Need help with sleep issues
 

My 15 year old daughter suffered a concussion 3 months ago and has been out of school since the injury. She is still dealing with fatigue, headaches, memory issues (along with many other executive function issues), and sleep issues. She is also dealing with anxiety about returning to school - both from a academic stand point and a social one. The school is very willing to provide her with whatever accommodations she needs when she returns.

Her sleep issues and fatigue are two barriers to getting her back to school even just part time. We have tried to work on sleep hygiene with limited success, tried doing relaxing things before bed, turned off all electronics 2 hours before bed and many of the other usual suggestions. We have tried melatonin and other over the counter supplements. I've given her Ambien. Nothing seems to help. She isn't on any medication other then tylenol/avil for headaches (but it doesn't really help), vit D, fish oils, vit c and sometimes vit b's. I've also given her mag/calc/zinc.

What has worked for you guys?

welcome Nancy
 

welcome Nancy


melatonin is band in the uk, I have taken it in the states ,it can trigger lucid dreaming which can be upsetting , its a catch 22 situation with worries about returning to school ect ,think your doctor maybe the best one to ask, too much too soon, may not help the situation

best wishes

Hi Nancy,

I'm on Amitriptyline/Elavil for sleep, headaches, and pain management. The neuro started me on 10mg every night, but now after 7 months, I'm up to 40mg. It's still a very low dose, and they said I could go up to 150mg and it would still be low.

I have very vivid/stressful dreams every night, and some nights I still don't sleep. I guess different things work for different people. The Amitriptyline really does help me sleep most nights, but some nights, nothing works.

Maybe ask her doc about a low dose of it? Some people are opposed to it, I think, but it has worked for me most of the time.

Keep me posted, good luck.

Thank for the suggestion regarding Elavil. I will bring that up the next time we talk medications. All of her doctors have been very hestitant to presribe her anything to help with the sleep/anxiety issues. The last person we met with was concerned that the side effects of most of the antidepresents are the same issues we are already dealing with. We didn't want to make them worse and in some cases the side effects are worse in people wiht MTBI. Based off our short experience with Ativan - I would agree. It had totally the opposite effect on her and made her have 4-5 hour long panic attackes. It was awful. The other sleep aids we have tried didn't help her fall asleep and made her more lethargic the next day.

The whole sleep issue has been very frustrating for us. We go round and round on it with the doctors and none of them seem to want to help her with it. They all insist that good sleep hygiene and a rigid schedule will solve her problems. We try and try but it doesn't help. They make me feel like this is teenage/behavioral/parenting issues and not a concussion issue. We never had issues before her head injury. She was my easy kid - driven, motivated, straight A honor student and very accomplished equestrian (no, she didn't fall off her horse, she stepped on the end of a heavy areana rake and whacked herself in the head!).

Nancy,
I do have trouble waking the next day. I don't know if it's the Elavil or if it's just the PCS. It's hard to say. While the Elavil may not always help me fall asleep, it does help me stay asleep longer most nights. I'm not calling it a wonder drug or anything, but it might be worth a shot.

My neuro says that Elavil is supposed to cover the three symptoms: sleep, headaches, and pain. It's definitely not knocking all three of these out in me, but I do get some mild relief with it. I guess I'm saying I'm better with it, than without it. As with any drug, though, I worry about being dependent on it. I can't sleep at all without it.

The sleep issue is frustrating. I never had any issues before the concussion with sleep. I felt great after only 6 hours most nights. Now, I never feel refreshed in the morning. It would be great to feel well rested just once! I haven't felt like that since before the concussion.

Nancy, I'm so sorry you are dealing with all this, and your poor daughter. I am praying for you both. I pray that the doctors will work with you and your daughter and that you can both find some relief and peace.

My neuro tried Nuvigil with me to help me with my lethargy. I did not find success with it and my insurance didn't cover it, but you may want to ask about it. It is basically a type of Amphetamine that is supposed to help *can't think of the word for people who fall asleep all day*.

I found that I felt to wiry on it, and couldn't sleep at night after I had taken it that day. I don't know if others have had success with it.

Keep me posted.

Thanks Kate. I appreciate the thoughts and prayers. This has been by far the hardest issue I've dealt with as a parent. My youngest has had a number of surgeries and tough behavorial issues before we discovered she has ADHD. All of that seems easy now.

I believe narcolepsy is what you are refering too. Once my daughter is able to fall asleep, she generally sleeps through the night until I awaken her the next day. She could easily sleep 12 hours a day. I purchased a product by ZEO to track her sleep - so I know how much light, deep and rem sleep she gets and how often is wakes up. She always tells me she doesn't sleep well and I think that is because of the about of REM sleep she is getting 30-35% each night. Her mind seems to be constantly going. A lot of her difficulty falling asleep is also turning off her mind. Some of it is anxiety and some of it isn't. I just can't help thinking that if we could improve quality of sleep, her fatigue would lessen and then perhaps her memory would improve.

a super small amount of offlable use of Remeron helped me a lot to sleep through the night.

I think it is the most potent sleeping aide there is, and it is not addicting.

Than you for all the suggestions.

Is the constant battle to get my daughter out of bed normal with PCS? It seems she is never awakens refreshed. If she doesn't get enough sleep it is nearly IMPOSSIBLE to get her out of bed. I am trying to figure out if the fatigue is just 100x worse because of her injury or if I am also dealing with teenage issues. Before her injury - she was able to drag herself out of bed with far less sleep.

