Fatigue is a massive problem after a brain injury.
Is anyone aware of the boom or bust issues?
If you have over done it and feeling the fatigue altering mood, word finding, sleep etc... what is the best way to recover from it?
Link for fatigue booklet headway.org.uk/media/6580/m...
Any help or suggestions appreciated, thank you.
Hi plenty, I have beaten the fatigue, or what I should say is that I have found ways to manage the factors that cause fatigue.
Identifying the causes is the main thing initially. Mine is sensory processing especially vision. I have/had multiple visual processing issues. Then there are cognitive issues and automatic function. I did not even begin to work any of these out till over a year of resting, literally doing nothing but sleep for most of the day. I stayed in the house for almost all this time.
I think the initial healing is really important before finding and dealing with the other factors.
I noticed after the initial stage that if I went into the sunlight then I got fatigued, same with screen time and with LED and fluorescent lights.
I noticed that I had to really think or try to think how to do simple tasks like washing, cleaning teeth, laundry etc.
Conversations, reading, basically anything that required thinking caused fatigue.
I came across a book 'The ghost in my brain' where the person eventually went for vision testing and had success. I went for vision testing out of desperation (optometrist, private, nhs does not do it) and found that I had multiple visual processing problems. The worse of these was treated first and the result was astonishing, was instant and after 14 months my brain adapted. I am on my second part of it now, dealing with bright sunlight, with another pair of glasses and again instant relief.
They said for the brain to function then the sensory information going in needs to be good, processed information and not a mess that causes confusion and extra brain energy to try and work out what it is.
The other big issue was that my automatic functions were gone or fragmentary. This mean't that I had to spend time trying to think and concentrate on working out how to do basic things like make a cup of tea, put on shoes and socks etc. I set up repetitive action practices that covered these activities and used mindfulness to help focus attention on the activities. I did these between the glasses and found that I had built up a large collection of automatic functions but they were mostly individual and did not link together that well for multitasking. After the second pair of glasses I found ALL the remaining cognitive and physical fatigue lifted in an instant and the different activities integrated over a couple of weeks to make me multi functional with tasks.
If I have too much screen time or go into LED or fluorescent lights, even with the glasses on then it all goes wrong again and the fatigue comes back. As long as I wear my glasses and stay away from indoor lighting then I feel normal in regards to fatigue.
The indoor lighting is next on the optometrists list. Also I am plugging away at building up a bigger range of skills and activities so they become automatic and will use less brain energy.
Brain plasticity.
Hi, do you mind my asking how you found your optometrist? Thanks.
Hi have left info with the other comment on another post. I searched the web and luckily found the brilliant Janet Green straight off, she's retired now, but you never know she may still do a bit of work, it seemed she lived for the work. She is a bit eccentric.
I tried 2 others who say they are optometrists and they did not seem to know what they were doing, they tested me for dyslexia instead with coloured sheets of acetate.
Thanks- I will have a look for her online. Sorry about the double posts- brain is easily confused these days...
Hi ClaraJ just checked your posts on your page. B12 deficiency is also linked to vision issues as you know already. I suppose you have to try things. You also had/have gut problems, I have the same.
With me it seemed that the visual processing issues were causing physical panic responses and affected my gut and heart rate and led to fainting. After my first pair of glasses for pattern glare (a processing issue) the panic responses stopped mostly but continued in LED lighting. It's all a bit complicated and each part of the chain can be seen as a symptom and be treated but until the issue that causes the problem is found and treated then it will persist. You just got to keep plugging away.
A way to maybe get an idea is to see how you cope for a week by staying out of the sun and out of LED lights and away from screens. (I lived in the dark for months, if I went out it was like someone had put a blender in my head). That's what gave me the biggest clue but I did not recognise it for quite a while. If you get exposed to that kind of lighting and you get fatigue or the fatigue gets worse then there is a clue that the issue is visual.
I did'nt care about the money and just got tested and now after my second pair of lenses I am basically fatigue free and have physical and cognitive energy and I'm plugging away at building up my experiences and life is getting fuller and a new normal is taking over.
OK- thanks! I have been battling to make sure I am getting enough B12 as some symptoms are very similar to PCS but I think I am OK now.
It does really sound like behavioural optometry is worth a try with the right person.
Hi Plenty,
I think fatigue is a permanent side effect of brain injury in most people. The key to managing fatigue & avoiding the dreaded boom & bust is to gently nudge out of your comfort zone, but not too much.
Six years on I still occasionally overdo things and suffer the consequences.. but I rarely do it the same way twice. So I guess it’s a learning curve.
As pinkvision said, knowing what drains your battery is a huge advantage. It’s a very personal thing and something you need to find out as you go along. Then once you know what type of activities/events sap most of your energy, you can go about pacing your day.
