Thanks Donna for your suggestion and for sharing your practices at work. This will help me as I start to put together a plan to go back. I think that's a good idea to try going to a store or somewhere where there is a lot of stimulation for a small amount of time. I remember about a month or two ago I tried to go to the supermarket with my husband and I hardly lasted 5 minutes before I had to go to the car. Now I think it might be time to try that again.

It seems like a big part of returning will be educating the folks I work with on what I need - like you said, taking breaks and having quiet time, working in lower lit areas etc.

Did you find that your symptoms increased when you first started working again?

Ski and Nitro,

One way to help others understand what your needs are and what you are going through is to explain how your brain is malfunctioning.

The simplest issue is the over-stimulation or over-attending as the medical term goes. The brain receives a vast amount of information but needs to process very little of it. It has to filter out the excess information/stimuli and direct the needed information to the proper part of the brain. This is where PCS causes a problem.

The brain's filtering mechanism is the most commonly injured part of the brain, especially in a concussion. It is like a traffic cop at a busy intersection with impatient drivers honking their horns. As it tries to filter or direct (gate) the information traffic, it fails and lets too much information through without giving it a direction to go. The result is the individual part of the brain that wants just a bit of information gets too much information and some of it is information that should have been directed to a different part of the brain.

Crash, the information collides as it tries to get processed. This is the overwhelmed feeling. It causes a cascade of other malfunctions, especially in the epinephrine/nor-epinephrine system causing a flight or fight response. Now the brain is told to speed up by the flight or fight response. Problem is, it only has first gear. It can't handle any faster speed.

The goal is to let the brain work with only first gear until it can handle second gear. The epinephrine/nor-epinephrine system also regulates blood pressure and pulse. Raising blood pressure and pulse increases head aches, etc.

This is far too much to try to tell co-workers but it can be simplified. I just tell people that my brain's filter that filters out excessive stimulation is injured and it lets too much information through, causing an overload. They usually understand this simple explanation.

I also have a visual and auditory memory problem. I explain that my immediate and short term memory is severely injured, making it difficult to follow quickly changing visual images or verbal instructions. btw, This is likely due to the gating system not processing the information correctly.

The additional problem is called diffuse axonal injury. Each brain cell (neuron) has up to 10,000 wires (axons) connecting it to other brain cells (somewhere between 10 to 100 billion brain cells). The wires become stretched, broken and tangled. This causes information to not flow consistently. Neurons heal slowly but only during REM sleep.

There is some research that indicates that the neurons can replicate over time. The problem is axons heal very slowly and you need thousands of them for each brain cell to connect to the other brain cells. It took 20 years for the brain to accomplish most of its maturing and connecting the neurons with axons. Repairing this broken mass of axons will not happen over-night.

Stress is the worst thing for this brain environment when it needs to heal. Stress increases cortisol and epinephrine and nor-epinephrine. This is like trying to put a fire hose's volume of water through a garden hose. The excessive pressure and volume will just fatigue and break the garden hose. There go a trillion axons, stretched and fatigued. Back to square one and more need for rest.

I am surprised your doctor sees you weekly. A bi-weekly visit would be more frequent than the brain can heal. I have had brain overload crashes that took longer than a week to recover from. Often, up to two weeks.

The value of a journal IMO is to observe and report trends, not daily events. It also allows extreme events to be remembered and related to the doctor, like going out and overloading when a siren or alarm went off.

I have gauged change over months time, not days or even weeks. Often, I will realize after accomplishing a task that I had not done that task successfully in months or even a year or so.

I notice the doctors prescribed "no thinking." For me, that was not possible. Instead, I moderated my thinking. Music works well to fill my mind but not stimulate thoughts or reactions. Amusement TV also works. By amusement, I mean TV that allows passive watching, not active and reactive watching.

I believe there is a rhythm that the brain relaxes to. Music with a consistent tempo and a melody that is fluid rather than chaotic is very easy to relax to. It may require trying some music genres that you consider boring. Boring is what the mind needs right now. Lyrics with gentle meanings allow you to cognitively understand and agree with can be beneficial.

My wife can tell when my mind is at rest. I will have a sense of peace on my face. If my mind is not at rest, I will have a grimace on my face. When I wake up, I will not feel refreshed.

Instrumental music may be all that the mind can handle at first. Lyrics later as the brain can handle the extra information. Foreign language lyrics work for me. I imaging the thoughts of the lyrics rather than the actual literal meaning, like "Time to Say Good Bye" (Con te partiro) sung in Italian by Andrea Bocelli and Sarah Brightman. The English translations are available online to get the gist of the lyrics.

I hope this helps you understand what is happening in your brains. Once you understand the flow of information in the brain, it is much easier to explain to others and to not feel like you are going crazy.

My best to you.

Mark thank you -- that explains me exactly yesterday at drs office. I was in the waiting room and I had earplugs in...I heard every noise and just couldn't stand it. The phone was ringing in the background, several different conversations...all of which I couldn't ignore even with my eyes shut. It was strange....overwhelming.

Does it take the brain a long time to be able to accept more and more? Is it a matter of training the brain to do that?

If I had a speech problem, then I would be in for speech therapy...right? So, why can't there be a rehab for overload??

Thank you SOOOO much for your post regarding people not understanding. It's nice to realize I'm not alone in feeling like an outcast because people don't understand how life altering PCS can be, and that there isn't a pill to fix it or a test to prove it!

Pcs
 

I have PCS and it has been 8 months since my accident. I never thought it could take so long to recover. I wanted to come on line to see how long it takes. My neuro Dr. told me it can take a year. My symptoms have changed some. Im not in the bad fog I was in. My thinking is clearer, but I catch myself zoning out all the time. I have trouble finding the right words to say and my spelling is horrible which is not a good thing because I am a writer. I have never had to google words for spelling. I seem to have long term memory but not so good at short term. My close up vision is good, my distant vision is blurry. so it keeps me from driving. I have headaches on one side of my head everyday. Some times I just do not make it out of bed. Im really trying to get better. I guess we all just want our lives back. I was hoping someone could tell me they just get better and better and back to how they were.

Your doctor is somewhat right about it taking a year. Nobody can say how long it will take. Some studies say that the symptoms that last after a year are often going to be long term or even permanent.

Most of the recovery from such symptoms is by way of learning work-arounds and other accommodations. There are many ways to work with the short term memory problems.

Have you had your eyes checked. Sometimes, visual therapy can be helpful.

I have serious immediate and short term memory dysfunctions but am able to function at a high level. I do have those bad days, but my good days can be quite good. Using the work-around skills I have learned, I can be very functional.

Do you have any history of prior concussions or even minor head bumps or impacts?

Head traumas are cumulative. Prior traumas can combine with your latest trauma and cause long lasting symptoms.

I have done extensive writing by using multiple displays. I use one for the work in progress and the other(s) for notes and research. Some computers come equipped for multiple screens. Others need a display adapter for the second screen.

It is well worth the expense. I am constantly correcting spelling. Spell check is a big help along with google.

Tell us about your biggest struggles. There are decades of PCS experience here.