[Wanttobesurfing]

New to the site. Had a concussion 14 months ago snowboarding - cracked helmet, saved my life probably. Blurred vision problems have finally corrected after 12 months. Headaches daily. Nausea comes and goes depending on the day. No specific triggers to feeling worse or better. Just basically living with feeling not like myself all the time. Been very cautious about activities but have been running and working out (weights) from past 3 months. Not on any drugs nor have I been. Have only missed 1 week of work right after it happened. Am definitely better than I was but progression has been extremely slow. Very active before concussion - surfing, ice hockey, squash, running etc. Have been cautious and only biked, and lifted weights. Can get my heart rate up to 160's now again wihtout feeling natious - generally. Still feel bad though regardless.

Positive person so depression not a problem but I'm just quite frustrated.

Here's where I'm asking for input from someone who's been suffering as long as me. At what point do you say screw it and just do the stuff you used to do assuming you can handle feeling bad? For example I started running again - sometimes feel crap sometimes don't. Doesn't seem any worse than if I do no exercise. The way I feel after really makes no difference. I want to play basketball, surf etc. Get back to normal.

I know it takes "time" but at what point do you just go for it again assuming you can handle feeling bad? Over a year of waiting and being cautious is driving me nuts.

Any input is valued.

[Rrae]

Glad you found this forum! You will find many caring folks here!
If you want, you can introduce yourself in the New Member forum and more people will see your post......
Here is the direct link to click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=88

I'm so sorry about your accident. You seem very strong and determined.
Please stick around and let us get to know you. While getting support from others here, you'll find that they also are inspired by YOU

Welcome aboard my friend
Rae

[Mark in Idaho]

It sounds like you have already observed that your activities do not seem to change your symptoms. If you add some more strenuous activities and your symptoms do not increase, then why not do those activities?

Be aware of your risk of Second Impact Syndrome and Multiple Impact Syndrome. There are many here on NT who have lifelong issues due to Multiple Impact Syndrome. Be aware that your surfboard can whack you in the head so big wipe outs might be worth avoiding.

Regarding depression. Depression is a physiological illness cause by emotional and/or physical stresses. The emotional stresses can all be positive and still cause depression. Depression is common in the PCS community due to the physical stresses put on a brain that is less tolerant. Add just a bit of emotional stress and you have a double whammy of causes. You are very fortunate to not be experiencing depression.

My concussions have caused a roller coaster of depression after each concussion.

Just remember. You have a whole life to live. Short term risks can cause a lifetime of struggle.

My best to you.

[Wanttobesurfing]

Mark - thanks for the note and comments. Sound advice regarding risking hit #2 to the head and longer-term permanent injury. Like many others on this site I have changed my lifestyle - no surfing, no ice hockey, no motorcycle riding. It's been a very long road just to get to this point where I can actually do basic things such as wash my car and play in the yard with my kids. A year ago I couldn't even walk around the block wihout feeling sick. Too many people depending on me to risk it (3 kids).

Like many others though, it is a very long frustrating road. Waking up feeling like crap is just part of daily life now. When I don't feel dizzy it's a good day.

The question I still struggle with is at what point is it permanent and can you go back to normal and assume the feeling crap won't end? Rhetorical question. That's the biggest struggle for me. I know I need to continue to be patient.

To anyone else who reads this stay positive and don't look at progression on a weekly basis - look at it month to month. Also don't put timelines on things - it can get very frustrating. Final comment - going through PCS builds character and you learn something about yourself. Try to take the positives from what you are going through. Whatever the situation is it could be worse.

[Mark in Idaho]

surfer,

You need to determine what symptoms are permanent and what symptoms are due to daily or other triggers.

My most importunate point for you is singular. Have you ever had anybody observe you sleep? If you wake up feeling bad, you likely are not sleeping well. I have central sleep apnea since my concussion in 2001. If I sleep correctly, I wake up refreshed. If I roll onto my side, I stop breathing frequently, have stressful dreams, and wake up feeling lousy. I will be in lousy shape all day unless I take a good nap.

I often can get a good nap in a recliner. I cannot roll to my side on a recliner.

In bed, I roll my pillow so that it supports the side of my face so my head does not turn to the side too far.

Someday, I hope to find out what is wrong with my neck that is causing this problem. I can't yet afford the local upper cervical chiropractor.

