36 year old male, desk job 9-5, actively participating in sport (running and cycling), have always had good mental health and physical health.
Just wanted to ask opinion. I took a knock on the head about 5 years ago (fell off bike - with helmet on!), and in the first six months/year I had all the usual trouble with memory, concentration, even had rasther extreme sensitivity to bright lights. I tend to (not intentionally) spend an extra second or two longer than anyone else to think of a word to complete a sentence. At one stage I looked up Headway's literature on this type of thing and was ressured that it could get better over time.
On claiming compensation, I had various experts assess my health and one person in particular was excellent at pinpointing my issue - the claim has been finalised and accepted. Turns out I have a 'microscopic' brain injury and continue to experience Post Concussion Syndrome with the following symptoms:
• I am aware of diminished memory, in particular the ability to recall material which has been learned in the recent past.
• I continue to experience diminished concentration. Noise is the worst distraction and I have difficulty multi tasking
• I have had a personality change in that I unintentionally feel 'less emotional' and struggle to express emotion.
• I have diminished sense of smell and taste, although still present the they are not what they used to be.
• Alcohol has an exaggerated effect.
• I have visual difficulties (my eyes take one extra second to focus on an object, though I am not handicapped by this)
• I experience a reduced sensation of touch and temperature on my right hand side (this is subjective - there doesn't appear to be any objective evidence).
• At certain cold temperatures, and after a certain amount of intense exercise, the right side of my face falls and I have slightly slurred speech (almost as if I've had a stroke - it's not that, but it looks and sounds like it)
I've been advised that these collective post concussive symptoms will more likely than not linger indefinitely and on the balance of probability I will not make a full recovery at any time.
In the last two to three months, my memory in particular has become worse. I am lucky if I remember any kind of list, and the slightest distraction (be it a notification on my phone, a phone call, someone at my desk needing help, a new instruction from my boss, an email, an instant message - anything really!) can knock me completely off course, not always, but about five times out of ten I struggle to remember what I was doing in the first place - before the distraction. This is now actively affecting me at work where I struggled to complete a task. I am on annual leave this week and always like to get up to date before I stop. Last week I really struggled and just couldn't get done what I wanted/needed.
My question is, would I be better off going straight to my work's Occupational Health department, to see what help they can give me? Or should I speak to my own doctor? Are there any other tips/aids which any of you have to manage these post-concussive symptoms - especially the memory & concentration issues? I am a team leader and need to be available to help my team at all times, so distractions are a normal part of the working day. Reducing them is not really an option without removing myself from the team environment leading to them being less motivated.
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coco_banjo
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I would always write down any business related memory you need, on phone ideally or buy some paper document the size that suits you.
I’m no doctor, so I can only recommend you focus on mind over matter for the rest. Don’t forget 99% of who you are is invisible and untouchable, i.e. your mind👍🏻
If you have "microscopic brain injury" then have you seen a neurologist?
How long ago did you have a CT/MRI scan?
I'm not quite sure what is meant by "microscopic brain injury" but ,by what you describe re facial droop and slurred speech it seems that it could be caused by a brief interruption in the blood supply to a part of the brain supplied by smaller arteries deeper in your brain.
Other thing that can sometimes cause such symptoms would be migraine, and as you say, stroke, although when the signs/symptoms come and go it would be classed as a transient ischaemic attack (TIA). Sometimes people call it a mini stroke. It might also be worth asking your GP to refer you to a stroke consultant.
Have you just started having the facial droop and speech problems or did they start failry soon after the head injury? Also, how often are you having them?
I wonder if you have risk factors like high BP, high cholesterol,type 2 diabetes that are being managed appropriately? Also, I wonder if taking low dose aspirin ( only if prescribed by a neurologist or stroke consultant) would be beneficial?
Thanks! The guy in the Nuffield health centre told me it would only show up under a microscope. The slurred speech and slight facial droop started happening in the days after the injury occurred. But it’s only after intense exercise or exposure to cold (icy) temperatures. I also initially had trouble picking up and putting down a mug of tea in the first few months (this is fine now) - I would unintentionally slam it down believing I was just putting it down gently after sipping. Not sure if that’s related.