I personally find that to function at my best I need to have a nice mix of physical activity (some days it’s just a walk with my dog) and then cognitive activities (filling out some correspondence or an important phone call) and then something a bit more pleasurable and relaxing (for me) like cross stitch/jigsaw puzzle/etc but I find that the “fun” things have to have a time limit, otherwise I suffer from hyper focus and will literally do the activity for hours and hours with no break, even to eat etc. So I set a timer.. sometimes I behave and adhere to it, but not always.
Frontal lobe damage and executive dysfunction are to blame for this and quite a few of my ongoing difficulties/quirks.
Yes it does appear to be a permanent thing. I’m still learning about possible triggering activities.
And when you’re feeling good, sometimes overdoing it and suffering consequences.
But I did wonder the best way to recover?
Good point you make here with the area of brain that is damaged, mine was back of the head, visual processing and many body regulatory functions too.
Hi. My brain injury was over four years ago and I still struggle terribly with fatigue. I would say that along with sensory overload/shutdown, it is the most debilitating symptom that I have.
I remember when I first spoke to the Headway helpline and was advised to take rest breaks throughout the day - laying down if possible, covering the eyes, being somewhere as quiet as possible, having around 15 to 20 minutes (any longer and a sleep cycle could begin.) I never dreamt that four years on I would still need this. I went through ups and downs where I didn't rest regularly because I was denying to myself that my problems were that bad, or even that I had a brain injury at all. I had times when I became so exhausted that I had to rest for the whole of the following day - like when I had done something outrageously tiring on one day - like going to a doctor's appointment AND going to the supermarket.
Anyway, I talked with my Headway worker and I decided to really try to stick to regular rests, so I found that putting regular alarms on my phone for (usually) three rests a day helps a lot. One important thing is to take the rests WHETHER YOU FEEL YOU NEED IT OR NOT. In other words, have the regular rests before you feel too tired.
Now, this hasn't cured the fatigue at all, but it has been the best way to manage it and if I deviate from the regular rests I really notice it. I keep a pillow in my car now!
My main problem is that my fatigue has affected my physical health because I have cognitive and physical fatigue and I find it incredibly difficult to find the energy to do any type of exercise as my daily tasks (shopping, dressing, personal hygiene etc.) use up all of my energy. If you add in occasional doctor's appointments etc. that's all I can just about cope with. I feel like I exist rather than live. I am hoping that my weekly Headway group will resume soonish as I really miss that.
I really hate getting desperately tired as it can be quite frightening. Once I am exhausted, I think only resting with as little sensory stimulation as possible is the only thing that helps me.
Sorry for the long, rambling post.
🙄🌸
what intervals are your alarms? thinking that I could just set a regular 4 hour alarm but perhaps ones that are key times in the day might work best?
Hi. I found my intervals by trial and error. If it was a day where I had to get up and go to Headway, I would need a rest by midday, then another at 3pm after the group finished and another at 6pm. On less busy days I might have just two rests - one at 2pm and one at 7pm. I know which activities tire me out so I plan rests for straight after those. Every time I go to the supermarket I rest in my car before I drive home and I rest again at home. What makes me realise how badly I need it is that often I don't think I really want to rest, but I do it anyway and afterwards I am amazed at how much clearer my head feels. I had this happen today. I still get surprised by it!
I hope this might help a bit. 🙂🌸
Yes I experience fatigue in just the same way and I think I’m not really tired but I start to get irritable and my support worker says have a rest now and I do and I feel loads better
It's a pain isn't it? 🙂🌸
irratable and indeed bad tempered, instead of support worker I have a long-suffering girlfriend, but goodness how long she can cope!
The problem is that I don't have a routine as such nowadays, so the rollercoaster is a little scarier than when I could plan rests in between studies and fatherly duties etc
Yes I’m finding not having a routine makes it a lot harder. I used to know what going to happen so I could rest before it and after , but now I don’t know where I’m at.
It’s confusing and annoying!
As others have said it’s about knowing what works or doesn’t for you!
This said certainly in the first few years it’s worth trying things a few times and seeing how it pans out!
I have also found some things that I just avoid now. That I can’t cope with, and just endured because I used to love them, such as live music. It’s just too much I can tolerate it for a short period but due to cognitive overload/vestibular fun it’s not fun!
This said exercise works well and I’m as fit as I ever was and physical tiredness appears to be independent from cognitive or even sleep?
For example I had a fairly full on bike ride today and not much sleep, yes I’m tired but nothing like if I’ve been to work which empties the tank!
Yes, I find exercise works really well! Not linked to intensity either, I can get the same boost from a steady jog or some gentle yoga. It's the movement and the oxygenation, at least my hypothesis... and I can exercise for a good while, but things like speech therapy drain me really quickly.
Plenty of breaks and knowing that I can 'escape' from a situation if I need to. The sensory overload is a big factor. I feel hopeless in my local corner shop within about 5 minutes.
Hi. I found your post very interesting because of what you said about exercise.Is that how it's always been for you - that the physical side is less trouble than the cognitive side?
