I was hit by a bike on 6 March and suffered concussion, and now seem to have post concussion syndrome. Initially I went back to work quickly, but have ended up being signed off work – I am now on my seventh week off. I wondered whether others have experienced the eye problems I have: my eyes feel extremely tired if I read for more than 30 minutes and I feel nauseous and headachy. I have other post concussion symptoms as well: I find face-to-face meetings and phone calls very tiring, am forgetful, and struggle to organise things.
I have had my eyes tested and been given a slightly altered prescription, but that hasn’t made any difference. The optician is also treating me for dry eyes, but I’ve been using the treatment for six weeks now so I suspect the dryness has improved. I have an ophthalmology appointment on 2 July.
Has anyone else had this type of eye symptoms, and if so, any tips for recovery?
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ClaraJ
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Hi Clara, all your symptoms are familiar and are very common with post concussion syndrome. Some people get through it within months and others still have it for years if not decades. You are probably suffering from sensory overload on top of all the cognitive and memory issues. Your symptoms may not be fully manifested yet. Go to your appointment with the opthamologist and see what happens. There are quite a few of us who have had and have problems with vision and have found out that it is not the eyes that is the problem but the visual processing in the brain. Hopefully it is the eyes and it can be sorted out for you. Once you rule that out and you still have problems then you may have to consider other options.
It takes a bit of time to understand and get your head around all the different symptoms and you may have to change many things in your life. Hopefully you will get well soon but if not there is plenty of help here. Some people have good services in their health authorities and others have not and end up living in a nightmare. Please do not accept any mental health diagnoses from any doctor, you have a brain injury and they get them confused. (just an early warning for you).
Cat3 below has detailed the steps below to begin with. Take diagnosis a step at a time to rule issues out. Try to avoid bright and frequency lighting as much as possible until your appointment. You need to start a healing process NOW, avoid any situation that causes any problems, if you can just rest, by pushing yourself you may prevent recovery or even make yourself worse. If your health authority is good then they should provide all the necessary referrals you need. If not you may have to go a little off piste and find private and alternative methods. Stick to your health authority for now and see what happens. Rest is really important at the moment. Try not too worry all can be conquered in one way or another.
Hi Clara. Pinkvision is spot on. With any brain injury, whether resulting from impact to the head or natural causes, there's a period of uncertainty as scans can only reveal the visible damage and doctors can't predict long term consequences.
It really is a waiting game as every brain is a one-off and its uniqueness means there's no 'normal' recovery process to compare it to. Soft tissue damage can take weeks, months or years to resolve but you can maximise healing by resting, keeping extra hydrated, and avoiding stress, alcohol and heavy lifting until symptoms ease.
The fatigue, headaches & nausea are common after-effects and you probably returned to work far too soon. It's frustrating and worrying having to put everything on hold overnight, but pushing yourself too hard can cause setbacks.
You might like to phone the Headway helpline for extra reassurance, and printouts explaining your condition. The no. is freephone 0808 800 2244 during office hours.
Let us know how you get on with your ophthalmologist appointment. You might want to check re. the dry eye drops ; my optometrist insisted I use them for life ?
Hi, thanks very much! Yes, I had a very helpful call a couple of weeks ago to the Headway helpline.
Good point about the eyedrops.
I went back to work after I banged my head and I think it went down hill slowly for a week or so until I was signed off with concussion about 10 days later. I have had eye problems all along and now wear tinted lenses with a prism in for my right eye, as it doesn’t move properly with my left. Screen time and reading still make me tired. I went back to work on a phased return last September and even made it to full time. I think I went too quickly as I was signed off again after Christmas and have not been back. I can’t read books for any length of time - but my husband bought me a kindle for my birthday and I haven’t looked back. It’s brilliant- I have a paper white kindle. I am a teacher and I am now wondering if I’ll make it back at all which makes me sad x
Thanks for sharing your experience – that does sound similar. Really hope that things improve for you soon. That’s interesting what you say about the kindle. I also have a paperwhite kindle and I have to say it feels one of the easiest things to read at the moment.
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Hi, do you read the kindle with your tinted lenses on or off?
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I wear them for any close reading. Since my concussion my eyes don’t work together correctly close up. There is a prism in my right lense to correct this. They’re great, as I can read outside if I want to, I never used to be able to do that! They also have UV filters.
