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Things you wish you'd known when you first got post-concussion syndrome.

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Old 12-14-2010, 03:58 PM   #11
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Default Great Idea!!!

This is an awesome idea!!!!!

1) Realize that your doc probably doesn't know anything about concussions.

2) There really is not much to do for your problems


4) Treat your symptoms
If you are dizzy walk slowly and wear good shoes
If you have trouble with light wear sun-glasses
If you have trouble with noise try having some white noise to help

5) Have a daily journal of your symptoms throughout the day

6) Realize that people don't know how you feel, even when you tell them

7) You may be lucky and heal quickly, but it may take years

8) Research online there is a plethora of info

9) Realize that it you can learn to live with this...You are OK

10) You may have to stop doing sports (dancing), go to the gym instead

11) Pray, pray, pray!

12) Stress kills! Keep your neck loose not tight--best advice I got from a doc!

Finally just realize that you will be fine!
Don't hit your head again or it will get worse for a lot longer, but even then it will go away or you will learn to cope and live with it.
It can make you either a better or a worse person...your choice.
Sure it stinks, but as long as you have had a CT and MRI to prove that there is no bleeding or breakage then you won't die and you can become stronger from it.
Offer your time to others. This condition can cause you to become very self-absorbed, giving your time to others or even better giving your time to others worse off than you helps with the selfishness.

Good luck....I know it is a daily struggle. I am on month 23...It is still constant headaches, light and sound sensitivity, dizziness sometimes, nausea daily, trouble with concentration, worsening with activity, and constant fatigue. I got this from falling off a horse my freshman year of college, got 6 minor concussions afterwards from silly things within a year of the first. But I am in my junior year of college and plan to go to graduate school.

This has helped me to realize others' pain when they are suffering, it has made me want to go into nursing, it has helped me to learn how to manage my time better, and how to rely more on myself.

It is your choice.

Good Luck,
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Old 12-17-2010, 06:20 PM   #12
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1. It may be a very long road to recovery, if ever - don't put a time limit on recovery. Really depends on the concussion. This is what I found most difficult. But with time, generally you will get better.

2. Reframe your situation and give yourself time to accept your circumstances. I'm 20 months, still not fully healed. I deal with it daily. I may never fully recover. Flipside is I could be dead or a parapalygic (sp?) or something a million times worse. Whatever you are going through it could be worse.

3. Limit risky activities. For me this is near impossible but I have reduced the risk of head injury. i.e. No Hockey.

4. Generally it will get better with time - just don't look at things day to day or even week to week. For a serious concussion month to month or every 6 months is more realistic. Then you'll probably see progress.

5. PCS can be a blessing. Trials and tribulations build character and can make you a better person. Relate your story to others - you can help out someone else.

6. This is just my opinion - doctors have no clue about concussions (hey my dad's a doctor so I don't say this lightly). They just don't. Time is what will make you better. I doubt you'll get answers through Neurologists.

7. For me doing things I love helps. Gotta stay positive.

My short story - head injury snowboarding. Knocked out cold for a minute or so. Memory loss. Probably was my 5th concussion since I was a kid.

I'm an exec and only missed 1 week of work (not saying that's for everyone but I think it saved me from potential for depression).

Month 1 to 3 - poor vision, couldn't walk around the block, always nauseated, headaches, dizziness, light headedness.

Month 4 to 12 - basically the same thing but gradually could get some excercise at the gym. Couldn't bend down to tee up a golf ball. Couldn't wash my car, mow my lawn or rough house with my kids.

Month 13 - eyesight finally corrected itself after seeing a zillion doctors. Yeah!

Month 20 - today. I Golf and do many things I've put off. Surfed in Maui last month (I know it is risky but very small waves...) Headaches still and most days, nausea sometimes but much better, dizziness sometimes. Can't pinpoint anything triggering how I feel. Although I do know stress doesn't help.

Tried Naturopath, accupuncture, seeing other specialists - nothing worked for me other than time. Never took any drugs and don't plan to.

