Just found this group and struggling with screens and processing things ATM so please bear with me (find it really hard that you have to scroll miles down to see replies etc!).
Had a concussion almost two months ago. Went to A&E after two days when symptoms got worse, no CT scan but given the general advice, and now under care of GP. Had frequent migraines beforehand (GP thinks undiagnosed Long COVID) so under a neurologist but he's really just concerned with headaches. Been referred for MRI etc but mostly to see what else is going on.
Is there anything else I should be asking for in terms of help with recovery? I don't seem to have recovered brain function that much and now hit with a lingering chest infection so completely fatigued again (though appetite and sleep maybe slightly improved). Brain very clearly not right though.
GP has told me just about waiting but work keep wanting meetings etc about 'unacceptable attendance' and in another two months I'll go down to half pay. I'm mostly quite worried about this just not getting better - I live alone, obviously now can't drive, and if I'm not earning properly (or eventually not at all) this is (as I'm sure you all know!) utterly life-changing.
Family are kind but live three hours away and I'm finding this all very frustrating, especially dealing with paperwork, complex HR docs from work, etc when I often can't do screens or process information properly.
Keep having well-meaning friends tell me I'm depressed but this is maddening - I often have been in the past, but not actually now - I'm just very clearly brain injured. I'm surprisingly undepressed (for me it's coming out as other things, like OCD) but all I want is to know I'm doing the right things to get better for a brain injury, not depression.
I appreciate others can't see inside my head so don't get it.
Any advice welcome. Already called Headway but I seem to be in the no man's land between 'concussion' (which everyone acts like it's a small, short term thing) and PCS (no diagnosis and there's been no talk of referral to any neuro support for this - just the headaches).
I know I need to rest, but obviously living alone (and not being able to get outside that easily) I can't really avoid screens/books/etc very easily, and I'm struggling to explain to work that my brain function just isn't there when, sometomes, I can talk articulately on the phone like normal.
Sorry for length. Thanks all!
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Ideogram
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Hi go back to A&E and get a CT scan and hypopituitary test and ask for a retrospective Glasgow coma scale assessment. These are the current NHS guidelines for head injuries nice.org.uk/guidance/ng232/...
If they won't do it make an official complaint and show them the NICE guidelines.
2 months is very early and your symptoms will keep changing for a few more months yet. Your issue with screens is because you have visual sensory overload and / or visual processing issues (they are not the same condition). Go and see an Optometrist, the NHS don't do this type of testing so here's a webpage that may help.
Hi Ideogram sorry to hear about your situation. All totally understandable and relatable to lots of us on here.
Without wanting to sound too negative, it’s very early days after your concussion. We all have different recovery patterns but I’d say you are on the right track with the MRI appointment in the pipeline. And perhaps you can ask your neurologist to refer you on to Neuropsychology- they look specifically at the actual functioning of the brain, whereas neurologists look at the physical structure of the brain. If you’re savvy with IT, this metaphor might help as explained to me by my neurologist: neurologists look after the hardware and the neuropsychologists take care of the software. Neuropsych can test your cognition and how your brain is functioning to see if and where improvements might be made with conditioning exercises and other advice. But it’s likely to be a long wait as you probably won’t be considered an urgent referral (I speak from experience….). Also they may wish to wait and see how your recovery progresses before referring you as it’s only been 2 months since your concussion and a lot of healing can occur.
In the meantime, take lots of brain breaks- which means switching off from absolutely everything with peace and quiet and try toning down your thoughts too. In a darkened room is good too. The less your brain has to process, the better. Get good at working out what fatigues you and recognising your level of energy left in the tank, and when doing some task, see if you can only go down to 50% of your energy store and then stop there to try prevent getting overwhelmed or overtired. One of the best tips I’ve had from an NHS counsellor.
I know you say you’re not depressed (by the way, I had the exact same response from friends too, re ‘depression’ after my TBI) but maybe anxiety is playing a part? You could self-refer to your local NHS talking therapies service - they have been a godsend to me while I’m awaiting various appointments. They are primarily concerned with anxiety and depression, as that is how they get their funding I’m guessing, but they have managed to shoehorn me into their service as it’s clear I needed help.
From the work perspective, I’m guessing Headway might have given you some advice on how to deal with that? Failing that, try Citizens Advice, as you do have rights. Also, you could apply for Employment and Support Allowance from Department for Work and Pensions as that could help to bridge the gap if and when you drop to half pay. I’m no expert though, so it’s best to speak to Citizens Advice or some other agency that advises on benefits.