Straight after my brain injury the physical fatigue was desperately overwhelming, but because my injury happened during an operation in hospital, I thought it was just a post operative thing. It got a bit better over the next few months but has stayed at a consistently high level now for four years. My physical health has suffered because after doing the everyday things I need to do to survive, I have such bad physical (and cognitive) fatigue that I haven't yet found a way to manage to exercise. Any tips would be welcomed. I have problems even standing for more than a couple of minutes, it's that bad. I have tried to get help/advice but no one seems to know what I should try to do. If I try to push on through the fatigue everything shuts down and I become unwell for hours, sometimes into the next day.
Sorry for rambling on. I didn't mean to dump a load of stuff on you. If you do have any ideas though, I would be very grateful to hear them. Thank you. 🙂🌸
I was fit before and am now again. Though took time to recover since I did very little exercise for a few months, and was essentially permanently exhausted.
First year I did slow rolling along tow paths and such maybe 15 miles max and that would wipe me out, but within a year or so I was back to being able to do many times that without issue.
It did come back though, though worth noting that since my vestibular system doesn’t work well, and few other bits and bobs walking is much more tiring and challenging, unlike biking which ironically doesn’t seem effected!
It also allows one to keep a reasonable distance from others in these socially distancing times!
Should note I’ve had Rehab during this time, or as I like to joke, having improbable things done to me by young women! Some if not most of the Vestibular stuff is really quite odd! But bizarre as it was it has helped.
I can’t stand for long periods comfortably etc still. Have you had rehab?
Thank you for your reply. After four years I finally managed to get a referral to the neurological rehabilitation services and had a telephone consultation with a doctor. From that I have been referred to speech and language therapy; ENT and occupational therapy. Unfortunately, because I was never referred to the rehab people while in hospital following the actual injury, they have referred me to the community occupational therapy team. They don't have any specialists who are trained in brain injury rehab. I have enquired if I can see an occupational therapist from the neurological rehabilitation team but have not heard anything back yet. I have never been offered any other rehab despite trying to get some kind of help with this for over four years. What sort of rehab did you have?
I’d apparently fallen though the gaps in the system, but the lovely facilitator at my local Headway Group, got me back into the system.
So I was sent back to StGeorges where for a 4 maybe 5 week assessment covering all bases, so I had physio to work out what was going on, (knackered vestibular) which I was then referred to the vestibular clinic.
I was given tasks to do such as find a place in the hospital and so on. Some things you can’t do much about for example I’m faceblind not huge amount you can do with that!
For myself having the report with what has been damage or not really helped with feeling validated that it wasn’t just imagining it!
Thank you, that's very interesting. 🙂🌸
Hi,
I found that the best way to better fatigue was to change my diet.
I had 2 brain tumours.
One has been dealt with and the other is in active now. I had an awful diet before, and I think that is what caused the tumours to appear - that’s my opinion.
I did have suffer with fatigue but I have also changed my diet around for the better, I eat more fruits and veg and much less meat and sugary processed foods now and feel a lot more better for it. I don’t get so fatigued now either.
been vegan for 3 years, no caffiene, no alcohol, no smoking (no fun)! exercise everyday...i dread to think what I would like if I went the other way 
still living in C battery!
I’m not a complete vegan, more of a flexitarian that leans a lot more to fruit and veg. Or as I call it, a rubbish vegan :).
I have never smoked but I could never really see that as FUN and I still drink but only occasionally. One or two pints every now and then. But even that isn’t exactly FUN.
I never was a big drinker anyhow cos I basically see it as a waste of money and a waste of life. But that’s what I think.
But why do people say that the things that aren’t good for us are fun?
They might be fun, in some ways until you have lung cancer or they might be fun, in some ways, until you have a horrific car crash and die or some might even say they can’t eat chocolate no more cos it is dairy.
You can eat chocolate if you are vegan anyhow.
Vegans can lead a FUN life but in a different way.
Fatigue is the pits!
I am going to take the idea of setting regular alarms for rest perhaps every 4 hours to start with, rather than what I've been doing the past 4 years, and that's, feel fatigued then rest/sleep for an hour every 2-6 hours of awake time.
Fatigue happens irrespective of what I am doing beforehand, so I just go for it during the awake times from mountain biking, house projects, talking to folk, paperwork and correspondences, entertaining my boy and constantly ticking of the To Do List (which never gets any smaller).
Stubborness and the drive to get things done has always been a large part of my personality, and THAT is the most difficult thing with living with fatigue.
thanks all for replying, it always helps other folk.
I understand what you mean about the stubbornness. I am like that too and I still find that I fight against what I need to do. I still just want to be able to get on with stuff like before the injury. 🙄🌸
If you really want to combat fatigue after a brain injury you need to understand what actually causes it because this is what helps you to make the changes needed to make a real difference .
I suggest reading globalbia.org/understanding...
Interesting reading. Thank you.
Rest and naps definitely help.
One task at a time and not spending to much time on them seems to be key, but hard not getting carried away when feeling good.
Fatigue 
Fatigue 
