5 Stages of Concussion Recovery

Undoubtedly, you’ve heard of the five stages of grief. I believe that there are also five stages of recovery from concussion, and post-concussion syndrome in particular. Based on my experience, this is what I think they consist of. And while much progress has been made in recent months and the past few years, I imagine much of this still holds true.

View from the mountaintop

1: Injury

These are the days, weeks, and initial months immediately after the injury. Symptoms are at their worst. You have to rest a lot. Your life changes and you begin to adjust as best you can. Everyone around you is supportive.

You research on the web as much as you can. You want to know what is happening in your brain. You have tests done. You go from doctor to doctor, hoping to find something that works. Something might, but it may not.

If you’re lucky, the concussion resolves quickly and this is all you experience. You never get to stage 2 or anything after that. You resume life as you knew it before the injury.

If the concussion symptoms and recovery persist, you eventually find yourself at the second stage.

2: Insult to Injury

It’s commonly expected that your concussion will resolve within days, weeks, and certainly within a few months. If it goes longer, people start to turn on you. Physicians and those in the medical community, and insurance companies in particular begin to look at you askance. Your character is questioned and attacked, your supposed “motives” looked at suspiciously. You begin to hear terms like “malingering” and “anxiety” and accusations of varied sorts. You may be told that you suffer from “somatoform” – that you have the type of personality that puts forth a “best effort” to recover but that, in actuality, you’re making the symptoms happen. In other words, you’re bringing it on yourself. In other words, it’s psychological, not physical. I disagree. Strongly.

All these accusations occur because, of course, nothing shows on the tests. The MRIs and CT scans don’t always show indication of concussion. While everyone knows this, they still use it as some sort of proof that there’s nothing wrong with you. In my case, my doctors “assured me” that there was nothing physically wrong with me.

Cognitive tests may not show the problems entirely, either. I strongly believe that the time of day at which you take cognitive tests matters immensely. The tests should be taken when one is most fatigued, in my opinion. That’s the only way to really see how bad it is, I think.

Of interest in all this are the milestones at which you’re expected to be recovered from your injury. The main ones are six weeks and six months. Those time periods also happen to correspond to insurance benefit lengths or waiting periods for insurance to begin. My question is this: what is driving the discussions of recovery? Science, or insurance? I suspect the latter.

There’s one thing I’d like to find out. Insurance companies and doctors like to see “proof” that concussion exists. I would like to find some scientific studies that show why the six-week and six-month timelines are set. I’d like “proof” that these time periods are not based on insurance benefit and waiting periods.

If you come across any scientific study to support the six-week and six-month timelines, please send me a link. I’d love to be wrong on this assumption I have developed.

Once you hit six weeks, just watch out. Don’t be surprised if the character attacks begin. You will learn what “insult to injury” really means.

This is the point at which you have to fight not only the concussion itself, but all the doctors and insurance companies, and possibly your place of employment or school as well.

3: Hunker Down

At some point in this you’ll realize that, for the most part, the medical community isn’t aware of problems with concussion, let alone how to treat it. Or you’ve taken it as far as you can with treatment you’ve received to date.

Noone.knows.much.about.concussion. This, you finally realize. You are on your own. You realize that further doctor visits, research, or discussion with others are pointless. You stop those activities.

At this point, you hunker down and focus on your recovery, blocking out all else. You put on blinders and look firmly ahead, focus on the successes each day, no matter how small. You trudge on.

Never give up.

That became my motto. So I did, and eventually made it.

Note: This was my experience. This stage might be different for you. There’s much research being done right now and more is becoming known about concussion all the time. I’m hopeful that this is getting better and will continue to do so. I think it will take time, though, for knowledge of concussion to become widely known. So it wouldn’t surprise me to hear that you’ve tried to find doctors that know about it and how to treat it, but you’ve been unable to. If that’s the case, and you’re at this point, settle in. Keep researching, keep up with developments, keep trying, and focus on your recovery.

Update: March 14, 2013. I’m more hopeful than ever that this may be finally changing. I think the medical community is now more aware of concussion, at least. There is progress. However, I still hear about people having to deal with doctors who still know little about concussions and how to treat them. So, unfortunately, I don’t feel I can change this until I stop hearing that this is the case. Keep up with all the changes going on. There’s one way you can do so: follow my Twitter paper: the #Concussion Daily. Here’s a link, and you can also subscribe to it so it’s delivered in email: The #concussion Daily Paper.

Update: December 6, 2013. Wow. A day I never thought I’d see. Today, on Twitter, @the_jockdoc sent out a number of tweets about concussion and how it’s not just a functional issue. And that tests like fMRIs, PET, and more are needed. Made my day! Things are changing, folks. Things are changing. Yet I still long for the day when I can change this section entirely. Until then – hang in there! Stay hopeful!  And please follow @the_jockdoc on Twitter. He’s working hard on this issue. :)

4: Mountaintop

One day, you find that you made it. You hunkered down and climbed a mountain. The problems and symptoms resolve to a point to where you have important pieces of your life back. Or, you find that you can do much more. Whatever the case, you realize one day that it’s behind you, for the most part. You made it.

The time it takes to reach this point varies from person to person, no doubt. For me, three years stands out, then four, then definitely five. At three years, I was finally able to ride my bike again. At four years, I finished a super-sprint triathlon. At five years – well, it’s part of my history now.

The triathlon was my mountaintop. I also received some recognition for my blog, which I had started as part of my recovery. So that fourth year was my turning point. I specifically remember being out jogging and feeling very strong in my run. I realized that I would be able to participate in the triathlon. That was the moment I crested the mountaintop. It was one sweet moment, let me tell you.

5: Transition

This stage was a big surprise to me. Once on the mountaintop, I was finally able to take off those blinders. I could look around at everything else. I no longer had to focus on my recovery so much. I could stop blocking things out and instead look at everything. Start doing more.

That was a transition period. After several years of hunkering down, it took some time to get out of that mode. I didn’t expect it, but there it was. It just took some time. It wasn’t difficult. In fact, it was a very good time in my life. Very different, though. Yet very rewarding, to say the least.

I won.

I hope you do as well, if you have a long-term concussion and are reading this. Just remember: never give up. Never let the insults deter you or bother you. Focus on yourself and your recovery. Trudge on and climb that mountain. You can do it. Always believe that.

Keep your eye on the prize: stages 4 and 5.

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Comments

  1. Jeffrey says

    Thanks for this site. I learned of it from the NeuroTalks forums.

    Very happy you’ve reached stage 4 & 5. Also appreciate that you listed the time it took.

    Though I know the time varies for everyone.

    I used to run before the TBI (almost 2 yrs ago), and don’t ever want to risk shaking the head again. I’m 38.

    Guess it is OK for you, though, which is great.

    Thanks for the encouragement.

    • says

      Hi Jeffrey,

      Thanks for the comment. :) I’m glad you were able to drop by and have found it to be helpful.

      It was a long haul for me, that’s for sure. Sorry to hear you’ve been dealing with one for a couple of years. Not fun. And I know what you mean about running. I wasn’t able to run for a long time. It always felt like the top of my brain was hitting the inside of my skull. It’s a very odd sensation and quite uncomfortable, to say the least. Eventually, it just got better. Don’t ask me how. I have no idea.

      I know what you mean about not wanting to risk anything again. As much as I’d like to, I don’t think I’ll go ice skating again. I don’t want to slip and end up with another concussion and prolonged recovery – or worse. But that’s me. Might be fine for others. And who knows? Perhaps you’ll be able to run again. Think that you will be able to. Just don’t give up. I don’t recall when I started running again, but I think it was three years before I could ride a bike again.

      Concussions can take time. I hope that yours resolves sooner than later. Hang in there, and never give up!

      - Julie

  2. Julie Cesare RN says

    What a well written post!

    I am months post concussion and have just started running, building up my endurance over the past few months!

    I did not run pre-concussion, I was actually a pack a day smoker! My injury actually prompted me to “get healthy” and take better care of myself :)

    The stages are right on target. Being an RN, I can’t even begin to explain my disappointment in the medical community regarding all that I have experienced through to this point.

    Mine was a work injury, and I have YET to receive any formal treatment as of this post. Sure, I’ve had consultations and Neuropsych testing, but NO treatment. So I took my treatment in to my own hands, and began exercise to tolerance…and pushed a little more and continue to push forward..

    While I realize I may suffer setbacks from time to time, I pulled myself out of that “black hole” of despair, depression and frustration…which comes from other’s lack of understanding…it’s just an absolute shame!

    I am so very happy to have found this site through Neurotalk…and we share the same motto…”Never give up”…and it has always been my intention to “Never give up on myself”…:)

    ~Julie

    • says

      Hey – another Julie! Hi there! Thanks for the comment. Glad to hear that you have kept that same thought of “never give up.” It’s the only way to go, I think.

      I’m struck by your comment about the positive impact this experience has had on your life (your lifestyle changes to get healthy). That’s great. My concussion and recovery have had a positive impact on my life as well in two main areas: I realized for sure that the people in your life are most important. Also, during my recovery, I learned about blogging and social media. That, in turn, has enabled me to work on advocacy for concussions. I would not have had time for that had it not been for the forced time off to recover. So, that’s a plus.

      You do have to find the positives. Sometimes it may seem like there are none. But they’re in there somewhere. Glad that you were able to keep up that attitude, keep fighting, and turn it around somehow so you came out ahead. Great!

      - Julie

  3. Wendy says

    My accident was June 2010 and i have been in constant pain from the physical part of my head healing. I was told at the beginning that how everything heals in your head is by causing pain and clamping down. Well i have been at this now for 2 years. Unfortunately I feel absolutely everything inside my head while it is moving and healing. At the 1 year mark my doctor all of a sudden told me this could not be happening. i could not believe that all of a sudden one day someone could say this. At that point in time i had gone without any type of Long Term Dis. for the past 7 months and since none of this can be shown on x-rays, etc, i have still yet to see any type of monies from that point in time until now (1 year)so i don’t understand how she could think i could make all this up.At that point in time i reached out to another doctor who thought there to be inflamation still in my head causing all this pain but of course he did not want to get involved and said everything had to go thru my reg. doctor. What i have experienced and felt inside my head is point blank drop dead unbelievable my head inside was so bad.
    I began this journey by hardly being able to walk, – more like a 90 year old or toddler – my head was enormously heavy. so i person understands how heavy it was i still now have a heavy head but for the last 2 months can feel it getting lighter (with the pain and healing it is doing) every 3-5 days. I am still in bed or couch for 1-2 days a week and am now finally getting days at night time i can get out in the world again.
    I know with my head getting lighter week by week now I do have hope that this eventually stops. Wish i knew someone that has gone thru the physical pain this long. I have been now to 8 doctors of which 2 are nueorologists. NO CURE is all i am told, if you see improvements over time of what you can do then you are progressing.

    • says

      Hi Wendy -

      Thanks for your comment. I’m so sorry to hear that you’ve had such a difficult time. I completely understand your frustration with trying to find out what’s happening. Personally, I think that all anyone with a concussion wants to know is: what’s happening in my head, when it will stop, what can be done to fix it, and when will I have my life back the way it was? It’s so difficult when doctors don’t know how to treat it. Even worse when they seem to dismiss it or act in a condescending manner.

      You hang in there. From what you’re describing, you’re having some progress. I know it’s hard, but grab onto that. Focus on that. That’s what got me through my long recovery. It took forever, it seemed. And I think I slept or rested half my life away for a few years. Very frustrating. People really have no idea how hard it is to deal with a concussion. Only people with one or those that have had one can possibly understand it. I think that everyone deserves a medal for being so tough and so strong to keep plugging along in the face of such adversity. So, I’m sending a virtual medal your way. You deserve it!!! Keep going….

