Sleeping so so much zzzzzzz: My brother is 18 months... - Headway

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Sleeping so so much zzzzzzz

Rayoflight123- profile image
22 Replies

My brother is 18 months post brain injury. Most days he’s on snooze mode. When I say this I do mean he’s snoozing all day - eyes shut etc. It’s like he’s half asleep - he will respond if you talk to him. Often he can’t recall much about these snooze days. Then after 4 or 5 days he really wakes up for a day. He’s chatty, intelligent and so much more himself. Then the next day he’s asleep again for best part of a week. It’s so hard to be positive on these days. Has anyone come across such profound fatigue ? Does it improve? I can’t help thinking there’s something underlying causing this fatigue…..

22 Replies
pinkvision profile image
pinkvision

Hi I recognise many of the symptoms you have posted in all your posts. This excessive sleep period will pass but it takes time, you will need to be patient. The time scale is about 3 years from my experience where it gradually improves during that time. The underlying issue is the brain injury.

pinkvision profile image
pinkvision in reply to pinkvision

youtube.com/c/ConcussionTal...

Hi listen to some of these to get an idea of brain injury it may help you understand the variations and complexities and also that there is hope and a way out.

Sambo73 profile image
Sambo73

Hello, our son sustained a brain injury in 2015. I would go to work on a morning and he would still be asleep when I got back early evening. Over the last year and after he chose to stop his medication he has improved, and now gets up through the day. I once got told by a consultant that brains are very clever, and try to find a way to heal themselves. Maybe sleeping is helping the brain to improve? It can be very worrying, but over time you just kind of get used to the new person that is here. Take care, Sam x

Rayoflight123- profile image
Rayoflight123- in reply to Sambo73

Thanks very much for tip about brains mending. It’s very helpful

Skulls profile image
Skulls

Fatigue is a common symptom, I gather, but we are all individuals. My own fatigue shows no sign of diminishing after nearly four years and, if I don’t have my daily “second” sleep - late morning or early afternoon, I am wiped out for a couple of days afterwards. I am told my mood is not very good when tired - I get ratty. I now accept the new routines and don’t try to fight them

Nafnaf87 profile image
Nafnaf87

Hi, 24 years ago I slept an awful lot, maybe 18 or 20 hours a day in the months after my accident (Glasgow Scale 8). After a few months I went to the family company offices on a daily basis so was notionally awake, but actually even though my eyes were open and I was somewhat responsive I was asleep.

This improved slowly and at the time I had a family who supported me.

I have documented in other posts on this site what has happened in the last 5 or 6 years since my father passed so I won't go into it again, suffice to say I have been dumped and find it almost impossible to get help and support.

Basically the fatigue goes on, sometimes better sometimes worse, and I sort of sleep 10 or more hours a day.

Whatever happens please, please, please continue to support your son, he is going to need it.

Best wishes

Michael

Rayoflight123- profile image
Rayoflight123- in reply to Nafnaf87

Thanks for the reassurance . I am sorry you have been fighting on alone . I hope things change for you.

Creativity8 profile image
Creativity8

Hi,

My consultant explained it this way. When you have a broken arm you put it in a sling to rest it, a leg in a cast etc but you can’t do that with a brain. The only way it can rest is to shut you down. Think of sleep as natures sling for the brain.

Also sounds like your brother is in a boom and bust cycle. Over doing it on the good days and paying for it with exhaustion afterwards.

It’s all about getting the balance right between rest and activity, in order to get a similar amount out of each day and to recover after sleep. And by activity, I mean tiny tiny things compared to what you used to be able to do. Then hopefully over time his tolerance and capacity will increase.

Recovery for me has been long and slow but 6 plus years on I’m still improving.

Take care and good luck.

Rayoflight123- profile image
Rayoflight123- in reply to Creativity8

Thanks. The boom and bust resonates. But how can you live and avoid this?

Creativity8 profile image
Creativity8 in reply to Rayoflight123-

As I like to think, I live by the three P’s. Prioritise, Pacing and Patience .

Prioritise the most important thing to you want/ need to achieve that day/week/month... Over time you are able to do more so you can prioritise more.

Pacing. Only do as much as you can that still enables you to recover in a reasonable amount of time. Hold activity levels stable for 1-3 weeks and then increase activities. This will take a lot of trial and error and will change over time. I can still recall feeling dreadfully ill after cutting four cherry tomatoes in half! (And by activities I mean exposure to sound, visual stimuli - all my books live behind cupboard doors)

Patience and lots of it ! It’s hard not to do as much as you want to do. It’s hard to do even less than you think you can. But whenever my neurophysiotherapist sets limits, no matter how obscenely small, she has always been right.

