Hope after 16 months?
 

First, a huge thank you to all of the contributors here and creators of this group! For the past couple of months I have been reading many threads and it has been so helpful. I'm sure there are many others who browse only and like me, appreciate the sharing of knowledge & experience here.

I'm 42 and have been struggling with PCS for over 16 months now. My first concussion was at age 12 when I was kicked in the head by my horse. I was knocked out but no idea how long as I was alone (est. 5 to 30 min).

My 2nd (assumed) concussion was from a "minor" car accident (age 23) - tore the muscles at the base of my skull so in looking back with what I know now, I'm quite sure I had a concussion.

I began playing soccer at age 35 (outdoor & indoor in an arena-type facility). My first indoor season I had 2 impacts in one game. Diagnosed with concussion but recovered within a couple of weeks.

Three more minor concussions over the years with same type of symptoms and recovery. Doc told me, no more concussions. But I never really took her serious - I just figured, ok so I get some real bad headaches for a bit. But hey - no pain no gain, right? What an idiot I was.

Then Oct, 2009 I was hit by the ball in the face and apparently fell to my knees and then completely over. I was only out for seconds but was told that I was acting strange - trying to get back on the field to play which of course I was not allowed to. And yes, I'm retired from soccer and all impact sports. :o

I've taken some of the advice from you folks and have added B vitamins and better nutrition.

My main PCS symptoms: dizzy, extreme fatigue, visual & auditory sensitivity, intermittent stuttering, occasional slurring & use of incorrect words, lack of concentration/focus, etc.

Although I remain hopeful, I am becoming quite fearful that I may not recover. I miss my work and my old life so much. I'm so frustrated!

I would love to hear from folks who have had PCS for a year and more please. Have you continued to recover? Should I start "accepting" some of this? :(

Thank you!
Soccergal :winky:

I am only at 11 months but have not seen any improvement for months so I have been told to accept that much of my symptoms will be permanent. My doctors prepared me for this months ago. Although I don't like it I have accepted it.

Sounds like you have Multiple Impact Syndrome. It can leave you with permanent dysfunctions. Your age also is problematic in that the brain has a difficult time healing. It is struggling to slow age related degeneration so healing is a big task.

Your best bet is to work at learning the many work-arounds and accommodation many of us use to live a full and higher functioning life. This starts with learning to understand your symptoms. The you need to learn what your triggers are. Avoiding the triggers is important.

The word finding can be frustrating but a simple comment, "I have a brain injury and sometimes my brain gets stuck trying to find a word." works well. Those close to you will understand and give you support.

Understanding how your environment (visual and auditory) effects your ability to function will help you learn to avoid such environments.

Focus or concentration struggles are tasks that takes time to learn to overcome or reduce. I will close my eyes to try to clear my head so I can concentrate.

Welcome to the world of "over with 40 PCS." Your life will go one. Learn to embrace the new you.

My best to you.

Thank you both. Certainly not what I was hoping to read today. Any tips/tricks on reducing the visual overstimulation? I find it easier to lessen the auditory stimulation with soft music, earplugs, etc. Other than resting in a dark room, any suggestions? I've tried to wear sunglasses in the house, but it almost seems to make it worse. I think my brain is working even harder to see & process.

what do you mean by visual overstimulation? Driving, tv, etc.??

I find that when I rest a few mins (20 or so) during the day with a mask covering my eyes it helps a tiny bit. Have you tried that??

I understand that it can be more difficult to heal the older one is and that yes, with multiple injuries there is a greater risk for things being permanent.

But I would never accept a doctor telling me basically to live with it. I know that the brain is a magnificent organ that we do not fully understand. And they are constantly learning things about it. That they have now discovered that healthy areas of the brain can and will learn tasks previously assigned to now damaged areas.

I have had my injury for two years now. I have not had the miraculous wake up one day and be fine recovery I stubbornly wished for. It has been slow. And I have had huge set backs. But I have made improvements. I understand myself and my injuries more now and have the tools to help me compensate. My prognosis is very good compared to many. I am grateful for that. Yet I still have people telling me to accept the new me and lower my expectations.

FORGET IT! They cant tell me what I'm gonna be like 5 years from now. They dont know. And neither do I. And neither do you. Keep working at it. Keep hoping. Attitude is so HUGE with a brain injury. Believe in yourself, even if no one else does.

Do you see a speech pathologist for your stuttering and things? It made a world of difference to me. I have not stuttered in 6 months.

I too have severe sound and light sensitivity. I go no where without my trusty sunglasses. And have a couple of different pairs to ensure the right lens for the right job! I you think you might be working harder to process with them on in the house, find a really light pair, almost clear, but that just takes the glare down. Or a yellow or brown lens that keeps things bright enough for your vision to be better.

I also take 5 to 10 minute breaks every hour to sit, close my eyes and do nothing. It recharges me to help manage my fatigue, but also rests my eyes just a bit to keep them from fatiguing as well.

