever known.

I've been to two neurologists, one of which assured me that this sub symptom program has worked, for he has administered it himself. You are right- the study is mainly focused on getting athletes better, but at this point I am willing to do ANYTHING that might give me a chance to have my senior year. If and when I do get to return to play, I will be wearing something protective on my head.

I've also been to see Dr. Gioia at the National Childrens Institute in Rockville, MD. He to recommended that I try this program, but made it clear that it is by no means a 100% guaranteed cure. All doctors have assured me that I am not at risk for permanent damage if I return to play. I have had absolutely no issues with memory loss, difficulty concentrating and my brain function was tested both with the Impact test ( I have taken this test repeatedly because it is a requirement at my school, and I took it at the concussion clinic) and some other brain tests that were administered at the concussion clinic as well. All test results pointed to my normal brain function at baseline.

I wanted to share this information with you because you seem to know a tremendous amount about this subject. And again, I appreciate your interest in my story. Just having someone to talk to whose been through something similar just means so much to me.

best,
Erica

Erica,

Glad to hear you are not having any academic struggles. I am shocked to hear <All doctors have assured me that I am not at risk for permanent damage if I return to play. > A helmet is often almost useless for Post Concussion brains.

Our brains are usually much more sensitive to minor impacts that a helmet will not protect against. Can you shake your head vigorously without a return or increase in symptoms?

I am having that morning brain fog. Maybe I should try to get some breakfast in me. I am struggling to get my mind to work. I look at the screen and after a few moments, I realize I am staring at my screen saver.

I am really messed up this morning.

Later

So, I spent the weekend watching my daughter at a state basketball tournament. Four games on Saturday and 2 games on Sunday. Today, I can't stand noise, light, and am so fatigued I can hardly stand it. I know Mark said that I have to get used to the "new" me, but I was a very social person and this weekend, I tended to distance myself from the other "basketball moms" because I just didn't want to be around them. I don't want to seem stuck-up, but I find that the constant talking and gossiping is really annoying.

The parents stayed up and played cards and I went back to my room to read. I don't really like doing that because my husband would really like me to do things with him. How do you get over that or don't you? I don't necessarily like the "new" me and would give anything to go back before my accident. I love my husband and he has been really supportive, but I fear that he may get tired of this in the near future. We talk, but I wonder if he gets tired of me blaming this on my injury. I should be over this by now. I am trying really hard, but there seem to be so many set backs.

We have talked about triggers, but there are just some things you can't give up. I never would have thought about missing the basketball tourney. My daughter was really excited and so was I. Today, I pay the price.

I am a fighter and I will beat this.

Sheds,

I know exactly how you feel. You might try using ear plugs when you go out anywhere. That's what I have had to do. I am on a division 1 lacrosse team, and its always expected that when you are injured you are at practice, games, lifts, etc. always cheering and making your presence known. Unfortunately, as you all know, doing any of that is impossible for me with out feeling like complete crap during and after.

So now, I only go to our games- I wear ear plugs and sunglasses and stand on the side line. I don't cheer, I usually don't speak, but i've explained to my teammates that it hurts my head to talk. Everyone has been pretty excepting of it, but I understand how you feel like your distancing yourself. It's been so long now that people really aren't as accepting of it, and just think that I'm feeling sorry for myself, or pouting. This has been the hardest part, because I wouldn't wish this on anyone.

Regardless of what you've told people, bottom line is that you cannot actively engage yourself in interacting in a normal way. It's HARD. I find that I don't want to talk to anyone either, it just takes to much energy. I to would rather just go in my room and read a book- it takes my mind off the hell this has been.

Atleast you have this forum to come to. Talking about the issues your having is hard, especially when it brings on symptoms! (as it does for me)

As my mom keeps telling me- try to remain positive. Keep your head up. It's so hard to do, i know. But atleast you can come to this forum and get everything off your chest :)

erica21
 

erica welcome

from vini ::)

I know exactly how you feel. You might try using ear plugs when you go out anywhere. That's what I have had to do. I am on a division 1 lacrosse team, and its always expected that when you are injured you are at practice, games, lifts, etc. always cheering and making your presence known. Unfortunately, as you all know, doing any of that is impossible for me with out feeling like complete crap during and after.

So now, I only go to our games- I wear ear plugs and sunglasses and stand on the side line. I don't cheer, I usually don't speak, but i've explained to my teammates that it hurts my head to talk. Everyone has been pretty excepting of it, but I understand how you feel like your distancing yourself. It's been so long now that people really aren't as accepting of it, and just think that I'm feeling sorry for myself, or pouting. This has been the hardest part, because I wouldn't wish this on anyone.

