Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 08-30-2014, 04:08 PM #31
Laupala Laupala is offline
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Thanks for the info. I'm not necessarily doubting her study, but when the difficulty I have believing that I'll ever get back to my normal self (even when my providers all think I have a large likelihood of doing so) is attributed largely to the comments on an internet forum of a single person I don't know who seems to know what he's talking about, and those comments are based on personal experience and a single researcher's work (at least as far as I can tell from what's been posted here), I'd like to know what they actually did in the study.

I'm not doubting your knowledge or personal experience, I'd just like to assess the primary source for myself.

Edit: Bummer, I can't seem to be able to access the article through my university online. I did glean from the abstract that they induced stress by simulating low oxygen conditions, and having 10 university students with a concussion history but perceived total recovery do a test, and that they performed significantly worse than those without a concussion history. How much worse I couldn't tell from the abstract.
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26 year-old PhD student in evolutionary biology, slipped on ice in Feb 2014 while clipping my fingernails and walking to save time (dumbest reason for PCS ever?). Initially just had headaches and didn't feel quite right, but a minor head bump 5 days later started a downward spiral of anxiety, depression, insomnia and fatigue. Had trouble concentrating on reading/looking at screens

April 2014 - did exertion test, passed, started exercising and doing more, but didn't feel much better.

May 2014 - Went on backpacking trip OK'd by doctor, trip itself went fine, but felt worse a few days after getting back, more difficulty concentrating, worse headaches.

June 2014 - Bumped head on ceiling walking slowly down stairs, no immediate symptoms, but caused worsening headahces, more difficulty concentrating and looking at screens. Have not felt as good as I did before this since this bump.

December 2014 - after feeling relatively better I went xc skiing and fell but didn't hit my head (something my psychologist who specializes in brain injuries told me he hoped would happen so I saw it was OK), felt worse

Feb 2015 - back in grad school, light teaching load and some research, nowhere close to operating at my full capacity. Still have constant headaches, difficulty reading/looking at screens, mild anxiety and depression, and just not feeling like my normal sharp self.

Trying, but struggling, to believe that I'll get back to my old self, or at least get close.

Last edited by Laupala; 08-30-2014 at 05:15 PM.
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Old 08-30-2014, 05:03 PM #32
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Dr Dorothy Gronwall-
Amazon has a peek inside one of her books -
http://www.amazon.com/Head-Injury-Ox...der_0192627139
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Old 08-30-2014, 05:29 PM #33
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Quote:
Originally Posted by Laupala View Post
Thanks for the info. I'm not necessarily doubting her study, but when the difficulty I have believing that I'll ever get back to my normal self (even when my providers all think I have a large likelihood of doing so) is attributed largely to the comments on an internet forum of a single person I don't know who seems to know what he's talking about, and those comments are based on personal experience and a single researcher's work (at least as far as I can tell from what's been posted here), I'd like to know what they actually did in the study.

I'm not doubting your knowledge or personal experience, I'd just like to assess the primary source for myself.
I hurt my head at 15, got tackled onto a rock. Was out of it for a while and a bunch of months later I was ok, It did not affect my life for the next 25 years until a brutal head insult occurred. I might have been 90 percent after that head on the rock injury. I didn't notice. You wont notice either. If your doctors say you will get all better, perhaps they mean any residual damage will be so small as to be utterly negligible, which I think others on this board are trying to tell you.

I know it is hard to be patient but chances are a year from now this board and this injury will be most likely a distant memory. You are very smart. I am too. We tend to have to KNOW what will be, not what might be. You may never know if you are 90 or 100 percent. It likely wont matter. You will be better. Some here would kill for 90% :0 So don't lose sleep over it. Just rest and get better.
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Old 08-30-2014, 06:39 PM #34
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Laupala,

I have never said you will not recover from your concussion symptoms, nor did Dr Gronwall's research. What I said is that symptoms may return during times of stress. Her research in to 70's dealt with an 8,000 foot altitude oxygen level. She has done more research since then. I just have not had the funds for her more recent book. I think it is $80.