      • Wendy says

        Julie, Thank you for your ever so kind words. Did you blog your recovery and is there somewhere i might be able to read this. Did you have physical pain throughout this whole time? I am just wondering if there is things you learned during this that made you worse. I just cannot believe there is such limited knowledge to help people that are this long. I have realized the sun or even the heat of the day is murder for me. i am wondering what else i am missing. I am now since i first wrote that i am able on 3-4 nights a week after about 6pm that i am able to go to the gym and ride the bike and treadmill. I just yesterday after 3 bad days mostly laying around to handle this pain that might head is just a wee bit lighter. this has been enormous for me even in walking up stairs or doing the odd chorse as it is easier for my head to come back up from bending over. Even a towel on top of my wet hair is no longer dreadfully heavy. as small as the things are i try to celebrate the tiny things. People and friends around me just cannot believe this so i have to really alot of the time stay away from people as this just does me no good. if they would only stop to think 2 years with this why in heavens name would a person want to lay around that long. Thanks again Julie, even someone listening makes the world of difference. Wendy

        • says

          Hi Wendy,

          I didn’t keep a journal through this. I wish I had. However, I think that in the midst of it, I was just trying to get through it, and just wasn’t ready to keep a journal. I know that’s silly, as I’m a writer, after all. Maybe in some way I didn’t want a reminder of it. I really don’t know. I thought right after my accident that I should take a picture, but half my face was one big bruise and I had a big bump on my head and my eyes were all puffed up, and it changed every day until it finally worked itself out. My son said it was scary. I didn’t really want to record all that, I think. I also received a copy of my MRI in the mail, and couldn’t look at that until much later. I think that when I was going through the worst of it, I didn’t want to know or recall later on, if that makes sense. I have all my medical records, so plan to go through all those again so I can try and pull a post together and share my experience in the hopes it helps someone else. So that’s the long answer to your short question!

          I didn’t have any sharp physical pain that I recall. My head would “fill up” every day and then I’d have to rest. Sometimes some numbness too. I didn’t have migraines like so many people do. My heart goes out to all those experiencing that. I sure wish I had a magic wand I could swirl and make such difficulties disappear. I could never figure out any kind of pattern. I tried. It just changed every day. I looked at the amount of sleep. Foods I ate. What I did physically that day – or not. I could never figure out a pattern. Drove me nuts. That’s one thing that’s so maddening about concussion. It’s a wily critter. At least it was for me. Some days were good. Some were bad. Some were really, really bad. Eventually the good ones outnumbered the bad, and here I am today talking about it as a mainly past occurrence. One big mystery. And I think that one of the most difficult aspects is that so little is known about it. In this day and age, you expect a large body of knowledge about a medical issue. So it was a real shock to find that there was none. It’s finally getting better, although it’s mainly just getting recognized at this point. There’s still a long way to go, IMO.

          I totally agree with you about your comment about it taking so long. That’s the greatest flaw in the argument that people make this up or bring it upon themselves, I think. Noone – and I mean noone – would want to deal with a concussion. I’ve yet to meet anyone going through it that thinks otherwise. What’s it going to take for them to catch on, is what I wonder. When will the scales tip? I hope that those around you get to understand it more and that it can take a long time for recovery. That’s a big reason for this site. I think the so-called 10-15% minority that have PCS is actually exponentially higher. You’re just not hearing about it, I think. People just stop talking about their experience with it. When will they catch on to that, too, is what I wonder. Long-term PCS has not been studied, really, as far as I can tell.

          I’m kind of wandering here, but I hope you’ll keep at this. I can’t tell you how much I slept for a few years. How much I missed. It was hard. But you just have to keep fighting anyway. Glad to hear that towels aren’t so heavy on your head any longer. Grab onto that fact with everything you have and block out the rest as best you can. It’s the recovery successes that are important to focus on, IMO – no matter how small.

          • Wendy says

            Julie, thank you again for your reply. i myself pain wise feel absolutely drop dead everything it is doing inside my head, nerves, soft tissue, muscle, -as if i know what is what in there. at the beginning my doctor was really good. About 3 months after my accident i finally starting getting pain. For the 1st 2 months i had none at all. To me it was a big 500lb concrete bowling ball on my head. i took baby steps just to walk around house. At the first it was a nerve lining up on the left side of my nose and i described to her. her answer was “there is a nerve there and it must be healing it”. I took that all in and said nothing……..thinking “ah, hello, who is healing it, who is in my head doing this making this pain?” I thought “are you so flippin kidding me?”. Since that day, it now this Sept. will be 2 years. Sometimes or some months it is the outside but for the last 1 year it is the inside of my head. I feel absolutely everything it is doing. To me it is drop dead remarkable, unbelievable, you can see me wince with pain and move my mouth and face to allow for the pain inside……but all of course not shown on MRI’s, CT scans or anything. So in my mind i perservere and try to live life the best i can with what i get given everyday.
            You are ever so right about not writing about it, not journaling, etc. etc. my sister told me this and can you imagine what mine would have looked like”it is moving the soft tissue from behind my mouth to the left side of my head, it is moving it with strings i feel”. Ssrry julie where in the drop dead hell am i gonna find this on the internet to make this up. At one point 1 1/2 years down the road bless my dear husband he said is this a headache or what cause this is getting ridiculous. Nope sure not, i feel strings in my head and it is actually moving stuff from behind my mouth over to the left. now take that and tell all your friends that that are asking about me, cause i would be admitted to the funny farm immediately. he looked at me and said “but your brain is fine” yuppers sure is, but i don’t think people realize how drop dead bad the actual physical part of my how bad it was and how very wrong it was as nothing inside was in the correct place in my head. He is now supportive and very good. It is just what the doctor said “it clamps down inside your head and this is the way it heals it, then it realizes it (the good part). So journalling to me was out of the question as you are right. i just do not want to remember this. I remember the parts of the head it was working on by the different parts of the year.
            Yes as for good and bad sleep is my next day’s pain medication. Vitamins and food play a huge part and just plain old rest. In my mind it is going to stop when it has nothing more to heal. Makes sense to me although doctors say you have 1 year to heal so i guess i am the exception to the rule. (Hello!!! not true i have heard so many other people heal more so after 1 year, they need to be shot for saying this to a patient)
            The other thing i found which helps in case someone is reading this is fresh air. I saw on the Oprah show a guy who had post concussion that tried the hyperbaric oxygen chambers and he said they work. this works on the principle of more oxygen to the brain?I did try that oxygen bar thing you stick up your nose, within minutes i could feel it in my head go faster and more intense pain than i was already experiencing so i quickly took it off. so i try on cooler days to get as much fresh air as i can. I know anyone reading this that this will sound totally hokey but when there is no cure or nothing that will help you are willinhg to try anything. so a person would need a cooler day and just be outside as much as possible. sit outside reading a book, go for a walk where there is benches to sit, spend a good 4-6 hours outside and see if that works.
            Again Julie thank you. you will be on my list to notify when i get my first pain free day. that is what doctors look for.

  4. Margarite says

    WOW! Thank you so much for this post. Right now I am going through a little bit of a slump. After about 12 concussions in 3 years I am just having trouble still hoping that it will ever end, having trouble seeing an end. The pain, the nausea, and the complete inability to do anything beyond being a bum. I am so sick and tired of being sick and tired and I am only 23!
    Thank you for giving me a spark of hope again.

    Margarite

    PS: I found a link to this website on Neurotalk too.

    • says

      There’s always hope, Margarite. Always believe that.

      It gets old, for sure. I know exactly what you mean. It was hard for me to go from being “professional mom” to “sick mom” who couldn’t participate in family activities and such. Or work. For such a long time. So yeah, it’s tough to feel sick all the time. I totally get that. Ride out some of these frustrating days, but always get back up and trudge along.

      After my years of frustration with my own recovery, which resulted in this website to get info out, I’m actually becoming more hopeful in general. All this sudden awareness is really starting to make a difference. Just last week, for instance, I saw an article that was disseminated to the AMA doctors, in which the intro stated that concussions can last a long while. That’s a change from the standard “people recover in a few days” that has been so prevalent everywhere. To me, that was huge. It’s still too slow, too late, too frustrating – but I do believe it’s getting better. Slowly. But – there’s hope. Just keep your eyes focused far ahead and envision your recovery. Look at that. For me, I blocked out everything else as best I could and kept looking ahead.

      For me, I envisioned participating in a triathlon again. That was my recovery goal that I focused on. It was a few years before I could do that, but I was able to volunteer at one the year before I could do one again. In that way, I was able to participate to some degree. So look at that, too. Maybe you can get your life back in increments. It just takes time. Another aspect for me is that I’m also very stubborn. I wanted to win this. I didn’t want this thing to take over my life. And you know what, I did win. It took a long time, though. Bet on yourself and keep fighting.

  5. stephen says

    Hi Julie– thanks for the post!

    I am 19 years old and have had 3 concussions (from what I know). It has just done nothing but drive me crazy for the past 8 months of my life. It started in January at a wrestling practice, when I received a blow to the noggin but did not black out. 4 months later it went away and I was finally cleared to play sports. Me being the dumbass went back and got hit again and It came right back. Im always out of it, dizzy, cant think straight, severe headaches. I am off all the medications that my doctor gave me because they just didnt work, and he was just throwing random medications at me…. I have seen many doctors and nothing works… nothing has came up on my MRI’s for a concussion. I was a very happy, athletic, and hard working kid. But now I just have been a bum for the past 6 months. I feel very hopeless and depressed all the time and I do not know if it will ever go away!

    Thanks again.

    -Stephen

    • says

      Hi Stephen,

      Thanks so much for your post! I’m sorry to hear that this is dragging on so long for you. I totally understand your frustration with going to see many doctors to try and find information. Been there, done that. It’s not fun. You just want to know what’s going on so you can fix it and get your life back.

      Well, I finally determined that I was on my own, and started researching more than I had been. Good news: there’s a lot more out there now than just a few short years ago. And I know I mention this a lot, but I think it’s worth reviewing. Vestibular issues can mimic PCS symptoms. I had some vestibular physical therapy, and it helped me. Here’s a link to a page about it: http://vestibular.org/understanding-vestibular-disorder/symptoms.

      I just posted an article about resources on the Web for finding information. You might find some of them useful. My Twitter newspaper, for instance, gathers articles and information shared daily on the #concussion tag. Just following that tag will provide more info. There’s more happening now than before. I also have some pages listed on my Facebook page that might have info helpful to you (like headache and vestibular pages, for instance). So keep your hopes up! I know how hard it is, but you just have to keep fighting it. Always believe it’ll get better. Assume it will go away, and hang on to that thought. Try not to let it get to you…

  6. Nikki says

    Love the encouragement, & to “Never Give up, Focus on yourself & Recovery”. Exactly what I have been doing. I actually wrote a poem, “Take a Hike” 2 months after my severe head trauma.

    I was in the back seat of a vehicle, Cinco de Mayo, 2011, rear ended by a drunk driver. I was knocked out & still missing part of my tooth.

    It’s so hard for me to even talk about what I’ve been going through. The loss of memory & sensitivity to sunlight is a topic I rarely discuss.

    Unfortunately I got injured again 7 months after on a set, & we were running on a film. A guy fell over & I tripped over him, past camera into the wall. My recovery has been 1 of a kind. I’m 33, & work & hustle as always. I suffer in silence & would rather work than be at home thinking about my pain.

    I have to get a couple CT scans, but you’re right.. Nothing will show up.. I was hoping to not be stuck with a disability. The 2nd injury is Worker’s Comp.. Not fun, so I cover most my treatments. Can’t deal with that insurance company. I do have representation, but look forward to being pain free.

    I had Stage 2 Concussion, Internal bleeding.. I am so grateful my friend woke me up. I had no clue last year what was going on, so I went to bed waking up to lightening. Traumatic.

    Anyways, take care all, this is too emotional for me to even write. I have hardly told anyone.