No BP or diabetes issues, BMI is right where it should be. Diet is reasonably healthy (got a sweet tooth but, who doesn’t 😂).
It seems you've done pretty well to realise all the ways you've been affected by your injury, and it's good that you are learning to live with them. I guess for all of us, there are things we can no longer do and things we can still do with a little adaptation, and it sounds like you are still able to do your job competently apart from this one aspect.
Perhaps you will find a way round this memory and concentration problem yourself, but one suggestion might be to make lists of things you need to do (for the memory), and, if you are distracted, to take a few seconds to make a note of what you are doing when you are interrupted. It might be a mental note or a physical one, whichever works for you. So, if one of your team calls you or asks you something, you could say, "just a second" and focus on what you were doing, before helping them out.
There seems to be a number of similarities to the work I was doing before my first hemorrhage and I eventually decided the demands were to great and resigned.
However I then moved to a position that still had the same responsibilities but in a more relaxed environment.
A digital recorder aloud me to make mental notes on the run and if you talk on the phone reflecting back responses you can record the conversation without the need to record the other persons voice.
I was also able to restructure working practice to allow me to have others work easily accessible via the internal computer network. There was also things that the workers I was supervising could do to make things easier. The net result was that my working practice was adopted by others, as it also made their work easier.
I was very fortunate as at that time I had contact with the Neuro-rehab team and a OT worked with me to consider options in conjunction with my new employer.
From what you say you will be classed as disabled under the Equality Act and once this is known by a employer they have a statutory duty to consider way to ensure (if possible), that you can continue to do your work.
If they are a small company were cost of assistive technology would be difficult to cover the government Access To Work scheme may give a grant.
The other support I received was a support worker who was able to do tasks, which while simple I found difficult.
All this fit under the idea of reasonable adjustments, lots of information here:
Employers have found that my need for structure has actually made there workplace a better working environment.
It's difficult to do and will be different due to the individual and workplace but with the help of a good employer possible for many.
You don't mention involvement with Neuro-rehab as this is one of their roles and OTs in particular.
Getting your first face to face meeting rehab can take months if that the case for you the Disability Employment Adviser based at the job center can assist you and the employer, along with guidance about Access to Work grants.
If you are struggling at work it's probably best to ensure your employer is aware of your brain injury as that triggers their duty, it also bring in your right not to be discriminated against.
id do both. go and see your doc and see if he can refer you for a mri scan and prescribe you something for your attention problem and go and speak to oh and see what they can do for you.
there is another problem you need to address as well, fatigue.
Thanks. Physical fatigue is not an issue, but mental fatigue, especially after a day of distractions and incomplete tasks is something I should consider more. Appreciate the thought .
It was because the prognosis going forward wasn't forecasted to change. I wasn't going to get better but, assuming no further head injuries, I wasn't going to get worse. That was an expert, so I accepted.
Hiya Coco. I had my first haemorrhage in 1985 at about the same age as you having yours. For the first 15 years I suffered with severe epilepsy and deafness. I was knocked about badly, but finally got over much of the troubles. However, all that you feel I also do. Memory, balance, recognition, taste and smell ( not personal I must add). It also may have to do with another 2 haemorrhages causing extra troubles. I have found things tend to worsen. Take care and good luck. Dave.
To answer the "my question is ..." part. I would go to your own doctor first to rule out anything else that could be exacerbating your issues in case thee is a solution as yet not considered. I would definitely seek a medical opinion before involving OH who may in turn notify HR. If it is affecting your work, while they have to make "reasonable adjustments" for anyone with an identified disability, the needs of the organisation will always come first so my instinct would be to say protect yourself.
Thanks. There was originally an OH referral done after the accident I had, they assumed the symptoms I described were temporary and I was good to keep working without any adjustments, and to a degree that has happened I've barely needed to make any adjustments to the way I work or the tools I use to get my work done. I'm already in the union and they actually helped with my claim, so I know I'm reasonably well protected. I think the only major adjustments I'd need would be mobile access to my email and/or calendar (which they say they can't do due to security risks). This would help me get better organised and be able to plan my day/week much better. I'm not sure what else can be done tbh.
