Hey,

So what exactly are your doctors telling you to do for treatment? and what to avoid? I am scheduled to see a neurologist but its not for a few months. I've read that when an NHL player is diagnosed with PCS they are told to do nothing and think about nothing until they are symptom free...is this along the lines of what your nerurologist has told you? Any info would be very helpful.

Nitro

The major influence on my progress includes the care of my family physician, Reiki treatments and the care of an ostepathic therapist. See details below.

I have been under the care of my family physician since the beginning and see him weekly. During this time he consulted with a concussion expert and I also was assessed by a neurologist. So the consensus is rest until you have no symptoms - rest meaning: no television, reading, computer, etc. and yes, even thinking is discouraged. This also meant not pushing myself around the house doing chores and cooking,etc. as all of these things involve thinking. I also stopped driving and cut out all exercise accept gentle stretches with help from my massage therapist. During my recovery time I rarely leave the house accept to go for appointments and much of my time is spent in a quiet, dark room.

Doing this for many weeks allowed me to slowly start to try "new" things again. In the last few weeks I have progress from feeling nauseated after reading for 5 minutes to being able to read for 30-45 minutes. I can also watch a movie, bake occasionaly and I've started doing some minor chores like laundry and dishes. Before I couldn't even bend over to pick something up without getting dizzy and losing my balance.

The doctor first gave me Relpax (for migraines) which somtimes worked and sometimes not so much. Recently he prescribed nortriptyline (10mg) to help with the migraines. I have felt some difference in the strength and frequency of my headaches and they are now manageable with an occasional ibuprofin (Advil).

I have also had success with Reiki treatment (energy) on a weekly basis which has decreased the strength of my headaches & nausea immediately after the treatment and have made me feel more alert at times rather than dazed.

A therapist using osteopathy techniques treats me almost weekly. I can't quite describe it like the therapist does but the goal is first find the areas that trigger the symptoms and also to get things moving in the areas where I hit my head. I have to tell you the treatment is very cool - I've experienced a panicky feeling when he gets close to the area that was hit and if I'm very relaxed and aware, I can feel the movement in my head and my entire body. My nausea and dizziness have decreased because of this treatment as it calms the nervous system.

On my own, I have discovered that small and frequent sessions of meditation and rest are best. It also helps to practice positive affirmative thought patterns i.e. "I now allow myself to heal", "I trust the process of healing", etc.

Something that may be helpful is to keep a daily record of your symptoms i.e. what they are, when they appear and the duration. Both the osteopathic therapist and my physician has said this is helpful for them. It also allows me to see the progress eventhough it's slow, it prevents me from thinking that things will never get better.

I hope that helps

One thing I would like to suggest when it comes to going back to work.

If there are things you can start to do at home. Or even if you can
go out say to a store and do some things that would be close to
being in the office again. I would practice this for say 15 minutes
at a time to get ready.

I have a job were computer is necessary. Working on a laptop is something
that is easier for me. Being in a lower lite atmosphere helps me.

But if I have to be with a group I make sure I can do quieter things.
Then I also make sure I can take small breaks as time goes on.

I am a parent advocate, so its not unusual to find me with a group
of 10 people in a room. If it gets to loud, I've warned my parent
ahead of time. I might call a break for me. As much as her.

Donna

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??