After a few days last week when I felt fine, normal, like nothing is wrong, today I crashed. I woke with awful muscular aches across my back - this is not uncommon, but I have no idea if it’s related to PCS. I was active for a bit, then I just had to lie down and rest. Everything switches off and it’s as if my brain and body are trying to reenergise without sleep. What is a little concerning is that on these bad days I will reach a point where I just can’t be on my feet anymore, or around noise or stimulation. It does feel that if I don’t rest I will pass out, although this has yet to happen.
I still see the same cycles - telling myself I’m fine because on the good days I feel near normal, only to see the inevitable crash. If I feel fine, I want to get on, I don’t want to tell myself that I need to slow down. I don’t want to pace myself when I’m operating at normal pace.
I see that the PCS is having an increasingly detrimental effect on life. I can’t seem to get enough done anymore. I lose whole evenings and to sleep and the lack of productivity is getting to me. My head is telling me to rest and I listen to it. On the bad days I literally have no option to rest - I have to escape to the quiet of the bedroom because everything becomes too much.
After so long, I wonder if this will ever go. It could be far worse than it is, but it’s the variable nature that makes it so difficult to deal with at times.
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PointOfFact
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Hello PointofFact, I see you're three years down the line from your injury - what happened to you?I suppose the good news is that the type of boom in and bust you describe is pretty normal after a brain injury. But unfortunately unless you take steps to manage it yourself, rather than just waiting to crash, I was told by my neuropsychiatrist that it was unlikely to really improve on its own. It was very hard for me to hear, but he said that by managing yourself with short rests during the day, and by not doing so much that you hit that bust phase, you will actually get more done in the day and week - it's annoying to hear, but for me at least, it seems to be true in practice - and I've built up my capacity to get stuff done considerably. Try to either take a short ten minute break every hour - or two longer half hour one morning and afternoon. Try and avoid those long naps on the evening - I set timers. The trick is to take those breaks before you really need them and have no option.
In common with ME/CFS (as one example) it's really important to live within your 'energy envelope' and once you have reduced your activity to such a point where you aren't having massive ups and downs, you can very slowly and steadily increase your activity levels during the week, while trying to avoid triggering a crash. You've already identified that busy noisy environments will tire you more quickly - so one trick is to rest up beforehand and rest up more than usual afterwards to compensate.
I know it makes a lot of sense, it’s just hard adjusting to this. It was only what I would consider a minor bump to the head, so it’s hard to believe that I can sometimes feel so bad this far down the line.
I know sound can be a trigger, but it’s not as obvious now - I don’t get that fogging feeling so much as a warning, just the heavy eyes and the rapid onset of fatigue. I also know that too many jarring neck movements or looking up and down too much is an issue.
The downs are becoming worse now, I get to the point where I must rest instantly. If I push beyond I feel like I may pass out. Oddly my breathing is more laboured during these periods, even if I’ve not done anything demanding.
I still remain concerned about returning to work. I’ve been doing things at my own pace and have been able to manage noise levels. A physically demanding job in a noisy environment may not be suitable.
I feel for you, as yes mine was a minor injury, and after 13 months, I have got worse just collapsing with exhaustine and breathing just like you are describing. Noise is an issue as well and I am now signed off sick which as you say worried what is happening next with job.
Painted girl advice sounds very good and I must try it but there is no place to rest every hour or when you get tired at work, so push on and come back home collapsing on bed for hours.
I feel your pain and you are not alone.
The muscle part is worse than tiredness as nothing seems to put it away except hot baths where you also sleep😃 nobody can see the pain, GP do not give any support for this pain. Elemis muscle warmer relieves the pain but expensive at £42. Meditation is also good, Dr Jim White, stress control on you tube is good or Mark Williams mindfulness.
Try to keep your mind busy with happy thoughts or puzzle books, that gives a bit if relief as well as keeping brain ticking over.
Rest for today and think of new plan and new hobbies and relaxation.
Mine was an apparently minor bang on the head as well, and I'm a long way down the line, but by building up gently I've grown a rewarding life doing far more than I would have imagined, even a year ago. And I'm still seeing measurable improvements in myself - just in the last couple of weeks I've been able to play music while doing other tasks like cooking at the same time, which is brand new. The severity of the PCS effects aren't dependent on injury severity unfortunately. Noisy environments would be tough though. My consultant said in passing that I had an increased response to stress - so perhaps try and analyse what your triggers are, apart from the obvious noise level , whatever, and do a few minutes deep breathing to cope?