My wife can tell how my day will be by observing how I am sleeping when she gets up. Sometimes, she will try to get me to roll onto my back. She can also tell by my facial expression as I sleep. Sometimes, I look like I am at total peace and relaxed. Other times, I have a scowl on my face.

I was a right side sleeper most of my life. Now, if I roll to my side and my head drops forward or to the side, my breathing goes haywire.

You seriously need to get your sleep issues understood.

I am convinced that my father had the same problems. he would stop breathing while sleeping as long as I can remember. He slowly deteriorated with dementia. After 30 to 40 years of deterioration, it finally took his life in 2007. He refused to have a sleep test even though he recognized his slow decline. .

[PCSLearner]

Hi, Surfer! Sorry to hear of your injury. I'm glad you have had some gradual improvements.

I'm wondering if you've read the book Brainlash by Gail Denton? She started vision therapy 6 years post injury and was surprised at how much better she felt. I noticed you mentioned vision issues and nausea, so thought I would throw that out there for you.

[PCS Mikey]

Hi Wanttobesurfing,

Welcome! I too am coming up on a one year anniversary to my concussion. Like you got the response "it'll take time". I think neurologists, while in med school, need to be subjected to a Post Concussion Syndrome simulator for an hour or two to see exactly what it is we feel and experience every day. That might make them understand our frustration. I can tell you having heard the word concussion, I never knew it was so brutal.

Lots of folks here have great examples of things to try.

Good luck!

Mike

[Wanttobesurfing]

Thanks for the responses - I'll check into the book. I've tried many things. Accupuncture and natural medicine. They didn't help. I saw a neuro vision guru many times as well. I saw the Opthamologist 10 times over the past year - had my perscription changed like 4 times. Saw neurologists. Tried a few different drugs but they didn't help and to be honest I don't really want to take drugs. Bottom line - no one could do anything for my vision issues and one day it just partially corrected. Generally vision is OK now. Didn't read except for work related reading for about a year.

I don't mean to be pessimistic here (hey - my dad's a doctor). The reality is in my opinion "time is the key". I don't think Neurologists know much other than wait until you feel better. It's not their fault - they just don't know anything about PCS. That's what makes it so difficult. It's the never never plan. Gotta do what you can and be thankful for that.

On the big spectrum the worst is over for me. The nausea is nowhere near what it was for the last year. I can deal with the constant headaches and feeling crap - it's the not knowing when or if you'll ever get back to normal that's the kick in the face. I am confident time will heal me and most of us - may take another year or two - who knows. That's the challenge with PCS - there's no timeline. As long as I'm not risking another hit to the head I'm going to do whatever I want and just deal with it. Like I said with my first post - "I'm over it". I'm sick of it running my life so now I'm going to run it. It's my enemy and I'm going to beat it....

[andy55]

surfer,

I too am hung up on getting back to normal...I am 10 months with pcs and it

is a crapstorm. I am always looking for people that have dealt with it for as

long as I have and then had all symptoms disappear. All you hear is that it

get better, better...but does it ever freakin completely go away?? If anyone

does have a story of getting their old self back please post...I understand

what you mean by just doing things and saying f*** it I am not gonna let it

rule my life, but everytime I try that symptoms prevail and I fall short of my

expectations...It is like I am in some weird kind of limbo state...I like stories

like the Johnny damon concussion because he says it took him a couple of

years to "feel right" again...

[Wanttobesurfing]

Andy - I completely understand and I know it is easy to say "screw it" and then you feel like $@#$ every minute of the day. The learning for me is you gotta be positive and not let it drive you down as it will just get worse and worse. I agree you are in limbo and so am I. Hey - about 9 months ago I couldn't bend down to tee up a golf ball and today I'm golfing. Whoopty doo, but really it is a small win as I couldn't do it a year ago. I still feel like crap, like I do every day. It'll impact me all day but I gotta try to live and take some small successes. I have 4 people depending on me so I have some motivation. Doesn't mean I'm goinng to be normal today, tomorrow or even in a year from now.

I'm just saying you gotta find some small victories. You're going to be in limbo for a while - then again I know of a hockey player (forget the name) - plays for the Manitoba Moose (IHL). Spent 10 months in a dark room, couldn't do anything and one day woke up normal and is playing hockey again.

There's hope. Stay positive and look for some small victories. You learn a lot about yourself and it will build character for later in life. Easy to say but try your best to not let it rule you.