fatigue treatment
 

what are the best ways to combat the ever present fatigue. getting enough sleep, taking supplements. eating very well, losing weight. I know the medications can make you tired. it's hard to figure out.

I'd kind of like to know the answer to this... or at least some suggestions as to things that may help. I know no treatment is cookie cutter, or one size fits all... but I'm willing to try suggestions

For me, fatigue has been a huge issue since my injury. I have no problems sleeping 8-12 hours a night plus 2 or more hours every day and still I'm dragging around exhausted all the rest of the hours I'm awake.

Clearly I'm getting lots of sleep, but it still doesn't seem like enough. I no longer remember what it feels like to be well rested.

I've worked with an OT for many hours on various pacing strategies. The doctors like to just tell me to "do less" but that never really helps. The only strategy that's really helped at all so far is a points based energy system similar to weight watchers, but for activities.

Basically you are allotted so many "points" per day of activities (as determined by my OT) and every activity is assigned a point value. Everything from getting dressed to doctors appointments to making meals to feeding my animals to getting groceries, etc.

Then its up to ME how I want (and need) to spend my allotted points each day. Some days you HAVE to go over because maybe a doctors appointment is worth almost your whole day's worth of points, so then you borrow from the next day and then you do less the next day.

Its common sense, obviously, but has been helpful to make sure I'm not over doing it too many days/weeks/etc in a row... as I am inclined to do.

As my OT has pointed out, I have 2 settings, asleep and full steam ahead.

My rehab doc also prescribed ritalin for me. It works and does make me less tired, but then I'm also more likely to overdo it. So I don't take the ritalin regularly. I use it occasionally if I know I have a day where I really need to be "on" and more awake and miss my nap. But if I use ritalin ONE day, I can count on needing 4-5 days to recover from it.

If it wasn't for the overwhelming fatigue and the headache that has been my constant companion for 2.5 years, I could probably deal with the other symptoms from my injury. But those two are the brutal ones that make me wonder how long I can do this.

Starr

I wake up tired. sigh...

it sounds like good advice and I will try it. I'm not sure how many points to apply to what but I guess i'll learn. I don't think I can take Ritalin because I take Xanax, but I don't know. you can keep going starr. you are strong. thanks for the advice.

it seems like a distant memory waking up and darting out of bed.

What you describe is what my husband experiences.

from what I understand, I big reason is the neurons that took over for the damaged ones have had to make new pathways which are longer than the original ones and even though one thinks "how much longer can it be" when it is millions of messages being sent, the energy used is significantly bigger than before and hence the fatigue. I just know it stinks.

I find that my fatigue relates to the quality of sleep I get, not the quantity. I can get 6 hours of good sleep and wake up doing great. If I struggle to get good sleep, I can sleep for 10 hours and be fatigued all day.

If I am struggling to get good sleep, I do better getting up and changing my pace. Watch some TV or browse online. Then, when I am feeling dead sleepy, going back to bed. I also need to be very comfortable in bed. A good mattress and soft pajamas with no strange sensations make all the difference. I can go to sleep on my back and wake up in the morning in the same position. It takes discipline to learn these sleep disciplines but it is worth it.

Do you use a special neck pillow?

I could have slept on a jagged rock before this happened and been fine. rats.

Before PCS, the brain was more able to filter out or ignore stimuli. With PCS, those little sensations are constant disturbances to getting a sound sleep. Removing those stimuli with a comfortable sleep environment helps the brain sleep undisturbed.

I can relate my experience: I was on the vitamin regimen and that did help lift the fog.

I was 25 pounds overweight and diagnosed with obstructive sleep apnea. My neurosurgeon placed me on a vitamin therapy rehab program. That worked very well, but now I'll get to the point.

The rehab was costing me 300 + dollars a month so I went to the insurance company for help. Happy days! They cover the rehab treatment! It took four months to work out the details and I stopped using the vitamins until I had a good procedure for getting re-reimbursed.

One year ago I changed my diet and I dropped over 20 pounds in that time. I noticed that even though I stopped the supplements the fog has not returned. My conclusion then, is that a nutritious diet can/will help your brain. I'm feeling like I'm in my 20's again with my new body (my old body).

I was able to lose that weight by eliminating wheat from my diet while eating 6-9 servings of vegetables and fruit each day (mostly). The fog did not return when I was off of the wheat. Other issues still persist.

The moral? Good nutrition is mandatory for your brain!
Jamie

Wish I knew the answers, I never get a good nights sleep, for eg last night was still awake at 4am, tried reading, didn't help so maybe got an hours sleep, then slept from 7-11:30, just got up.