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Hi, thanks so they are for a physical condition and a sight condition relating to the eye. Do you have any visual processing issues that you know of. The tint would be an indicator. I'm asking because I'm generally interested in the subject, I had multiple visual issues with nothing at all wrong with my sight/eyes as such. I am on my second pair of lenses now the first being blue to correct pattern glare and now the second being green transitions to deal with sunlight, if this works then next the optometrist will try to solve issues with LED and fluorescent lighting that flicker. Thanks for your reply.
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Hi, I think it’s related to processing, my processing is below normal, but my cognitive ability is higher than normal. My right eye aches when I’m tired, they haven’t found anything wrong with my eyes except the working together up close. I hit the right side of my head above and below my eye. I also bruised my chin at the time. I can still remember the shock and feeling that everything inside my head had shaken. Migraine is a huge issue and of course that doesn’t help with vision. I don’t like fluorescent lights either and can’t do screens for long, or background sound, high pitches or lots of people talking around me. I am coming to terms with the fact that this is what it is though.
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Seems that many off these issues are very common. As to the pain around the eye, I get the same thing, I hit my head on the back on the left and the painful eye is the one on the right. My jaw and ear have problems on that side too. I've got a referral to the ENT clinic for that. My jaw locks up on that side and is painful right where the ear is, the eye area hurts above it and the skin droops down covering about a 3rd of my vision. I think it's to do with my head being whipped back. I think when these areas get jolted or shaken then is causes some kind of tension. You may have something similar because you also hit your chin. Next year I should be getting the LED light issue looked at, I will keep the online group informed if my optometrist solves the problem. (she is retired now but hopefully she will go back to finish the job). There are screens to put over your computer screen, I was thinking of experimenting. There are lenses called FL41 that can help, apparently, to deal with the fluorescent/LED light issue. Good luck, keep well.
Hi Clara , I had a tbi 2 years ago after falling off a rearing horse backwards onto rock hard ground and my eyesight was badly affected by the bleed to my brain . I had double vision for a while and could not tolerate bright or flashing lights and found it impossible to read or watch tv . I saw a Neuro opthamologist who prescribed glasses for me and for the first year wore dark lenses which relieved much of my eye strain . I found it more comfortable to wear the dark glasses to block out much of the normal day to day stimulations that normally I would not have even felt difficult . I saw the opthamologist regularly and had my lenses changed as my eyes improved . It is now two years since my accident and my eyes still tire easily if over stimulated by watching too much tv or being in bright lights but are improving all the time - time seems to be the only healer plus support of a good Nero opthamologist- hope your eyes start improving soon and this info has been helpful. Liz
Hi Clara , I was referred to the Neuro opthamologist by my neurologist consultant - you could probably get referred by your GP if you aren’t seeing a Neurologist Consultant
I would agree with the other replies I’m afraid and as I fellow post concussion sufferer I know it is the last thing you want to hear -“It takes time”. The number of times I felt like shouting at my neurologist how much time?! Why don’t you know anything?!
I found the tiredness quite overwhelming and ended up sleeping a lot of the time.
The memory loss scared the hell out of me though and probably upset me the most.
You sound a little like me in as much as I went back to work very quickly, and I work in a high pressure industry where time off for anything is just not the done thing. I had to go back on 2 hours a day to start with and do a phased return.
I returned to find I couldn’t remember even how to save an email on the work computer system. Which made me burst into tears - I was extremely emotional as well and cried at everything.
I found no problem with my eyesight until I got back to computers. Then it was horrendous. If I did more than 30 mins at first I would vomit. But I built it up over time.
However, I stuck it out and put into place tips from the guys on here and my neurologist, and now just 4 months on from my head injury I am back at full time work.
The only issue with my eyes I get is if too close to the computer now but I also ensure I get regular breaks every hour to rest my eyes.
My headaches are gone, my tiredness is at a manageable level, I don’t cry at everything, and I remember a lot more of my job. More is coming back every day.
Acceptance is going to be a huge part of your journey.
You will heal but your brain takes a while to heal and things may change along the way.
Take comfort from the fact you are not alone. Lots of us have been through it, the highs of the achievements (remembering something or having a headache free day were mine) and the lows (why me, no one understands, and as I’m a workaholic, if I can’t do my job there is no point to my life). I’ve moved on from that last one!
I’ve picked up lots of tools. Lists worked for me for memory - got that from someone on here. I always think I’m going to remember it and then never do. So I have a book to write things in. So I can look back.