Regardless of what you've told people, bottom line is that you cannot actively engage yourself in interacting in a normal way. It's HARD. I find that I don't want to talk to anyone either, it just takes to much energy. I to would rather just go in my room and read a book- it takes my mind off the hell this has been.

Atleast you have this forum to come to. Talking about the issues your having is hard, especially when it brings on symptoms! (as it does for me)

As my mom keeps telling me- try to remain positive. Keep your head up. It's so hard to do, i know. But atleast you can come to this forum and get everything off your chest

Finance
 

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

Concussed Scientist,

I wish I could give you a success story in this area. I had to return to work 4 days after my accident because my family could not afford to have me off of work. The 4 days was only possible because it fell over Christmas break. I didn't have the time to rest. During the days following, I would find a dark place at work to sleep for my half hour lunch and then finish the day. I have 2 children so even when I got home, it was hard to rest. I also felt guilty because I didn't seem to be spending time enough time with them because I was always tired. I would really like to know if I would have taken the time to rest if I would be better 16 months out, but I guess I will never know. So, we seem to trudge right along and live each day as it comes.

Trudging right alone with life
 

Hey Sheds,
I can sure appreciate to dilemma that you are in with children. You want to do the best for them but so you try to struggle on when it might not be the best thing for you. I bet this is a common problem. People just do not take the time off to rest and recover that they really need. And doctors don't tell you how important this is. They really should give better advice on this.

Looking back, I wish that I had taken more rest, but the trouble is even now I don't know how I could have arranged it. The truth is that unless you are in the enviable position of having savings to fall back on or a familty that step in and do everything for you then you pretty much have to carry on as best you can and take whatever rest is avaible to you.

Perhaps if you explain the situation clearly to your family then things might be a bit easier.

CS

Concussed Scientist,

My family knows what this all means, but as a mom I feel like I have to do everything like before. I know that I should relinquish some of the duties, but I just can't seem to do that. That is my own fault. It is one of those cases where I want to make sure that my family is taken care of first and then comes me. I am no "super mom", but I always want to be there for my husband and kids. It's just hard to set limits for myself since I am not used to having to do so.

Hi CS,

This is a very difficult issue to address. I think that working can be okay depending on the task. The problem is that with an MTBI/PCS, as I'm sure you already know, is that your tolerance for stress is much lower and unfortunately stress can really hinder recovery. In my case I tried to continue working in the lab for 3 months after my injury, dialed it back to working on the computer at home for 5 months, and then finally realized that trying to work was doing more harm than good, which led to a 5 month leave of absence.

As far as finances are concerned, I would certainly look into government disability benefits/insurance that might be available to you. Depending what you were doing for work prior to your injury you might be eligible for some support (granted it might not be a lot). I appreciate that this can be quite a serious problem as you have to delicately balance your health and finances. I would try to recruit help from a family member or friend to figure out what your options are as the stress involved in trying to do it all yourself would certainly be a negative impact on your recovery.

Thanks
 

Thanks, Tangje.

I suppose each of our situations is different. Now that I am over two years post-injury, I think that I can manage to work without doing myself too much harm. In fact, the extra income means that I can have some therapy which I couldn't afford before.

I was mentioning the financial side because I think that that is a real issue, especially in the first year after an injury, when you are at your worst and haven't adapted your life to the new situation yet.

CS

no easy answer
 

hi CS
no easy answer I had to give up work, be it by the gentle mans way out

we have a 9 yr old still with us, at home my injury,s were self evident, so getting disability living allowance and incapacity benefit saved our home . it was tough, but debt we live with, a big come down from a 45k project manager, it pains me greatly that all our kids even the older one,s have lost so much

you guys with no skull fractures. must have a real hard time getting docs ect to take you seriously, my last neurophysiology report says I will not be able to do any full time challenging job for the foreseeable future , my head aches stop me from doing many things, cant say when they will strike, at home, I can work round them posting on forums bits an pieces around the house , but not 9 to 5 just between bouts
employers , can,t be expected to work round my condition

best wishes

Wow, something I can finally relate too. For the past two months I have been dealing with post concussion syndrome. I am 20 year old division one athlete and have been doing everything to recover.

About two months ago I got my 3rd concussion. The first two I had only lasted for about 1 week. But this one is the devil


I've been looking for answers everywhere. Been to 2 docs, a neurologist and even a psychiatrist appointed to me by the nuero. I can't even begin to describe the frustration i've been in throughout these past 10 + weeks. Its came to a point where i do not know what to do.