Her 70's research did not address the other stresses we may face but extensive anecdotal evidence says that many other forms of stress can cause a return of symptoms. Plus, I have read other reports and articles that support this. I do not remember what the studies were like so I have not promoted those studies.

And, my neuro-psychiatrist also told me this. He said that stress causes toxic chemical buildup in the brain that results in a weakened condition with a return of symptoms. These symptoms may be concussion symptoms for those with a concussion history and/or them may be symptoms of depression. He is the one that got me started on the vitamins and supplements regimen.

Regardless, you still have healing to do. You may return to a symptom free condition and only need to be aware of stress issues.

I don't see a reason to get worried or frustrated. As I have said many times, anxiety/stress is one of the biggest things that delays recovery. Taking a positive approach to recovery by reducing stress as much as possible is the best way forward in my opinion.

There is no reason to expect to not recover from the struggles you are having now. Only a small percentage have prolonged struggles.
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Old 08-30-2014, 06:59 PM #35
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Quote:
Originally Posted by Mark in Idaho View Post
Laupala,
There is no reason to expect to not recover from the struggles you are having now. Only a small percentage have prolonged struggles.
That is so true. As hard as it is to imagine, when you're struggling with a myriad of symptoms, most of you will recover and get on with your lives. The statistics are on your side.

If, understandably, that seems too cold and abstract, consider this Board. Very few folks are stuck at NT long enough to get past the "member" designation.

As an "elder" and a "senior," respectively, Mark and myself are anomalies on the PCS forum. We are also atypical patients. Mark has endured a number of concussions, starting in childhood. I was involved in a high speed car crash, sustaining an injury that is rarely even survived.

You will do better than us - but I don't hate you for it.
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Old 08-30-2014, 08:50 PM #36
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Thanks for the kind words, the kindness and compassion shown on this board in the face of such hardship is truly astounding and such a powerful resource for everyone going through PCS and TBI.

Mark, I know you nor Dr. Gronwald's research have said I'll never recover, and I hope my post didn't suggest I was calling you out or anything like that. I'm just depressed by the notion that I may have to always think about how some activity or some situation might flare up symptoms, and thus limit my life.

I also know that worrying about this, or being depressed about it, isn't helping me get better. I think that thinking about every little thing I'm doing, and whether it's helpful or harmful to recovery is setting me back too. For instance, I've started volunteer coaching at my old HS cross country team since I'm taking a medical leave of absence and want to do something positive other than listening to audiobooks. I've done it for 2 weeks, 3 days a week, and the practices themselves go fine - I feel a bit more like myself, am happy, and don't seem to feel too bad.

But then I get home, and if I maybe feel a little tired or have a slightly worse headache I start to worry that maybe I shouldn't be coaching, and then I get sad thinking about how I can't do so many of the things I love, and worry that this will be this cloud hanging over me for the rest of my life, directing the things I can and can't do. So that's why I find the notion that even after I recover, stress could cause a relapse, so distressing. I just don't want to have to worry about this for the rest of my life.

Sorry, I didn't mean to hijack the thread!
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26 year-old PhD student in evolutionary biology, slipped on ice in Feb 2014 while clipping my fingernails and walking to save time (dumbest reason for PCS ever?). Initially just had headaches and didn't feel quite right, but a minor head bump 5 days later started a downward spiral of anxiety, depression, insomnia and fatigue. Had trouble concentrating on reading/looking at screens

April 2014 - did exertion test, passed, started exercising and doing more, but didn't feel much better.

May 2014 - Went on backpacking trip OK'd by doctor, trip itself went fine, but felt worse a few days after getting back, more difficulty concentrating, worse headaches.

June 2014 - Bumped head on ceiling walking slowly down stairs, no immediate symptoms, but caused worsening headahces, more difficulty concentrating and looking at screens. Have not felt as good as I did before this since this bump.

December 2014 - after feeling relatively better I went xc skiing and fell but didn't hit my head (something my psychologist who specializes in brain injuries told me he hoped would happen so I saw it was OK), felt worse

Feb 2015 - back in grad school, light teaching load and some research, nowhere close to operating at my full capacity. Still have constant headaches, difficulty reading/looking at screens, mild anxiety and depression, and just not feeling like my normal sharp self.

