Trazodone experiences?
 

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.

thats realy good news
 

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

Vitamins, Elavil, Self Therapy
 

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?

The dosages of a multi are usually very low. Very few of the vitamins have any over dosage problems. There used to be a concern for B-12 overdoses but that is not a concern any more. If you look at the minimum dosage sizes you can buy each vitamin or supplement in, you will see that the manufacturers are within the dosage ranges I have mentioned.

Magnesium needs to be combined with calcium. Some calcium comes with magnesium already combined. I don't know if the lip cracking is related. Never heard of that before.

Have her eyes settled down? Nystagmus is a symptoms that is common to PCS.

Have you or she tracked her symptoms with her cycle? The ups and downs of hormones may be related. I've been reading about progesterone. Its neuro-protective value is interesting. It surges the two weeks before a woman's period. The other two weeks could be more symptomatic. Just another thing to consider.

From what I see on this forum, it appears that teenage girls have more PCS struggles. Could their body's changes be part of the difference? Worth considering.

My best to you and her.

Nystagmus, Teenage Girls & PCS
 

Nancy we have hijacked your thread. Something tells me you won't mind as many of these issues are pertinent to your girl as well.

The nystagmus has settled down for the most part. She had a recurrence for about a week when she went from 30 to 20 mg. of Elavil and now again when she went from 20 to 10. It usually only happens now when she has been reading for awhile, especially if she is reading for homework rather than pleasure, and if she is tired. Her neuro opthamologist was a total jerk ("it's all in her head") even though she did have some atrophy on optic nerves and slowed response on the evoked potential test. He didn't see any need for therapy. The neuro continues to ask about it at appointments but doesn't believe there is any need for therapy at this point. I don't know if it would be worth a 250 trek to another neuro opthamologist?

Teenage girls do seem to have a lot of problems with PCS! My daughter has the worst symptoms during the week prior to her period. It's more complicated in her case, however, as until now she is the only female on her dad's side of the family (3 generations) without menstrual migraines. Her neuro thinks the concussion "reminded" her brain that it is supposed to hurt. Outside of the typical concussion headaches she had one migraine and it fit the description of menstrual migraine. She may get migraines monthly, maybe never again, maybe occassionally. We just have to wait to see.

I'm struck by how the high-achievers seem to be so severely affected by it. I do not for one second believe it is purely psychological, but I do wonder if the profound sense of loss exacerbates the symptoms. The young ladies on this forum are facing identity-changing circumstances at a time in life when your outward identity is everything. If you define yourself as a female athlete with strong academics, it's tough to lose it all in one instant. They go from the top dogs at school to complete question marks. Where do they fit in? Who are their friends? What do they DO? She has had teachers and other students make HORRIBLE comments to her ("are you going to die or something?" "do I need to talk slow to you now" "why are you making this up, nobody has a concussion for this long"). People seem to enjoy letting her know just how far down she's fallen in the pecking order. It's not all bad, though. She is learning early who her real friends are and, as we've discussed before, she's learning a lot about compassion. She'll be stronger for it.

Psychologists will diagnose many PCS subjects as schizoid (loners, lacking social connections). I have always thought the schizoid is a follow on symptoms rather than a primary symptom. We tend to remove ourselves from social settings due to the negative reactions of others. We would prefer to be engaged socially but the frustration prevents it.

The high achievers are also the most difficult to get a sound diagnosis of PCS. The professionals see the high functions as 24/7. They do not accept that the high functioning is not the normal or that it is necessary to put extraordinary effort to achieve the high function that was very easy pre PCS.

My biggest struggle was learning to study. I hardly had to crack a book pre PCS. My memory skills were outstanding. Some casual review and I was ready for finals. I challenged freshman algebra the second week of class and got an 85% on the final. Took sophomore geometry instaed. Had straight A's (93% GPA).

Concussion first quarter of sophomore year. Grades fell apart. Freshman year I had been given the nickname 'brain'. Sophomore year, classmates were complaining that they could not cheat off me because I was struggling to take tests.

Even when I studied harder, I struggled with tests. The stress of the testing environment froze my brain. I would have blank stares at the questions.

It is unfortunate that schools teach to the test in a way that makes it difficult for the brain injured to compete. I am sure she still exhibits her intelligence, just in a different way. Not the 'one size fits all' way of classroom schooling.

Remind her that there are two kinds of high achievers, those who can get good grades (good at memorizing facts) and those who are truly intelligent and understand the subject matter. The 'good at memorizing facts' students tended to be more snobbish. They were achievement oriented just for achievement's sake. The truly intelligent achieved good grades just because they could. The latter still understand the information but struggle to regurgitate it on cue.

