Anybody else find that their fatigue is getting worse years after brain injury?

[SillyPhil]

My accident was 20 years ago. I've had fatigue problems ever since. I used to have to sleep for 45 mins to an hour or so, but now i zonk-out for 1.5 hours or more. Sometimes 2.5 hours. I sometimes feel that life is passing me by whilst i sleep. Very annoying.

[RogerCMerriman]

It's much less time for me, getting on for 5 years for me, it's difficult to really say, since life has changed a fair bit. I am tired a lot, I have stopped generally sleeping in day which I think helps.

has anything changed?

[SillyPhil in reply to RogerCMerriman]

Oh yes! I got married and moved to Wales. So lots more interaction. I used to have quiet days where I didn't go out and rested my brain. But now we're always talking. It's great, but so tiring. And I underestimated how exhausting moving would be. I knew Wiltshire as I lived there before my accident but I just do not seem to be able to learn my new surroundings. So I get lost all the time. All of this combines to wear my brain 'batteries' out more quickly I think. Sigh.

[RogerCMerriman in reply to SillyPhil]

Moving house and getting married? Wozzers im out cold just going on holiday!

Some times have to give your self recharge time, or you end up boom and bust etc.

[SillyPhil in reply to RogerCMerriman]

Yeah, holidays wipe me out too. Bummer!

[RogerCMerriman in reply to SillyPhil]

To be honest I’d assume they wipe most of us out, to greater/lessser degrees! Bit sad really!

[cat3]

Phil, when you feel the need for sleep try a walk in the fresh air instead ; nothing too strenuous but with a pace which causes you to breathe deeply and your heart-rate to increase a little. I made it a none-negotiable rule in the early days to walk out every day, rain or shine, to buy a newspaper (30 min walk). It very quickly improved my stamina and attitude to the point where I no longer needed to sleep in the daytime. I still have rest periods but haven't slept in the day for over 4 years.

Any underlying depression will exacerbate your fatigue so perhaps that's something to consider ; if you do feel you're depressed you should speak to your GP about treatment.

best wishes........

[SillyPhil in reply to cat3]

Hmm.. Lots of stuff on Headway about fatigue and it all seems to say that if your brain says 'sleep' it is doing it for a damn good reason - it needs sleep. But whatever works for you... x

[headchild]

Have you had a B12 blood test. My daughter has a BI from years ago. She had the same as you with fatigue and had a blood test which found she needed regular injections of B12

[Grapple5]

Hi Phil, sorry to hear you’re still struggling so long after your accident. My accident was two years ago and I constantly struggle with tiredness on a daily basis. I try to exercise regularly but this just makes me sleep longer...although I would never give up the exercise to sleep less as I feel it’s important to continue with it. I definitely empathise with you when you say it feels like life passes you by...I find myself sleeping at family gatherings (I have mental fatigue too from things like talking to people, etc) and feeling really upset that I’ve missed time with family. I hope the great advice from the other replies helps to alleviate some of your tiredness. Sending best wishes!

[SillyPhil in reply to Grapple5]

Thank you x

[Positiveme]

Hello Phil

Yes. I’m almost 5 years in and have only just accepted that fatigue is now a significant part of my life which I can’t ignore. I have realised - ignore it at your peril. I have been in denial and booming and busting ever since my accident resulting in complete and utter exhaustion and shutdown. I have had to stop working temporarily which is shocking to me. I am now hopefully going to learn how to live with it in a more successful way from now on. Fatigue is not your fault and it’s not my fault and I agree with you it’s very very annoying!! Take time to recover, good luck to you. 👍

[SillyPhil in reply to Positiveme]

Keep battling positiveme

[Mufc]

My fatigue is not getting worst but my anger is. I thought as time went on things would improve but the better I get the more angry I am for all the things I am missing. 24 years since tbi occurred.

Mufc

[SillyPhil in reply to Mufc]

Jesus. 4 years longer than me. Keep battling.

[Jag2004]

I can relate to all these posts. I find if I cut out my naps I'm like an overtired toddler that can't sleep at night. It's so frustrating. I love exercise but it definitely drains my batteries.

[sammm2k]

I'm 2 & half years since my bi & fatigue is ongoing battle. I try to manage it, rest before I do anything, rest after I do anything, but not always possible. Past few weeks I have had no choice to have sleep in day to help get me through. I sleep through 10-12 hours every night, undisturbed, when I go I'm gone. I live to sleep. Sooo annoying

[stedman in reply to sammm2k]

Living to sleep keeps us alive ;-))

[SillyPhil in reply to stedman]

It's better than the alternative I guess...