And sometimes over do it, enjoy life but know you will have to pay the price so put survival strategies in place.

I’ve just reread your original post as I’m aware I’m writing about me and not holding your brother in mind very well. ( Writing is still very challenging for me) Have you thought about his surroundings? Sound, light, visual stimuli? Is he better in a plan room with no objects? Is there fluorescent lighting?(my kryptonite) Are there patterned furnishings around? Or bright colours or patterns? TVs, radios, iPads ? Music? Even paint colours have different affects on the brain. (Magenta takes my legs out) I’m gradually changing my home so that it’s more and more soothing for my brain. I recently had to ask someone not to wear their stripy shirt again because it was shutting me down! Ooo and my neurophysiotherapist taught me to identify activities that sooth my brain and those that challenge it. So using soothing activities after challenging ones helps to restore me quicker.

Creativity8 profile image
Creativity8 in reply to Creativity8

Ps. Sorry if I’ve duplicated what others have written but I have to limit what I read. That’s me prioritising.

Rayoflight123- profile image
Rayoflight123- in reply to Creativity8

Thanks creativity. These are all amazingly helpful points…in fact I was wondering when my teenage daughter was blasting the radio out next to my brother’s ear this morning whether this was a good idea!! I didn’t realise colours could have an effect!

Writeronstack profile image
Writeronstack in reply to Creativity8

Soothing activities resonates. Today I cleaned and sharpened a pair of secateurs. That was SO soothing, I can't tell you!!

Now that I have found it, the gardening equipment will be cleaned and sharpened frequently. :)

Also, yes, the fatigue - I ration what I do, and address only what is really bugging me that it's not done. . .

That seems to work, though if I do more than I can handle I definitely pay the price.

This has been a really useful thread for me to read. Thanks for being here, everyone.

Leaf100 profile image
Leaf100

Hi Ray.Sleep is when the brain heals.

He may find being in the dark, not listening to TV, not listening to music, is helpful. The less the brain has to process, the more energy it has for other things.

Dark glasses can help. The ones with the grey lenses, because it cuts contrast.

He should also plan to rest instead of fighting it.

If he is asleep but still upright, get him to go to sleep and rest. He needs it.

He may benefit from seeing a neuropsychiatrist. They understand the physical aspects if the brain injury and can rx medications , there are helpful ones. A specialist is needed. Don't freak about the psychiatrist bit, historically medicine shoved anything not related to burbs, courts, and braks into that category it is also true that a bi person feels air if grief for their old self at some point, and may become depressed . The neuro psychiatrist can manage that as well. It is tricky for others to separate the bi symptoms from the psychological ones.

The cause of the fatigue is the brain injury.

It is also common for other systems to not be regulated as well as before - adjusting to changes in temperature, changes in weather, thyroid, etc. For example, if he exerts himself he may get dizzy, he may overheat - all sorts of quirky things. Again, an experienced neuropsychiatrist is a big help ad they will gave seen it all before.

A bi person often does feel like they are going mad because of all the changes that are happening. They will likely not tell you, though. They may not be aware, they may not have the words, they may not be able to get the words out.

Stay close, be supportive, do what you are doing by checking things out. It is not an easy situation and it is truly quirky . Family support is a huge help.

Headway will have resouces for you to read.

Healing is measured in years. It is not a straight line, nor is the journey well understood. Every person is different- it depends on the injury and what the person did before (ie which parts if the brain were more in use). Some heal faster, some slower, and no one knows why.

Take care,

Leaf

Rayoflight123- profile image
Rayoflight123- in reply to Leaf100

Leaf thanks for amazing help. Especially regarding neuro psychiatrist - how will I find one of these? Also for reminding me that everyone is different and that there are quirky issues I was not aware of.

My brother had 6 brain ops in as many weeks so his brain sure has had a hammering….

Leaf100 profile image
Leaf100 in reply to Rayoflight123-

Poor guy, that's hard to go through. Hard for you, too.

If you live in the UK, call Headway. The number should be in a link to the righrvif the page if you are on a desktop. They pin it a lot of places. They should be able to give you names of those available in your area and tell you how to get referred to one.

If you live in Canada or the US, search for brain injury society, or brain injury association plus you location, and see what comes up.

In Canada, where I live, the societies are regional. They are very worth checking out as people there will know a lot about which docs to see and how to navigate the system. They also know about programs. Yes, there will be programs for family as well. You also need support.