    Love & Light,

    Nikki

    • says

      Hi Nikki,

      Thanks for your comment, and for sharing your information. I appreciate how difficult this was for you to write. I know it’s tough. It sounds like you’ve sure been having a rough time of it. It’s hard to go through, for sure. It’s hard, too, because people don’t understand it. The sensitivity to light can be very difficult. I’ve heard of people having to wear sunglasses at night because of it.

      You might also be interested in the online concussion forum that’s out on the Web. I included a link to it in my just-published Web resources article. There are many people on that forum that discuss different aspects of PCS.

      Hang in there, Nikki. Always think that better days are ahead. And good luck with your CT scans!

  7. Oliver says

    Hi Julie,

    your post gives me hope in the sense that eventually people do get better…

    I had a mild concussion in April of 2012 and never had any headaches. My symptoms are the fogginess, sleeping problems and a weakness in my legs. Even though I am not even at my 6 month mark I am so fed up with it. The fogginess comes and goes without a pattern it seems…at times it’s heavy and at times it is so light to the point that I feel normal. All in all my symptoms have not really gotten much better, though. Depression / Anxiety have become more and more of a problem now.

    I do have a very empathetic neuro-psychologist who is not dismissive at all. Hopefully the antidepressant (remeron) I was prescribed a few days ago will help. It seems to be doing the job for the sleeping disorder…time will tell if the depression / anxiety will go away, too.

    I’d appreciate if you could answer two questions for me:

    1.) Did you experience the fogginess as well and if so, did it resolve over time?
    2.) How did you handle the emotional and psychological distress you must have experienced as well?

    thank you so much
    Oliver

    • says

      Hi Oliver,

      Glad you stopped by! I’m sorry to hear about your concussion. They’re not fun. I’m glad you haven’t had headaches and that your neuropsychologist is so helpful. That’s great news. Here are some answers to your questions.

      1. Yes, I experienced fogginess. Every day, probably. What I did was work at my computer in the mornings for a few hours – as much as I could until my head filled up again. Then I’d have to rest or sleep for several hours, usually. Then I’d get back to it later on. If I could. Sometimes I wasn’t able to get in a full day. If I had overdone it, or worked too long, it might have required a longer rest time. And then I’d really be foggy the rest of the day. It really depended on the day. Like you noted, there was never a pattern I could discern. I really never knew what to expect from one day to the next. That’s one of the most frustrating aspects of concussion, I think. The inability to pin down any kind of pattern or to find something that works consistently. It’s the most ridiculous situation. You can’t predict anything, you can’t expect one day to be the same as the next. You don’t know if you’ve done too much until you have. Or you think that you did Ok one day, and then find out the next day that you had done too much, because your symptoms are worse that day. Frustrating. I just kept trying, though. I worked and rested on and off through the day. Eventually it somehow just worked itself out.

      2. At some point, I decided to essentially put on blinders and focus solely on recovering, and specifically focusing on signs of progress each day or week. The way I saw it, there were two options. One – go down a road that led to this dark pit filled with quicksand that would pull me in and eat me alive, eventually. Or take road two – fight it with everything I had, envision a day when it would be behind me, and get through it. I chose option two. I also thought that any time I spent thinking of the down side of concussion took precious energy I needed to get through it. Fatigue is such a factor in concussion. Hours I was able to work was limited. I felt like I had to make every minute count, so didn’t want to feel I was wasting any energy that may have instead be used to help get me through it. If that makes sense. I don’t know. One other thing is I’m very stubborn, and I didn’t want the concussion to win. To take over my life completely. It impacted it significantly, but in the end, I won. But it was a battle, let me tell you.

      I’m not saying I didn’t have bad days. I did. I’m only human, and it’s a bad situation. But I wouldn’t allow such thoughts past an individual day. And it was rare. Instead of “woe is my; why is this happening” I thought “why is this happening to me – what am I supposed to do?” At some point I thought, well, I’m a writer, I can make websites, perhaps I’m supposed to write about it and try to explain it to people. (Nothing was really known just a few short years ago. There sure wasn’t any attention paid to this. Now, it’s everywhere. That’s great.) I did make a vow at one point in my recovery to set up a blog and such, and here it is! So this is a direct result of my journey in fighting my concussion. There are actually some very positive things that happened in my life as a result of what I did during my recovery. So, strange as it may sound, my concussion had both a negative and positive effect on my life. I feel my life is much richer than it was. Take a look at my Lessons Learned from a Concussion post for some of those thoughts.

      Here was my thinking mode/checklist if I thought about letting it get to me. Some days I had to rely on all of them. Once in a while, but very rarely, nothing would work that day. So I’d just ride it out and start anew the next day. Like I said, I’m only human. Anyway, here’s my list. 1) Stay off that first road; don’t want to go there and get stuck. 2) Know that I want to win. 3) Think about all my family and friends that I knew were rooting for me. I also didn’t want to let them down. I feel that people would expect me to fight it (that’s my nature). But also, it impacted my family and work and I needed to stay focused on recovery. 4) Think about how it could be worse. Let me tell you, it could have definitely been worse. When I started thinking about that, I would feel like a whining crybaby, embarrassed to even think I would be complaining. That works, let me tell you.

      So there it is. That’s how I got through it. Mainly, it was through sheer force of will. I wanted to win. And I did.

      Hang in there. Be tough! Think that it’s just temporary and fight it as best you can. :)

      Julie

  8. Oliver says

    Julie, thanks for your words of encouragement. It really makes a differences on bad days when someone listens and tells you things will get better.

    As for right now I am fighting my insomnia. I started antidepressant meds (remeron) last friday and was able to sleep great the first night, second night just so so and after that…the last 3 night were not good at all. Even when I am sleeping it feels as I am still awake under my cover only to notice I must have slept a bit when I wake up after another one of those super weird and bizarre dreams. I have never taken LSD but I am sure that’s how it must feel after experiencing these remeron induced “Alice in Wonderland” dreams.

    I do work full time at a bank in finance and it is a faced paced job most of the time. I have been late every day this week. I was simply unable to get up on time in the morning, Tonight I will not take anything anymore. The side effects of this drug are simply too overwhelming. I will look for something more natural and hopefully going to the gym again will help, too.

    I will keep you posted from time to time…

    Oliver

    PS: It’s been quite a while, but I used work in the Web business, too.

    • Kathy B. says

      Hi Julie, I am 7 months post concussion after being thrown from my horse head first into a wooden fence post, knocked out, 5 brain bleeds and a week later PCS. 6 months later a car accident that reinjured my brain and has aggravated my symptoms. Would like to say thank you for posting the stages of concussion. Nice to know I’m not alone in this and not the only one with Doctors that don’t know enough! For Oliver or others that have sleep/insomnia issues I just wanted to mention that a while back I had the same thing. Searched the web and came across an article on a study that stated that a large percentage of people with TBI their brains stop producing melatonin. This is what tells your brain to shut down at bedtime. Istarted taking it that night and it has been a huge help to me! I hadn’t slept very well in 2 months and that night I slept like a baby! Just thought this might help.

      • says

        Hi Kathy -

        Wow! What an experience; two bad accidents so close together. You’re definitely not alone in your recovery process. It doesn’t always clear up in a few weeks, does it? And I think the longer it goes, the harder it gets, awareness-wise. I hadn’t heard about melatonin before; thanks for sharing that. It might help someone else out there! One thing I did that helped with resting was to just do so in a recliner. It wasn’t always easy laying flat, but being in a recliner at an angle seemed more comfortable. You know, you get to lean back some so you’re not sitting straight up, but you’re able to rest without having to lay down all the time. Kind of a midway point. Maybe that would help someone, too, I don’t know. Keep it up, and thanks for the info!

  9. Julie-RN says

    Julie,
    I feel very fortunate to have found this blog. I am a 42 year old pediatric bedside nurse. I have been relatively healthy all my life but on October 2012, the 11th to be exact.(10-11-12) I took a tumble down my basement stairs and suffered a gash to the back of my head along with symptoms of a concussion (mild headache, fogginess, dizziness and lethargy). I work 12 hour shifts 3 days a week. This has been a blessing and a curse. I took 2 work days off initially because of the fogginess and dizziness and anxiety over the fear of making a medical error. Each day prior to 2 days ago I was getting better, feeling confident at work again and rarely feeling off kilter except when moving in bed when I was laying down or getting up from a laying position and I had no longer a headache. They say rest is the best medicine and I feel I had a good job at not pushing it too much. Previously, 2 weeks ago, I had tried to get back to exercizing and my body told me straight up…IT AIN’T GOING TO HAPPEN TODAY..so I held off until this last sunday because I was feeing so much better, although not 100%..maybe 90%. It was not a strenuous workout, some bench presses, abdominal, thigh, tricep work. Of course, I found I could not press nearly as much or as many reps as before but I expected I lost some muscle strength due to lack of working out. That is all it took to set me back. All my symptoms have returned. I’m discouraged, feeling lazy and worried I have lost all the ground I had made in the healing process. Does this sound familiar. So may of your followers sound like active individuals. I was hoping someone else could share their experience regarding exercise etc.
    I have not shared my fears or experience wholey with anyone because it feels like a burden and I don’t want anyone judging me like I hear some others have been judged. However, it feels safe sharing on here…maybe because we are all strangers going through similar experiences.
    Thank you. Julie S.

    • says

      Hi Julie,

      I hope your concussion is doing better! I can certainly relate to the experience you’ve had with exercise. At one point in my recovery, I went to the UB Concussion Clinic. They developed an exercise program for me. That helped me. I think I need to write a post about that.

      What’s really hard with exercise, for me anyway, was that you don’t know when you’ve done too much until later on. It might be later that day, or the next day, or who knows? (You might want to look at my Swimming post; it has comments about that as well.) And it is frustrating to have a good day, do more, and then have everything come back. Grrr…

      I’m glad you feel comfortable here. :) I hope you’re able to exercise more! I know how hard it is to not be able to do that…

      Keep at it!

      • Lance says

        Wow am I glad that I read this post about PCS and exercise! I WAS an avid weightlifter before my accident on 010213. I tried in the next few months that followed to do Julie-RN did…I tried to get back into my regimen of calisthenics-weightlifting-cardio on a reduced basis. What a mistake. I’ll never forget the unreal eerie experience I had in the parking lot of the gym after I was done…like being on some sort of methamphetamine without touching any at all. It was frightening. Fortunately I was able to drive myself home. Subsequent attempts at even more reduced regimens were followed by more setbacks, though not as severe. Now I have basically given up most of my former exercises but still focus on cardio everyday…and I have to watch that I don’t overdo that either. I can’t tell you how frustrating and discouraging this has been for me.
        I agree Julie something needs to be said more on exercise and PCS. I haven’t been able to find anything on the web about this topic at all. Thanks so much for all your efforts on this site and for letting me know that I am not alone in this ordeal. Hang in there Julie-RN!

  10. maggie says

    Hi, my friend suffered a concussion they are calling it a level 4.shes uninsured so was treated at a hospital and sent home overnight :/ Shes seems to get better then has all these negative symptoms its only been 3 days. Its difficult to read that no one will truly be able to help her.

    • says

      Hi Maggie,

      I’m sorry to hear that your friend has a concussion. Try not to worry too much. In the first days, it’s important to rest; I’m seeing that mentioned more and more. Expect that symptoms will change some day to day. What’s hard about a concussion, too, is not knowing when you’ve done too much. Symptoms have a way of sneaking up on you. You might want to take a look at the CDC Concussion pages. They’ve been adding more information about it that might be helpful. Try not to worry!

      - Julie

  11. maggie says

    Thank you Julie
    Its just hard to see this happening and wait im sorri, because im sure nothing is harder than living it. Today a lot of people visited her maybe it was too much for one day. She was vomitting and her sister called me if thats normal. And I wish I had answers all I can do now is burry myself in the text and try to become as knowledgeable as possible. We are seeking medical attention as well but im quickky learning this is not all in the hands of Drs but in time and our faith in God. Im grateful for sites such as this one.
    Thank you from the bottom of my heart.

