Sleeping problems

[Charlie15]

Looking for advice my husband had a brain injury July 21 . He is sleeping until 530 sometimes earlier will get up and go back to sleep for 1-2 hours about 830 am then will wake up feeling tired may doze off again . I have mentioned this to gp and they are looking at his meds he’s been tested for sleep apnea again waiting for results. It’s hard for him as he always says thanks for letting me sleep I just don’t know what I can do to keep him bed bit longer so he doesn’t nap as much

[MimiSpree]

Hi Charlie: You may find many posts about sleeping too much or too little from those of us with brain injury. However I can share my experience. Thinking back to six months after brain trauma, I was no where near being able to control my sleep. Part of it was discovering how much energy it takes to adjust to vision and mobility issues while upright. Another reason is due to pain: Every time I rolled-over on my injury site it hurt and I woke-up startled, and it was very difficult to go back to sleep. I lay there wondering if I was ever going to feel "normal" again, and worry, worry, worry. The third reason I preferred sleeping was due to good old depression: I hated my new "normal" and preferred to be in denial-dreams.

It took me over a year to figure-out my sleep solutions. A few are:

1. Sleep with the curtains open to let the morning light in;

2. Set my alarm for daylight and force myself to wake and have my tea or coffee;

3. I used cannabis an hour before I want to go to sleep. This allows me to go back to sleep after waking-up when I feel pain from rolling over. It's been a life-saver for me. I find that if I can get a good sleep, I can handle the shooting pains during the day. I stopped taking any pain pills since using cannabis ONLY before bedtime.

There was a seven month period when I couldn't sleep due to the reasons above. I was suicidal at this point. I refused to take sleeping pills while also taking pain pills, so my doctor suggested cannabis because I qualified for medicinal cannabis. Directly after trying it I have been 100% pill-free and I get a great night's sleep.

However, two things in your post touched my heart. I feel for our caregivers so much. Brain injury doesn't heal like a broken bone, or an injured or removed organ. I takes a sacrificial amount of patience. I wish our neurosurgeons would prescribe caregiver support, because it's absolutely necessary, even if it's just to support your ability to be patient during our slow recovery. There may not be a point in recovery when your husband will completely return to his old self, but don't despair, with outside support your relationship may become better than ever. For the longest time my husband AND I were in denial, and neither of us wanted to accept I wasn't going to be the same person I used to be.

Today I do accept it, and honestly I am more proud of myself than I ever was before my injury. I am proud of my husband too, for his willingness to ask for help. It's made all the difference in the world.

I am sending you a big bear hug and love.

[cat3]

This is to be expected in the early days but does seem excessive after 12 months. Do push for medication links m'dear. There's maybe a drugging effect from meds your husband takes, or perhaps a combination of different meds could be having a soporific effect. Certain medications can have quite dramatic side effects...

Otherwise your GP should be arranging for all appropriate blood tests and neurological investigations, and perhaps considering the sleepiness as a symptom of depression.

Wishing you well in getting to the crux of your man's troubling issue. Do keep us updated...

Cat x

[ArthurFudgeCake]

Sleep perchance to dream. Shakespeare.

Six years Frontal lobe damage, lucky to get a solid 4 hours in the night but fatigue has me napping 3x 1 hours per day. Circadian rhythm is broken,

Here's a few things that have helped a little over the years;

A) having a sleeping companion, but unfortunately an ABI and relationships are extremely difficult to maintain.

B) Working nonstop for over 12hours a day. Thanks to...

Taking 70mg dexamphetamine for the last few weeks (diagnosis of ADHD at the age of 42) and due to finish the titration on this next week, has had the unexpected benefit of halting the need of regular naps and sleeping for around six hours now!

TBH this doesn't feel like a sustainable solution and don't recommend it but it's been my journey, but wanted to share that fatigue and sleep is a double edged sword. My only real solution is to develop a PMA and a daily meditation practice, but that's my answer to life and everything these days.

[Skulls]

Hi Charlie15,

Yes, sleeping or the lack of it is a problem. I suffered a hypoxic ABI in 2018, after cardiac arrest. I am reminded of what I said to a visiting OT in early 2019 when she asked me about ambitions for recovery. I identified exhaustion as a major concern. It still is after four years. I am unsure if it will ever improve or I shall feel wiped out just as badly. My circadian rhythm was destroyed in hospital by four-hourly SATs checks and diabetes prick tests through the day. I was often unable to wake up for breakfast. I now go to bed about 8pm and am awake in the early hours. I remain in bed because I have little to do outside of it and it is warm. Sorry to appear pessimistic but you may have to adjust to a new normal. That being said, we are all individuals and a solution may be in a pill bottle. Good luck and Happy New Year!

[Leaf100]

Hi Charlie,

I will add a few things from my experience.