Also if you have memory issues, I found one day I couldn’t remember the pin for my mobile. It never came back to me. I had to wipe my mobile back to factory settings and reload it from a back-up so if you have a mobile with a pin - a) back it up regularly b) write the pin somewhere. This happened to me 3 months into my recovery!
Don’t do more than you are able. Your brain needs rest. Be kind to yourself. But in all likelihood you will get better. The symptoms will lessen or disappear.
Hi, thank you very much for sharing this. May I ask – did you go back to work when the screen time was still making you feel nauseous? At the moment I can’t do very long at all so there doesn’t seem any point trying to start work again. My tolerance hasn’t improved over the seven weeks I’ve been off work.
Some days I’m not sure if it was the right thing to do. The industry I work in is stressful and demanding and I used to do 12-14 hours in the office before I my injury.
When I went back I did a phased return and at first I couldn’t manage more than 2 hours a day or I would vomit.
I increased my hours like so:
Week 1: 2 hours every day
Week 2: 3 hours mon, wed, fri and 2 hours Tuesday and Thursday.
Week 3: 3 hours every day.
Week 4: 4 hours mon, wed, fri and 5 hours Tuesday and Thursday.
Etc. Until I reached 7.5 hours every day.
Around week 5 I suddenly had a massive surge forward and skipped about 4 weeks (probably not wise) so full time work happened a lot quicker for me.
But I take a break from the computer screen every 30 minutes. A break of at least 2 minutes so my eyes (and brain) can rest.
In the early days I used to take days off if I got concussion headaches or really bad nausea etc. My manager had sent me to Occupational Health and OH were supportive of this so I was lucky.
But whilst I would say I am 99% back to ‘normal’ something overwhelmed me at work the other day and I completely freaked out, burst in to tears and my brain couldn’t process it at all. I got my first concussion headache in months.
I’m not a crying person usually but have been since the concussion.
My manager saw how panicked I was (I couldn’t remember something on a key client and it was time pressured etc) and she took it away from me and told me not to worry. I’m lucky I have a lovely manager and the one above her has actually has post concussion syndrome herself so there is some understanding on my team (even though not in my company so to speak).
I think I would say take your time. There are hundreds of jobs out there. You only have one brain.
Let yourself heal until you feel ready to go back. When I went back I felt pushed into going back too early and I felt alone and that no one understood.
I think I am ‘coping’ but if I had the choice I would have rested longer and let my brain rest properly.
It’s so hard because no one can see the injury. You yourself feel you might be inventing some of the stuff because the symptoms are so strange with PCS but it is real, it’s a brain injury and your recovery is more important than any job.
Don’t forget with work, once you are back there isn’t a chance to step off that treadmill.
Belated thanks for this. Really helpful to have your return to work hours set out. I’ve now been put on furlough which is actually really good as it reduces the pressure to go back for a few months.
I have experienced some similar difficulties and am due next week to see a behavioural optometrist as recommended by Headway. May be worth looking into and contacting to see if this may be something that can help you. Having had the difficulties myself for over 6 months I would recommend rest I know everyone says it but it really is the must effective treatment. Build up slowly the things that you find difficult for example reading and reduce your screen time etc
Thanks very much! I feel like I am at a plateau in terms of how much I can cope with reading-wise, so it’s hard to know how to build it up when doing any more feels impossible. It does sound like resting is the best strategy for the time being.
Since I replied to your message I did a bit of research and found a podcast -ask concussion doc. There is a podcast on there regarding reading that may be of interest to you as well as lots of other topics.
I still am having difficulty. My eye tests have all been fine.
I did get tinted glasses which help a bit.
I can use this with an anti blue light filter . That helps.
I've managed to get a referral accepted for neuro opthalomogist but all on hold because of covid 19.
It's good not to try and read when weary.
I find smaller chunks like on this small mobile easier.
I also have had terrible headaches. And nausea. That has lessened partly as I've learned not to push it.
My eyes get very heavy with a tension on my skull. Glasses also feel very clamped.
I think wait for your appointment. Stay hydrated.
Dont try roo hard as for me makes it worse. My long sight is much better.
I now have a pair of glasses for that only so ging for a walk is more relaxing.
Also I do cawthorne exercises that include eye exercises.
Trying to read a bank statement makes me feel ill and irritable. ....and its healthy at present!!
I think it may be the nerves / pathways from eyes to brain need more repair. The back of my head can sizzle and be painful like now writing this. Also a numb nose ??
Hi all, just an update on this. The ophthalmologist spoke to me at the beginning of July but simply said I ought to see a neurologist instead. I had been waiting for an NHS appointment but that isn’t till the end of October.