    • says

      Maggie, here’s a link to info on the CDC site: http://www.cdc.gov/concussion/signs_symptoms.html.

      In the first few days, symptoms can change. If they’re worsening now, in the first few days, you might want to have some doctors look into it more.

      Lots of visitors may have been a bit difficult. You really need to rest. Light and noise can really bother you, so if there are lots of people, it could be overload. There were lots of times when I just needed to go to a room with absolutely no noise or light. Might seem odd, but concussions are different than anything else.

  12. connie maerz says

    Fighting as hard as I can these days. August 18th 2012. Took a fall with a horse hit my head and then the horse fell on me. Took three days before I realized I should see a doctor. Since then which is 4 months ago tomorrow i have been having headaches. earaches, neck hurts, nausau, poor appitite (lost 15 lbs so far) Doing acupuncture, seeing ENT for ears and lump under my jaw. Had several CT scans and MRI’s and as usual all normal. My headaches are pretty much gone, just a lot of facial and ear pain at this point. Feels like the pain is moving downward on my head. I am only working 5 hrs per day since I do not have the energy or capacity to work full time yet. I just hate the fact that i cannot predict how i will feel when I wake up in the morning. I cannot plan anything and my weekends are pretty much down time for me. I sleep and try to do some NORMAL things like grocery shopping or laundry, but it is very difficult. I was hoping to be one of the lucky people that things will get better by that invisible 6 month mark. Not sure I will make it though. It is good to hear that others have had to deal with similar issues and have come out on top. I am hoping I will reach my goal of being symptom free one day.

    • says

      Hi Connie,

      Yikes! What an accident! I can’t even imagine that happening. You sure describe all the types of issues and symptoms one has to deal with when you have a concussion. I don’t think that people realize yet just how much it affects you. So many aspects to it. You know, if you break your arm, that’s it. Perhaps only your arm is affected. With your head, seems like many items are affected. I suppose we shouldn’t be surprised, since your brain runs everything. That’s what I think, anyway. In any case, it sure is frustrating. Day after day after day.

      I’m sorry to hear that you’re having to deal with all that. It’s so hard. All you want to know is what’s happening in my head, how can I fix it, and how soon can I get my life back? I don’t know what to say, other than keep thinking it’ll get better. Focus on all the successes each day, no matter how small. Think about that, not the setbacks.

      Keep at it! I’ll send you vibes! :)

      - Julie

  13. connie maerz says

    Hi Julie
    Well today the pain across my cheek bone is gone, but it has now moved to the temple on my left side. I am starting to see a neuro muscular therapist to help with my neck pain issues. Seems like a lot of my face and ear pain might be caused by my neck muscles. Have been in physical thereapy for a while now, but they just dont work the front neck muscles the way they do the back ones. Also like I said, the acupuncture seems to have helped with the headaches. Still trying to be pain free. The face and ear pain is something you dont read or hear about very much.
    Connie

    • says

      Hi Connie!

      Glad to hear that some of your pain is gone. Wish it was all behind you at this point! I haven’t heard much about the face and ear pain either. All I can think of, with regard to anything ear-related, is vestibular issues. There’s a website for a vestibular organization (I forget the name of it); symptoms are actually similar to those of concussion. I do have a link to their Facebook page on my Facebook page. Maybe they know something; I don’t know. Also, the online PCS forum might have some info. There’s a link to that in my Web Resources post. Perhaps those are places to start research on. Who knows? I hope this all continues to get better for you!

  14. Brittany says

    Julie! Thank you so very much for post this!! It is a God sent! I feel, for the first, someone actually understands what’s going on. And to hear how positive your thinking has remained even after 5 years has helped more than anything. I’d like to share my story with you and other readers…

    I am 16 and have suffered from PCS for 15 months now. I had an accident well playing volleyball that hadn’t appear to be a cause of a concussion but has shown to be one. I continued to play with a busted up lip for the next week but when I had started to become noticeably unable to do normal things I went into the clinic. I returned to practice with a doctors note deeming unable to practice for 3 days. I was yelled at by the coaching staff and told, quote “do you realize how bad this makes us look? Like we don’t care about our girls!” So when my follow up came I lied … Said I was fine. That coach later went on to yell my mom in the main hallway for a high school with less than 200 students 7-12 that I was “mentally unstable” and “withdrawing”. I’m highly active in my school and community. BPA, FFA, FCCLA, speech, drama, band, choir, knowledge bowl, 4H, youth group, basketball, cheerleading/volleyball, track&field, just to name a few. I also work at the local one cafe in town and in a restaurant down the road. None of that ever stopped with my concussion, I was never given a break everyone thought and still thinks it hasn’t happened to me, but that’s just because I put on a good act. I got yelled at by the same coaches from the court to the locker room that “I just needed to let it go” I cried for 8 hours straight that night … To this day I still deal with The headaches so bad that you feel it in your eyes, neck, teeth, and hair, they make you nauseous, dizzy, irritable, sensitive to lights and sounds. You can’t concentrate and have lack of memory and appetite. You want to sleep all the time but have troubles doing so. Like most of you my CT scan came back with nothing. there are the good days and bad days, I’m very grateful for the good but it gets hard …

    Unlike most of you I was and am still able to do simple tasks as run. I’m so very grateful for that, it doesn’t go with some difficulty but I can. I don’t have any sort of a support team, but this has help tremendously! I was planning on writing an essay on PCS for FCCLA and speech, letting people know about it and concussion, however then one of the coach that had caused a large portion of my problems became my FCCLA advisor… But I still want to. Maybe not for FCCLA but for speech. May I mention your link, stages, and blog in it? It has been so helpful! It now is apart of my story, my road to my own recovery..
    Thank you, you have started the process of taking back my life that was so suddenly taken from me.

    • says

      Hi Brittany!

      You know, way back in the midst of my recovery, I recall sitting in a chair trying to get through that day’s head-fullness down time. I thought about how difficult it was to deal with everything: the concussion, the doctors, those that just didn’t believe it and made it more difficult. And I thought, what would it be like for a teen to have to deal with it? With all the disbelief? That was a major driving force in setting up this site and everything: to help teens in such a situation. To try and raise awareness and help people in the process. So I’m very glad that you found this site and that it’s helpful to you. I definitely know what you’re talking about. :)

      No one should be yelling at you, I think. People don’t understand concussions very well yet. You can only really understand it if you have one, I think. It’s so hard, with all the different symptoms, and how they vary each day and how nothing is predictable. It’s the most frustrating thing ever to have to experience. I think that people just don’t know enough yet. There is more awareness, but more is needed. So yes, feel free to mention this site and post. I have to say that the stages are based on my own experience, but those were definite stages in my recovery. And I’d say that it seems like you’re experiencing the same kind of insults that I’m talking about what I call the Insult to Injury phase. Others have experienced that sort of thing as well so I don’t think that’s unusual. Take heart in that. It just means that more awareness is needed, so I need to work harder!

      Because you’re 16, I’d appreciate it if you’d let your mom know about this and to perhaps send me a note via my Contact page. There has been a lot happening this past year, so I’m more hopeful. Perhaps there’s something I can share; I don’t know.

      One thing I’d also like to do is give you one of my certificates. In working on all this, I thought “everyone going through this deserves a medal” because noone really knows how difficult it is (unless you have one!). Well, I can’t pass out medals to people, so I made a certificate. Take a look at my “Got a Concussion – You Have to be Tough” post. That’s where the certificate is. Print one out if you’d like and put me down as the one giving it to you. You definitely deserve one! Fifteen months is a long time. Hang in there! Before I go here, there’s one thing I want you to always keep in mind:

      I believe you. I know.

      Keep me posted, Ok?

      - Julie

  15. Mom of Lauren says

    Hi. I had this blog saved as a favorite and was just going through my favorites. I appreciate this blog and the comments. My 13-year-old daughter got a concussion May 2012. It has been a long, difficult process. She started doing better in October and I thought that she was finally getting better. She seems to be having a bit of a set-back now, but I am hoping that this too will also pass soon. She is also an active, outgoing girl. It has been hard for me to know where to draw the line with what she can/cannot do. Her doctor did say how important it is for her to have “normal” time with her friends and to continue to have social outlets.
    One thing I did want to comment about is how much Melatonin has helped her sleep. Her neurologist told her to take that (after our regular doctor had us try about every sleeping pill imagineable-with no success). She only takes 2.5 milligrams and it has worked wonderfully without any side effects. (She weights around 125). I gave them to her regularly for the first few weeks. Now, I will ask her if she needs one if she feels like she won’t be able to sleep. Most of the time she doesn’t need one. Overall, her being able to sleep at night was a huge blessing.
    Thanks for your positive and encouraging blog. I appreciate having the information and insight!

  16. planaria says

    Thank you to everyone………..What a total delight!!!!! I’m not crazy after all! I’m normal……..YAY!!!!! On August 14, 2012 I missed a step on my stairs, flew into the wall, hit my forehead on the wall, knocked myself unconscious and fell down the next staircase of nine stairs on my back, head first. My husband found me at the bottom in a pool of blood. Went to the emergency room because I knew I had broken my collar bone. The CT scan was perfect, they sent me home to mend…..never said a word about a possible concussion. Two weeks later my husband dragged me to the doc because I was not my perky, energetic self. The doc ordered a CT scan immediately and within an hour admitted me into the hospital with a possible subdural hematoma. Fortunately, after 2 days, they decided not to drill my skull and I went home. I think my neurosurgeon is good in that he told me no one knows anything, really, about concussions and I had to be patient………. it could take a year. The bad headaches came after two weeks, and ONE acupuncture treatment and they were gone. I still do acupuncture once a week and physical therapy once a week. The frustration that everyone has is mine….there is no objective pattern. In December I was getting so much better and now, in the 5th month, I feel worse than ever before: foggy, tired, depressed, and on a rocking boat that sometimes lurches. Thanks for the tip on the melatonin; thanks, Julie, for this incredible blog which helps us feel normal and sane.

    • says

      No, you’re not crazy. You just have a concussion. (I’m kidding; I know it’s serious.) It’s not fun, that’s for sure.

      Good heavens! What an accident. I hope you’re doing better some at this point. I totally understand your frustration with it all, including the lack of a pattern. That is so weird; it seems like there should be something, but it’s not always the case, is it?

      You’re welcome for the blog. When I started it, I just wanted to help just one person deal with it. With all of it. People have no idea what it’s like. You have to experience it yourself to truly understand. I appreciate everyone’s willingness to help each other here and on my social accounts. I have the best community ever, I think!

      Hang in there —
      Julie

      • planaria says

        Hi Julie, I’m checking back after almost a year……..It took me 9 months to feel normal again (so I feel really lucky) yet some days I feel relapsed, but I’m mostly fine…….This is my newest question. I have been and still have problems swallowing pills…….little pills…..No problem with food or water……It’s just when I put a little pill on my tongue my brain and throat say NO WAY!!! The neurosurgeon says I am not crazy and he has seen this with concussion and whip lash patients. He sent me to a speech pathologist who had no clue and couldn’t help at all…..Have you heard of this side effect? and are there any suggestions? No, I absolutely cannot crush my vitamins, etc. they don’t go down with applesauce and I am so frustrated….Just wondering if anyone else has had this problem. My sense of taste and smell were quite off for the 9 months so there must be a connection to some nerve that runs from the throat to the brain. Again thank you for the blog….you and your sharers saved my sanity, for sure.

  17. Fergus Sharp says

    Hi, Julie,

    I am currently a college student at ASU Tempe and the Honors College here. In high school, I was a competitive soccer player as well, playing 6 days a week and complementing that with daily fitness and weight lifting. I had a few injuries in high school that stopped me playing collegiate soccer, but once I got to college I continued on playing soccer competitively with the hope of one day making something out of it, such as a career coaching, analyzing, or even playing.

