Struggles of Post- Concussion Syndrome
 

So being 16 years old and dealing PCS is probably the hardest thing I have ever had to do in my whole life. Knowing that I may never be normal again is scary. I received a tough double concussion playing soccer on April 22, 2012. To think that the sport I have been playing since I was just 4 years old could hurt me was tough to take in. I know that I haven't dealt with PCS as much as most people on here, but I still struggle everyday and it is so hard. I'm just not sure how much more of this I can take. I have a constant headache from the time I wake up to the time I fall asleep. I go to a concussion doctor once a week to check in. And I'm in physical therapy (vestibular rehabilitation) twice a week. I literally went from a very healthy teenager with no previous medical problems, ever, to a rundown girl with no social life. I can't go through a whole school day since before the concussion, which is the hard. But the hardest thing for me to handle, is that people start to stop believing you. They think that your faking your condition to get attention which is beyond frustrating. Sorry that I'm complaining but honestly I feel like that is all I can do. So if anyone has any advice or some words of hope, I could use them right now. Thanks for letting me completely spill everything out, even if no one reads this it felt good to get it all off my chest.

We can all relate to what you are struggling with, it's very difficult and very hard to get "normals" to understand, I've tried countless analogies and explanation but everyone has some sort of smart *** answer.

"It feels like I haven't slept for days"
"Well then why not take a nap?!?"

Ugggg

There is no need to compare with us "I've haven't had it as long as you guys" etc

Having PCS for one day is a day to long.
We are here to support you and to listen to you.
Don't ever feel like you are bothering us - if you have questions - ASK
If you want to vent - VENT

It's good that you are receiving treatment but if you delve into these forum you will find most people have had a difficult time with doctors.
Look around the forum but the basic advise is as such

Start taking vitamins - I was pretty skeptical about this at first but the logic is sound, if your brain is healing - why not give it the things it needs to heal

A good multivitamin - B12 - Omega 3-6-9

Eat a healthy diet - No crap
No MSG
No artificial sweeteners (aspartame etc)
No caffeine
No alcohol
No tobacco
No drugs
(I'm not suggesting you do these things - I just want my list to be complete)

Most people report bad symptoms after eating high sugar products - A soda will usually make me feel worse for a few hours

Ensure you are well hydrated - This is very important
Lots of sleep

Try to create a low stimulation environment
Minimize "screen time" TV - Computer - txting etc
No loud noises or bright lights
A lot of us listen to audiobooks to pass the time
No physical exertion or lifting


I'm sorry - this is a very depressing list but its best you know now early in your recovery instead of having to figure this all out as you go.

The final and most important thing on this list is DO NOT HIT YOUR HEAD AGAIN - I suffered a concussion on December 4th 2011 - I recovered in 2 weeks. February 29th 2012 I hit my head again (not very hard) and I've been symptomatic ever since. Things are slowly improving but nobody can tell me when or if it will ever fully go away. I live my life day to day thankful for the functionality that I do still have. This is a humbling experience. Feel free to PM me or respond if you have any questions.

We are here to support you and answer any questions you may have!
Don't hesitate to ask or if you just want to spill your beans then feel free. Nobody will judge you here

Best of Luck!

I feel for you - you're too young to be having to deal with any of this!

I went from a career, social life, money etc to a jobless hermit counting pennies. But it's early days for you, and for me too. I live in hope that one day we will be fully recovered, and I'm sure others here who are further down the road in their recovery can vouch for that. I'm so sorry for all that you're going through. What kind of support do you have? Do you live with your mom and dad?

I'll also add that if you are falling into a depression - Seek help.

I have my good days and my bad days and then some really bad days

The really bad days I start pitying myself and I lie in bed for days at a time. The 3 times I've done this I felt worse for it. WAY worse - took me a few weeks to get back to where I was before I "gave up"
Depression does not help the brain heal and its best to address it early on if it is becoming and issue.

I know how hard it can be - I've basically lost all my friends. I live alone and nobody ever visits. It sucks - but I understand and I forgive them - They are "normals" they still take life for granted

I relate to all of this. I pretty much live alone too,haven't heard from friends in months. It was my birthday yesterday and I had 2 emails - both from friends out of the country. I almost cried I was so grateful. The rest of my 'friends' - nothing. Not one lousy card or phonecall.

Thank you so much for this! It helps to know that I'm not in this fight alone. I'm new to this website so I'm not really sure how all this works lol. But it really would help to actually have someone else to talk to who understands. This thing we go through everyday is a huge struggle. And it may not be cancer, it may not be a deadly disease, but it is still life changing and hard for somebody my age to accept.

Yup - I've had a few call and tell me that they are going to visit - I spend the day cleaning and preparing a spread or something for them to eat - sometimes I go out of my way to get food or drinks for them and then they never show up, not even a phone call to say "can't make it"

Happy Belated! I wish it could have been a more joyous occasion for you!
Here's a cake!

Thank you for the support! I'm so sorry that your concussion changed your life, it's not fair for anyone to have to go through this and I truly hope that we can all recover too. There needs to be some kind of answers or treatments out there instead of just 'rest' because we can't rest, we have lives. & yes I live with my parents, and they are great and everything but I can tell that this whole thing is taking a toll on them to. The take me to physical therapy, they take me doctors appt., but they try so hard to understand what I'm going through and it doesn't work. I feel hopeless honestly. Thank you for listening and responding.:hug:

I actually fell out with a friend last week over that. Got everything ready (not easy to do in our states), made lunch for us, was really looking forward to it then he cancelled 20 mins before he was due to meet me. Another friend actually stood me up, like he couldn't face making up an excuse so just ignored the whole situation, ha!

Thank you for the cake, it looks divine.

I agree, I think people should be made more aware of brain injury/pcs considering how common it is.

Perhaps you could direct your parents to this forum to help them understand? I know there are links to some good videos too, including one called "You look great" which rang very true with me.

:hug: I hope you feel better soon.

Unfortunately there is no silver bullet for this condition - I'm an information nut. If I have something on my mind I can't sleep until I get an answer. I've scoured the web and this site is the best source of information out there.

It's poorly understood and most medical professionals deny its existence. Unfortunately for us its all to real.

I was a pilot before my accident and now I'm in no position to be anywhere near an airplane. All I can do is rest and take it easy and hope that this curse will lift someday.

It's very easy to let it consume you - I am an atheist so religion and "god gives you only what you were meant to handle" does nothing for me.
I have to constantly remind myself to be grateful for what I do still have. I could have easily broken my neck in the fall that I had but that didn't happen so I must remind myself - It could be worse.

Hang in there and don't let go! You will find some sort of purpose in your life - even if its not the one your originally intended. This is the nature of life. **** happens. Bad things happen to good people - its how you deal with it that decides who you are.

Some good sites
http://post-concussion-syndrome.org/
http://www.fightingpcs.com/

Your Welcome!

I was angry at my friends at first but then I realized that they just don't get it - I can't be angry at them for being ignorant. They will realize it someday when they fall on hard times. It's these difficult times that help us grow as people. I know that sounds very canned but it's the truth.

Best of Luck - I'll be thinking about you

Thank you, I hope you feel better also!