The intelligent guys tended to be cut-ups or nerds. I never did figure out the intelligent girls. Most of the high achieving girls I knew were of the snob variety, except my girlfriend. At a 20th reunion, those snobs were still snobs. There were popular with classmates snobs and popular with teachers snobs.

High school can be such a challenge. The 'on cue' issue also effect the social settings. Friends will want an instant response.Maybe once she has sort out or made sense of the conversation, she will be able to respond. People tend to think this slowed reaction is being dumb. In reality, it is just a slower, more diligent effort at understanding the issues.

before my recent injury, I would be the first to respond or even break into a conversation that was going too slow. I had "important information to tell." Now, as I have had to slow down with my responses, I don't talk over people as much or just plain talk too much.

Even with my weakness at recognizing social cues (PCS), I still behave better in social setting due to my need to have patience to listen and understand others.

Her social circles will evaporate the summer after high school graduation. Help her make it through those years and she will be fine. Help her focus on character development rather than social connections. Here in Idaho, the Dairy Association gives out an award for overall achievement that is based on character values. Volunteerism is a big part of their criteria. The Distinguished Student Award recipients often work with younger or disadvantage students or people groups, mentoring, etc.

Finding these opportunities for her will fill her needs to have social connections, except her social connections will have strong benefits for all concerned. Working with adults will give her a better chance of not being ridiculed. Peers can be so petty.

I watched my daughter who had some learning difficulties flourish outside a school environment. The girls at school could be wicked. The constant grade competition is inappropriate.

Mark - I totally agree! I think that is why the concussion clinic dismissed my daughters PCS as psychological/behavioral issues. They looked at the scores from the brief cognitive screening the neuropsychologist did and said she was fine. They told me they had kids functioning in school with lower scores than hers and she should just go to school. They failed to look at her as individual and understand that for HER, the decrease is scores was has having huge impact. I still don't understand why they thought she was "cognitively fine" when she couldn't remember things from day to day. Maybe there definition of cognition is different than mine.

PCSLearner - From what I have read, adolescent girls take the longest to recover from PCS. If you are a high achiever - PCS symptoms are worse. I also agree with you on their lose of identity. That is exactly what my daughter experienced.

I think being a high achiever with PCS is like having a high powered sports car that has tires with slow leaks. You can keep filling up the tires and drive a bit but you never get the full performance.

I can imagine the identity issue. My withdrawals have been in steps. If my life was built around friends, I can see how miserable it would be.

High achievers, girls and PCS
 

If it is true that high achievers and girls seem to be particularly affected by PCS, this is interesting. (If anyone has any data on that, please pass it on.)

I think that the first scientific explanation to consider would naturally be that those groups are somehow more affected by the condition. By this I do not mean that they just make more of a fuss over it. I actually think that they could be worse off.

The high achiever might have the sort of mind that is particularly vulnerable to trauma. For instance, neurological pathways involving the neurotransmitter glutamate, which is involved in memory, might be more active in high achievers. That would mean that there is overall a greater concentration of glutamate in their brains. When a trauma occurs, glutamate is released and, being toxic, might cause at least part of the physiological damage of PCS. That would be more in people with greater amounts of it, ie high achievers. This would mean that being a high achiever might mean a greater amount of damage in the brain when it is traumatized.

In a similar way, girls might be more susceptible than boys to brain trauma. Their heads on average weigh less than those of boys. So, for a given impact, girls heads would be accelerated more causing greater damage.

These reasons might not be the whole explanation but I think that they are more plausible than having to say that differences in recovery rates are due to psychological differences.

If anyone has any hard data on such differences in recovery rates, please pass it on. Thanks.

CS

I do not think the head size has anything to do with the girls with PCS issue. I think it has more to do with fluctuating hormones. The balance between progesterone, estrogen, testosterone, etc changes throughout the month for women. These same hormones effect how the brain functions. If the balance get too far out, symptoms would be greater.

As far as the high achiever with PCS issue goes, my neurologist said that my brain is very high powered frontally. My concussions have left it underpowered in the rear/occipital lobes. This leaves a serious timing differential between the two lobes that disrupts the proper functions. I also have a damaged 'gating' system that blocks or allows information to flow to the frontal lobe.

The occipital lobes can easily get overwhelmed with information. This prevents any of the information from being processed, sort of like a bottle neck.

The high achiever also has habits of depending on the high function levels. If these expectations are maintained, the errors are blatant. If the high achiever is able to lower their expectations a bit and moderate the environment, some of the frustration can be reduced.

Sounds exactly like the conversation I had with my daughter last night! I keep trying to tell her that her grades don't matter this year. Her college adviser will write her a letter of recommendation and explain the circumstances of her freshman year. The colleges won't care.