    Anyway, last February, I got concussed in a game, and things since have changed. I have had to withdraw from about 25 credits, have been fired from work, had a bad break up with a girlfriend I had been with for over a year, and have had similar accusations to the ones you saw thrown at me. The worst is where you get told by teachers and bosses that your injury is no excuse for accommodations and then they proceed to push you until you have no choice to give up their classes or your job. Equally bad is where teammates don’t understand why you can’t play with them anymore and to hear them insist that you just need to get over it.

    What people don’t seem to get is that working or exercising causes me headaches that can last for weeks. With those headaches comes bloodshot eyes, inability to even think straight, and what doctors inaccurately characterize as depression type symptoms. I’ve about had enough of doctors and all the meaningless drugs they prescribe.

    Despite all the negative things, I reached a point about three weeks ago where I decided that I would just push through everything, despite everyone around me questioning my resolve and even suggesting that I should give up. Seeing your article has only inspired me more. I have the attitude that I WILL beat PCS, and I’m glad to see someone who actually understands what is like. Thank you for what you are doing and what you have said. It makes a difference.

    – Fergus Sharp

    • says

      Hey Fergus -

      Love that attitude! Heck yea, go for it. Beat this thing. Clearly you have a lot of drive and competitive nature. You’re just in a situation where your competitor is this frustrating, annoying thing that people don’t know much about. I’d say you’ve definitely entered the Hunker Down phase. When you toss all the extraneous negativity and disbelief aside and focus just on recovery from the concussion. For me, a lot of stress went away when I did that. I decided that I was going to win, pure and simple. Not the concussion. So dig deep into that competitive nature of yours and win this thing. It may take a while, but I bet you can do it. Might be a lonnnng season.

      After I was through it all, I also realized that, while it took forever and a day and time seemed to slow to a crawl, it was really just a temporary blip in my overall lifespan. So try and look at it that way, too. Sometimes I think I got through it through sheer will. Sorry to hear about everything that’s happened as a result of your concussion. People really have no idea what it’s like. I had to cut way back on work and exercise and everything, basically. So I know what’s that like. These things can really disrupt a person’s life, no doubt.

      Hang in there! Focus on the positive changes that occur, no matter how tiny or small they may seem. Anything is progress, a movement in the right direction. Always think that better days are ahead. You’ll get there -

      • Fergus Sharp says

        Hi, Julie,

        Thanks again for the positive reinforcement here. It is really encouraging to hear from somebody who has succeeded in the face of similar issues and therefore truly understands my predicament!

        I hope that you can continue to have a great influence in the field of concussion awareness and also in helping out people like us. Thank you for everything that you are doing.

        Fergus

        • Fergus Sharp says

          Hi Julie,

          I don’t know if you have anything about this here on your website, but I recently had my visual ocular reflex (VOR) tested and found out that it is one of the major issues with PCS patients. I now have exercises that I’m doing that are improving my cognitive ability, dizziness, etc. Still have some headaches and can’t exercise still, but I can think much more normally and I can function in every way except athletically. I would really recommend to any other PCS or TBI patient to get their VOR tested and do physical therapy related to it. It truly, truly helps.

          Other than that, hope that everything is well for you! Thank you again for everything that you are continuing to do to assist those with PCS or other TBIs!

          • Fergus Sharp says

            Oh! And also, small dosages of melatonin supplements, 10 mg or under, can really help bring PCS patients’ sleeping schedules back to normal, and this really assists in recovery and symptom suppression.

            I hope that I didn’t miss any of these things on your website, I’ve only had a chance to look at some of what you have in the archives.

            Fergus

  18. says

    Hi Julie
    My name is Kurtis and I’ve suffered with this for five years now. In June of 2008 I was involved in a severe car accident when a young woman ran a red light hitting my car on the passenger front corner at about 60 mph. The crash spun my car completely around,(possibly twice.Not sure) although I was physically alright i had no idea what was in store the next day. I went to work as usual when all hell broke loose. I was rushed to hospital because I couldn’t move my arms,couldn’t talk and was extremely emotional. I thought I was dying. I was sent home after I was told I had whiplash and take some time off. Two weeks before my accident I leased a building for my business so this was the worst possible time for this to happen. I forced myself to return three weeks later out of desperation. On top of it all my job requires me to look into a bright light, kind of tough with a concussion as you know. It’s been hell. Recently I have a new symptom that is worrying me so I was wondering if you or any of your readers have experienced this. I get what I call flash headaches. It travels across the top of my head. Usually it lasts about twenty seconds. I’m a little bit worried. I can’t find anything on the Internet remotely close. Thanks so much

    • says

      Hi Kurtis -

      Yikes! Sounds like a terrible accident. I’m sorry to hear about that. I bet that bright light is tough on you. I haven’t heard anything about those headaches you describe. Perhaps someone will that reads this. I’ll keep an eye out for it, now that I know of it.

      There’s also quite a bit of work going on these days. It seems like new information is coming out regularly. Perhaps something like that will come up in the news. If you’d like, you might want to consider following my Twitter paper: the #Concussion Daily. It captures the day’s news regarding concussion. You can either see it in Twitter or subscribe to it so it comes in email. Here’s a link: http://paper.li/fightpcs/1305489753.

      I’ll keep this in mind!

  19. Brett says

    Wow, I can’t tell you how much I agree with these steps, having never read them until now. I was a division I college football player and sustained my last concussion around 6 months ago, and I am still battling symptoms everyday. I would say that I am in the hunker down stage, because I have tried many things (from amitryptyline, fish oil, etc.) but ultimately I’m sick of doctor visits and I think recovery will come from grinding it out on my own. I just keep telling myself it will get better. Great post. Did you ever find any dietary or other tips that you think contributed to your neural function recovery?

    • says

      Hi Brett!

      Thanks for the note. Hunker down it is! I think you’ll find that things might actually get a little easier. For me, a lot of stress went away when I put everything else aside and just focused on what I was doing. I don’t really have any dietary tips. Another food-related item I did hear about or read about is antioxidants for the brain. Berries are good for that. We had a smoothie shop nearby; they had the best blueberry smoothies. Yum! I loved those things. I have berries & yogurt when I can, or will make some smoothies myself. I don’t know if they help my brain at all, but if not, I’m sure they help in other ways! All this smoothie talk… I’ve been using this frozen Yoplait smoothie mix. It’s a mix of berries & frozen yogurt. You add some milk, blend it, & voila! A smoothie in seconds. Just last week I bought a big freezer bag of organic antioxidant fruits so I can try to make smoothies with that. Looks good – has strawberries, blueberries, raspberries, cherries, & pomegranate. Should be tasty, I bet. I think there’s a smoothie recipe right on the package. I really don’t know if they’ll help my brain, but I’m sure they support overall health, which is undoubtedly a good thing.

      Jeepers – now I’m going to have to make a smoothie tonight! I’m glad you asked this question. :)

      Glad to hear you’re staying positive. Just keep your eye on the prize: recovery. I don’t know, think of your recovery as another football season. It’s a lot of work to get through a season, is it not? Week in, week out. You have to be focused (I imagine), you have to dig deep sometimes, and the end game is always in view. But it’s not just handed to you, is it? Hunker down & get through this. Think playoffs, championship: your recovery. You can do it! Always believe that better days are ahead, because I bet they are…

    • says

      Oh – here’s another thought, Brett. I also have a breadmaker and use it to make my own bread sometimes. I make a wheat loaf (not 100% wheat) and toss in some wheat germ and wheat bran. The wheat germ, it turns out, has omega-3 and antioxidants. Plus there aren’t any preservatives in the bread. Very easy to make bread with a breadmaker. About 10-15 minutes to mix it, and 3.5 hours later you have a loaf of fresh bread. Yum -

  20. Michael says

    Julie, I just discovered your site and think it will help my doctor and lawyer understand what I am going through. I was in an auto accident 11/4/2011 that turned my life upside-down. I had no visible injuries except some burning from the air bag but have been dealing with headaches since. I had a constant headache that lasted for 9 months, almost to the day, that interfered with every aspect of my life. I was training to join the Police as a volunteer officer and the physical test was the next morning. Needless to say, I have yet to be able to take the test, let alone train for it. My headache the first nine months would vary from bad to extreme and I could find no pattern that made it worse. I lost my relationship of seven years because I could do nothing but work and sleep. I had no patience or tolerance for much of anything [... jn edit]. I have spent so much time and money seeking someone to help me. I tried chiropratic, anti-depressants, pain medication, acupuncture, massage therapy, and found no relief. The first week of August, nine months later, the headaches stopped. I had two weeks pain free. I thought it was over.

    Then the fun started again, for the past eight months, I now get a headache every day. It can slowly build or come on with no warning. It usually lasts about 4-5 hours but can go for days sometimes. I also have the privilege of getting random “flash” headaches, these last about 5-20 seconds and can bring me to my knees. I could walk up a flight of stairs and have to rest to recover one day but not the next. As I write this I have had one for more than two days. I forget how life was without the pain. I am hesitant to promote at work because of the unknown. Nothing is the same in my world. And to rub salt in the wound, getting my attorney and the insurance company responsible to understand what is happening is next to impossible. I wonder every day when I will feel “normal” again.

    Thank you for this posting. It gives me hope.

    • says

      Hi Michael!

      Thanks for stopping by. I hope this helps in explaining what it’s like to deal with a concussion. I’m sorry to hear that your life has been disrupted so much. It’s frustrating, to say the least, isn’t it? Those headaches sound horrific. This is one of those times I wish a had a magic wand that I could just wave around and take everyone’s headaches away. Those are the worst. I’ve been hearing more of the flash headaches you describe. By that, I mean that you’re another person that has mentioned it. I don’t have any information to share at this point, but I’ll keep an eye out for that. It sounds awful.

      With regard to sleeping, I realized at some point that I spent half my life sleeping for a couple of years. It’s hard to imagine having missed out on so much. Yet, I did. There’s nothing I can do about it now – nor could I at the time. I had no choice, really. My head would fill up every day and the only thing to remedy it was rest or sleeping for a few hours. Every day. For several years. So I understand how difficult that is.

      The insurance company will likely be difficult to deal with. My experience was a nightmare. At the end, I requested all my records and was shocked to see what they had written about me. I wish I had requested my records sooner. I didn’t realize that you could request them, though.

      I’ll keep working on headache info, and will definitely watch for any info on flash headaches.

      Stay strong! Hang in there.

  21. Kent Biery says

    Thanks for the information you’ve posted about PCS. I’m actually inquiring on behalf of my wife (42) who had a concussion several years ago in college bridge jumping that took two plus years to heal. She re-injured herself about two months ago snow boarding, landing on her head off of a jump from about 8 feet. She was recovering fairly well, but then was in an arcade of sorts with our youngest son (noise and blinking lights). She’s had a real set back and can’t even browse the web to check out information, so I’m trying to glean some helpful material to share with her. She went to our family practice doc after the snow board injury, but isn’t convinced that another visit would be fruitful. Any wisdom for her (me)? Thanks!

    • says

      Hi Kent,

      I hope your wife is doing better! I’m sorry to hear about her situation. Since you mentioned being in a noisy arcade, perhaps my posts on noise would be of interest to you. Noise is a known health issue that can cause other problems. Personally, I think it causes more concussion symptoms instead of just being considered a secondary symptom. (You see it listed in places, but I’ve yet to see specific information on it except on my site. I’m trying to get awareness of it.) Noise has been studied for decades on a global scale. I did a lot of research and wrote up some posts about it. There are two. So take a look at those. There’s a lot of information and links in them, which may be helpful in contacting other medical folks if you end up doing so.