Little update I went to GP today. She basically confirmed ongoing post concussion syndrome, took bloods to rule various things out (results in a week or so) and recommended speaking to Occupational Health. My manager is very supportive and has done the OH referral.
I was also recommended to make a daily journal to try and identify good and bad days and see if any patterns/trends emerge (eg am I more fatigued / unable to concentrate on a day when I’ve been out running in the morning, does running cause further post concussion issues due to impact on body/head - that sort of thing). Not a bad idea actually, but no idea where to start with this. Thinking an app is probably going to be most useful. Anyone use any journal apps they could recommend?
So, a little update for you. My memory issues got worse not long after this post, so I went back to GP. Failed a memory test so was referred to mental health clinic. Various psychological tests were done over the summer, and it turns out I have a 'slow processing speed index'. They can't say for sure it was as a result of the knock on the head as there were no previous tests to compare against, but putting two and two together definitely points towards the accident being the reason for it. This slow processing speed has been causing anxiety, and ongoing distractions at work and people wanting an instant answer has caused stress and I've not been very good at handling it this year, so anxiety has, up until now, been getting worse and worse as the year has progressed. I've been told that the stress & anxiety has been taking up a lot of headspace which in turn is making me lose concentration and become forgetful. And they are right, because on my good days I don't have these issues at all. They also mentioned I 'could' have mild depression. I've been having thoughts that I'm useless, selfish, and generally negative thoughts about myself.
Now, I'm attending an anxiety group every week (for 7 weeks) which so far has helped me deal with it though CBT related exercises, but I still have some bad days. My confidence and self esteem has been really low, so this will be the next thing for me to tackle once I'm able to comfortably deal with the anxiety. I've also spent all my compensation money and back into a bit of debt which leaves me with very little disposable income to enjoy things I like to do like going to gigs.
These are problems I didn't expect to have. Coming to terms with this has been really difficult, but I'm getting there!! I'm still in the same job, still getting amazing support from my manager, but I sometimes feel I'm contacting her waaaay too much about silly things and overreacting (internally) to situations in the office then going to her to vent about it. I've a huge amount of respect for her and last thing I want to do is pi$$ her off. The vibe I'm getting from her is that I'm interrupting her too much, so that's something I want to try and work on. Problem is that the anxiety is giving me paranoid thoughts so right now she's the only person in the whole office who I feel I can trust. It's a tricky one. Been a rollercoaster year but I now know what I'm dealing with and now need to take action to deal with it.
I also need some new friends as I've fallen out of touch with the little friends I had - this is not easy at all, but been feeling lonely so need to find some local self help groups to try and make new friends. In Renfrewshire, Scotland.
So sorry to hear about your problems. I’m not medically qualified to say whether or not you should run. But I still (three years after TBI/Skull fracture ) get a sore head and head pain If I run. Even on a bumpy bus or train ride I can have discomfort afterwards. So if my experience is anything to go by then I’d say it’s possible that your Head pain could be affected by running. I also agree with the GP about your memory issues. I’ve been told the same - lack of sleep and anxiety can affect the brain’s ability to make and retain memories. I do hope you find improvement with the things you’re doing now. I’m really sorry you’re not in touch with a social group. Is there a headway group near you ? A lot of people experience changes in friend groups post head injury,
I’ve just seen this and wow, most of it could b me, I’m just 10 months post SH and severe concussion after a fall. I’m suffering with the post concussion syndrome and am really struggling. As I’m replying after a year of your post I’m hoping u r much better and your symptoms aren’t as severe. Wishing U well x
Thanks. The PCS hasn't went away for me, however - how I percieve and deal with the symptoms has improved. Try some meditation (body scan is good) - it's really helped!!