Best wishes and keep coming here as people tend to be really supportive no matter what’s going on for you.
- Try and develop a *recovery plan* and write it down. Not my idea, but the advice of a professor of neuroscience I know.
- is there someone you know who can be your regular go to person to discuss issues and offer reassurance ? Often with concussion it’s hard to be rational while dealing with the symptoms and the associated stress and worry
- Maybe speak to someone senior in your HR so you get some understanding at your workplace and reduce the pressure on you. Concussion syndrome is often boom and bust ie good weeks and bad ones, according to the NHS neurologist I’ve seen. People around you need to understand this
- At your stage, rest is really important I feel. Stress, over-exercising etc can be counter productive. I know all about that
- you have to fight for your rights. Press your GP to get a scan, ask what other help is on offer eg if you live near a university hospital are there any research programmes running?
- if you can afford it, sports physio and acupuncture can help a little, although there is no magic cure for concussion syndrome and patience is required.
- most GPs don’t seem to know much about concussion although you may be lucky. Seeing a specialist is really important for sound advice and reassurance.
Not depressed, but it has exacerbated my OCD (not something I'm in any state to access help with ATM). I only mentioned it as I'm tired of suggestions that I need help with my mental health and not with an actual serious brain injury! Thanks though.
Yes I totally get you…I’m 6 years on with people still thinking I’m ‘depressed’ because I don’t seem ‘normal’ or how I used to be. It is frustrating but you learn to let those comments slide off you. They have no idea what’s going on for you.
I’m having CBT at the moment in lieu of any therapy/assistance from neuropsych as I’m having to wait so long and I needed something, anything, to help me. CBT has been shown to help with concussion/brain injury- but I know there are mixed results with it. I didn’t seek therapy for depression but to help with my cognition. But having said that it has helped to have someone neutral to talk about everything and the frustrations though, alongside the practical cognitive stuff, as any sort of brain injury is a trauma after all.
But I can totally get you about not feeling like you’re in the right space and time for any help with your OCD. Lots of other symptoms going on to try and sort..?!
I’ve always had a tendency to hyperfocus but this, like your OCD, is way exacerbated since my accident as well as other cognitive functions, as the neural pathways have all been shooken up, so to speak so we are looking at ways to help with that through the CBT, so perhaps something to have on the back burner for consideration later re your OCD if that doesn’t ease up for you. I mean, I’m much further down the line than you so something for the future.
Go see a lawyer who deals with brain injury cases who can tell you how to deal with your employer.
My old school gp told me I had a concussion and that it would take 6 months to heal.
it did not.
Then I was diagnosed with Post Consussion Syndrome by a neuropsychiatrist.
I would say see one of them if you can, they are an MD so have more clout with employers than a neuropsychologist does, but seeing a neuro psychologist is good too because they do testing so they both do similar but different things.
Whe you talk to the lawyer ask for names of docs to see. They know who is available and who is patient friendly.
Find out if there is some sort of brain injury association near you. If you can't get around you can likely zoom with them. They also have a lot of info about resources
and coping strategies.
At the moment it is early days but you still are having trouble with work. Did you let Headway know that? You need help with that for sure - ie having your injury recognized.
Some people do heal and some don't and in between you still have to live.
When you rest do not try to read or watch TV - lay down and be quiet. Healing happens when you sleep. So sleep as much as you can.
People with brain injury often get told they are depressed because they withdraw from their normal life and may look unengaged in conversation because of the headaches.
Most professionals are not brain injury literate.
When you see the lawyer have everything written up in point form - your name and age,
Occupation
Where you work
How you were injured
What docs you have seen and what they said
That you are facing financial issues due to work
Ask
What should you do
What docs can you see
What treatments there are that have good results
Anything or anyone to avoid
How I got help was I saw a psychologist who was brain injury literate - my gp thought I had ptsd - the psychologist knew I had a brain injury in 10 xec9nds of talking to me on the phone. She did some tests that helped with the employer and she also told me about the local brain injury society and to ask them for a specialist to see, I had to find a new gp in order to get a referral to the specialist, and then the specialist filled in a bunch of forms that helped with the employer.
Unfortunately we are trying to heal and deal with finances.
You need help from someone without a brain injury to get through all the paperwork and appointments.
In the UK I think you have something like a citizens advice centre (I live in Canada and I got help from the local brain in jury association. The other advice I was given was to write my name and social insurance number at the top of
Every page of anything I sent in and to send everything everything- for example if you submit forms and they say later oh se..Nc all better by nextwedk.nd in Dr x letter - send everything again, not just Dr x letter. This is because they tend to split files up and different people work on them and if you maKe it easy for them to find things you have a better chance.