One day maybe I'll be 100% better. Till then I'm coping with a different me - but long term I'll be better for it. No hockey though

Don't dwell in self pity.......your situation, whatever it is could be worse. As I write this I feel like crap.

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Old 01-01-2011, 03:59 PM   #13
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Default things I wished I'd known first time around!

Get Gail Denton's book Brainlash early on and keep referring to it.

Journal good days and bad, that way you can see overall improvement over weeks and months.

See a behavioural optometrist if you have vision/balance/dizziness problems.

Try alternative therapies to see what helps, including acupuncture, cranial osteopathy, massage, etc

Talk to people about how you feel, even if they don't understand. They may not understand your injury but they do understand statements like I'm in pain, I'm lonely, I'm scared. Tell them what you need from them, they won't know what to do otherwise.

Rest, rest, rest, rest. The brain heals quickest when it is allowed to rest........if your symptoms worsen, it may be a sign that you are doing too much and need to pull back.

Do NOT believe the doctors who tell you that you will not recover any further after a year. This is utter rubbish in my experience. I was mostly recovered after a year, but I continued to get better and better as the years went on.


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Old 01-09-2011, 06:37 AM   #14
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Default Its not forever

I feel a bit odd when replying to things like this because I wonder if I'm actually talking about the same thing as everyone else because altho I have been diagnosed sort of with PCS, I'm not totally sure its the correct diagnosis.

These are my probs (posted in 2008):

hi dont really do this sorta thing but, as title says, i wan2 kno if any1 has the same symptoms as me. 11yrs ago (i was 9 at the time) i was in a car crash, it wasn't serious but i got the usual injuries (whiplash, bruising etc). i noticed immediately that i was v aware of the fact that my mum n bro were sniffing (coz they were cryin, obv) n the noise upset me and made me angry. ova the past 11 yrs the problem has worsened and worsened - noises that upset/anger me are clickin, sniffin, swallowin, tappin, basically alot of diff noises, mainly caused by ppl. i have no idea y the noises upset/ anger me n i feel like a freak n the fact that i have this prob really really upsets me. the anger/upset causes me 2 hit myself (head, arm, leg), dig my nails into myself, bite myself, basically anythin 2 relieve the frustration. n the fact that i do this 2 myself also upsets me!! i have recently been diagnosed with Post Concussion Syndrome (after having about 20 docs ova the yrs not have a clue wot was wrong!!) since the crash i have seen numerous counsellors (nothin worked) n i'm now on medication, tho that ent workin eitha. i would really like 2 kno of a 'miracle cure' (kno thats not v likely!!) coz it has ruined my life and my childhood. if anyone has experienced the same things/similar things plz tell me if anythin worked.
thanx 4 takin the time 2 read this (jus realised there's quite a bit lol!!)

I don't know whether or not other people have similar issues but I'll say what I think anyway.

Firstly I'd suggest not to dwell on the problem (if its similar to the kinds of things I have). Believe me I know how hard it is not to but seeing as I'm in my 13th year of having these issues, it is so damn hard to try to change something that has almost become a habit. Being 9 years old at the time of the crash didn't help because its hard to understand exactly what the hell is going on in your head when suddenly you have feelings that make you feel horrible inside and you don't know why.

But I would say that from the outset, you HAVE to have a positive outlook (I didn't have this because I didn't know what the hell was happening and how long I'd have it for). Without the positive outlook and thoughts, it consumes you and it takes over until its ingrained into you. You need to realise that you are stronger than this thing and you can overcome it. And its not something that is definite and forever, something caused it to happen so it can be undone. At the same time you do need to be aware that it wont be easy and that if there are things that get in your way you need to be strong enough to get through them, which I believe that everyone, if they convince themselves enough, can be.

Don't take any crap off doctors, who aren't qualified in this area, trying to fob you off just because in actual fact they dont know what they're talking about either. See a neuropsychologist or some sort of 'brain doctor' who is qualified in that area and keep pushing until you get satisfactory answers.