My physio ( I had a lot of rehab) said even if you go and lock yourself in the loo for five minutes when you're out on a noisy busy environment it can help you cope better - just three minutes with your eyes shut and breathing slowly can give you a 'brain break'. I think the noise and busyness of some environments overloads our brains - and am guessing that triggers a stress response?
I do things like listening to music whilst cooking, but perhaps these things are helping. In the early stages I could feel the “fuzzy meter” filling up, so it was easier to assess. Now I get on with things as normal and wonder why I’m almost in tears when the crash hits. I really don’t want to slow down, it’s frustrating enough as it is.
A query if I may. I experienced sensations in my head in the days and weeks after the injury, which were awful - very disconcerting. Looking back I see how bad it really was. The feeling of dizziness, fuzziness, like my head was heavy and filling up like it was going to explode. Is that normal? I still get some sensations where I feel like I’ve been thumped hard in the head. It feels heavy and dull and generally unpleasant.
It sounds like it could be a migraine to me - there's a particular type triggered by a MTBI according to my neurologist. Though I think some of it might be the response to going into 'brain overload' that happens when you hardly do anything at all at first. If I'm overdoing things generally, it will trigger the continuous headaches I had early on.
Have you talked to the Headway helpline about this? They're really good (open in office hours)
It might also help you to get some fatigue coaching from a neuropsychologist - it helped me enormously. They can explain what things overload you and why, and help find you strategies to handle it before and after. Certainly if you rest up on purpose a couple of days before, say a family gathering, and a few days after, it's easier not to totally crash.
Keeping a fatigue diary is a good plan. Jot down your fatigue level out of 10 , three times a day, and any symptoms, or sleep issues, and note what you were doing in-between, and see if you can spot some patterns, and work out how you could trim some things back a bit - it's easier if you can do it with someone else coaching you though. A diary is also a way to identify what stuff doesn't totally wipe you out - which is a bit more positive - for instance I can do more physical things than cognitive things - so it helps to look for more practical things to do.
There are resources for ME/CFS on the web which you might find helpful too.
It's really hard to adjust to not being 'business as usual' but the more you don't make adjustments for yourself as you go along, the harder it is to really get back towards normal I'm afraid. And yes, the total fatigue wipeout groundhog day feeling is always really hard to experience.
Thanks for the advice. I hadn’t attributed the back aches to PCS. As with the laboured breathing, sometimes I just feel like I’m exaggerating and imagining things, but days like yesterday remind me how awful the symptoms can be. At their worst, there really is no alternative other than rest/sleep in a quiet space. The instant, absolute exhaustion is still difficult to deal with, even after so long.
It could be worth having a look at Loop ear plugs to help block out background noise. I’m thinking about gettng them for the occasiinal nught out, to make the noise level more bearable.
I’ve been trying Calmer, it’s hard to assess whether they help or not.
As mentioned, I am noticing the onset of fatigue less and less - it just hits. It makes it more difficult to ascertain what the triggers are. In the early days I could absolutely tell that sound was a factor, as the fuzziness would build up progressively.
I find that moving my head around too much is a trigger, definitely. The stiffness/soreness in my neck is the main warning sign nowadays.
I also had oculomotor and vestibular issues after my MTBI which were largely sorted out by exercises from the sports physio concussion specialist - that would mean that moving your head around could be a trigger. The physio mentioned that I was trying to manage all my balance with my eyes. I think a diary of what you're doing each day may help you spot when you are overdoing things either cognitively or physically - or if its something like going to a supermarket, or chatting with people?
I had an afternoon of half term errands today. I was not looking forward to it, as I was not feeling good beforehand. I experienced some lightheadedness at points and had instant heavy eyelids when I entered a shopping centre. It was very tiring and I was craving a pause when I returned home, but had to cook etc. As anticipated, I fell asleep instantly after my child’s bedtime and woke four hours later.
Unfortunately, due to current circumstances, pacing is not easy. The next couple of months are going to prove even more stressful. Stress has definitely been a trigger and perhaps that’s why the PCS has been getting worse lately.
There is very little free time to chill out or switch off. If I don’t have a random evening sleep, it’s not like evenings are free to do something like watch a film or even “do nothing”.
I feel that our current situation and circumstances has had an effect on the PCS and it is slow going achieving “normality”.
Shopping centres can be really difficult to cope with, particular in hall term. How old are your children? It sounds as if you have a lot of practical issues on your plate to deal with alongside your PCS, and you're soldiering on regardless, Sometimes life difficulties and being under a lot of stress seem to give us no obvious options, and you're naturally worried about getting back into the workplace. What sort of work did you do before your MTBI?