Maybe someone from your family can come down on a weekend or 6 to help you. They likely have no idea - on TV the one with the concussion is fine other than maybe a plaster or a bruise. And all better by next week.
There may also be a local volunteer agency to help you get to appointme ts, help with shopping, etc. Sometimes shops will deliver for you. (Or when you go in say help I need some food and I can't pick it out myself. Open and eat, not expensive.)
It is not an easy time.
Keep us posted. (I am in canada not the uk so things are different here.)
hi and welcome to this group .. you have has some good advice so I won’t repeat it 😊 we all understand how head injuries can take time so just on this bit keep chatting on hear for hopefully some support .. it’s very much helped me and still is helping me .. Sue x
Thank you all. Really appreciate the community - noone else gets it, do they?
Can I ask why you say press for a scan? Do you mean CT? If so, why?
I don't seem to be able to get anyone (GP, who is fabulous and putting me forward for tests for long COVID, and neurologist - been going through things to help with migraines/headaches) to suggest I need anything other than rest. Headway didn't suggest that either.
So how do you see a neuropsych? I assume the NHS isn't going to make that happen for a long time.
Problem is I don't have much longer before my pay gets halved. I don't have that time. I'm not going to be in financial ruin thankfully but I don't want to lose the only career I've ever had - I can't easily transfer to anything else and ironically this was the year I was going to try to buy a house...
Suspect I probably haven't been resting as much as I ought - definitely not working but I do try to rest or watch (often lightweight) TV when I can as the alternative is just staring at the ceiling (and I don't want to make it any harder to sleep at night). Will try to stay off phone a bit more but obv hard when living alone.
I've been told to stop taking painkillers (was on max ibuprofen and paracetamol a day) and unfortunately don't tolerate any of the migraine preventatives so there isn't really anything that I can do when head hurts other than lie there and hope it'll go.
Main concern is that people telling me I look like I'm getting better but I don't feel it and I'm really concerned I'm therefore not improving, but beginning to feel gaslit by everyone acting like it's 'just a concussion'.
I'm beginning to wonder if I'm actually just feeling better some weeks than others based on where I am in my hormonal cycle (I only really see advice based on young male rugby players sadly - I'm a mid 30s female whose health was already falling apart).
I've already called Headway twice (for advice on talking to work and informing the DVLA) and they were very kind but not very helpful on the first and I think actually wrong on the second (was wondering if I should tell the DVLA now or wait until I feel I'm better in the hope that my GP will then support me - obv def not driving now but I don't want to have my licence taken off me for an arbitrary period when I *am* better).
Not sure a lawyer would help as there's noone else at fault for my injury but I might try my union at work.
I have one friend who's been an absolute rock, helping me feel calmer and driving me around, but it's an unsustainable amount to put on one person.
My neuropsych referral came from my neurologist. It’s a niche field in the U.K. hence the long waiting list (same for neuropsychiatrist, the difference is they can prescribe medication). I was referred in October 2023 and I’m on a cancellations list so will be called out of the blue at short notice, so no idea when I’ll get that call.
Re scans - what the medics are advising will depend on the nature of your concussion and how you are presenting I’m guessing. It was my neurologist who sent me for MRI and EEG although I do have history of epilepsy. I don’t know the difference between MRI and CT although I’ve had both in the past. Headway told me to insist on an MRI.
Hopefully you’re able to pick out some applicable advice from here as I know we’ve all given you lots of bits and pieces! Every brain injury is different and yes, concussion IS a brain injury. Even if there are no lesions visible on an MRI, there have still been injuries in the brain too small and hidden to detect (as told to me by my neurologist.!)
I had a tbi I would advise rest and gentle exercise . I carried on and my headaches were migraines but not diagnosed until later, I should have rested, has work should put you on light duties. I hope your headaches improve. I find screens and typing hard and screens make my headaches worse.
Thanks. I've been off work two months. Definitely can't do screens - and my job is entirely screens - the last week I mostly haven't been able to look at a TV / book at all. Seem to have got much worse.
Listen to radio 4 in a dark room when my headaches too bad or go to bed early. I am too unhappy but need to manage headaches and triggers for headaches. Hooe you fell better soon
I noticed you say you have a union - do talk to them. You have rights but it’s hard when you are recovering from a brain injury to keep the concentration going etc so you should have some support in dealing with your employer. Citizens advice can help as well - especially if you start claiming employment and support allowance . Don’t exhaust yourself filling in DWP forms when Citizens Advice have lots of experience with this and can help.