If you are the parent, You can do the whole positive thing and reassure your child that its not forever and it will be overcome. My parents have been totally fantastic throughout the whole process, even tho I haven't been the easiest of subjects to deal with but they have none the less. Get your child to talk about how they're feeling so that they don't bottle things up. You go through every single emotion going and thats a lot of stuff to keep inside. Give your child ways of dealing with the emotions BEFORE they find ways themselves, such as self-harm. I mean it never even occurred to me that I was self-harming until my dad suggested it was.

I realise all the things I'm saying may be idealistic and in practice putting these things into play, espec with a child is gonna be really hard, but in my opinion it will be worth it because hopefully it will make the process smoother and more importantly shorter.

Most importantly, don't let it become part of your life you've just accepted.
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Old 01-09-2011, 06:51 AM   #15
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Totally agree about the insurance companies. I had so much trouble with mine, got settlement in the end but they may as well have just kicked me straight it the face it was that pointless! I'm not saying that everyone will have the same experience I had but with brain injuries, insurance companies just dont accept liability without definitive proof, which is impossible in my opinion. I'm not saying everyone should not bother claiming but if it goes on for 13yrs like mine did, it does nothing to aid recovery because of all the extra stress involved and it just keeps the problem going longer. Just keep track of how its making you feel and judge for yourself if claiming is really worth it because there is nothing worse than putting so much effort and emotional energy into something that doesn't turn out quite how you were hoping.
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Old 06-11-2011, 02:08 PM   #16
Robert Briggs
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Default Post Concussion Syndrome

It is very encouraging to realize that the experience I am having is in fact not unique to me and that there are many others who have similar testimonies to mine.

It is seven weeks since my injury at indoor soccer. Flying head first into the wooden surround wall having gone straight up and over the goalkeeper was not my purpose but such can be the nature of the beautiful game.

At first I did not realize how bad my injury was, although I was out for a few brief seconds I did not think much of it until I began to be seriously dizzy and foggy in mind. It took over a week for the injury to really kick in and left me light-headed and faint.

As a pastor, and preacher, I have never experienced anything quite like this in 19 years of ministry. It has truly been a humbling and profitable experience if not a little scary too.

I have experienced anxiety in ways I never knew existed. I have been fatigued at a level that is abnormal, and my toleration for light and noise has been reduced.

Thankfully the issues mentioned above have eased although I have relapsed with more intense dizziness, mild nausea and mild anxiousness over these past few days, mainly I think because I returned to exercise and exertion on the soccer field. I am determined to remain wise in how to handle this but also desire to face it and not allow it to define me. This is a very interesting challenge for someone who has been blessed with good health all of my life and who now is learning things about illness at a deeper level.

I am very thankful for the testimonies on this forum and desire to encourage whoever I can in our mutual battle with what is a reality and not an imaginary condition.

I do believe that we are fearfully and wonderfully made by our creator and in many ways finely tuned. Head trauma affects that fine tuning and the connection between our brain and soul (the seat of our affections and thoughts and will) is not fully understood by any of us, secular or religious. I am convinced that it is designed to humble us and realize that we cannot live this life in just in our own strength and that we need the mercy and grace of one who is bigger than ourselves. I am confident that in spite of what I am afflicted with in this experience God's grace is sufficient to see me through. I trust if you have not discovered that yet, you will.
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Old 06-11-2011, 08:01 PM   #17
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Go easy on yourself. A concussion/head injury is a life changing moment. It takes a while to realize that this is the "new" you - a somewhat slower, stupider, more agitated you (also in chronic pain if you get the headache too). I went from riding my bike everywhere in the city and going out with friends to staying in all day confused. Everything takes time. Time time time!
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Old 06-11-2011, 11:20 PM   #18
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The love of soccer you received in your homeland not withstanding, I hope you are taking precautions on the soccer field. Absolutely NO heading the ball. God gave you feet to use on the ball. After your concussion, your brain will be much more sensitive to impacts or even simple jolts.