Thing is too for me I shake and feel such fear when falling asleep and if asleep I'm woken up several times shaking and in a panic, that's how it feels, have to get out of bed, I just don't know what to do, I cannot control this whatever I've tried :( feels like every nerve in my body is shaking.

I eat very healthily, walk everyday, practice mindfulness...working on that...

Dr prescribed Ambien.

I went through years of horrible sleep. Of course I tried every suggestion that came my way.

This will sound really weird - and I don't recommend it (and I don't know how you could do this on purpose)

Back at the beginning of this year, I began having horrible nightmares. I asked every doctor I've ever known how to stop the nightmares. Naturally I got lots of medication recommended.

The meds intensified the nightmares. In the nightmares I was reexpeeriencing 60 years of my traumatic experiences - including re-experiencing the botched brain surgery that became my TBI.

My son who lives with me (who's about to move out) figured out that I would calm down when I was nightmaring - if he put on one of our favorite funny movies.
I've finally started getting some actual sleep when I started to devote the pre-sleep hours to finding funny stuff and laughing

Also (oddly) I discovered that any kind of meditation triggers the nightmares again.

Once the nightmares stopped, I've been sleeping much better than my years of horrible sleep.

This may not make any sense, I just figured I'd mention that wow, there was something that worked for this awful problem.

Brains are weird things.

This makes sense. The last things your mind is doing before sleep often impact how your mind functions when you are asleep.

I do good falling asleep watching TV. I have a TBI friend who has the same needs. Repetitive audio and visual sensory inputs allow the brain to relax. The program is still interesting but the brain knows what to expect so it does not need to be alert.

For some time, I would fall asleep watching a Celtic Woman DVD. I could turn it on and be asleep before the second song ended.

Finding these 'get to sleep' aids is very important. Our brains have often lost the ability to filter out thoughts or sensations so we need to set up the environment so the brain does not need to do any filtering.

Very interesting about the TV as I fall asleep much better sitting in my chair with the TV on, am thinking I'm going to have to sleep in the chair for a while as sleep issues are so bad.

My husband uses a white noise generator on his tablet for sound, when he sleeps. And even with that, he likes for me to leave the tv going on as background noise (TV kicks off on its own after a couple of hours of inactivity)

Falling asleep is rarely the issue for him, unless he's going through a boat of insomnia (but he suffers more from hypersomnia) It's more whether or not it's restful sleep.... and if he feels rested and like he's gotten enough. Tuesday, for example, he slept until noon. Got up and mowed the lawn. He was outside for a half hour, came inside and showered- took a 2 hour nap... woke up... ate... and took another 2 hour nap.

Agree about controlling the environment and sensations.

Before my injury, I used to wear whatever to bed, regular pajamas, sweat pants if it was cold, didn't matter. Since my injury, I can't stand to wear anything. (Sorry if its TMI! :o) Makes me feel like I'm tied up and strangling.

I also can't stand regular cotton sheets anymore. I can only sleep in soft flannel sheets... year round. Even during the heat of the summer. Drives my husband nuts, but he can cope or choose another room in the house to sleep in... his choice! :D

And for the best sleep, the room needs to be silent. No white noise from air conditioners, fans, traffic, snoring husbands. It also needs to be as dark as possible. Like when you open your eyes, its no different than when your eyes were closed kind of dark. Not a hint of light anywhere.

Luckily we live rurally, so many of the noise and light issues are easy to resolve, no street lights to worry about and after 11pm, there's very little traffic. Occasionally there will be coyotes howling that will wake me up.

But for many years before my injury I was a insomniac ... now since my injury, I am a much better sleeper than I was... I know that's not true for most people, so I guess I'm lucky. But I think I was always better rested as an insomniac than I am now, even though I sleep so much more now and sleep much more deeply now.

Like so many things since my injury, it all seems... backwards!!

Starr

I actually had a good night's rest after the 5th hormone was added to my daily regimen - it was the first good night's sleep that I had since the auto accident I was in.

I would sleep 8-10 or even 11-12 hours in a night and not feel rested.

Then, I started taking this hormone and BAM I remembered what it felt like to actually feel good in the morning.

Hormones have a lot to do with quality of sleep and duration.

I generally slept about 6-7 hours a night before the accident.

Now I sleep between 6-8 hours of sleep every night, I just allow myself to wake up naturally on most mornings, when I can. (Sometimes I sleep in on weekends and sleep for 9 hours).

I think we who have this injury should get endocrine or hormone test or whatever it is they need to check

I agree - usually you have to ask for it. (A list of the hormones that one needs to have tested is in a sticky at the top of the forum.)