Have you got anyone you can talk things over with? You can always talk on here, but you might find the Headway helpline would be helpful too 0808 800 2244. Who have you got to talk to about coping?
That was a good idea to ring the rehab team. I haven't had numbness, so don't know on that one I'm afraid - so perhaps that's one for your GP.
I don't know enough about employment law to help you, but there are people on here that do - if you can face it, perhaps a new post on here about what help you can get from different organisations with phasing back into work, and what accomodations employers can make for disability might give you some options to try.
Obviously on half term you're full on with a five year old, and I'm guessing you haven't much of any family support to call on to give you a break, but once they're back at school, are you able to take a short nap in the mornings? It sounds like when you're five year old goes to bed in the evening you just keel over for your four hour sleep, which makes sense?
There is a system used by workplaces called pomodoros that is for work place pacing for productivity. Maybe your work would be agreeable?
The other thing is do try wearing the hearing protection when out - Loop is one, plain construction ear protection is another. You may find reducing the noise exposure helps more than you might think.
Also, be aware that just because you can tolerate some background noise, say listening to the radio - doesn't mean it isn't chewing up energy units you would rather spend elsewhere.
Wearing dark glasses to cut out bright light exposure may also help.
Although pacing may seem impossible, or counterintuitive, it actually does help you avoid the boom and bust cycle.
Otherwise, as you experience, the brain just switches off when it has had enough.
Others may just have to adjust, as you have to. Continuing to try to push through will eventually teach you the truth of this.
Prioritize, simplify, pace .
You may find myoactivation helpful for the back pain - I did. They may call it something else there . They feel for sore spots and then inject them with glucose and lidocaine or some other concoction. It resets things somehow. It helped me not get so many headaches as well . After a while it was like the muscles relearned their more relaxed state. Massage therapy can also help and I found that wasn't quite enough.
I am almost 15 years out now, and find I can function a certain amount while feeling perpetually jet lagged... but can't keep that up long . Pacing does help. And yes, I still periodically have to sleep and that is that.
Yes, it is worse when I am stressed or have too many obligations. Unfortunately in life this can not be avoided.
Yes, it can be frustrating and does have an impact on life . Also frustrating. People either get it or they don't. Also frustrating when they don't.
As previously mentioned, I need to find work in the next couple of months. There don’t seem to be many prospects here that aren’t physical work or in noisy environments. I’m slightly concerned, as an afternoon of errands in town wiped me out and was too much - jumping into a role full time after being a stay-at-home parent for a number of years is becoming more of a daunting prospect.
I slept for four hours in the evening last night. When I woke, as is normal, I felt worse, could barely walk and just needed more rest. On some occasions I can get back to sleep, others, like last night, see me awake until 4am. This throws out my routine and the lack of sleep exacerbates symptoms the following day.
If you don't currently have a job, try talking to Headway. There are sometimes programs with a return to work focus that help with some skills.
You may need to do more rehab first, though.
Headway or your local brain injury association will likely be able to give you some ideas of where to go to get some assessments done, which can also help you know if a return to work is possible , what rehab ought to be done first, and where you can go for the rehab.
If a return to work is not possible, you may have to look at getting benefits, and then you will need to know where to go get help with that process.
The whole return to work thing is something we all wanted and is a big issue, not all of us are able and that's a hard one to accept.
I also don't know how far out from your injury or incident you are - most of the healing happens in the first 3 years and some people do manage to go back within that time. It sounds to me like you still are dealing with a lot of symptoms though, so an assessment would be getting you the information you need.
I’m just over three years since the injury now. I would say there had been no dramatic change over that time. I’ve had periods of two months maximum where I feel the symptoms have gone, only for them to come back.
What continues to be frustrating is how variable the symptoms are and how seemingly unpredictable the onset is. Yesterday morning I had to move a few boxes around the house. Carrying two larger ones down the stairs saw me out of breath. I had to pause and sit for five mins after every trip, even after carrying small items. I was worn out just from thirty mins activity. Then in the afternoon I was able to get on with things fine, with no evening nap. However, I’ve become accustomed to the cumulative effect - even if I’m feeling fine and get on with things, the crash is most often inevitable at some point.
Yesterday was strange in that I’ve never felt so exhausted doing such little activity. I was breaking a sweat just walking up and down stairs. I did not feel great, but unfortunately some tasks are a necessity.
I get very frustrated with the pausing, with the weakness in my legs, the naps and the time lost to them. I’m used to being busy, I rarely have much free time anymore (not switching off enough may well be part of the problem) and slowing down or having to stop completely is something I still find hard to deal with.