      There is more information coming out all the time, so stay on top of that. You could subscribe to my Twitter paper: the #Concussion Daily. There’s a link on my home page, at least. That gathers info shared in the news each day. As far as physicians go, I guess you guys could keep looking. There are more and more concussion clinics popping up everywhere and some places have been holding public seminars. Maybe there’s something coming up in your area. I have no idea. Other specialties include neurologists, neuropsychologists, speech therapists (for cognitive rehab, often after a full neuropsych test), sleep medicine folks, vestibular physical therapists. I think that endocrinologists and audiologists should be added to the list, but that’s me. I need to write up some posts about pituitary issues. Actually – check my Females, Migraines, and Hormones post for info about pituitary items. There’s info there; I just haven’t gotten to it in more detail.

      That’s all I can think of at the moment. I’m not a doctor, but try to point people to info. Hope it helps!

    • Mary F says

      My daughter suffered a concussion in June 2012. Her Doctor cleared her in January 2013 however her physical therapist did not. So please understand, her doctor said she was healing sufficiently for him to discharge her however she still had a long way to go. She suffered from Vertigo weekly, her physical therapist was a God send. I recommend you find a vestibular physical therapist. We are approaching the one year anniversary of the injury and are now about 95% better. We would not be in this position without her vestibular specialist.

  22. Brenda jones says

    I am at 6 weeks and employer and insurance is turning on me. I feel like giving up some days because no one understands, but reading this really helped. Thanks

  23. Steven Hicks says

    Hi Julie,
    I came across this article and really enjoyed it. I am a certified/licensed Athletic Trainer. I started a Sports Related Post-Concussion Support Group for Athletes and Their Families in Nov. 2010. I am starting my 4th year with the support group. I have a page on Facebook for the group called Twin Tiers Sports Post-Concussion Support Group. I wanted to let you know that I will be posting this article on the my page and sending it to my other members through email. I currently have 130 members in my support group, through members that have attended meeting, presenters (I have one for each meeting talking about their history with concussions), email, and the facebook page. I think my members will really appreciate this article. I am really glad you are doing better and I very proud of you for posting this. That was very courageous. Just reading all of the comments shows how many people you have affected with this article.
    Thank you very much,

    Steve

    • says

      Hi Steve,

      Thanks for dropping by my site and for your kind words. I think that’s wonderful that you set up that group. I’ve learned much more about Athletic Trainers through my advocacy work. I learned that as a group, they’re very helpful and committed to helping students in particular when it comes to concussion.

      I really appreciate your telling others about my site. My goal has always been to help others. When I was going through my own recovery, there was no awareness. It was nothing like today. I could not find any information, really. I got through it though, and had made a vow to myself somewhere along the way that I would work on advocacy to get information to people and help as I could. I’m glad this site seems to be doing just that.

      Thanks for all your work!
      Julie

  24. bob innes says

    Thanks for that, Feeling very low: sympathy of doc and family running out after 2 months. No visible injury but im in pain, dizzy, cant concentrate misplace words…breathless speaking. Cant exercise- lost all conditioning. There had been some improvement and i could see a light at the end of the tunnel when i needed a tooth extraction; i warned the dentist about my concussion – absolute agony of pulling and pushing with lpliars; jaw feels dislocated but worst of all….within 48hrs i was back to square one with concussion! Left hand head pain where injury and extraction occured has put me back on bedrest.

    But ill keep on; no surrender. Thanks for the blog…and id advise anyone with PCS…dont have an extraction; i had no choice due to poisening .

    • says

      Hi Bob,

      Thanks for sharing your story and tip. Much appreciated! Sheesh. What an experience with the dentist. Yeow! Sorry it set you back like it did. Just keep hanging in there like you’re doing!

  25. Suzanne Saunders says

    I came across your site searching for answers or rather hope. My son received his 4th concussion in Aug. 2012 with high school football. He had his normal horrible headaches but hid his other symptoms from us for a couple of months. He then fessed up that he was dealing with memory loss, dizziness, etc. In early Dec. 2012 he started blacking out and was obviously taken out of school 2nd semester of his senior year. We started working with the VCU Concussion Clinic in Richmond, VA. Sadly, other than knowledge, there is so little you can do except rest and pure boredom. Slowly, his headaches began to subside and his dizziness and balance began to improve. This was after months of PT, OT and vision therapy. He continues to deal with memory loss, both long-term and short-term. With much uncertainty, he was to leave for his freshmen year in college next week, Aug. 30. I have been questioning this decision as I was really worried about him being up at school by himself. Yesterday, Aug. 20, 2013, he sat me down with his girlfriend and me and told me he couldn’t go away, due to the depression that has set in since the concussion. This was something that I was totally unaware of. He feels so angry at times he wants to hurt himself or someone else, or just gets deeply depressed. This conversation was absolutely heart-wrenching to both of us, as he has lived for the day he could go away to school. He continues to struggle with memory loss, concentration, etc. We were told from the beginning that he would take 2 steps forward and 5 back, and that the recovery was slow and frustrating. Obviously, we are off to the doctor today to try to get him on medicine to balance out his emotions and pray this resolves quickly. This is a kid that his peers have the utmost respect for as he was a leader on his high school football team and a great motivator. I told him yesterday that his brain is still healing, but he can’t convince his brain that it is. He believes the brain is done healing and this is what he is left with for the rest of his life. Thank you, from the bottom of my heart, for a having a place for anyone having known someone dealing with a concussion, and giving us the hope that we sometimes don’t believe is there.

    • says

      Hi Suzanne,

      I’m so, so glad you left a comment here. Please, please, please tell your son to hang in there and keep fighting this. I remember some tough times in my recovery: my head was still filling up every day, I had to sleep or rest a lot every day, nobody knew how to fix it, and they kept telling me I was making it up or making it happen. As if anyone would do that! I finally gave up on doctors. (I think it’s better now. Hopefully, anyway.) There really was no knowledge or awareness of it. No news stories or big initiatives. Nothing. It was bleak. In any case, I remember thinking that there was nothing I could do. That it might never end. There was nothing out there to indicate to me that it would ever get better. But I decided to believe in something I couldn’t see. In something I wasn’t sure I’d ever see. It was a huge leap of faith. I decided to bet on myself, to really dig deep and somehow get through it. Sometimes I think I got through it by sheer force of will. I just never gave up. It was the most difficult time in my life, especially since it went on so long.

      So I think I know where your son is at. I understand that it can seem hopeless and that your life won’t change. I believe that it will change for him, but that it will take longer than he’d like. That’s just the way concussion is. If he doesn’t want to go away to college just yet, is there something he could do locally? Maybe go to a community college for a few classes and get started with some general requirements? Then transfer later on? That way he wouldn’t miss out completely. With concussion, I think you have to make adjustments. Please review my “Tips for Concussion Recovery” post for more info on that idea. It doesn’t have to be all or nothing with concussion. If you can get a piece of what you’re trying to do, then go with that and then it can build from there. That way, it doesn’t completely take over your life, or run your life.

      Your son, I think, is at a fork in the road. I remember mine well. For me, it was a clear decision to make. I finally realized that there were two paths. One would pull me down and eat me alive, essentially. The other was potentially a way out. I just had to believe and fight it. That’s the road I took.

      My recovery, difficult as it was, ended up being just a portion of my life. It was temporary. I’d like to think that your son’s situation is as well. Visualize an end. Focus on that. Focus on little day-to-day successes, no matter how tiny. Ride out the bad days, and get up the next day and start again. Believe in what you can’t see yet….

      Hang in there!

      Oops- I’m already updating this comment since posting it a few minutes ago. So for Suzanne and your son and everyone else: I forgot to mention my big support spreadsheet. There’s a link on every page on my site to the spreadsheet of support options available. So check it out. Find the one for your area and think about giving them a call. There’s also a 24-hour number to call that’s also for counseling if something might help outside of regular business hours. I know it can be rough, so I hope that anyone reading this will feel comfortable in reaching out if they feel it would help. Concussion recovery can be brutal. You don’t have to get through it alone. :)

      Oops again – second thing I forgot to mention. Go to my post about Being Tough and print out a certificate. I would love to give medals to people going through a recovery. Since I can’t do that, I made a certificate. It’s as close to a magic wand as I can get…

  26. Robin says

    I got my 2nd concussion almost a month ago at the camp I worked at for the summer. I have been dealing with some fierce symptoms including a lot of memory and concentration problems. I start school and work on Monday. Lucky me was diagnosed with a 3d concussion on this past Sunday. I am more discouraged than ever, I feel like I’m back at square 1. Any advice for a college kid whose scared to get back to school and feels like she’s at it alone?

    • says

      Hi Robin,

      Sorry to hear about your concussion! Those are some tough symptoms, for sure. During a recovery, there are bound to be some setbacks. Try not to let them get to you. I’m sure it’s hard to feel like you have to go back to the beginning. It’s such a hill to climb! In addition to you, I’ve been hearing from other college students as well. You’re definitely not alone! I’m going to write a post about some ideas, so look for that (I’m hoping to publish it later today). In the meantime, here are some quick thoughts I have:

      - Pace yourself and listen to what your body tells you. If you need to slow down, do so.
      - Check your schedule. Don’t overload classes on one day, if possible.
      - If you’re on a big campus, allow time to get from one building to another. If it’s a long walk, stop along the way for a few minutes so you don’t get as tired. Or rest a bit before heading off to the next place, if possible.
      - Avoid noisy places as much as possible. Decibel levels make a big difference! Noise interferes with concentration, causes headaches, increases fatigue – lots of things. Please review my two posts about noise. I think they’re very important. If there’s a quieter cafeteria, eat there. Or go at a time when it’s less busy, less noisy. Maybe avoid athletic events for a bit. They’re very noisy! You can download a free decibel level app and see if there’s a level that bothers you. Info is in my posts.
      - Sit in the front row (or in the first few rows) of classes. In one of my noise posts, there’s a video about noise by Julian Treasure. Partway in, he talks about how just sitting up front makes a big difference. You hear better and don’t have to concentrate as much just to hear what’s being said. Take a look at that.
      - Talk to your professors and let them know your situation. Perhaps they can save a seat up front for you, for instance. If they offer the same class at different times or days, maybe you could sit in on the same class, essentially, but on another day or hour. Just let them know. You might be totally wiped out one day and not be able to do much at all.
      - I’m guessing, but I would imagine that buildings have to have some area where a person could rest for a bit. It would be worth checking into. If you could rest in a quiet space between classes, for instance, it might help a lot. Or maybe your fatigue would kick in at a certain point and a quick rest would help. Check with the buildings, or the health folks. Actually, it might help to let the medical clinic know about your situation and if they have any advice or suggestions.
      - Don’t be afraid to ask for help! One of the hardest things for me was to have to ask for help. I’m very independent, so that was hard. But it was temporary.

      I’ve also included a link on my site to a big spreadsheet that has support resources for people. You can look up your area and find something there. The link is on every page, so take a look. You’re not alone, and the brain injury resources might be of help. I don’t know, but it’s a start.

      Hang in there!

      I’ll go write that post. Hope this helps!

  27. Sarah says

    I am almost 26 months post concussion. I thought I was in stage 4 this summer! Then work started up again (I’m a music teacher) and while in the midst of planning, I continued with the same level of physical activity that had become the norm during the summer. Last week (my first week back at lessons), I suffered from strong headaches, fatigue, and some nausea. I think the stress of scheduling and planning, which wasn’t a stressor for me at all before my concussion, was just too much for me this time. All along, mental strain has been my biggest weakness. It sends me back into PCS symptoms faster than anything else. Well, jogging seemed to do a pretty good job of it too.

    I will say that my journey through PCS has made me more health conscious. From the head down at least, I feel the best I’ve ever felt.

    Waiting patiently (?!) for stage 4!

    • says

      Hi Sarah,

      Two years and a couple of months in – that’s tough. Good job hangin’ in there!