Trying, but struggling, to believe that I'll get back to my old self, or at least get close.
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Old 08-30-2014, 10:27 PM #37
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Your biggest problem is anxiety. Getting caught on an increase in head ache or fatigue is unreasonable. If you get a head ache, take a break. If you get tired, take a break. Think of it as a momentary clue to take a break.

If you are going to take on a busy activity, expect you MAY need to take a break afterward.

Get used to the fact that you may have relapses from time to time. As your life goes on, you will begin to learn how much stress you can tolerate. You may be able to tolerate a high level of stress in certain areas and less stress in other ways.

So, the head ache or tiredness is not saying you should not be coaching. It is saying you need to take a break.
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Old 08-30-2014, 10:53 PM #38
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Don't forget the stages of grief, it applies to all life changes not only loss of a loved one. We go through these stages with Illness and injuries..

http://psychcentral.com/lib/the-5-st...d-grief/000617
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Old 08-31-2014, 03:53 AM #39
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Quote:
Originally Posted by Laupala View Post
My main fear with this whole concussion is that I've lost who I once was. I used to be extremely physically active as a distance runner, and mentally active as a grad student, and was pretty much always happy or content, and rarely anxious. Now, I can't exercise like I used to, and am afraid that I'll never be able to return to my active lifestyle, which was a large part of how I defined myself. I'm also afraid that I won't be able to return to my PhD program, as I can't read for long periods of time (currently 10 minutes) without exacerbating symptoms.

Most of all, I'm afraid that I won't return to my normal, happy-go-lucky self. If I blew out a knee and couldn't run anymore, I'd at least feel like it was me who would have to deal with the consequences of that. But I haven't felt like me in 6 months, and the prospect of never feeling like me again is scary and sad. It's hard to explain exactly why I don't feel like myself. I'm sure much of it is simply that I'm not doing what I used to be doing all the time, and so I'm anxious and depressed and just don't feel right. But it seems deeper than that, like something about me has fundamentally changed.

All the specialists I've seen assure me that I have a high chance for full recovery, but when I hear you say that stress may always hold me back, I'm afraid that for the rest of my life I'll have to avoid the stress of running 100 miles a week, or reading intensely to study, or staying up late to write up a paper, or spending a month in Hawaiian forests collecting crickets (my current work, haha), or simply think deeply and clearly about an experiment or something like that. I'm afraid I'll have to live my life without this cloud hanging over me all the time, I don't want to always have to think about how every little thing I'm doing might affect the long-term health of my brain.

I also realize that I'm incredibly lucky that things aren't worse, and I don't have to deal with the hardship that many on this board deal with every day (short-term memory issues for instance), but those are the fears I'm dealing with right now.
This is it exactly for me, I feel exactly the same as you do. I had a promising career as a Clinical Psychologist, I was going to apply to start my doctorate this December.
I had 2 accidents, one in December last year in which I'm pretty sure I sustained a concussion, then a minor car accident a month later, after which I started experiencing symptoms.

I returned to work in July for 2 half days and it was just overwhelming and bizarre. I looked over some emails I had written before and some documents I had put together before the accidents and it was like they had been written by someone else.
I can't write to that standard of English anymore or get across complex ideas.

But, like you said, the thing that scares me the most is I feel like a different person. I, too, was very active both mentally and physically. I loved being smart and it was a big part of who I was, gave me a sense of validation, self-esteem and confidence.
I was a very strong, social and independent person and I'm just not anymore.

Now I can't use big words anymore as I'm no longer sure of their correct use and often get them wrong, so to avoid embarrassment I speak a lot more simply.
I don't get jokes, either at all or quickly enough to not look really stupid in social situations (this is leading me to avoid some social situations).