Best of luck to you. I know how hard this is. I struggle everyday. We all do. But don't give up on yourself. Your brain, and you, will surprise you.

Oneid1hrn, your comments certainly do lift my spirits and give me hope! No, I do not see a speach pathologist. I see my doc next week and will ask if she will refer me. The fact that it helped you gives me a lot of hope. I will look into various sunglasses with different shades as you suggest. :cool:

Aireyden, I too rest with an eye mask, but maybe I let things get too bad before I do this. I'll try to take more rests and see if that helps. The main causes for me is TV, computer and shopping.

Thanks a bunch! :)

soccergal,

There are two kinds of visual over stimulation, bright lights and visual clutter.

Something that may be an issue for you is visual clutter. Many homes have lots of things on the walls and everywhere else. This is visual clutter. I cannot tolerate visual clutter.

Once, I was having a neuro-pych assessment and the PhD did not understand why I was so overwhelmed by his wall of fame that was behind him. He had a whole wall covered with plaques and diplomas, etc. My brain kept wanting to focus on the wall rather than on him.

Later, when I was being tested for SSDI, the psychologist completely understood the need to have a quieter room visually.

Fortunately, my wife does our walls with simple objects and not too many.

oneid1hrm made a comment that is out of context She said <That they have now discovered that healthy areas of the brain can and will learn tasks previously assigned to now damaged areas. >

This has been know for quite some time but,,, It applies to focal injuries such as a stroke or penetrating head injury. The diffuse injury common to PCS does not have this rewiring mechanism available. The problem is that wide areas of the brain are damaged to a minor level. That is why PCS is such a tough condition.

For those with Multiple Impact Syndrome and especially in later life when the brain struggles to recover, learning work-arounds and other accommodations is the first line of recovery. There are many ways we can do a task when the previous method is hampered by PCS. Making lists, memory tricks, avoiding situations or environments, and learning to let go all will help us live a full life.

I have found that most of the things I used to get upset about really don't matter that much. By letting go and moving on, we continue to live. Then as we look back, we realize that we were concerned for no reason. As we learn to redefine our lives and even ourselves, we find that there is still plenty to do, often in areas we overlooked before.

Yes, a positive attitude is good but an expecting attitude can be counter-productive.

Does everything have to return to the way it was? Or can we learn new skills and develop new interests that fit the new PCS person? Claiming the former is akin to banging your head against the wall. Don't do that. It hurts.

My best to you.

I think I'm OK with things not going exactly back to the way they were, but to feel this terrible everyday is depressing (mostly the dizziness - it feels like someone is stirring a stick around in my head, right above & behind my eyes!).

I do want my life back and I guess I do understand it won't be quite the same. But I really hope to feel better and deep down, I know I will. I have great fear of not being able to go back to work (I'm so fortuante to be on dissability - I know not everyone has this option!). Finally, I was in a position at work that I truly loved! I was so luckly! But that job requires a lot of multi-tasking, public speaking, many meetings, etc. My boss often said I was one of two of her best leaders/managers. I hate that now, I would be her worst one! :( OK, my vent is over - I feel better now - lol.

Perhaps by learning more work-arounds, it will take some of the stress off my brain. I'm also terribly bored which I think is perhaps a good sign because for the first year, I wasn't bored at all. Even if all I did was sit and stare the wall - it was all I could handle at the time. But now, I want to do more and maybe I'm pushing it a bit too much with the computer and TV. Maybe more visits to the swimming pool and as spring approaches, more time outside. We have tons of snow here - ugh!

Oh, and my visual over-stimulation is both light and clutter. But the light sensitivity is a little better now. Anytime I'm in a new environment, I get very dizzy as my brain trys to process what is around me. My home is pretty clutter free. Perhaps I need to train myself not to try to "see" everything when I'm in a new environment. And I think the various shades of sunglasses might really help.

soccergal,

You made a good comment when you said <Perhaps I need to train myself not to try to "see" everything when I'm in a new environment.>

I have a slight modification to it. Train yourself to try to "not" see. It is a more proactive approach. In other words, as soon as you realize you are focusing or noticing the things around you, find something to look at so that you can look away from the rest. Before you do this, try closing your eyes for a moment to break the pattern is seeing.

In the early going, you may need to close your eyes a lot to get the system working. I close my eyes without even a purposeful thought to do it. It is a reaction. You could say it is a defensive action.

Explain to those around you why you do this. They will hopefully begin to understand. Explain how your brain does not work well at blocking out irrelevant images or sounds. This is probably the mostly common and most frustrating PCS symptom.

It comes from an injury or tearing of the axons in the center of the brain where information is gated to the different areas of the brain. These gate system end up with the gates left wide open so everything gets through without restriction. Bedlam in the brain.