      Offhand, I’d guess that the new activity starting up again was a contributing factor. That’s a lot to do and think about and figure out after having a break for a while. I hope it’s settled down a bit at this point! Also, I don’t know if the music room is a factor or anything. Have you reviewed my two noise posts? You might want to take a look at them. Jogging for me was something I had to avoid for a while. It felt like the top of my brain was hitting the inside of my skull. That wasn’t a pleasant experience, let me tell you. Thank heavens that doesn’t happen any more!!! Everyone’s concussion is different, of course, but maybe there’s another activity you can try. Spin bikes and walking were about all I could do for a while. Of course, you have to work with a doctor with regard to figuring out much exercise to do. I went to the University at Buffalo Concussion Clinic and they figured out a program for me. Which helped; I’m convinced of it.

      Glad to hear about your increased interest in being health conscious. I know what you mean! Concussions can change the way you look at everything in life, I think. There are definitely some positive aspects I found, or positive ways it changed my life.

      Anyhoo, keep at it! Great job getting through your recovery!

  28. Mike says

    Julie,

    I wanted to know how you are doing in stage 5? I experienced a head injury on my birthday in June. I got an MRI, and said it was not serious, but in early September I became sick, and had this fever that just would not go away. I lost about 20 bounds. Doctors thought I might be diabetic, and then I noticed I was getting headaches or painful sensations after waking up from my sleep. I was light-headed, and off balance at times. I have poor vision–astigmatism and far eye sight decreased. So, I just started to rest, and slept with my head up.

    After a few weeks, the pain dissipated. I gained back some strength. My vision is about 90%, but I just probably need to update my glasses. I still get lightheaded at times, and just feel off. Funny thing, it has been a dual threat pain. After losing the weight, an injury to my rotator cuff that I had a few years ago–amazingly has returned. Pain to pain, its just crazy, but your post has provided me some relief because I just needed to share. Thank you for sharing your struggles. I completely understand.

    Mike

  29. Chandrasekhar says

    Hello Julie,

    Thank you very much for such a nice explanation on concussion.

    Around 2 months back I had a hard blow to the head. Due to uncontrollable frustration I had banged my head with the helmet 4-5 times. This happened in the night, I was just fine that night and slept comfortably.

    The next morning when I woke up I had strange symptoms: headache, drowsiness, eye pain, scrolling sensation
    from left nose to left ear and slight pain in left ear at times.

    I thought it would go away with in 3 days or a week. But it became too worse and i had to take off from office for about five weeks. In the sixth week I was feeling better and came back to office. I can ride the bike but little discomfort is present.

    At present, after two months of incident I am having these symptoms : Mild Drowsiness, Slight eye pain, Problems with focusing at one point and mild facial pain at times.

    According to your stages I think I am in 4th stage and feeling confident after reading your blog.

    Please let me know what I should do to resolve my symptoms completely.

    Thanks
    Chandrasekhar.

    • says

      Hi Chandrasekhar,

      Thanks for the comment, and for stopping by the site. I wish I could tell you how to resolve your symptoms completely, but I’m not a doctor. All I could do was wait it out, mostly. I was slowly able to do things more. I used my walking stick (I wrote a post about that). I slept a lot (no choice with that, really). I just never gave up.

      I hope your concussion symptoms go away soon!

    • A.K. says

      Sleep is essential for one to recover completely. By five, if not eight months symptoms should ease up assuming this was your first injury otherwise it will take even longer. I say this not only from previous experience but also as an undergraduate student studying neuroscience. After four to five months you will notice a return to your previous self, any loss of memory from before the injury should only be temporary and tends to resolve after one has healed completely.

      • Chandrasekhar says

        Hello A.K,

        Thank you very much for the information.

        I did not visit this page for long time. That’s why the delay in reply.

        This is my first injury and I never had any head injury before this.

        I am about to finish 6 months after the injury and I could see good improvement for the past one and half month.

        At the moment I am having Eye pain, headache for half of the time when I am awake. In sleep, most of the time I am not having any discomfort and this is the best part I am enjoying at the moment.

        I am hoping to get back to my normal life soon, may be 1 or 2 months.

        Thanks,
        Chandrasekhar.

  30. says

    Hello All
    First let me say, sorry we’re all in the same boat, Thankful I found this site.

    I had a mld heart attact in June 2013. On my first day back to work in a brand new building which my company moved to due to a tornato destroying our building while I was off work. I ran into a glass wall, which was hit by 5 coworkers that same day The design of three glass wall leading out of the building gives the illusion that you are walking out the exit door. I hit this glass so hard it caused a gash under my eyebrow. I went to urgent care and was told I had a mild concussion, was stitched up given pain pills and a anti inflamintory injection. I was off of work for a week, Remember most of that dr visit, but do not remember what went of for about 3 days after the accident. I found I had dizziness and fuzzy brain fog head ache and am senstive to noise. I marked it to allergies and the heart attack. My family firends and co workers noticed I am getting forgetful and trouble with my speech. My defense was I am not getting alzheimers(my mother died from this horrific diease a few years ago)…..Two weeks ago I was driving home from work, I suddenly felt like like a piece of my skull was blowing out the side of my head, as quickly as it happend it went away…the following day it happend again…again i ignored it….My coworkers noticed that my thinking was slowing down, and my temper was getting extremly short. I had a couple of major melt down during this time which my famly said scared them. After the head thing things went down hill rather quickily…I was feeling so bad that it scared me. I was at work and suddenly I knew I was in some sort of trouble and I had to go to the ER. I thought i was having a stroke, at this time i was beginning to drool and had a hard time keep my balance. I was rushed to the ER was told I was presenting as having a stroke. After a couple of days in the hospital, all test came back normal and was told by three doctors including a Nerologist that I am suffering from post consussion syndrom. I was floored! Was advised this may be a one time event, or this could go on for a long time, thus the word syndrome. Was also told this could lead to Parkinsons, or sezuires. Has anyone been told by their Dr that this syndrome my hang around for a long time and that a consussion can lead to other nerolgical illness? thank you

  31. A.K. says

    Seizures are more common after concussive injuries then Parkinsons however note there is a correlation between increased vulnerability if the person has experienced prolonged loss of consciousness associated with TBI requiring hospitalization, a history of such injury and even alcohol consumption have been identified. When recovering from ANY head injury it is best to have a period of three to seven days of rest in a dark room without stimuli (No tv, radio etc) This will help to reduce symptoms. A second injury, even minor can and will cause second impact syndrome which makes concussion recovery and PCS like a calk walk by comparison. Additionally antidepressants like Citalopram speed up recovery as they increase growth factors such as BDNF and NGF that help the brain recover however such can make memory problems worse and such medications take at least four to six weeks to kick in.

    High doses of fish oil (5000 mg daily) and lecithin have also been shown to help as well as ginko biloba, niacin, curry, green tea, a high protein meal within the first two days after injury. Ginseng, St Johns Wort and supplements such as Piracetam have been used in European countries to aid in both neurological as well as psychological and psychiatric health from concussion recovery to Parkinsons, Alzheimers, anxiety, depression and schizophrenia in some cases. Even mild exercise has been shown to help speed up recovery so long as symptoms do not get worse however this should be put aside until at least two or three weeks after otherwise it can and will slow the healing and recovery processes.

    • Tang22 says

      Hello, great to read all this, very informative but sorry everyone is going through this.

      I was rear ended by 2 vehicles, one right after the other almost one year ago, suffered physical injuries but also a concussion, contusions to my head… had terrible problems, in PT, Vestibular therapy as I was falling to the side as I walked…the neurological problems were the metal fog, severe headaches etc…

      I felt quite a bit better after I’d say 6 months or so but have lingering issues, short term memory loss, someone can tell me the time and 2 mins later I’m asking again, forgot…someone can ask me my address, phone # and there’s absolutely nothing in my brain…my brain just doesn’t “feel right” very hard to explain.

      I’ve had a few episodes of staring, for a few mins someone will tell me I looked weird, the other day a dreadful feeling that my brain was not right came over me, sudden nausea, tunnel vision, laid on my side for a few mins then sat up and my arms and hands were shaking violently, they were like that for about 2 minutes, went to the ER and had a similar thing happen, the nurse asked mt to write my name on intake and I couldn’t hold the pen or write, started shaking and my head felt as though I couldn’t control it and it kept shaking backwards, completely lost it in the ER waiting room….omg…CT scan showed nothing. It scared the heck out of me.

      My general Dr is sending me to a neurologist, I hate all of this. :(

      I just want to be well again, one hundred percent. Thanks for listening and hope everyone feels better very soon!!

  32. Shawn Blount says

    Dear Julie,

    I believe that I have a delayed post concussion syndrome, caused from a severe concussion 12 years ago in which I was unconscious for an estimated 45 minutes. I have significant impairment in my vision, my memory, and my cognitive ability. I also have chronic fatigue. I developed occipital and trigeminal neuralgia this past year, which finally clued me in that all of my symptoms could be related to the old concussion. I think that what is going on is much like what ex-football players and boxers experience. I’m working with a phenomenal physical therapist now, and things in my spine seem to be moving in the right directions, but symptoms still wax and wane. Have you heard of others who have had similar stories and/or could you direct me to any resources that might help me?

    Thanks so much,
    Shawnie B.

  33. Lisa says

    Finally, a place I can go and feel like a normal person. I am 17 months into my concussion after I was struck by the boom of our sailboat (now I know how it got its name – ha ha). I have gone from barely being able to walk and overwhelmed when talking which thankfully passed within months and feel like I’ve come a long way in this time but still so limited in my daily functioning.
    I have still not been able to return to work and on top of all my symptoms, I cannot be on a computer for more than minutes in a day as it makes my symptoms go crazy (which is why I am trying to keep this brief and why I am only finding this help now). For several months I couldn’t even look at any electronic screen. Reading has also been an issue for me but having said this I apparently have a slippage of my retina and a shearing of the vestibular ocular reflex in one eye only. Knowing this helps me make sense of the visual issues I am having but I am wondering if this is a common issue with the computer and reading.
    As for my physical issues, I have gone from daily workouts both weightlifting and cardio and being very active to now being able to only walk and cycle but with no tension or hills. Can you explain the reason why physical activity is so hard as we recover.
    Finally, I have been told by my osteopath who I see for craniosacral treatments, which I strongly believe got me through some of the worst days, that I should not fly in a plane. I keep forgetting his explanation and one day will think to write it down but something about the pressure. Do you know if this is a fact or know of anyone who had problems after a flight. Although I am still symptomatic, I have been dreaming of escaping my house and lounging on a quiet relaxing beach somewhere.
    An inspirational quote that has helped me along the way has been “It’s not about waiting for the storm to pass, it’s about learning how to dance in the rain.”

  34. Kiera says

    Has anyone else experienced vertigo with their PCS? I have been struggling with PCS for almost 6 months, and if I over exert myself even a little bit, I will wake up to the room spinning the next day.

    • Chandrasekhar says

      Hello Kiera,

      We are in the same boat. I also have been struggling with the so called PCS for about 6 months.

      For the first 2-3 months, when I woke up in the morning I had severe Dizziness and it continued for the whole day. I could not even drive my bike properly. I always felt like I am going to fell down to left side when i was driving. This was horrible.

      I am feeling better for the past one month. Dizziness is rarely present though i am having eye pain and slight headache at times.

      For sure you will get better but it might take some time. Let us hope for the best and just don’t give up. One day we all will be back to our normal life.

      Wish you a speed recovery.

      Regards
      Chandrasekhar.

      • Stephane says

        Dear Chandrasekhar,

        I’m a french canadian, so my english writing may sound strange.

        Like you wrote to Kiera, you and I are in the same boat. 6 months (feb.6th) that I hit the gound with my bike at 43 mph, an still suffer.

        I knocked at every doors to find someone that could ”cure” me and the only advice I received was to rest.

        2 weeks ago I watched a french canadian documentary on concussions in high school football level. There was a neuropsychologist knowing a lot about the concussions.