Reading these posts have made me more confident and re-assuring. I have been an athlete all my life and always been the life of the party between my buddies. I am counting down the days till i can get back in the gym. Its came to a point where i dont know what to do anymore. I am just sitting here day after day watching and listening to my friends have fun and me missing out.

I had to withdraw from school due to this. I lost my scholarship and have lost contact with a lot of my friends. BUT reading these posts has me feeling confident and waiting for the day that i can feel NORMAL AGAIN...:D

Ive been reading alot about this research clinic in Buffalo.

Has anyone had any success?
ANyyyy answers out there???

Thanks

Hey JSwim,

I am a 21-year old varsity hockey player and have been dealing with concussion problems since November. There are some other athletes on these boards as well. I can assure you that we know exactly what you're going through and are as frustrated as you.

I have been to what feels like a million different doctors/specialists with no answers. Doctors, athletic therapists, physiotherapists, osteopath, neurologist .. you name it, I think I've seen them! Just yesterday I saw a neurosurgeon who ordered MRIs for my head, neck and back so I'm hoping that will lead somewhere. I've also been dealing with some other problems related to my spine.

In the meantime, I am in contact with Dr. Willer, one of the researchers at the clinic in Buffalo. I am hoping to go down in a few weeks to participate in the program. I would imagine you are stuck at the "no exertion" part of this whole process. I have been trying that for the past four months with no improvement which is why I am looking into this concussion study in Buffalo. I would suggest trying some really light biking and see how that goes. I made the mistake a few weeks ago of trying way too much (I did 10 minutes) and it made my symptoms worse and it took me about week to get over it. Give a minute or so a try and see how you feel. I am just at the beginning of starting to try to exercise myself. My biggest suggestion would be to just listen to your body .. I know how frustrating it is and how hard it is not to be at the gym every single day, but I made the mistake more than once in the past to just try and push through the symptoms, something I hugely regret today.

Feel free to look back at my past posts to read my full story on how I sustained my concussions and what I've been battling through. I look forward to getting to know you better :)

Best,

Kelly

jswim,

Sorry to hear about your concussion.

It may help if you can tell us about your previous concussions, primarily when you suffered them. What sport do you play? Did you suffer the most recent concussion playing your scholarship sport?

What are your specific symptoms?

Hey
 

Hey guys,

Thanks for answering my questions. Well i swim for a d1 school and have been doing it my whole life.

I am one of the big guys in the water 6'4 215 and have always been a real physical person my whole life. I act more like a lacrosse player then swimmer.

Any way i sustained this concussion in march when i was black out beligernt drunk. Apparently me being a **** and talking like an idiot led to me getting sucker punchd and kicked in the head. I don't remember anything but this is what i was told. I was knocked unconscious.

Ever since then its been the worst time of my life. I recently had a procedure because iwas diagnosed with vestibular bilateral dysfunction on top of my PCS. I guess the crystals in my ear were knocked out of place. The procedure required me to lay on each side followed by me in a brace for 24 hours.

DID not work....So the next step is therapy. I also was given some medicine for my headaches and its an antidepressant as well.

Well see what happens, yet again waiting for the day till i can feel normal once again.

one more thing......
 

Forgot to add symptoms...

I am constantly feeling out of it like in a haze . foggy feeling

headaches

pressure on top of my head

dizziness

and ears sometimes hurt

hey jswim-

I'm SO glad you found us. I to am a division 1 athlete (lacrosse) and have been dealing with PCS since october. I've missed my entire senior year not only on the field, but socially. So, as kelly said- we can really relate here. I cannot believe you lost your scholorship? It doesn't sound like you are getting the support you need at your school. Is this because you sustained your concussion outside of swimming? If so, I hope they are still providing you with medical support?

I have some pretty uplifting news myself that hopefully will have any readers feel hopeful. After 7 months of hell i am FINALLY feeling like myself again. I to had severe headaches, a foggy sensation, dizziness and now have a neck and back problem.

I knew I was getting better when I was able to travel with my team down to our conference tournament, sit through and actively engage in conversation at dinner two nights in row and I don't have to wear earplugs anymore to block out noises. I was able to do all of this with out feeling like I did to much, or have to excuse myself because I was getting a pounding headache/feel pressure building up in my head from talking to much.