Your employer should make reasonable adjustments to accommodate your health issues which might be reduced hours for a period, providing a quieter space for you to work in , allowing regular breaks - that kind of thing. If you have a union they should be able to help with this.
Thanks all. Just went for a walk and could barely manage 25 min on the flat with two sticks, then went to a shop and couldn't scan the titles of books on the shelf. Got rather overwhelmed with the fact I might never climb again (also work or drive, but those aren't the things I live for!).
I know recovery isn't linear but is it normal to get so significantly worse two months in? A few weeks ago I went up a 300m hill and then came home and watched several episodes of TV. Now I'm exhausted and head comes on just from walking five minutes on the flat. Like all the stuffing's come out of me and I've got the head/aversion to using my eyes that I had at the beginning of the concussion two weeks ago (though now I can't take painkillers).
Hi Ideogram,I can relate to a lot of what you're saying. Two months in is early days though, at this stage it's difficult to call whether this will clear up within the 3-6 month window, or not. Sounds like you're fairly young, which may help though. I appreciate this may be the longest you've ever been off sick, and it's hard to work out what's happened after a brain injury for all of us. See if you can get a referral to a neurologist who specialises in post concussion issues, or to a neuropsychiatrist (or a neuropsychologist for testing to show what areas you're having difficulties with). The standard treatments for migraines didn't help me either, and some of the side effects were pretty grim. Usually otc painkillers don't touch post traumatic migraines, and they can activate trigger headaches, which is why you're not meant to take them.
Meanwhile try and take 10-15 mins complete brain breaks every hour ( dim light, no music, no screens or reading) meditation on breathing helps pass the time - try out the Headspace app. Also try and take 20 mins gentle exercise a day, at a pace that doesn't make you feel worse, it helps to avoid de-conditioning. Try and get a stationary bike from eBay or social media.
I'm not that young... Though I suppose it depends where you're looking from!
Currently it's not so much screen breaks as almost impossible at all most of the day (I use my phone, but that's impossible to avoid). Last few days I really regressed and pretty much woke up with the headaches that come from using a screen/other exertion, then had them all day; lost all my energy (compared to a few weeks ago); and the few things that had improved (sleep and appetite) went again.
Fingers crossed that's been exacerbated by other bugs and hormones and might get back to recovery now but it does seem that every pre-menstrual week I'm back to square one. Cognition still not there either - I'm forgetting words and spelling, muddling them up, etc.
Bikes definitely beyond me but I'm trying to just walk 5 mins round the block when I can if I can't do more.
I know 2 months isn't long in the grand scheme of things but my pay will run out in not much longer and I'm 12 years into the only career I've ever done, so obviously keen not to lose that (I say all this very appreciative that many will have been in this situation for years or decades - I definitely do not mean for one moment to take away from that, but we're all going through this, eh?).
Thank you for suggestions re referrals. At what point do people normally tend to get that in the NHS? I can't see my GP doing that yet (I've got an MRI booked but didn't have a CT and I think I'll only here from my neurologist if the MRI is bad). I thought PCS was after 3 months but Headway said after 2 weeks; my GP hasn't referred to it at all.
Anyway thank you again for your reply; really appreciate the community of everywhere here who 'gets it'.
I'm not sure about the NHS, as they often expect concussion to clear up by three months mark, but it wouldn't hurt to push for a referral? I wonder if the Headway helpline people have any ideas on that front? (You should get some sort of feedback after the MRI). Consider tracking your headaches on the migraine buddy app - it gives you something physical to discuss with your doc and a way of judging the effectiveness of treatments or other changes. By the way, although I really hope your symptoms clear up sooner, it's worth noting that there used to be very little research on PCS post six months - so it's like it doesn't exist...Sorry about the time you've had to take out of work, it's a very difficult time for you. Try and get on top of your fatigue - with the wonderful benefit of hindsight, a lot of my issues stemmed from fatigue. The screen breaks do include tv and phones.
Ps sorry - what is deconditioning? Do you just mean losing fitness? Unfortunately mine was improving but then had a chest infection, UTIs, etc so fitness gone right back down again. I know it'll come back but it's slowly, slowly - unfortunately I live on a very big hill so walks are pretty short until the chest recovers, but think it's coming back!
Deconditioning - yes losing fitness, it makes the fatigue problems worse.
If you acquired any oculomotor or vestibular problems with the MTBI a stationary bike doesn't trigger them in the same way as walking or a treadmill. Checkout the work John Leddy did in the States (Buffalo uni) on the buffalo treadmill protocol too.
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