I'm over this.
 

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.

Hello There!
 

:welcome_sign:

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
:hug:

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.

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.

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. .

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.

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

14 Mths and counting
 

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....

normal
 

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...

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.

Good recommendations, Wanttobesurfing, for dealing with the compassionate attitude toward one's self-as-is, in the present moment.
And moments onward ... through time ... and, yes, one day we realize,
as your example, "Oh. I'm bending over to tee up a golf ball. I remember when I couldn't do this. Okay. I am better."

Patience with one's self is a Big Lesson in all of this for each one of us.
And, believe me, andy55, I know how tough that can be. It certainly was for me, until I absolutely had no choice but to 'accept what is, today' and work within varying daily capacities & capabilities.

It's good to know that there are lots of others [here] who do know & do understand what you're going through; those who are highly knowledgeable in the current science, medical research info, nutritional, emotional & mental aspects, along with the approaches to getting back into physical exercise/activity.

Hang in there, andy55. We're with you.

I am 17 months out from a head injury. I was having daily headaches that pretty much ruled my life. I have been working with a neurologist trying to find a med that would take care of my headaches enough to be able to function during the day. After a few that didn't work, I was finally put on Topamax. It has knocked them down a bit. There are still things that I have troubles with, but I decided that this summer I was not going to let it drag me down. I spent last summer doing almost nothing because of headaches and fatigue and all the other stuff that goes along with PCS. I have problems with exercising, but also gained weight when not exercising which then lead to a little bit of depression which started this whole cycle. My daughter bought the P90X system and we have been doing that. Yesterday as a plyometrics day with a lot of jumping and today I feel like crap. But, I know that tomorrow I will not feel that way so I do it. I know what triggers certain things and have to ask myself whether certain things are worth it or not. I am just bound and determined to not let this rule my life. I am finally taking control!!

Sheds - thanks for that note - it's encouraging to hear other longer term sufferers facing the same thing as me. I'm with you - I'm normally very active, got a bit of a weight gain and it hits your self-confidence. I go to the gym 3x a week now and generally feel bad whether I do or I don't. Can get my heart rate up to 160 now without getting Nausea. Sometimes gotta stop sometimes it's OK. It's hard to explain but what I'm facing is constant headaches and light headedness. Not so much nausea anymore. Anyway - if I start feeling really bad I just stop. I've found for me that lifting weights, biking and some running on a treadmill is generally OK. The reality is though I feel pretty awful all the time. The good thing for me is I don't feel like puking every minute of the day which I faced for the first 9 or 10 months.

It's hard to keep the big picture perspective but I couldn't walk around the block for the first 2-3 months. I couldn't look left/right/up/down without feeling sick. So the fact I can do any exercise I am happy about. Last summer I couldn't play ball hockey or catch with the kids or swim or do anything. I can do it now and tolerate it the bad feeling but I'll take that anyday over not being able to do any exercise - for those facing this I know it is a helpless feeling but for many it will get better.

Small victories, small victories.

This thread leads me back to a question I have not found an answer to.

For those of you who are several months post injury, do you think jumping during plyometrics or the bouncing of running that leaves you feeling cruddy is slowing down your healing process at all?

I believe (I want desperately to believe) that those activities that leave you feeling cruddy may just be reminding you that you had an injury and you need to not push it to far, but are not doing any new damage or slowing your healing. Again, to use the analogy put forth by my daughter's psychologist 3-months post injury, it's just like a sprained ankle that might hurt if you jump on it months or even years after it has officially healed.

This makes a huge difference in deciding between living your life and suffering through a headache or two, or locking yourself in a closet for awhile. Of course I am referring to physical activities that are not likely to cause another blow to the head here.

PCSLearner,

The brain is not like the rest of the body, especially bones, ligaments, tendons and muscles. The later all become stronger through strain.

The research I have found suggests that relapses of symptoms is counter to the brain healing or becoming accommodated to the injury. Each relapse (decompensation in medical terms) prevents any healing during the recovery from the decomp.

Maybe this example will explain what I think they meant in their reports.

If a healthy uninjured brain is 10

A specific subject's injured brain is at 3

A realistic goal of healing may be to get to 8.