[stedman]

I try to do work in the garden, grass cutting, hedge trimming, maintaining equipment, sharpening hand tools, creating the compost heap. I find that walking around looking for items, fetching tools and using them quite tiring.

Sometimes my vision lets me down which is annoying and frustrating, a two-hour stint is enough for me, so I sit with a cuppa and a bun for ten minutes or so, then do a little more. A couple of hours in the garden or workshop each day and I make an acceptable impression that keeps me satisfied and motivated, especially in this good weather. Physio twice a week help's with improving body strength, mobility and breathing, all so very important.

I wish you well and hope you stay on top of things. Regards.

[swedishblue]

I'm still working on it and will be for a life-time I expect. Here's a link to Brain Injury and the CFS Brain; cfsremission.com/2015/09/06...

[Wazza84]

My fatigue varies from day to day it seems to be “worse” during hot weather 😔 I take Modafinil (100mg) to help fight narcolepsy & fatigue.. have you spoke to your gp about fatigue?

[SillyPhil in reply to Wazza84]

GP's are out of their depth when it comes to brain damage. I was seeing Prof Sharp, Consultant Neuro in St Mary's Hosp, London. Maybe I'll ring him...

[Prettythings1]

Hi silly Phil,

My brain haemorrhage was over a decade ago,

The fatigue is definitely much worse but then I suppose I am busier I have a young daughter who am at home with every day she’s a toddler so she tires me out so I definitely feel the fatigue don’t know whether it’s the effects of my brain haemorrhage or the fact that I never stop running (hobbling)round after a hyperactive toddler

X x x

[SillyPhil in reply to Prettythings1]

A toddler would tire anyone out!

[Prettythings1 in reply to SillyPhil]

There are no words for how tired I am x

[SillyPhil in reply to Prettythings1]

I do sympathise. It must be really hard. I need to go and have sleep now. I hate it, see it as a weakness and I sometimes curse my brain and wish I was the person that I used to be. But life must go on. Keep battling x

[Prettythings1 in reply to SillyPhil]

I know what you mean but it is what it is and that is that I think you just have to get on with it the best you can nap often if you have chance

I always beat myself up about not being able to do things because I’m tired or disabilities Etc my problem is and perfectionist and absolute control freak but since having my daughter last year it is help me to except that we can’t control everything things just happen and you have to make the best of them. Such as toys everywhere, Looking after my Daughter on my own with only one arm and nappy changing can be a challenge haha ! But it has to be done I have to set a good example for her x

[Jaec]

I've just come across this post but yes!! My tbi was 30 years ago and fatigue was always one of the issues I was left with. When my kids were little I managed with the fatigue etc but now they are no bother but I am so tired all the time. I would need 12 hrs sleep a night to not feel shattered.

Did you find anything helped apart from more sleep?

[SillyPhil]

Hiya Jaec, I go to bed at 10pm and usually sleep until 7 or 8 but I still feel by brain slowing down about 4 hours after I wake. It is telling me that it needs rest. So I have to go and sleep. I have had to accept that it is just the way it is and to rest when my brain's tired. Otherwise I am confused, grouchy, unable to think straight, over-emotional and no good to anyone. And it's cumulative so if I miss a kip one day I need it more the next. I am prescribed Modadinil to give me a boost and keep me going if I just HAVE to get through the day without kipping. They work but I don't like taking them as I feel I'm jet-lagged but have had too much coffee. And I MUST get a kip the day after. It's a difficult balance isn't it? Anyhow, I've never 'met' someone who has had brain damage longer than me (mine was 22 years ago, Jan 1998) so 'Hi' to a 'Senior Survivor

[Pairofboots]

My sleep has recently gone a bit haywire. Started with problems getting a certain formula of meds. But since getting the original meds back, my sleep is even more disturbed. This means that at some point fatigue strike's.

Before I had become fairly stable with sleep, and knew that about two hours after waking I'd hit a dip.

Now apart from my sleep being disturbed, my dip is unpredictable. This is making life a little awkward, as I can't plan around it.

I'm hoping time will reset my sleep, but this feels different to previously when my sleep was irratic.

I wake usually with a start, like a bad dream that you can't remember, but what ever is happening, I am pulling muscles, or just getting general pain as if you have sat in a bad position for a while and then move. It's a pain in the ......... sometimes amongst other areas.