Do keep in mind that every injury is a bit different, and the impacts are different, even though there are similarities.

July 2021 isn't that long ago - he's still in the recent injury category, believe it or not.

I had a wicked time with sleep, and still do. Many of us become very sensitive to medications, and though I tried some and also proven off label uses of things not normally used for sleep, plus various sleep precursors like melatonin and tryptophan, all they did was royally mess me up. The rx based ones worked once, and then gave me insomnia, or insomnia with cravings for carbs - I was up raiding the fridge. Not helpful.

The melatonin and tryptophan gave me really disturbing dreams. Maybe I looked asleep, but I couldn't wake up and I really, really, really, wanted to.

Trying to practise what I was told was good sleep hygiene only aggravated me to no end.

My trusted neuro psychiatrist told me healing happens when you sleep, so stop worrying about when, just do it when I could. So that's what I did, and I still do.

I did find some things that help:

- using a blue light remover on my devices - aps like f.lux or twilight

- these are on a timer and slowly turn down blue before bed, blue keeps

you up - it is too much like daytime light outside

- sleeping in a dark room - blackout curtains if possible, no glow of a clock radio or whatever

- not trying to fight wanting to sleep when I am overloaded - there are times where I just need to sleep, couldn't stay awake if my life depended on it

- learning to recognize activities that wiped me out, so I can plan around them - I know I will be wiped out afterwards, and can try to rest up before so it isn't quite so bad

For me, taking GABA at night helps. GABA is gamma aminobrtryric acid, a supplement (not gaba pentin) Some of us can be low . It helps with stress as well.

There are a couple of things to watch with for medications.

One is they can make your eyes and mouth dry, which can scar your eyes and make you have tons of cavities. Use a good lubricant for your eyes and check out xylitol for your mouth - it's a sugar - don't freak out - the kind of bacteria that live in your mouth eat it, but can't digest it, meaning they die, meaning fewer or no cavities.

Have a look to see if long term use can compromise your liver or kidneys. Some of them do. Pain medications can be bad. Some also hurt your brain cells.

I say all this and must also say check with your doctor for what is right for you, find a good pharmacist - they can save you a lot of issues. Always also research any supplements with your pharmacist and how they fit - or not - with what else you take.

Most of all, be kind. The person with the injury needs to be kind and say 'ok this is where I am today, thanks body/mind/spirit for doing your best' instead of 'for xxxx sake, why can't I do what I used to, when I am I ever going to... hurry up and get better... blah blah'

Ditto you as a supporter - be kind to yourself. Some days you will have more patience than others. Do some things just for you - not only allowed, necessary, or you will burn out. You are also allowed to ask Headway and others what is available for you.

For example, if he is up and down all hours like a yo yo, and you aren't sleeping - sleep in another room if you need. It may be the kind thing you need - you get your sleep, he gets to let the healing process do it's thing - maybe now and then, but won't be forever. Maybe a nap now and then would be ok for you - or if you know he's going to conk out for 3 hours - go do that thing that he doesn't like doing anyway, but you do. (And I don't mean washing the floor cause oh! I have a moment.)

I have gone off topic so I'll reel myself in.

It's a dance is all. You need to kind of be open and roll with it. You'll get better as you try different things and kind of see how it goes. Coping skills and managing it better can make a big difference over time, plus of course any improvement that comes with healing.

Keep us posted,

Leaf

[Jowood29]

Hi, you are still very early on in recovery from a brain injury, some people need more sleep than others, you can’t compare any two brain injuries we are all so different. Sleep is when the brain and body does it’s repair, sleep and rest is medicine. I am 6 years on and still need to have a sleep and rest if I have over done activities, I get sensory overload. The first 4 years I had to have an afternoon nap, I would wake in the night and go back to sleep later. This is all normal.

[Jonty77]

hi Charlie (and everyone),

I don’t have trouble getting to sleep in the evening as I’m usually so exhausted. I do wake up most days at about 4am and feel wide awake. It’s really frustrating. I just lie there knowing I need more sleep but feeling so awake. After an hour or two I usually drop off again for a bit but then I wake feeling sluggish. I sometimes wonder if I should just get up at 4 and do a couple of jobs then go back to bed at 5 to get the extra couple of hours I need. I’m not on meds relating to my head injury so it can’t be that.

I do have a lot of anxiety and depression, so maybe my disrupted sleep is connected. I have tried not napping in the day and just resting without cognitive load, but it doesn’t seem to matter if I nap or not, I still wake in the night.

I have been learning breathing techniques and mindfulness which does really help, but it can be hard to do because it does take a certain discipline that I sometimes find it hard to bother with if I’m not in a great space.

I guess what I’m saying is I know the feeling of struggling with sleep cycles and fatigue and worry etc. it seems like it is pretty normal and there’s no magic cure. Maybe something someone says on here will help a bit, it usually does.

Take care.