Finally last week I saw a neurologist with lots of experience of concussion privately and his view is that this is likely to be migraine (I had a history of migraine already but hadn’t really linked the two). He ordered an MRI scan just in case anything has been missed but has also started to treat me with daily prophylactic migraine treatment and will see whether things have improved in a few weeks’ time.
His view is that, if the “physical” symptoms can be treated with migraine prevention, then we will be in a better position to assess my cognitive symptoms. I can have cognitive testing and see a neuropsychologist if necessary. I am so thankful finally to have seen someone with some kind of “game plan”!
I am still bearing behavioural optometry in mind as an option if these things don’t help.
I had the same sort of symptoms with my TBI. I hope your neurologist works out for you - but trust yourself and persevere if the first or second migraine meds don't work out, because it's ok to keep trying new things - my first neurologist referred me on to another neurologist who specialised in brain injuries, who said that post traumatic migraine is different from ordinary migraine, then referred me to a neuropsychiatrist who prescribed yet another med which did actually shift the combination of constant headache and regular migraine like symptoms - and mainly reduced it down to nausea when I 'overdid' things - which was a huge relief ( the specialist physio he referred me to also did work on my neck to help get rid of headaches, and gave me exercises for my oculomotor and vestibular issues.. I've had the neuropsychology tests, which flagged up some issues compared to my peer group, and am getting some really good support from a neuropsychologist to manage my fatigue. Really interested in the idea of behavioural optometry that you mentioned though.
Thanks very much for this really helpful reply. I have been on Amitriptyline since mid August, gradually stepping up the dose, but unfortunately it hasn’t done much apart from having a good effect on my sleep. Therefore, I generally feel able to do more in the daytime. However, I am still getting the same headaches, pain behind my eyes, and nausea as before. I am seeing the consultant again on Monday and expect I will be trying different meds. Interesting that you went to a neuropsychiatrist- haven’t heard of anyone being referred to one.
Yes that makes sense from my experience with this, my neuropsychiatrist said that in a more recent trial a lot of the impact of amitriptyline was found to come from improving sleep. He's been really practical and clear that my headaches and fatigue have been a consequence of the brain injury - it hasn't been an 'It's all in your mind' thing at all.
I was really quite panicked by a referral to a psychiatrist ( don't know what I expected) but what I understand is basically they know most about how drugs work on the brain, and they apply that knowledge to dealing with brain injuries. An SNRI that works for pain has worked well for me on my headache - but while all brain injuries are individual, it's really noticeable on this site that a lot of the symptoms I've had are repeated by so many people here. Someone I talked to on the Headway helpline had also mentioned that referral to a psychiatrist could be helpful.
My symptoms came on after 20 - 30 minutes on a computer screen when I tried to carry on working from home. One migraine early on was so bad the GP sent me straight to A&E for a scan and promptly signed me off work.
I find it is very helpful with nausea and fatigue to take a break from any activity after 45 - 50 minutes and use a meditation/mindfulness app on my phone to completely zone out - or even just lay on the floor for ten - fifteen minutes with my eyes shut - but it took me ages to work out that reading and watching TV also count as 'sctivities' in this context....
I hope you get on alright at the neurology appointment, it's worth making a list of everything you want to ask beforehand, because it's easy to forget things. I also found it helpful to take someone else in with me too, for a second take on what can be a relatively short appointment. Good luck anyway.
Oh forgot to say that I found it really useful using the Migraine Buddy app to record headaches and then taking the printouts / emails from the app to appointments with me, to back up what I was saying about the duration and severity of the headaches. It's good when you can see demonstrable improvements too 😊
Thanks again. It does sound like you have quite similar symptoms. I can also manage about 20-30 mins on a screen or looking at a book before I start to feel ill. Will be interested to see what the neurologist recommends on Monday. How long did you end up off work for? Just feeling nauseous when I have overdone it would be a great result compared with how I am now!
