Our psychologist today talked with another psychologist in the rehab medicine group at our children's hospital. They use trazodone for their patients that are having sleep issues. We are thinking about using it with my daughter.

Many of you have also mentioned you use amitriptyline. I know that medications effect everyone differently, but thought I would ask the following anyway.

1. Does anyone have any experience with trazodone? Like/dislikes? Side effects?
2. Has anyone used them both? Which did you prefer?
3. If you experience headaches, did either work for that, too?

Thank you in advance.

For those that might come across this thread in the future, I thought I would update this thread with our current experiences. My daughter's concussion was Oct 11, 2009 - so we are almost at the 5 month mark.

A month ago, we started my daughter on 25 mg of trazodone at night. I was told it would knock her out, but it didn't. On the advice of our presriber - we increased her to 50 mg. She tried that dosage for 5-6 days, but it made things worse - didn't sleep at all one night, and dry mouth/stuffy nose side effect. We put her back down to 25 mg and were going to re-evaluate. She's been on this dosage for 2.5 weeks now.

Things that I have noticed:

1. An improvemnt in her mood (not surprising because it is an antidepressent but we are using it at a really low dosage).

2. While she is still slow to fall asleep - it is better than without - perhaps 1 hour vs. 2+ hours.

3. I think she is sleeping better because she is much easier to wake up in the AM. Before I could barely brag her out of bed at noon with lots of fighting. Now, I can pretty consistently get her up by 10:30. Still not early enough for school, but a HUGE improvement.

4. Over the past few days, the headaches have greatly decreased. I don't know if it is due to the trazodone or just that she is finally starting to get better.

5. Memory - still an issue - but we are seeing improvements as well.

It is difficult to know how much the trazodone is helping vs. just time vs. a little neurofeedback or the combination of all of the above. I do know the trazodone is helpful for sleep as she did have a harder time falling asleep because she forgot to take it earlier in the evening. I do know she is much better than she was even two weeks ago. She even told me she is starting to feel more normal again.

FYI,

I take Neurontin to help me fall asleep. My mind and body do not want to relax. I take 900 mgs of Neurontin (gabapentin) 1 to 2 hours before going to bed. Without it, my mind is like it is on caffeine. My body also will twitch or remain in an alert condition.

The Neurontin helps my body relax. No side effects at all.

Feeling "more like normal" is music to your ears I'm sure!

That is a complicated cluster of variables: sleep, medication, time, and neurofeedback. Thank God one or some combination of these is working to help her feel better. This is an assumption, but I'm guessing you would like to know when some therapy could be reduced due to side effects and expense. At this point I would probably keep going with meds and neurofeedback for a couple of months or so? Then maybe drop one of the therapies at a time with at least a month between to see if there is a difference? OF COURSE see what your doctor thinks. I can not believe how many medications carry side effects that mirror symptoms of PCS. How are we supposed to know the difference????

Its a frustrating issue. Life keeps marching on and she may encounter a trigger, like going back to school, at the time you reduce one of her therapies so you will still not know definitively how effective it was. And then of course there are withdrawal symptoms to consider...ugh

My daughter is hell-bent to get off Elavil. I wouldn't care if she took 20 mg forever but she wants off and I have to honor her wishes to some extent. So she just went from 20 to 10. I don't mention it to her, but I'm basically holding my breath hoping she doesn't 1) experience increase symptoms from reducing meds or 2) doesn't experience a trigger that will confuse us as to how much the medicine may or may not have been helping.

I take 25 mg of Trazodone at night for sleep and it also helps my mood (due to the MS issues I think.) I'm very happy for you and your daughter that it's helping. It's an old drug, cheap and safe too, according to my MS specialist.

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.

hi Nancy

thats really good news slow improvement is improvement none the less with summer coming and the lighter mornings ect should all help with recovery

best wishes

Mark: As for the vitamin therapy-I've printed out the vitamin regiments you and others have posted, but the dosages seem so high that I've stuck with a multi. I will go over the dosages with her doctor when she calls about the thyroid testing and get them started. It sounds weird, but her lips crack when she takes magnesium. Anyone else notice that?

As for the Elavil, she was originally on 30 mg (worked up from 10). Our neuro said the antidepressant effects of Elavil don't show up until 100 mg. 30 mg gave her heart palpitations.

Triggers: I appreciate this view. I told her that her PCS will be just like the ankle she broke a few years ago that likes to remind her when she has pushed herself too far. Following your lead I mentioned that this might just help her keep herself in balance emotionally and physically. She seemed to think that was a reasonable suggestion.

I like your suggestions for therapy alteranatives (latch hook, sorting, etc.) My daughter is a drummer and has continued to drum throughout her PCS. Oddly it has never increased her symptoms and it is the only activity she didn't have to give up. I have often wondered if the repetition and learning new music has offered her some type of therapy. I also noticed early on when she had lots of eye twitching that she intentionally moved her eyes in an exaggerated way. I wonder if that, too, was a sort of self-directed therapy?