PCSLearner,

Glad to hear your daughter is doing better. What neurofeedback is she doing? What results do you notice? How well does she tolerate it?

If your daughter wants to get off the Elavil, why has she not tried a more intensive vitamin therapy? Especially the brain vitamins, B-2, B-3, B-6, B-12, folic acid, thiamine, D3, E, C, and all of the other anti-oxidants?

You commented that you would not mind if she was on the Elavil forever. Vitamin therapy as a lifestyle has far more upside and no downside. I have been on it on and off for 28 years. My wife gets after me when I am off it. She can tell by my behavior and mood. Now, I have not been off my vitamin therapy for quite a few years. She makes sure of it.

I am surprised that she was on 20 mg of Elavil (amitriptyline). The common dose for PCS is 10 mgs. The anti-depressant effect is not the main goal. Just the head ache relief and insomnia.

Regarding triggers, they are not all bad. They can be helpful at understanding how she may need to moderate her life. Many triggers that I have can be easily moderated. The noise and other chaos triggers make PCS symptoms return but they also effect the non-PCS person, just not in a life changing way. So, learning to understand these triggers cam lead her to a more normal and calm life, for the rest of her life.

I know plenty of people who outright refuse to come into the city (Boise is only 300,000) because they are so accustom to their calmer life. They are nicer people, less aggravated by the little things in life. That is why so many want the more rural lifestyle.

It is the city/chaos lifestyle that needs a cup of coffee and cell phone in each hand.

Here in Idaho, there is a road we try to avoid because it is congested with people who are in a hurry to get to their cabin or condo to RELAX. We cannot figure out why they cannot start to relax as soon as they leave the city. It sure would make the drive much nicer.

I would recommend that your daughter understand that she is will have PCS for a lifetime. It will not necessarily be symptomatic frequently but she will be susceptible to a recurrence of PCS symptoms, especially when one of her triggers is at a serious level and she is in a weakened condition (getting over an illness, tired, hungry, etc.)

I learned a very basic understanding of this in my early 20's after visiting my mother for Thanksgiving. Her observations opened my eyes to a need to be aware of my triggers. I wish I had access to a more thorough understanding back then. My wife and family would have been spared a lot of grief over the first 15 to 20 years of my family's life.

I bet that some of the other PCS old timers will agree.

My daughter is the one doing the neurofeedback. She had a QEEG and the results were analyzed by Dr. Walker (?) in Texas. The neurofeedback doctor is targeting the frequency recommended by Dr. Walker. She watches a movie and when her brain isn't generating the right frequencies it goes dark. I'm not sure what this method is called.

She actually hates going and I am considering stopping. It always seems to make her headaches worse and she's usually irritable afterwords. In the past couple of weeks, I've noticed lots of improvement - but I don't know if it's the neurofeedback, the trazodone or just plain time. Ideally, I wouldn't have done both the neurofeedback and the trazodone at the same time - but I was desperate to get some relief for her terrible sleep issues.

She' been headache free for a few 4 days now - the first time since her injury in October. I'm really hesitant to want to take her back to the neurofeedback at the risk of reintroducing her headaches - even for a day or two. It's just so nice to have a much happier kid that is actually talking about wanting to go back to school.

That sounds like a form of volitional neurofeedback. Does the therapist try to teach her how to maintain the desired waveform?

It sounds like she may be struggling to stay focused. This is a common problem with ADD/ADHD. ADD/ADHD is a common reason for neurofeedback. I think there is a large overlap between ADD/ADHD and PCS symptoms. But PCS is not responsive to ADD/ADHD meds.

The struggle with PCS is often not as much about staying focused as it is being able to ignore distractions. My brain is constantly pulled to pay attention to something else. It is a primary reason I do not drive.

Has your daughter spent any time working on typing projects on the computer?

For me, the blinking cursor tends to pull my attention to the point in my work that needs my attention.

If I try to fill out a paper form, I get overwhelmed with the many blank spaces. Sometimes, I will cover all but one line and be able to focus.

If it is a form on the computer screen, the blinking cursor helps pull my attention to the blank space I need to fill in.

There are lots pf people who have learned the work-arounds and accommodations to get the jobs done.

What does she do to fill her day?
What kinds of tasks does she like?
or that will hold her attention?

Early in my PCS, I spent time sorting things. I had a coffee can full of a mix of screws, nuts and bolts. I sorted them into peanut butter jars by type. This task would have been tedious previously, but at that time, it had a sense of making progress. The can would empty and the jars would start filling up.

I have done hook loop or latch hooking. It involves picking the right color of yarn, hooking it through the mat and pulling it out. Joann fabrics sells the kits as do many craft shops. It is a much less intensive way of exercising focus skills. Probably a lot more affordable too.

The rehab hospital I went to used wooden puzzles to work on focus and cognitive problem solving. I also play a few PDA games. I can do FreeCell on a PDA but not on a computer screen. I think the larger screen causes too much eye searching.

I've watched my daughter teach herself guitar. The repetitive tasks of finger position for chords and the different picking routines would likely be a good exercise to try. Music is known to help the brain improve.

Maybe she can try some focus exercises at home with some of these ideas.

My best to you and your daughter.