Another wee update. Since I started the anxiety group, my memory and concentration has actually got better. However I still have days when I feel bad about myself and feel useless, unable to multi task (who else can?? lol). I feel like I have no friends who I regularly see (they live a bit further afield and I rarely see them nowadays). This whole year has been a major struggle but I am beginning to see at least a little bit of light at the end of the tunnel. I just need to get over the negative thoughts. I've told my team and my close colleagues about my slow processing speed and that appears to have helped somewhat. I'll get there, it's just hard.
I’ve started a meditation group which really does help. I am hoping with time things will improve for me too, as it’s early days for us isn’t it, and Ive started to tell people close to me about things so that’s less stress at least. It is hard, but we’re still here and for that I’m very grateful x
Another wee update. I am having a better time of things lately. Still getting numbness on right hand side of body, and never going to get rid of this slow processing speed. I usually go for a run 2 - 3 times per week, running around 5k at 7 minute miles, so quite vigorous. However, due to a busy period I hadn't run for just over two weeks until yesterday. Went for a run as normal and came back from it feeling great. Today however, it seems as if all my post concussion symptoms have gotten worse - and I wonder if it's the running which is doing it? Perhaps the constant jarring of my head/brain on every step is exacerbating these issues? Or perhaps I'm overthinking things, but today definitely seems worse and I've done nothing else in the last 24hours that I can associate it with.
Does anyone else have a similar issue? I enjoy cycling too and only get this after really vigorous cycling (sprinting and fast chain gang/bunch cycling). Had been thinking that maybe giving up running and sticking to cycling would be better for me as the last two weeks I've been feeling good.
Hello there 😊 I was an avid CrossFitter before I hit my head last November. I battled for eleven months before I realised I had to stop trying to return to training, admitting to myself that I am not symptom free (all symptoms). Today is the first day that I can honestly say I don't have a headache. Yes I still have my dizzies, my cognitive slowness, fatigue eye issues etc but not to the extent that I have done.
I had an assessment by a local brain injury unit last week and she reminded me that I should be completely symptom free before I return to training. I didn't quite understand the "symptom free" bit until a few weeks back. Acknowledging that training also shouldn't aggravate symptoms either...so I am just plodding along with focusing on staying at work and resting the rest of the time until I feel I can skip my 8.30pm bedtime 🤓🙏 I am referred for neuro physiotherapy so I don't know if that'll help me get back to training...time will tell. This is the most patient and content I've felt in a year but it took me a lot of pain to get to this point.
Buuuuut if you were used to running before your busy period, I would say that your brain just like any other part of your body needs time to adjust to training again so would expect some sort of consequence...how extreme though I don't know.
Hi! So I’m now eight years post injury. My anxiety has virtually gone now, but my role at work has changed and is now faster paced. On our busy days (most days tbh) I never get everything done that I want to do, due to intermittent urgent work needing done. Being dedicated to my job I ended up gaining loads of flexi, so I requested compressed hours with a day off during the week. This provides me with quiet hours during the early morning and late afternoon to mop-up outstanding work. However, two months ago my line manager changed and she is also on compressed hours with the same down day. My working pattern expired so I had to re-request it and it’s been declined. I appealed the decisions and before the hearing I’ve been referred to OH regarding my brain injury - I mentioned in my appeal all my issues so I am hoping that this will be overturned and I can have the same day off again.
Has anyone any experience dealing with OH in relation to slow processing speed for a fast-paced role?
I have positive news. I got a new job and the stress and anxiety of my old job has gone. Still have ocasionaly bad days but in the main, things are much better now. I can run and cycle fine and deal with all the issues I previously mentioned much better through regular meditiation and also by communicating my issues so that other have an expectation. Can't believe it's taken 10 years all in, but I am feeling good now, so just wanted to update on a negative story which has now turned into a positive one.
I would speak to work occupational therapy and get your situation logged and ask your GP what they can offer. They have access to NHS database and might be able to suggest some neurological programme or similar you could tap into. Do you have a NHS university hospital nearby as maybe you could contact someone there or see if there’s any research programme you could get involved with. NHS waiting lists are dreadful so I think you need to try multiple routes in. I’ve not asked if you are seeing a NHS neurologist regularly but that would seem to be important. Apart from that are you exercising etc within your limits as that seems to be the advice.
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