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. :)

Update: July 2, 2014 It’s getting much better regarding awareness and interest by the medical community. I have more hope than ever. There’s still much to do, but it’s getting there.

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. Holly Levine says

    I was dx with PCS on 1988. Was started on tricyclics antidepressant. Over the decades developed fibromyalgia and took numerous additional Meds. Got on disability because I couldn’t function as an RN. Was in pain all the time, trouble concentrating or learning. Thought it was from all the Meds making me sedated and stupid. In December 2011 my dr told me to taper off Valium I’d been on 20 years. I tapered too quickly in one month. Then confusion and phobias, anxiety and depression that sent me to the psych hospital 3 times in 2013. I had stopped taking two antidepressants and gabapentin in 2012-2013. It is now April 2014. I fell and hit my head sept 2013 and early 2011. The Elavil makes my heart race – had a scarey episode of spontaneous supra ventricular tachycardia that made my heartbeat 220 per minute, converted by the paramedics, with IV Aricept. Can I ever be happy and normal again? I identify with PCS people as well as those coming off benzodiazepines and antidepressants. I’m tired of Meds, of being told there’s nothing wrong with me. I am easily overwhelmed and my emotions are raw. Found an Integrative MD who is taking me off Elavil. I’m scared. Feel like a victim of pharmaceuticals. Have some windows of time where I feel normal then get the anxiety then exhausted. Grateful to be in 12 step recovery because the spiritual truths to live by are healthy. I need to work on acceptance of people places things that I have no control over. I need a balance of rest and activity. Food allergies are challenging to deal with. My doctor is testing my hormones among other things. Based on test results he can prescribe homeopathic remedies which I am looking forward to. I hope I hear from someone on this blog. The technology challenges me and I get stressed out – I am 60 years old.

  2. says

    Hey all. Really glad I found this post in a way. Knowing I’m not alone in all of this. People surrounding me aka my family.. brothers, sister and parents keep telling me u gotta get out.. u gotta do this.. do that.. they just don’t understand. I had 6 concussions (sports related) between April 1012-Feb 2013.. and have had pcs since Feb :( migraine 24/7. Can’t concentrate.. can’t b around Morw than 5/6 people at once.. can’t play sport which is my life… I wanna become a sports teacher.. and all that has been put on hold :/ just wanna be better already.. tried so many medications.. and meditation.. nothing has worked for me. Doctors just tell me time and patience.. with my family treating me like shit…. It’s just all getting to b to much. I’m trying to keep strong. I’m sorry to hear what ur all going through.. I know how you all feel. And I wish u all a speedy recovery!
    Are there any facebook groups on this…. Not many people tell me ur gonna b ok… Just hang in there. I have one friend who does that. And without her I dunno if I would still b here.. also getting heartburn due to the weight I’ve put on.. and yeah
    If therw is a facebook group or something.. please let me know.. would be good to just speak to people who have had something similar and see more people who have conquered it after some time… And just a “hey I hope everyone is doing well today” on the page or something..
    But yeah like I said. I hope everyone has a.speedy recovery and we should all b here for each other!! Have a good day all xx

    • says

      Can anyone please give me any tips on how to stop calm myself wheb I get anxious easily.. ussualy I’d go okay sport. Buy can’t with pcs :( any advice would be much appreciated and any medication advice would be aswell.
      Thank you.

  3. 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?

    • Steve says

      Glad I found this site! At last kindred folk! My story is I hit my head on a door edge, don’t ask me how, making a loud crack. I felt fine afterwards which surprised me considering the force, over the next few days I developed a bruise and neck ache which got worse, I put it down to computer neck, but I had a hard time concentrating on my work too. Then exactly a week later I woke up and felt odd, I sat up and felt nauseous, when I got out of bed I nearly collapsed – it was scary I thought I was going to flake out. That was the beginning of my PCS trip. Now 7 weeks later the dizziness, and nausea has all but gone but I can’t run yet, my sleep is terrible and I have annoying tinnitus which doesn’t help. Also, my neck sounds like granola! My symptoms are pretty much the same as previous poster Oliver. I’m seeing my GP this week to see if he’ll prescribe melatonin, the lack of sleep has to be fixed :- Keep strong everyone!

  4. 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.

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