Up until a week ago I had serious doubts that I was ever going to get better, and it was downright depressing. After having a string of really good days I am feeling more confidant than I ever have about recovering fully. At the same time, I've become so accustomed to feeling this way, that a.) it feels to good to be true and b.) I'm terrified I'm going to relapse. BUT, I try my best to block these thoughts out and KNOW that I am getting better.

Tomorrow I am heading down to Buffalo to the concussion clinic. I am SO excited. My teams athletic trainer has been administering work outs for me on the bike. I'm up to 11 1/2 minutes on the arydine bike at level 2.5. I started out going for 5 minutes at level 0.6 and have slowly and steadily worked my way up. The number one thing to remember when trying to introduce exercise is to ALWAYS stay beneath your threshold. This means any onslaught of symptoms warrants an immediate stop! I know you are looking forward to getting back in the gym but if two minutes is all you can handle at a steady pace before you get a headache, then two minutes is all you can do. That also means that the next day you can try going for 2 1/2, and so and so forth.

I'll be posting to let everyone know how my appointment goes tomorrow!

Erica

Hi I can't say that I have or can go back to whom I was. This thing changes every thing in our lives. It took me a long while to understand I will never be the person I was and this is who I am now. I had work as a nurse for at least 15yrs and now will never be able to go back to the thing I loved. I wish I had some great words of wisdom but I don't. It is amazing that one split second your not who you were. I am trying very hard to figure out who I am now. All I know is somethings will return and somethings won't but no one knows how the outcome will go. Try to take one day at a time it's easy for us to overload. Some days we might be able to do this others we won't be able to just know that we have support here and can share our troubles and heartaches. Add me if you want. I hope I helped in someway. Take care. Kimmy

Lingering PCS
 

Hello all. I just wanted to let you know that you are not alone. I was in a car accident over two years ago and still have PCS. I'm confused but still have hope. I've been told it will go away one day, I'm still waiting for that day. Since then my life has been upside down and I am a different person because of it. I still have memory problems, lack of focus, and headaches. Those are the symptoms that bother me the most. Good luck to all and God bless.

erica21 and others,

Please be careful how you think about "recovering fully." You will always be Post Concussion, even when you feel 100%. Your brain will be subject to stress in every way. The best way to accept this prognosis is by just doing it. There is no easy way. Find the new you and start to build your life around this person.

There will be times when you have a high tolerance and other times when you have a low tolerance. The low tolerance times will likely be when you have other stressors setting you up for a relapse (decompensation) due to loud noises, flashing lights, chaotic environments, a high fever, etc.

You may be able to go a long time without a decomp then have a string of decomps over a short period of time. If you have people close that can help, ask them to describe the old you versus the new you. As you come to understand how others' perception of you have changed, you can learn to adjust from within.

For example, I over-react. My wife helps me leave situations where I will likely over-react. I also have to take responsibility to situations I get into. By making better choices about "having to be right" or "having to right a wrong" or "refusing to accept NO," I can avoid getting into situations where over-reacting will become a problem.

Getting drunk is a common problem for PCS. It is like getting a concussion again.

Work at learning coping skills for memory weaknesses etc. Develop habits that will carry you when you have a decomp period.

To highlight this need, let me explain my situation. I lost short term and immediate memory skills almost overnight on Jan 16, 2001. I had been used to a photographic memory. I did not use any memory tricks or systems. I did not need them. Now, I cannot remember to use the memory tricks or systems.

As a comparison, my father suffered a very slow memory function decline over 30 years. As he noticed his struggles, he developed habits of using note cards, check lists, and other memory aids. By the time he was seriously unable to remember important things, he had already developed habits that allowed him to continue to function at a high level. We did not understand how bad his memory had become until a doctor did some memory function tests. When we were told of his declining condition, he finally told us about the many things he had hidden from us by using his notes, etc.

Since we have a likelihood of an Alzheimer's like dementia at up to 18 time higher probability than the non-concussed population, developing these memory skills while we still can will be a great benefit to ourselves and our families.

btw, one of the long term symptoms of PCS is mental rigidity or inflexibility. This means we can get stuck with an erroneous understanding of something. If we have learned habits to help us understand our failing memories, it will lower our own frustration and the burden it puts on our families, etc.

As kimmyann said, one second later and you are a different person. Try to accept and embrace this new person so you can build a life with this new you.

For those of you with hopes of continuing with your sport, consider how you can destroy you life with another concussion. Build that new life without a concussion risk. You will be rewarded by the time you are forty something.

My best to you all. Here's to hope that you can enjoy your later life better than I am enduring mine.