In my case I got the name and specialty of the doc I needed to see from a case manager at the society, and then badgered my gp to refer me.

You may find you can get a referral easily and you may have to be like water - persistent and finding ways around obstacles.

He may have already been seen by a neuro psychiatrist as part of the hospital team, in that cade you should be able to speak with him or her. Make it clear you eat your brother followed ongoing and go to some appointments with him.

Advocating is really necessary. There are expert carers here who do a lot of it, continuously, bless them.

There is also a lot of info on various websites and on YouTube, just make sure you check the source us some official bi page or hospital page. There are also a lot of businesses making wild claims to sell things. If you run into something you can post here, a lot if us have tried a lot of things, and generally someone will gave tried it.

Ig, neuropsychiatrists are also good at getting referrals to other things happening.

There are also neuro psychologists who may do some testing - they do not deal with medications at all. Since your brother has had surgeries very likely he will need medications and ongoing monitoring. It can take a bit to figure out what works, and a lot of people get helped a lot with medications. People with bi's are sensitive to medications, just so you are aware ... meaning they may need smaller doses than the general public. Again, the neuropsychiatrist is really necessary in the long run, in my experience.

Start with Headway, or, your local brain injury society, Keep a log of the date, time, who you spoke to, and notes as you go. Also keep a calendar of his appointments and keep them. This info will help a lot in unexpected ways, even sometimes years later . Don't throw any of it out.

Also, pace yourself. Find things that feed your soul. This is a long haul.

Leaf

Gordo6500 profile image
Gordo6500

Hi Rayoflight123, sounds like his brain is still repairing it self . After my tbi I was extremely fatigued and weak, I researched and found that your brain will draw and use all the nutrients in your body to repair it’s self. Check out this book , When Brains Collide by Dr. Michael Lewis , you can go to his web site also just look him up. He has a protocol using Omega3 fatty acids to heal the brain , I used it myself with great affects. I’m almost 2 yrs. post tbi and pretty much normal . Most neurologist’s have no idea about nutrition . Hope this helps your brother.

fity123r profile image
fity123r

hi this happens to my husband its 20months in to his brain injury and his sleeping all the time on some days his very very chatty and doing things just the way u describe but than he will sleep for more than 18hrs

my husbands on alot of sleeping pills because when he had the brain injury he would not sleep for days we had a review for his sleepin pills and some have been reduced

i do agree with someone here about the omega 3 they actually have worked for my hubby iv been giving him them for the past six months and i have seen a change in him eg memory concentration attention i also give him neuromind suplements they have helped alot to

is your brother on any sleeping medication or anything that makes him drowsy like melotonin lorazapam?

Rayoflight123- profile image
Rayoflight123- in reply to fity123r

Thanks fifty. Brother 20 months in too. He’s not on any sleeping meds or any meds that make him drowsy x

thedragon profile image
thedragon

There are some brilliant answers on here to your question and I haven't anything useful to add, except this has helped me tremendously, I'm 2 and a half years down the road and still tired. Seems like that's ok and I should stop fretting about it. Thankyou all ❤❤❤

sealiphone profile image
sealiphone

I had two brain hemorrhages, the first Nov 2002 and the second in 2004.

I still experience the symptoms of ME & CFS, when doing certain activities and I need to avoid those activities and particular locations.

This means I am severally limited in what I can do but there were many improvements which occurred after my first bleed.

After my first bleed I was incredibly tired and 'out of it' and during the day when my wife was at work I would sit day dreaming and sleeping until she returned home.

I did take a Omega 3 & 6 supplement, which may have helped but for me it was exercise which had the biggest positive effect.

Every day my wife would make me get up with her and I was at the local swimming pool by 9am. It felt awful before I swam but I did find I was more alert during the day.

I was fortunate to have the help from the ABI service some 4 years later and attended a support service for patients with the symptoms of ME & CFS and exercise was suggested as a positive thing to do, along with a healthy diet etc.

The brain needs to rewire itself after a part of the brain has been damaged and this can take up to 4 years or in some cases even longer.

I go to the gym 3 times per week and it does 'perk' me up and gives me more energy.

I'd say that the input from a specialist service is essential, as they can understand brain damage, were a GP and clinical psychologists know very little.

So whilst sleep is very important and I require at least 9 hours but cognitive fatigue shouldn't be confused with physical fatigue.

Rayoflight123- profile image
Rayoflight123- in reply to sealiphone

Thanks Seal. I was just wondering today whether all this sleeping was detrimental ….he largely sleeps all day…..exercise is a tricky one as he’s unable to walk currently…..

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