I've had a couple of different doctors tell me to put her on a rigid sleep schedule -to bed and up at the same time every night. We try, but my issue is that with the insomnia - it takes sometimes 2-3 hours (sometime more) to fall asleep - so she doesn't get enough sleep and the battle ensues.

Suggestions/recommendations? Is the rest more important than the darn schedule?

A few thoughts:

Insomnia is a typical symptom of PCS, in the begin of my onset I struggled for many month with a similar sleeping pattern.

It is although typical to awaken not refreshed after a night of 8 hours of solid sleep with PCS.

Many of the suggestions you received from the board members and from her physicians are all well intended and may ultimately help your daughter to regain a normal sleep pattern , but after all... healthy sleep may not change the bottom line of PCS symptoms. Your daughter will very likely overcome the PCS with passing time and I would not focus entirely on sleep as the one solution.
Said that, a very low dosages of Remeron (7.5 or 3.25mg) helped me to regain solid REM sleep. It may be the only medication that promotes REM sleep.
Controlled daily exercise was another helpful tool for healthy sleep.

Agreed. Sleep would definitely help, but it's not going to resolve all of her issues. It's just so frustrating to have her be dead tired, head to bed and then still be up 3 hours later. Tonight it's a headache keeping her up and worring about the barn. If she gets mad or upset before bed, there is little hope that she'll fall asleep in a reasonable time period. She tells me she wants a sleeping draft like they use in Harry Potter.

For those that have tried neurofeedback - has it helped with sleep issues? I am considering have her give it a try and having a QEEG done, but hestitate because of the cost. The neuropsychological exam already cost a ton out of pocket.

If what is truly required is rest, time and patience to heal, I'm I just throwing my money away as an attempt to try SOMETHING that might help her. As a parent, it is so hard to sit back and not be able to do anything.

Hi Nancy,

A few TBI patients never regain the capacity to enter REM sleep. My brain just can't go there and I wake everytime I approach that part of the cycle. So, your daughter's capacity to enter REM sleep is encouraging. Does she dream? What sorts of dreams?

Once you get her neuro-psych results, you'll have a better idea of what areas have been most damaged. That will make it easier to understand what's happening and to target therapies.

Her fatigue may not be solely the result of poor sleep quality. When one has a brain injury, everything one does (talk, walk, eat, etc...) takes so much effort that exhaustion can be pretty much inevitable. At this early stage, let her sleep as much as she likes and don't expect much from her during the day.

Cheers

Yes, she dreams. The types of dreams vary. Some are pretty typical for her, others are related to her memory failing, and other are truly bizare. Does the frequency she is dreaming and the types of dreams indicate anything?

I have had mostly 'stressful' dreams since my injury. Not quite nightmares but definitely stressful. They appear to coincide with other sleep disturbances, like body twitches, legs kicking, etc. Some appear to be breathing related. I have some Central Sleep Apnea. My sleep and dreams have improved greatly since adding B-2, D3, Omega-3 Fish oil with high concentrations of EPA and DHA, testosterone and DHEA to my already extensive daily supplement routine.

My sleep will predict my function level during the day. If I twitch and such, I will have a bad day. If I have stressful dreams, I will also have a bad day.

I can also have a bad day without these sleep problems the night before.

Good sleep hygiene is highly advised. No caffeine at all. Limited intense sugars. Low glycemic index foods should be primary nutrition from dinner and on.

I do well with peanut butter and cinnamon on crackers or toast as a after dinner snack. It sticks with me through the night. Cinnamon can help stabilize blood glucose.

Medium Chain Triglycerides (MCT's) can be helpful as they help establish ketones that some injured brains metabolize better. Do a google search for MCT oil. MCT's are a primary focus of a ketogenic diet used for some epileptics.

Hi Nancy,

As Mark says, TBI dreams can be disturbing. However, dreams of any kind are a good sign as dreaming requires quite a lot of brain activity.

I asked what kind of dreams to differentiate between REM and non-REM dreams. While REM dreams tend to be abstract, non-REM dreams tend to be a more literal working through of the days event. The former requires even more brain activity than the latter and should be viewed as encouraging.

Hey Mark,

Thanks for the info on that oil. I'm going to give it a whirl.

Cheers

You all are a great source of information! In all of my sleep research (I've pretty much research anything to do with my daughter's issues), I never realized that you could dream in non rem sleep too.

She's definitely has some pretty bizzare and intense dreams. They don't freak her out, but the content is a little disturbing at times. I think they are being less so, as she hasn't mentioned strange ones in a while.

I have an appointment scheduled with a neurofeedback guy. He the first person willing to help her with her sleep issues. I hope it is helpful.

There was a really interesting documentary on sleep on PBS (I think) not long ago. There was an informative section on brain damage and it's effect on sleep and dreams. If I think hard, maybe I'll be able to remember the title of the show.

Cheers

PBS has a web page for NOVA that list the sleep issues. It may have some video clips of the broadcast.

http://www.pbs.org/wgbh/nova/sciencenow/3410/01.html

Here is a link to an interesting article about the Ketogenic diet. The kids on the 80% fat diet have minimal cholesterol problems but excellent response in reduce seizure activity.

http://wcco.com/health/high.fat.diet.2.1436243.html