Well that was how I felt too! The neuropsychiatrist thought the headaches must have been masking the nausea - which also eventually went. Bearing in mind what other posts have said about no two recoveries being the same, and other people having managed to go back to work, I've come off slightly worse from the mild TBI, as two years down the line, I've had to take early retirement (my job was pretty intense with a lot of deadlines, and it wasn't feasible to go back - and I was well supported by the doctors, which helped me resist the pressure to return before I was ready). At the moment I've still got a problem with fatigue, but with help I am getting better at managing it (more breaks and meditation) and so feel a lot better than I did, but have distinct limits on what I can achieve in a day. I still draw on the stuff I learned early on at the mindfulness course ( MBSR) suggested by the neuropsychologist who did my cognition testing. It's really been very helpful. But don't worry about my longer timeline - everyone really is different in recovery, and I also had a previous concussion which apparently would have had an impact too ( sorry no pun intended...😊)
Glad it was helpful, I wish I'd known about this forum early on, it's a huge relief even now to realise that other people have the same symptoms/ experiences. Hope your neurologist appointment went ok.
Update: the neurologist is putting me on a different migraine preventative, Candersartan and reducing my amitriptyline to a low dose of 25mg (if I can tolerate it, as it’s given me awful tummy problems) because of the good effect it’s had on my sleep. Hopefully the new drug will help.
I now finally have my first NHS neurologist appointment in 10 days’ time so I am hoping they will take over my care from here. Unfortunately my symptoms are still the same at the moment so I can’t manage long reading or looking at a screen before I feel sick and migrainey.
Your new drug sounds like an off label blood pressure med - interesting. Let us know if it works for you. I was warned not to take any of the over the counter pain medicine ( ibuprofen, paracetamol etc) with a migraine preventative as it would interfere with the action, and possibly generate a headache with regular use anyway - that was hard to do, but ice packs and/ or meditation helped a bit, oddly enough.
Try to take a break from screens or reading before you are likely to get a headache - it's really quite difficult to stick to, but if you trigger a headache after 30 mins, set a timer on your phone for 20 minutes and take 10 minutes with your eyes shut (and laying down preferably). Alexa is quite good for timers too.
( I'm writing this knowing I've overshot my limits on my phone ironically - so easy to give advice, so difficult to follow it! 🤣)
I only found out recently that it mysteriously seems massively better to lay flat rather than rest sitting down.
The first two drugs I was given for migraine prophylaxis were quite unhelpful - I only managed the first one for a week - I was incredibly depressed on it - which totally lifted as soon as I stopped. I managed a beta blocker for longer, found that fairly depressive as well - but neither really helped my headache, Amitriptyline wasn't too bad though - it gave me a very dry mouth, and it helped my sleep. Once I was referred onto the London neurology team they said that post traumatic migraine was different from regular migraine, but both neurologists had said that as I'd had migraines previously, I was more susceptible to headache after the TBI. One kindly pointed out the white spots on my MRI that showed that I'd had migraines 😱...! But the combination of drug number four, the specialist physio on my neck for my headache, and advice on taking breaks, did wonders for the 24/7 headache, and the more migraine-like attacks - it eased really quickly, and improved fairly steadily. But I can still get a milder background headache if I overdo screens - but not the more extreme migraine-type attacks - thank heavens. The advice here to keep hydrated is good too.
I hope your next appointment goes well, and you get a break from your headaches soon. Let us know how you get on too 😊
Thanks v much. The NHS neurologist agreed with the course of treatment suggested by the private guy and I am now 3 weeks into taking Candersartan and progressing towards coming off Amitriptyline. No joy so far though! I also wonder whether it’s as simple as migraines or whether there is an issue with my eyes post concussion which is triggering migraines after some time reading. Still wonder whether I ought to see someone else about this (though ordinary opticians can’t see any problem).
So sorry you have the bad headaches and migraine still. It might be part of the effect of your brain injury, rather than just your eyes, I'm afraid . Your brain can get a bit overloaded with stuff that wasn't a problem before.
It's really important to keep within your limits and not push through any nausea and headache.
Have you had a break from your headaches at all yet? I do feel for you.
I know it's hard, but try setting a timer on your phone and only reading for ten minutes at a time - in a quiet room.
My headaches started to reduce when I started these treatments:
1) exercises I had to do for my oculomotor problems.
2) physio on my neck to relieve headaches coming from nerves in my neck,
3) Taking low dose Duloxetine initially with reduced amitryptline.
4) Psychology appointments to help me manage fatigue (and the enormity of getting a brain injury.)
5) resting with my eyes shut in the quiet for ten - fifteen minutes every hour.
(By the way, my eyes have tested normal throughout, and I don't have a constant headache anymore)
I see that people on here have had success with specialist opthalmologists and special lenses too - so it might help you get more information if you do a new post just asking about people's experience with those?
I hope things ease up for you and the Candersartan helps. It is hard to function with a constant headache, so be kind to yourself.
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