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


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Old 05-23-2016, 11:33 PM #1
newbie787 newbie787 is offline
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Default How do you guys deal with the general lack of social care about concussions?

So I'm about 7 months out now. I don't have a splitting headache every day, I don't feel dizzy and nauseous every second day. However if I push myself too hard I do still get headaches and feel very drained. I'm more 'functionally' ok now rather than not functioning at all. But that just in many ways makes it harder, as instead of avoiding social events you go to them, but then have to explain why you only stay an hour, not four. Or why you wouldn't drink, or go out partying afterwards.

From day 1, pretty much everyone I knew wanted to debate the legitimacy of the concussion, this even coming from family members. But even after half a year, I'm still not really noticing anyone coming around, now "you don't have a concussion" has turned to "surely you'd be better by now you just hit your head, people hit their head around the house every day". With them trying to bring their personal experience of how they smacked their head too one day and was perfectly fine.

Unfortunately this sort of attitude fills me with barely controllable rage, but I don't think I know a single person who hasn't expressed some form of it. Is this the norm for you guys? How do you deal with this?
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Old 05-23-2016, 11:39 PM #2
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I tell them...don't hit your head, the last thing you want to experience is the last 2 years of my life, or , this is one club you don't want to join.

I told my wife the other day borrowing from a Three Dog Night song lyric..."this is the strangest party I have ever been to", only mama didn't tell me not to come to this one.

I am feeling good enough now to have a little fun with it. I sign off all my texts with an anchor emoji, customers love it and am going to name my boat this summer....the flying anchor


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Old 05-24-2016, 02:12 AM #3
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You can't convince them. But, you can inform them. Tell them that 15% of concussions cause prolonged problems and some cause lifelong struggles. Every brain responds differently. Every concussion is different.

As Bud said, This is the strangest party I have ever been to.

Wow, that Three Dog Night song ( Momma Told Me Not to Come, 1970 ) was a hit the same year I had my first bad prolonged problems from a concussion. Seizures, cognitive and memory problems. Dropped a full grade point as a high school sophomore. Just a bad header in soccer practice. Took me 2 years to recover to a functional level.
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Old 05-24-2016, 07:28 PM #4
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Man if I could begin to describe how awful people are in understanding what's wrong. I've heard it all from wow I thought you would be better by now too wow you're still having a hard time. My favorite is when people say I feel like that too. But they have no idea what it's like to feel like that everyday not just once in awhile. Getting people to understand what you're going through is absolutely impossible. People who only talk to you every once in awhile I just tell them now that I feel better than I did seems to be a better answer than trying to explain how I feel better. Only my neurologist and I know exactly how I feel. Terrible to feeling that way alone.
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Old 05-24-2016, 08:31 PM #5
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Cheers for the responses guys

Bud, glad you can look at things with such humour. Honestly, that was the way I dealt with things when I was younger, its been a bit harder the older I got I found. More responsibilities and stress. I have it a lot better than some, so if you can view it that way than I should be able to aswell.

Mark, I completely agree. That is the best way to answer it. The problem seems to stem from people who feel they've also hit their head and are 'fine'. I find this kind of links in with blame shifting, that you're causing the issue because they got a headache for 2 days and got better, not suffered for months.

Muss, I agree. I think most people struggle to deal with long term illness. Illness to them is something you suffer from for a few weeks and then 'get on with it'. Not something that drags you down for longer and longer durations. I can kind of understand the lack of understanding, until they try and offer advice, which nearly always equates to 'get over it'.
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Old 06-04-2016, 08:49 AM #6
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The lack of awareness is really bad--if only I had known what I know now!
Even my PCP gave horrible advice causing me to push through at work for 5 months.

Just don't push it- having learned the hard way. Tell those that encourage you that it isn't worth the aftermath.

September will be 2 yrs for me, yet I still have numb feet, vision and vestibular issues. Getting told that it was 'probably psychosomatic because I was back at work' (after 2 weeks of half days at home) was the icing on the cake!
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Old 06-04-2016, 02:58 PM #7
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Grace,

My feet aren't numb...the get tingly, achy and several toes can get spasms when walking at times, never before dos inexperience this.

Almost 26 months out for me now.
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Old 06-04-2016, 07:40 PM #8
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Hi Bud,

Agreed, my foot issues were all post-concussion as well. I've just started Benfotiamine supplements (per neuropathy suggestions) and it has only been a week but I am cautiously optimistic. Doesn't hurt to try it.

Conversely, the B-vitamin regimen had me totally out of my usual complacent self. It was so crazy- I was always in a rage. My kids were astounded.

Now that they are home and doing nothing I think resuming the vitamins may be a good idea!

Have a good weekend,
Grace
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Old 06-12-2016, 04:33 PM #9
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really other than this forum and this one girl i recently met, i dont know anyone who understands what its like, and i dont think that will ever change unless somoene has been through it themselves, its crazy when you hear these football players, hockey players, athletes , who have had concussion problems and end up killin them selves or drug over doses, i don't think my problems are nearly as bad but i can understand why they do it now....
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Old 06-13-2016, 08:27 AM #10
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Sohitd,

I sure gained a lot more compassion and belief in how some players can have devastated life's due to head trauma after my accident...I highly doubt they fake it now.

Grace,

I hope the new med works out and enjoy your summer with your kids.

Bud
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