If every time the subject gets to 6 they over stress their brain back to a 4, they will spend most of their time in a roller coaster existence between 4 and 6.

The goal should be to spend as much time at 6 as possible so that healing to 7 is possible. As healing levels increase, the amount of time it may take to get to the next level of healing may be much more than the previous level.

Does this make sense to you?

I tried to continue to work after my injury in 2001. It required my wife's help. But after each week of intense work, I would crash for two weeks. I was such a mess that I was unable to get the claim forms properly filled out to get a disability Work Comp claim submitted.

When I finally realized that I needed to stop working, after some time, I became much more capable of getting the claim forms filled out properly. But, by this time, I had let too much time pass and had an uphill battle.

Now, I have much fewer decomps events and my high function level is much better. I still have serious memory problems but my neuro says it is because of my age and the number of previous concussions. I occasionally have a decomp that lasts a few days. In hind sight, I cam see what I did to trigger the decomp.

Now, my wife helps by reminding me of the risk of overdoing it. She also is good at recognizing when I am getting to my limit. She lives with me soshe would rather I miss an event that I decomp and she has to put up with me.

I did not understand the decomps when I was a teen. I just became symptomatic and others attributed it to a behavioral issue. I decomped during the Connecticut State Cross Country Finals due to being overwhelmed by the chaos of the crowd of runners. I finished about 12 seconds off the first place but was 3 seconds ahead of a runner who I had previously beat by 26 seconds.

I could not figure out why I could not get my head into the race. Only in the past ten years did I realize that I had decomped. I still remember the feeling of bewilderment or confusion I felt while running the race. I likely should have bee the State Champion.

I can now look back at the times where I grossly underperformed. It might have been in competition or in decision making. In hind-sight, I can see that I was seriously missing some of my faculties. Learning how to recognize the bad times and limit exposure is the most valuable skill. learning to avoid over doing it is almost as important.

Hope this helps.

Remember as I write this that this is just about my injury. I only know about PCS from what I have read here and some "Googling". I don't feel like I am doing any harm to myself by doing my plyo or jumping exercises. I do them on a wrestling mat so it has a lot of cushion. I sometimes think that when I have down time I tend to dwell on how I feel and can make myself feel worse then I really do. I may not notice that my ears are ringing unless I really focus on it. Now why would I want to do that? So, I am training myself to not focus so much on those things. Obviously, when I have a really bad headache, I do something about it. If it is a low grade headache, I try not to tune into it. My accident was from negligence in a hospital. I think that I have gone through the stages of grief and have gotten to the acceptance stage after staying in the anger stage for probably longer than I should have!!

Don't get me wrong, there are definitely things I still avoid...running on hard surfaces, road biking, walking barefoot because of inducing headaches. Will I ever be able to run or bike the way I could before? Maybe not. Is it the end of the world? No. There are plenty of others things for me to do that make me feel just as good. I try to avoid loud places because they induce headaches along with very irritating ringing in my ears. But, I will not give up going to Badger football games because I love to do that. I will not give up going to my kids ball games because that is important to me. I will never get these years back with my kids. After 17 months, I need to take my life back. I will not let this rule my life. In the past, when I did things like play tennis, boating, etc. I paid for it for many days afterwards, not just one day like now. So, in that case, things have gotten better. The more I obsess about things the worse I feel.

Like I said in the beginning, I am taking my life back. I know I am not the same person I was before the accident and I am trying to embrace this new person. There are things that I don't necessarily like about this new person (mood swings, somewhat different personality), but I am learning to deal with that. Life is too short for me to dwell on this. I tend to be more protective of my kids because my life could have turned out a whole lot different than it did. I met a man in the grocery store one day who was having a problem picking out the right bag of cookies. He then went on to tell me his story about how he had fallen on the ice while skating, hit his head, was in a coma for a few months and has been in rehab for a year. He definitely is mentally and physically challenged. His life changed in a minute. Mine could have too. He brought me to tears. That put my life in perspective right there in the grocery store. It didn't make mine any less real, I just felt like I had no room to complain as his life was changed forever.