I can function and get things done, but it’s been at my own pace. I’m concerned about the sudden leap into a 9-5 job, potentially in an environment that might exacerbate my symptoms. Perhaps part time might be a better option to begin with.
I feel I should have explored this rehab support sooner. I don’t want to find a position and see that it doesn’t work out due to the PCS.
I still sometimes feel like a fraud, as I can still get on to some extent. It’s just knowing that I may have a crash or have to keep resting or even find myself confined to bed because I’ve overdone things that is frustrating.
I absolutely knew that the recent afternoon out would tire me out, as I wasn’t feeling good in the morning. I was not looking forward to it, but had to make the trip.
I suppose it’s the fact that I can function to a reasonable degree, but suffer the consequences that is most frustrating. Is this telling me that I shouldn’t be doing all the things I feel I can?
The times when I am at my worst I am almost in tears, because I don’t understand how it’s possible to feel that bad.
Oh dear P, I'm afraid that your brain is telling you that you can't do everything. My consultant, who was one of the people coaching me on managing fatigue, did warn me that just soldiering on carries a very real risk of burnout (but at a much lower level of activity than someone without fatigue or a brain injury to start with). I've got bidirectional fatigue - either physical or mental effort drains my batteries and affects how I function in the other area. So being cognitively overloaded affects the amount of physical effort I can put in.
It doesn't sound like you have much room for manoeuvre - but would you have more time to do things if you could avoid some of your evening sleep by taking short timeout breaks during the day? Just literally lying flat with my eyes shut and a timer on for even just five to ten minutes helps me to cope better.
My physio advised that even locking myself in a loo for five minutes in a busy environment would help ( and it does - breathe slowly and keep your eyes shut)
Long sleeps seem unproductive, Try and set a timer on your phone for half an hour, and see whether you can get away with perhaps three or four shorter breaks in the evening instead of a single long one.
If you can manage your fatigue, and mainly avoid those big horrible crashes, which always feel like having flu to me, you can build up on what you do, and so get more done in the long term .
It sounds like you have got a handle on this, because you know what's happening and why - so just try a few experimental tweaks to see if you can reduce the impact that managing fatigue is having on you. But also try and get help through headway and your GP.
I now have a referral to the local neuro rehab team - I shall see how long this takes.
I’ve slept three out of four evenings this week. It does mess with my head somewhat - no proper downtime, no time for job searching and having to do chores at midnight doesn’t make for the best evenings.
It has been suggested previously that I set an alarm before napping. This sounds obvious and easy, but I find that I have a sudden crash, go to the bedroom, lie down and sleep instantly. There isn’t really a thought of setting an alarm. I actually have no recollection of even lying down for the nap I had a couple of evenings ago, so it’s sometimes not so easy to set an alarm if there is no awareness of needing to fall asleep.
I’ve now slept nearly every evening this week, which I’ve never done before. The knock-on effect is that it’s hard to get back to sleep - I’m writing this now at nearly 5am as I cannot sleep.
I’ve tried to take things easy the past couple of days - nothing strenuous, only a fair amount of walking, which is regular and unavoidable. I’ve even tried to pause and take short breaks and pace myself, yet I’m still falling asleep in the evening.
I’m still hit by bouts of what I can only describe as a cross between the feeling of being lightheaded when you haven’t eaten for hours and being hit around the head, plus a general feeling of being very spaced out, mixed with the sensation of being mildly hungover. As this amplifies, pausing and often lying down is the only option.
It’s really beginning to get to me now. I don’t really have any chill-out time anymore. My partner and I spend no time together and if we do have free time, it’s not spent relaxing, as we have too much to occupy us to stop and switch off.
It’s become a bit of a routine for me to wake at midnight and crawl downstairs and tidy the kitchen. Sometimes I head there in the hope that my partner will have helped out, but housework is all down to me, so sometimes it gets neglected. They aren’t hugely understanding, probably because of the “appearing normal” aspect.
Another symptom which I get regularly is a series of localised dull pains to the head, most commonly to the side where I had the impact. On rare occasions these pains can be stabbing and sharp and come as a surprise. This is what I have been prescribed medication for, but it’s less common now and I’ve become so used to it that it doesn’t really bother me. I was wondering whether this is normal? It tends to pre-empt the fatigue, but I’m becoming less aware of it as it’s just normal now.
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Still struggling after 2 years 10 months PCS
Question. Has anyone with PCS or other BI been diagnosed with Narcolepsy.
Ok Ladies it is confirmed you do get PCS worse than us