Even though you say your house is not cluttered, try relaxing with your eyes open and pay attention to what your eyes and brain do. Do they scan and dart around or can they just look calmly at something without jumping to something else? If they jump around the room, you have too much visual clutter for your brain's current condition.

Clutter does not mean your house is disorganized or messy. It just means there is too much for your mind to process in its current state.

Visual clutter problems really become evident when you are in a new environment. Nothing is 'as usual.' Everything is new and undefined. This means the brain needs to define everything in view or earshot. Once it is define, the brain can relax a bit. It will do a good job at relaxing if the gating is working well. If not, it will take some time until everything become understood or defined in memory. If your memory is not working well, as mine is not, this will not happen quickly if at all.

Something we all need to understand is a simple function of the brain. When the brain sees or hears something for the first time, it wants to define or understand it. This result with a file of information in memory about that stimulus. Now, every time the same stimulus is observed, if is compared to the existing definition on file. It will collect observations of the same or similar observations.

This is why when you buy a new car, you begin noticing more of the same model on the road. They were always on the road in the same proportion but now your brain has a definition on file to compare the observation to. So, it makes quick note of another one. Play Slug Bug (or Slug Dub for you youngsters) for a few minutes and then stop and watch how you cannot stop noticing VW bugs on the road.

When we understand how our minds work, it can help us understand some of these annoying symptoms.

My best to you all and to all a good night.

From someone who has had PCS for a year or more
 

Hi Soccergal,

I am in the group that you were hoping to hear from, those of us who have had PCS for a year or more. I have had it for 3.5 years now. Yukh!

And yes, I have continued to get better!

I have noticed an improvement every year. I didn't wake up one morning and find that all the symptoms had gone either. I think that we can forget about that one, however much we might want it to happen. No, it seems to be a slow recovery, tediously slow, but I am pretty happy that it still seems to be going on. So, I can't help being optimistic, even though I haven't got completely well yet.

I take one time of year, like Christmas, so that it's easy to compare, and try to remember what it was like the year before and then the year before that. Always worse the farther back in time I recall. Perhaps next year I won't have any symptoms at all. Perhaps it will be like the frog that jumps half way to the other side of the pond at each jump but never actually reaches the other side. Well, as long as we keep going in the right direction things are getting better.

I don't know if it has helped me to continue my recovery but the longer I have gone on the more therapies I have been trying. In the first year, I was just like you when you were staring at the wall. I was just staring at TV programs about house renovation, which is pretty close to staring at a blank wall. It was all I could do just to survive, but the better I have got the more energy I have had to try to improve the situation. This last year I have been taking nutritional supplements and having Hyperbaric Oxygen Therapy. I couldn't manage to get it together to have either of these before. Maybe they are making a difference; maybe I am just slowly improving anyway. It's hard to know. Apparently there are small amounts of stem cells in parts of the brain, so the brain can actually manage to repair itself more than was previously thought, although sadly not as well as most other parts of the body - better than nothing though.

I hope you can continue your recovery.
We'll see if after another year you have managed to heal a bit more. If you make a note what things are like for you now, in a year's time you may see that everything is a bit better. I was still in a pretty bad way after 1 year. After 3.5 years, I am loads better. I hope it turns out that way for you too.

Good luck moving along your road towards wellness.

Concussed Scientist

Hello,

I used the little memory sticks, dry erase board, multiple calendars etc. As these tools are very useful indeed for some. They really didn't help me too much because I either forgot to refer to them or found them visually overstimulating!

I have a Blackberry cell phone. My teenage children "reminded" me of the Calendar, task & to do list it had on it! It has a little "reminder" sound it plays so remind me of each.

They "re showed" me how to use it! As soon as I have an appointment for anything, I immediately enter it on the Calendar of my Blackberry & have it remind me of the time the morning of & sometimes the day before, so I don't forget.

The ear plug/s help me a lot. There are situations I only wear 1 ear plug, in my right ear because I've realized I have lost some of the hearing in my left ear.

If I HAVE to go to Walmart, I wear both ear plugs & sunglasses. I've found that this does help with the visual effects some. I have a list, stick to it & get in & out as quickly as possible.

There are some days I go there & am unable to finish the list so I get what I have & get out of there.

I've noticed, by slowing down & paying attention to me, that fast, sudden movements tend to throw me off all the way around & sometimes it seams as if I can feel my heart beating through my ears. I've learned to take "just breathe through it" by taking slow deep breaths. (nobody knows your doing it anyway) & this helps with the anxiety of it all.

I'm still learning the term of "Keeping it Simple". It's a process for us all. I'm still working on the de-cluttering part. Not that my house is messy or anything of the sort. I'm just learning to simplify my life around my new brain and way of life.

My family has adapted very well to this concept & was extremely eager in assisting & adjusting as it has helped them too! "When Mom does well, we all do well"!

Good Luck & God Bless,

Toni