        I sended him and email and he refered me to his collegue, a kinesiotherapist at his clinic.
        They made a lot of researchs and they’re the only ones in Canada to work that way (but they made their researchs from americans scientists); 3 weeks after the accident, you should begin training, but at an easy level. For the first 2 weeks, only 30 min. of walk under 120 bpm. After that, You should begin the real training.
        But before doing so, you should get rest at leat 3 to 5 days before the workout. I think you’re pushing to hard.
        Finally, if you want so, I may give you their email adresses. They’ll be pleased to help you, and their english writing is way better than mine!

        Good luck,
        Stephane

  35. Kiera says

    I have started to notice a difference in the last 2 weeks… In early March it will be 7 months after my accident…and with PCS. I haven’t experience vertigo since early January, but I also haven’t been exercising, walking to work in the morning (takes 20 minutes, but I go at a good clip), or even grocery shopping! I really think over exerting myself contributed to the long lasting effects of the the Post Concussion syndrome. I still have some symptoms…noise sensitivity being the most prominent, and short blasts of dizziness every now and then. When that happens, I get away from the television. Back in December, my doctor took me off work for a month and a half because I was experiencing vertigo almost every night, and the month long rest really made a difference! I did not watch TV, read or go on the computer…sometimes it was hard…I listened to Harry Potter on audio book and got some good soul searching in. I really hope I am on the road to recovery! in March, if I have little to no symptoms I might start walking to work again, but I will have to take it slow. I really am sorry to hear about everyone’s PCS. I wish you all the best of luck!

  36. Amy says

    Dear Julie,
    I want to thank you for this site and all of the work that you put into educating us on concussions and having a forum in which others can share their experiences. I have found your comments and those of others to be helpful and encouraging. I feel I am not alone in this journey.
    
Here is my story and if any of it can be used for your research, please use it or if I can be any help, please let me.

    On September 6, 2013 I was at Target with my daughter. I was enjoying the morning until I went to the checkout and I began not to feel very well. I had a bottle of water and drank that and went over to customer service and sat down on a chair. After a few minutes, I told my daughter that I wanted to go to the hospital to see what was wrong. I got up to walk to the car, fainted and did a 180, falling straight as a board onto my back. A friend saw the fall and said my head bounced several times onto the floor. My daughter called 911 and I went to ER. They put four staples to close a cut and released me, saying I was fine. I spent the weekend in bed sleeping. By the time I went to the doctor’s to have my staples removed I knew something was not right and he said I had a concussion. I went on to have blood work, 2 CT scans, EEG, EKG, MRI , echocardiogram and a lot of chiropractic care done. Everything came back fine and the reason behind the fainting was low blood pressure. I thank God that it was not more serious than this.

    The first doctor that I went to is trained in sports medicine and he had me go through, I guess, the typical concussion testing. The neurologist, while a nice man, didn’t test me on this and was not much help in me understanding what was happening. My chiropractor was a great deal of help. He is also trained in sports medicine and would explain (slowly and over and over) what was happening, the physical and chemical healings that were happening, the need to be patient and that it could take weeks, months or years. I went to him twice a week for a couple of months and then down to once a week and now every other week. The next time I go in, he wants to do traction on my neck because I am still so stiff. He adjusts me and does the stem unit on me. I think this is why I have been able to avoid the headaches I read so much about. I still get shooting “skullaches” as I call them because it is a sharp pain between my brain and skull. But they are quick, wincing and then gone. Now and then I get dizzy and a quick brainache (“headache” just doesn’t seem the right term anymore since it is my brain that is hurting…) but then it is gone. I notice I get them more often if I skip a week at the chiropractor. So, he has been an excellent resource for me in educating and encouraging me. I also was given a gift certificate for a message and while it felt wonderful, it exhausted me and my chiropractor explained it is the release of toxins and healing that wore me out. My mom has also been encouraging me in my progress by having me log accomplishments and reminding me to look back to where I was last month and not yesterday.

    The first 6 weeks were spent in bed. I would go downstairs at night when it was quiet and dark. The only TV I watched were Christmas movies (in September) because they were slow, predictable and pretty much at an elementary level. I didn’t have to concentrate very much. I wasn’t bored laying in bed so much because I was so out of it. I did try to set up goals after the first couple of weeks. For example, I would try to look at one magazine or edit 5 pictures on the computer for that day. After 2 months I would go out at night but stay in the car and little by little I have ventured out more during the day or more crowded situations. My husband came from the old school of “seeing stars” and go back into the game as the hero and has had a hard time dealing with the length of my recovery. I have tried to educate him on what I have read and he is learning and has come a long way and is more supportive of me and letting me listen to my body. He was afraid of me curling up in bed and hiding and wanted his wife back.

    I have noticed a change in my personality. Prior to this I was Type A, organized, outgoing, business minded, planner who has served in different leadership roles and now I am quiet, messy, laid back and people wear me out. I don’t know if this is the brain injury or if this is a new me. I am still trying to process that.

    I am 50 and some have asked if I am tired from my “change in life” and because of my age or my busyness. I don’t know why I feel defensive about that. I guess I want it to be okay that the fatigue is from the injury and have that be enough. I guess it is also a lack of education on their part of concussion fatigue and how exhausting it is. Once I explain that my hormonal levels on the blood work are fine they seem to be more understanding. I don’t know if my age has anything to do with my lack of bounce back time or not.

    I have been trying to read your posts on women and healing. I have noticed that 2 weeks prior to my period I had one day of relapse. I usually have one or two symptoms a day and on one particular day I had all of my symptoms and spent all day in bed. I felt discouraged and that I was back to Month 2. After that one day, the days until my period and during it I had the usual symptoms and the down to the bone fatigue. After my period ended, the symptoms are there but not as intense or as often. I wish I had tracked this for the past 5 months and will try to be mindful of them next month.

    I feel that I have been rambling and that this took much more space than I had thought, but again, if it helps you with your research or anyone else…Thank you for all you do!

  37. says

    You said: People will turn on you…it has been one week and my wife is po’d which I can’t help but perceive as her displeasure with me. Unable to with her about the PCS problems I am having for fear of upsetting her. Of course she has had to endure this once before and I was a real pain. This time I don’t think so although my sense of failure is mounting up for a run at me. She is afraid I will lose my job as before when I was forced to resign from law enforcement. I loved the work and helped a lot of people especially with my K9 partner who is now dead. And from a practical standpoint it was an excellent paying job with benefits hard to find elsewhere the latter of which I have with my new employer. I made it last time, therefore, I shall make it this time. Thanks.

    • says

      Hi Gary,

      Sorry to hear about your concussion. I hope you’re feeling better some and that it’s all going better. It’s hard to have your life and career so disrupted. I know how that goes; my career ultimately changed. I’m still writing and doing the type of work I was, but it’s different.

      I’m sending vibes! Sounds like you’ve been through it, so you know what’s ahead. It’s not easy, is it? Stay strong, and don’t give up!

  38. says

    Hello all,
    I suffered my concussion over 5 and half years ago (9-2008). I went to the ER and was told I had a concussion.Told to take it easy for a few days. Went back to work and I struggled physically and cognitively. I ended up having to go back to the ER with more issues. Ended up being off of work for 5 plus months, Then started a work hardening program. Never really received any physical therapy or any help from the neurologist or workman’s comp .Finally after 10 months I was released back to my normal work responsibilities. I struggled physically, cognitively and mentally. All Doctors pretty much said, I had reached a point of healing, and that I could not have all the problems from a concussion. So, I struggled for over a year working my regular job. I struggled and finally was able to get workman’s comp to allow me to see another neuropsychologist and Doctor. I finally got connect with Brain injury rehab. I finally had some hope. (after being turned down from several Doctors).Long story short I still have problems with my legs giving out,weak arms and legs, cognitive issues, sleep problems,fatigue, light and noise sensitivity.After all this time I still have hope that I will get better. I try and walk every day to stay as strong as strong . The most frustrating thing about a TBI is the lack of knowledge and support for those struggling with a mbti. Thanks for your blog it is so important for those dealing with PCS to realize what they are dealing with is normal and is more common then led to believe……. Good luck to all

    mikeodean

  39. rosalind says

    My name is Rosalind and I was involved in a motor vehicle accident on July 4, 2013. I was the driver, my 10 year old daughter and a friend’s 7 year old daughter were in the passenger seats. Thank God! Another driver t-boned us as I was making a left hand turn. Our car was pushed diagonally into a 6 foot ditch and flipped upside down. The other vehicle hit our vehicle at such a high speed that the driver side door rock panel was embedded on the front end of his hood. His vehicle spiraled and landed in the ditch as well. He had minor cuts and injuries, the two girls walked away shaken and I miraculously survived with a broken jaw, 1 broken rib, 2 pelvic fractures and later diagnosed with PTSD, Mild Brain Injury, and as of yesterday, PTS. Since July it’s been a living hell. Anxiety and pain and all the symptoms of PTS. Dealing with the insurance company has been more traumatic than the thoughts of the accident itself.
    When my car flipped over so did my family’s life because I wasn’t me anymore. Just about everything that everyone has mentioned in earlier posts describes my symptoms, all of which I couldn’t find words for. The only happiness felt since the accident has been at the barn where we own two horses but care for 6. The majority of doctors have recommended walking and improving my “core” and getting fit by exercising more. That’s insult to injury. I’ve spent on average 4 hours daily at the barn, picking up poop in 2 pastures with wheel barrel and shovel, cleaned stalls and added clean bedding, picked up from the hay fields countless number of bales of hay and helped with putting and placing them in the hay loft above the barn. Picking out the horses hooves is a workout in itself. I love the work. Believe me I don’t need gym equipment to stay in shape. Yet despite losing 30 pounds since the accident (thx to the broken jaw being wired shut) doctors recommend a personal trainer, walking, physio. I’ve been 20 to 50 pounds overweight my entire life. For the most part, I’ve been healthy and fit. For the past 3 years, I’ve spent most of my days volunteering at local barns, caring for horses, the grounds, and working tirelessly. I’ve had ADHD my entire life and have had PCOS and depression since birth. Over the past 9 years, I’ve developed high blood pressure and type 2 diabetes. I used to swim a mile every day at the local pool and loved kick boxing and karate. My cardio was better than most of the kids I took classes with. I’ve asked about Hippotherapy but no doctors familiar with. It’s doing routine exercises riding horses and improves core muscles, posture, balance. It works because the horse’s pelvis and gait are similar to the horse’s and therefore very beneficial and therapeutic. Dr’s feared further injury. My thought : there is risk to everything but precautions could be taken. It’s been 8 months and injuries have healed well although not completely. Anyways, the symptoms of PCS have slowed me down in every way. Every single time I’ve increased my heart rate I’ve experienced those symptoms in the head and neck. I’ve tried so hard to plow through to ream the benefits and feel the rush of my endorphins being dispersed to the rest of my body especially to my head…but to no avail. The doctors don’t seem to get it…my body will not allow me to reach that feel good moment at this point in time. The same sensation occurs with quick movements, sometimes just from getting off a chair to a standing position. I’m soooooo tired of anxiety felt in my head and muscles associated with neck. About a month and a half ago I started seeing a massage therapist and chiropractor. So far, the relief from majority of pain is felt for a couple of days so I see them twice a week. If I miss appointments my body punishes me. Anyways, I’m optimistic things will get better. I just feel like I’m on a merry go round and it’s too fast for me to jump off of at this point in time

  40. And says

    THANK YOU!!!! I thought there was something wrong with me that I just wasn’t getting better. I’ve heard the gambit now that I just made it up to post concussion syndrome isn’t real. My doctors have now settled on it’s your fault you are making it worse and last this long. I feel so much better after reading this.

  41. says

    I hit my head a month ago on my c lost went to the er fid a cat scan of course it came bk normal….but that’s when all this anxiety hit….I’m on Activan for anxiety do I can work and sleep cause I’m always in my head hard to shut it off!! I just want to be me again! !! I don’t see me in the mirror!! Feel like I’m going crazy…… feel nauseous a lot is that normal?

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