I have no confidence in myself anymore and I have no idea what I can and can't do in terms of my cognitive abilities.
Whenever they are 'tested' by a challenging situation, then I seem to fail pretty quick. I spend most of my days doing light tasks which tax neither my brain nor my body and sometimes I feel 'normal'. I don't feel myself, but I feel like I don't have issues.
However, as soon as I am mentally challenged then this all falls apart and I realise I'm still broken.

I think, like you, most of all, I was happy and a very cheerful person. I don't feel like that anymore. I realised I rarely smile or take much pleasure in doing anything and it's taken me some time to accept that I am depressed.

I'm 7 months in and when I first came on the forum I felt a mixture of relief at finding some answers to questions I had and sadness at the answers themselves. It was hard to read about damage being permanent, but obviously made sense when I thought about it (I studied the brain somewhat, I should have known this!). I'm also awware that it's only some stuff that can be rerouted so to speak, so there are deficits I have that I will always have.

I also felt really down initially at the prospect of never being back to who I was before the accident and I think I've just started the long road of coming to terms with that.

I try not to be negative about it, but instead I feel I'm being realistic. I will never be a Clinical Psychologist now. I may never have a high status/complex job (this was very important to me). I may never improve much beyond my current situation.
BUT, I keep telling myself, like you said, that it could be so much worse and I can still live a very full life.
I keep trying to think of all the things I CAN do and not everything I can't.
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Old 08-31-2014, 07:52 AM #40
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Quote:
Originally Posted by Abbilee View Post
This is it exactly for me, I feel exactly the same as you do. I had a promising career as a Clinical Psychologist, I was going to apply to start my doctorate this December.
I had 2 accidents, one in December last year in which I'm pretty sure I sustained a concussion, then a minor car accident a month later, after which I started experiencing symptoms.

I returned to work in July for 2 half days and it was just overwhelming and bizarre. I looked over some emails I had written before and some documents I had put together before the accidents and it was like they had been written by someone else.
I can't write to that standard of English anymore or get across complex ideas.

But, like you said, the thing that scares me the most is I feel like a different person. I, too, was very active both mentally and physically. I loved being smart and it was a big part of who I was, gave me a sense of validation, self-esteem and confidence.
I was a very strong, social and independent person and I'm just not anymore.

Now I can't use big words anymore as I'm no longer sure of their correct use and often get them wrong, so to avoid embarrassment I speak a lot more simply.
I don't get jokes, either at all or quickly enough to not look really stupid in social situations (this is leading me to avoid some social situations).

I have no confidence in myself anymore and I have no idea what I can and can't do in terms of my cognitive abilities.
Whenever they are 'tested' by a challenging situation, then I seem to fail pretty quick. I spend most of my days doing light tasks which tax neither my brain nor my body and sometimes I feel 'normal'. I don't feel myself, but I feel like I don't have issues.
However, as soon as I am mentally challenged then this all falls apart and I realise I'm still broken.

I think, like you, most of all, I was happy and a very cheerful person. I don't feel like that anymore. I realised I rarely smile or take much pleasure in doing anything and it's taken me some time to accept that I am depressed.

I'm 7 months in and when I first came on the forum I felt a mixture of relief at finding some answers to questions I had and sadness at the answers themselves. It was hard to read about damage being permanent, but obviously made sense when I thought about it (I studied the brain somewhat, I should have known this!). I'm also awware that it's only some stuff that can be rerouted so to speak, so there are deficits I have that I will always have.

I also felt really down initially at the prospect of never being back to who I was before the accident and I think I've just started the long road of coming to terms with that.

I try not to be negative about it, but instead I feel I'm being realistic. I will never be a Clinical Psychologist now. I may never have a high status/complex job (this was very important to me). I may never improve much beyond my current situation.
BUT, I keep telling myself, like you said, that it could be so much worse and I can still live a very full life.
I keep trying to think of all the things I CAN do and not everything I can't.
I know it feels like a lifetime, but you are too early in your recovery to write yourself off.

You are wise to try and focus on the positives. I try to measure myself by how far I've come SINCE the injury, not how I was before it. I've come a very long way, and I'm still traveling. My initial prognosis was terrible, but I decided to ignore it - and I'm glad I did.
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