I am by no means discounting any of the injuries on this posting or the recovery process. I know that everyone is different and the recovery process can be very long or it can be on the shorter side. Every one has different symptoms and ways of dealing with them. It is taken me this long to get most of them under control. I had no idea in the beginning that this would be so time and labor intensive. Time in the essence of how long the symptoms could last and labor intensive in how long it takes to finally get a doctor to listen to the symptoms and help treat them. I definitely think that was the key to my decreased symptoms. I am in no way completely recovered, but feel I am well on my way. I have my down days, but for the most part try to be as positive as I can.

Sorry this is so long and again, this is just my story. I pray for all of you and your recovery. It can be such a long taunting road. I do believe there is always a light at the end of the tunnel and hopefully you will see it too. Embrace the day and all of the positive things in it even if they are few and far between. I do believe that is what keeps us going.

Peace.

I'm going to post something building on Sheds recent post.

This weekend I actually had a golf game where I did not notice my head for a full 4 hours. Noticed it before and after but for 4 hours didn't notice it. I've been waiting for something like this for 14 months. It was just nice to have an extended period of time - not even a day though - but still, without noticing it.

For anyone looking for positivity - there is hope.

Small victories, small victories......

New to the site
 

Hello. I am new to this site. I have PCS and TBI caused from a surfing injury where I was "dropped in on" as I was paddling out and a surfer forgot to look before making a drop and my head took the main impact and I went through a 4" glass job and through the foam of the board. It has only been 2 months but it feels like an eternity and everything that I love to do has been taken from me. Without no visible bruises, and days where I feel mostly ok its hard to explain to others the extreme pain that comes and confusion I feel at times as well as the spine pain (few discs are angry with me as well). No doctor can say "don't surf till...this date" or you'll feel better by x...
I'm the girl in the line up that loves the waves, the dolphins and well right now my job is on the line as well as this is not a work related injury. I was always the happy "shorty" in the line up. I just want to pull out a board and go for it. I've never felt so alone, crazy or hurt so much (I surfed North shore 3 weeks after my knee was scoped so I am far from a person who has a low pain tolerance ) yet I feel down right crazy right now. Which is funny considering I am a licensed MFT and am an administrator at a residential facility. I guess thanks for letting me vent. Shorty

shorty,

Sorry to hear of your struggles. You are not alone here. What you are experiencing is very common with PCS. It will help if you can find ways to relax and get away from the stress of your job.

Is there any way you can get some time off or even an assistant to help you at work?

You will likely be able to get State Disability Insurance. California's program is a good safety net.

Stress is counter to any recovery. You need good sleep and nutrition. The brain needs to rest because this is the only time when it can heal.

If you are concerned about your job, you have the credentials to become a specialist in the dynamics of concussion is family life. There is a huge void in services available to families/caregivers of TBI/mTBI/concussion subjects.

Go to www.tbiguide.com Down load and print out the TBI Survival Guide. It is as good as it gets. It should help you understand how to moderate your life and job to help you go on.

If you can post yopur specific symptoms and struggles, there are lots of experienced PCS sufferers who can help you.

My best to you.

Go for it!
 

WEIRD!!!!
You are exactly where I am except I feel worse when I do anything that raises my heartbeat. I decided about three months ago that I am going to do what I want as long as I won't hit my head again. I still don't do as much because felling like I am going to fall down, and a headache that makes me feel like my head is going to explode are not very exciting to me. But I want to live life and I am tired of being an "invalid" because of a headache. Nothing makes me better and even a bright light or a loud sound can or just waking up can give me a headache, so I decided to live life despite the pain. Go for it, it's not like anything worse will happen!:D

Good for you Margarite.

Often, I will not notice I have a headache until I stop for a moment. Then, as I try to relax, I notice the head ache is making me tense. Sometimes, I can relax through the headache and it will subside. Other times, I will need some Tylenol.

My biggest activity stopping symptom is my ability to think clearly. I do not get as active when my brain is in a fog. When I have this foggy brain and a head ache at the same time, I call it a mud head ache since my head feels like it is packed with mud.

Shorty - I can totally relate. Just to be clear I'm a bit of a kook but love surfing....one of the toughest things is not being in the water. I've kooked it up in Maui a few times, Tofino and Oregon and Oahu in summer.

That's a brutal injury.

