yep, Mark you are completely correct. I was very fortunate, much more so than most, to be referred to a neurologist on the first try who at least knows what i'm dealing with. I also take for granted being in a good sized city where there are several choices. I'm glad that you edited my suggestion there.

There are so many helpful sections in the TBI guide, one in particular was about how to prepare for dr. visits. This has helped me to get what i need out of the appointments.

Wow- informative post by PCSLearner. Thanks for that.

1. It is natural to fear the unknown if you don't know what exactly is happening. Trust your body to be able to heal itself over time, however long that might be.

2. One time I sat outside in the grass for 1-2 hours and just spaced out. My brain felt less stressed afterwards. For me it helped to have these "spacing out" sessions. Too bad it's wintertime and too cold outside.




Mark - great post. I think it is important that the wrong diagnosis by the neurologist doesn't obstruct opportunities to receive new help. I just wish I read that earlier, like 2 weeks ago.

I would first say welcome to the forum. Read some of the posts in the hope that they help with your particular situation as each injury is distinct but you may have some similarities. You are not crazy and you are not alone.

For me, I spent the first few months in denial and trying to push through the injury. Pushing though is not an option: I found that out the hard way. It took me over six months to come to the conclusion that I had a severe injury.

For me, getting associated with a good medical team (neurologist, TBI specialist, and TBI rehab team) has helped. Beware of all docs as they are all not the same and you may need help finding someone with experience in TBI/PCS. I live near a major city and am lucky to have one of the nation's best hopsital systems available to me. Searching out the specialists and working with the insurance companies is very exhausting. Unfortunately it is something that must be done. Hopefully, you have a partner to help you with this process. Ask for help in this process.

The insurance process ..... wow what do I say besides roadblocks that can create overload. I still experience overload from talking to my insurance companies (IC). You must remember that IC are businesses seeking profits. Your medical expenses hurt their profits so IC will do things to protect their profits. IC make the process difficult so you will give up. Never take a denial of benefits without asking for an explanation.

The emotions are hard to handle. Read the TBI Guide as emotion is part of the process. I have done my share of crying and expect more to come in the future. Now, every day, I thank God I am alive and try to cope with this new life. Humour helps. Familiy and friends help. This forum helps.

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

3) DO NOT GET A 2ND CONCUSSION

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,
Margarite

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.

Out.

Thank you for your words of inspiration. I am currently a senior in college trying to make it though my last semesters. All of my life I have been the girl who loves a challenge. MY passions include soccer, snowboarding, wakeboarding, surfing, horseback riding, hiking, and all of that fun stuff. Now, Ive had one too many concussions and am here dealing with PCS. I am only in month 3 and have given up sports for the time being and am trying to give up the gym for a little to see if it helps. I have nausea daly, fatigue, dizziness, and all that fun stuff. The anxiety and depression have taken a toll on me as I feel like my brain is precious and I am upset in myself for hurting it and pray that it will be better one day. If not, I mus learn to cope with this new me and I need to come to terms with that because like you said it could be way worse. I can still walk and smile and im alive on this earth. I know soccer and snowboarding and other activities may be done for me for good which is saddening. How long did you give yourself to heal before you started participating in simple active activities? I feel as if Im okay to handle the gym and outdoor activities, but I also do not want to rush the healing process. The gym helps with my anxiety though and that is why I am stuck at a cross road. I know the recovery road will be slow, and I may never be back to where I was, I just hope the people in my life accept me for that. Thank you for your encouragement and I hope your path continues to improve for you!

Kacee

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.

DO NOT GIVE UP!

xxxx

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.

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!