The goalie box during a corner kick is also a very dangerous location for those who have a history of concussion. Too much contact.

The way of a fool is right in his own eyes, But a wise man is he who listens to counsel. Prov 12:15 NASB

Many of us have experienced the sensitivity to minor impacts after that first concussion.

Hope you are doing better. I have not been able to tolerate the auditorium acoustics at my church. Instead, I serve the under 2 crowd.

My best to you.
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
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Old 06-13-2011, 10:00 AM   #19
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I wish I had understood that recovery REALLY is two steps forward one step back....after a month of symptoms easing and starting to like feel myself again suddenly out of the blue it's all back again....
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Old 07-23-2011, 05:36 PM   #20
steve lord
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Originally Posted by Concussed Scientist View Post
Please use this thread to post advice for new members along the lines of "if only I'd known that when I first got post-concussion syndrome".

Most of us are probably struggling with our symptoms trying to cope with our situation and find the best treatment. It is a learning process that unfortunately takes a while, but we do learn things along the way, things that would have helped us had we known them at the beginning.

Here is your chance to pass on what you have learned to any new people to this forum, who will doubtless be hoping that someone has some guidance for them in dealing with this horrible condition.

Perhaps this thread might help others not to waste time and energy before finding something that helps them.

Everyone is different and in different situations but, if enough people share their experiences of what they have learned, perhaps new readers will be able to pick out something that will work for them.

Long story how, but I found several ways to accellerate the healing of many injuries I have had and that includes brain damage, and even heals these injuries , including my brain damage, significantly, ten years after healing had stopped compltely.

One is to merely place your hand in the most common fetal hand position, by placing your hand up near your chin, or clavicle, it doesnt matter wherre your elbow is, whatever is most comfortabe. One hand, right or left, is sufficient. This fetal hand position has evolved obviously in the fetus into an immediate trigger for enormous healing acceleration and immune stimuation. It resurected my badly damaged vocal cords and the same effect on my long dormant brain damage, and other wonders. It cures a cold in about an hour or two in a number of people who have tried iti and myself.

Hold the hand reasonably still and hold nothinig in your hand . You can rest your elvow on anything and can stand or sit or even walk around in that position, or if lying down you dont want your whoe palm to be touching your chest so curl your fingers so the backs of them and the heal of your palm are the parts of your hand that touches your chest and rest your hand on your upper chest, however is most comfortable. You can sleep that way and it will also heal things in your sleep although perhaps not as fast when asleep, and greatly improve all aspects of sleep.

The second which is even a bit stronger and is the ideal for healing brain damage, although both work wonderfully, is to stare at tv snow or static found only on older , non digital, analogue tv sets, now that snow is blocked on new tv sets, turn the sound all the way off. That puts me and I believe all people in a dead ringer for the theta brainwave state, which is again found in the womb, which has also evolved as a tigger for fetal enhancement pf functioning and healing and immune stimulation and that gene is in all of us I believe. Both methods have had 4 million yeas to evolve in the powerrhouse both are now. Others have tried the hand technique successfully on many problems.

To be successful it is imperative you not be too near man made electronics when they are on, comuters and monitors and modems, cell phones, flat screened tv sets which I find radiate up to seventeen feet to the degree of affecting these two theraies, modern radios , some cars computer chips, and hopefully the electric power line running on the street is the normal distance away and not right just a few feet outside your window. One othe insumountable problem now is your neighbor, if in apartment, if he has his flat screened tv set on within seventeen feet or less of you , the radiation will go through the wall and also totally prevent these two methods from working because of that radiation's effect on you I have found. Same with the other sources I mentioned. ALso smoking make this not work, and immune suppressants diminish it, like antianxiety meds, muscle relaxants, pain killers like the synthetic opiates, poppy seeds are 3 are some I warn against.

I want to stress just how powerful the enhancement to healing is using either of these methods, you wont have to guess, it is so quick and obvious.

So thats about it. Hope that helps someone.

Steve Lord
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