Thank you for your post. I've been struggling so much with wanting to get in the water and I even did in Maui 6 months after my injury which could have been disastrous if I took a hit to the head - thankfully it was only in 3-4 ft and I really took it easy. Your post just reaffirms that surfing is still too great a risk until 100%.

I was OK and actually didn't feel too bad when I was out there despite serious nausea.

That said, here's my piece of advice - you can't risk another injury to the head before you recover. Don't do anything that risks a hit to the head. For me it means no surfing, snowboarding, motorcycle riding or hockey. I'm 14 mths in - doing much better but not yet 100%. No matter how hard it is you can't put a time on it. That's one of the hardest things about PCS - no time limit.

You have to give up doing what you love hopefully only for a period of time. I'm doing many things now I couldn't do just 3 months ago.

Hang in there and I'd love to see you in the water someday.

Second post
 

I wrote before about getting in there and doing it, but I also want to caution anyone.
I hit my head at least six times after my initial concussion. The first one was falling off a horse, then two weeks later I was sitting twenty feet away from a volleyball court and a soccer player kicked the ball as hard as he could and it slammed into my head, then my brother was trying to catch a ball in the pool and his head came right down on mine, then while dancing I was dipped and another girl who happened to be dipped near me kicked me in the head (this happened twice two months apart, then I went sledding because I was having only slight headaches and the jostling of the sled cause me to have four months of intense nausea and dizziness, the dizziness caused me to fall on some snow jostling my head again and then it caused me to stumble and hit my head on a metal heater.

Right now, the nausea has mostly gone unless I get too warm, the dizziness is gone unless I get too cold or my pulse gets too high, my headaches are as bad as ever and are causing me to be grumpy and have a lot of trouble remembering little things.
I have seen at least six doctors, had 2 CT's and one MRI, and the only thing I have been told is that I'm either imagining it all or that I will just have to learn to deal with it because it might not ever go away.

So, the moral of the story is one concussion makes you more vulnerable to a second...Be careful! Good luck all!

Margarite,

Your 3experience with doctors and CT's etc is normal. Even the last comment from the doctor who said, <the only thing I have been told is that I'm either imagining it all or that I will just have to learn to deal with it because it might not ever go away.>

The latter part of that line is the correct one. You have Multiple Impact Syndrome. You may get better but it is quite likely that you will be extremely sensitive to even very minor head impacts or jostles. I can not even shake my head "No."

The concussions you had in a short period of time could have been life threatening.

There is an important thing for you to do. Get a copy of your medical records and make sure the doctors have listed concussion in the diagnostic codes. It would be 850 or a similar number or simply concussion.

If concussion is not listed as a diagnostic, ask the doctor why and if he will put concussion or probable concussion in your record. Otherwise, the lack of concussion leaves the possibility of somatoform (imagined). The worst thing that can happen to the medical records of a patient with PCS is a diagnosis of somatoform.

You will also be wise to consider than any symptoms you have at a young age will be magnified greatly as you age into the 40's and older. A little prevention in youth is worth a fortune in less symptoms in older age.

I have noticed that things seem to be in slow motion and it is more noticeable when I drive. I think it is visual process speed or something...like I am a second behind everything. Also my vision seems off like things look a little different...I am still 20/20...it is hard to describe...I am also way to spaced out all the time.....

andy55,

If you seem to sense a slowing down, you should get tested by a driving rehab facility. I do not drive much but when I do, I feel comfortable at 35 mph, any faster and everything is coming at me to fast.

Get tested before you or someone else gets hurt.

The fact that your are aware of your problems means that any accident you cause could easily be considered negligent. It can make a simple injury to someone else into a felony in many states.

My journey continues - some ups and some down days. But there is something I want to ask if anyone has experienced. Something good - I find that when I am out golfing I'm at the stage where I'm not noticing my head - I may have a headache/light headedness before but once I'm in my game it goes away. Not sure if this is because of the focus or concentration it takes or if it is a stress reliever - it seems like it should be opposite. I'm also finding that sometimes when I'm feeling poor with big headaches - going for a run or to the gym is OK and my head feels better after.

Is anyone experiencing something similar?

I can't remember who recommended the book Brainlash by Gail Denton but thank you. It would have been great to read some of this at the beginning of my PCS journey. Anyone new dealing with PCS should try to get it - some good stuff in it.