Hi, Can anybody recommend a good pair of indoor computer/tv screen light blocking glasses (that actually work!) ? I have suffered from light sensitivity issues since suffering a concussion injury last year, and now have real problems specifically looking at computer screens (which being a computer programmer is a little problematic!), also mobile phones and watching tv are very uncomfortable to the point I am avoiding them all as much as possible. I've tried some different ones off Amazon but none have made any difference. I maybe looking for unicorn poop here I know, but if there was anything out there that could help i'd love to hear about it!. Any help appreciated. Thanks
Any good indoor light sensitivity glasses that at... - Headway
Any good indoor light sensitivity glasses that atually work?
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Bb1878
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I had similar problems where bright light would trigger migraine and found that occupational specs with subtly tinted lenses from my optician really helped. They didn't need to be really dark, just comfy and enough to take off the edge. They didn't cost a small fortune either.
Opticians I think are best-placed to advise about different types of lens and lens coating/lamination/polarization that can assist with reducing the impact of both glare and flicker effect on eyes. There's an awful lot of lens products out there; some will be appropriate for screens/lights and some will not.
The trick is to locate a really good optician that knows a lot about occupational prescriptions/lenses. I suggest you ask around if you aren't already a patient, in which case an eye check may well be worthwhile for eye health and glare/flicker management advice.
I hope you find something that works for you!
I rang the headway helpline and was advised to try a cheap pair of yellow tinted glasses. Working as a supervisor in a busy engineering environment I asked my manager if he could get me some yellow tinted safety glasses similar to these:
screwfix.com/p/bolle-slam-y...
I've also adjusted my computer screen brightness and set the blue light filter. Now I can just about cope with a day in the office sat behind a computer. It also means I don't have to change my glasses when I do my daily limp around the factory 😂
I still have to take regular breaks from the screen as the fatigue catches me by surprise with lengthy screen exposure, but its better than it was.
Dear Bp1878,
Yes a 'tricky' one, especially as you necessarily need to have 'Screen Time' a lot! A few 'Off The Wall' suggestions, for finding Unicorn Poo.... Ask to speak to an Optician / Optical Specialist and 'See' if they can help (sorry I just Had to😊). Maybe ask, your own Care Team, for a Brain Scan- it might reveal the problem (worth a try?). Other, purely physical, 'things' worth trying.... Different colour 'filters', either on the screen or on your glasses. (I knew a lady, some years back now, who wore Rose Pink/ Purple glasses- allegedly so she could see better!)
There may be some 'Very Careful And Gentle' eye exercises that you MIGHT be able to try....but DO get the 'Green Light', from the Professionals first.
The main issue, in your case, is whether the 'Sight' damage is actually In the Eye, the Optic Nerve or in your Brain or- just for 'fun'- partly everywhere.
I myself have slight 'UV light sensitivity', though less now that when I was first ill, twenty-three years ago. I just buy, good quality, sunglasses.... which could be an Option for you, but again 'check' first.
Sorry that I haven't been much, if any, 'Help' finding the Unicorn Poo/ Hens Eggs. a true story, to make you smile (I hope).... My Mother once said to me "I'm off to the Opticians, so I'll SEE you later" I genuinely don't think that she realised what she had just said! Sending you my
Very Best Wishes
AndrewT
Hi All, thanks a lot for the very kind, useful (and funny!) replies. Yes, I'm going to spk with my optician again, see if they can recommend an occupational pair of glasses with some kind of filter on them. I do have prescription glasses for reading and another pair for mid range use, but neither stop the pain and discomfort I get during screen time. To add to the fun I also have severe dry eye (also since my accident) which compounds things further! I'm currently on a (very long) waiting list to see a neurologist to hopefully get the grey matter checked out properly, I've had a brain ct scan at the time of my accident, and also had an ophthalmologist examination recently and both were clear. (I've also had a ruck of other tests which I wont go into. !, again all clear) . I agree it's just a case of keeping going until find something that works best for you.. BTW this msg took less than 10 mins to write on my smartphone..and the eyes are burning already...! 😳
For dry eyes, try Hycosan 'extra' eye drops and use as frequently as you need to. Overnight, try 'Artelac' eye gel which is thicker stuff and keeps eyes comfy while you sleep. It also has no lanolin in it, which can irritate sensitive eyes.
All the best.
The Bridgeit, thanks a lot for the recommendation - I will try these out. At the moment I'm using a combination of Hylo Forte drops during the day, and the thicker gel at night. This seems to be more effective than the eye drops I've previously had, altho I'm still suffering a lot with it. The thing I've found which helps the most though - is to limit (as much as possible) screen use (phone, tv, computer). Its difficult when you work in IT like I do but I'm trying to do it as much as I can. I've got an alarm which goes off on my watch every 20 mins, after which which I go do something else for a couple of mins. Seems to be helping. Thanks again. I will try those drops also - the more ammunition the better 😀. All the best.
Xailin night no preservative is ok for my dry eye in the long term I was told preservative eye drops could damage eyes, but I was allergic to hylo night gel. I find the non preservstive hylo forte in the day v good, I ring scope Opthalmics for advice on dry eye and hylo forte and they are helpful
Hi Amber-11, thanks for your reply. I haven't heard of those ones - i will check them out thanks. Hylo Forte seem to be working better than previous drops I've had, but still not great tbh so I'm glad of any recommendations like this! A lot of this is trial and error I know so happy when a new name comes along I can try !😀 I've not come across scope before, will check them out also. Cheers and best wishes Bb.
Scope Opthalmics make hylo forte and can send pamphlets about dry eye. my gp kindly said don't hesitate to use hylo forte a lot each day, I use it a lot more times and more drops then recommended , and then the pain goes, I get it on prescription . The opticians have given me dry eye tests , with a dye when I have an eye test , and say l have severe dry eyes .
Ah right, yes I see it now on the label. Cheers! I too use it 'as and when' I need to, seems to be working better than all others I've tried so far. I also supplement this with a eye spray (optrex type thing) which just freshens the eye every now and again during the day. I too had the dry eye test (shirners test or something) where they put strips under your eyelids etc, and also scored very high (or low rather) for tear quality, high for dry eye, with left eye being slightly worse than right - which bears out as I have more issues with my left eye than right. Thanks again for your post and best wishes 😀. Bb
I am in a very similar position to yourself. I also work in IT. I find that I can’t tolerate more than 10 mins screen time at once or my eyes get very sore, I get eye strain and usually a headache at my temples. Then I can’t tolerate any screen time after that. I have had my vision checked by the optician and all was fine. I got a referral for a neuro ophthalmologist and that was a waste of time and money. They just did the same tests the optician had done and checked the optic nerve. I asked about tinted glasses and was told glasses can’t help me as there isn’t a problem with my eyes, it’s all in the brain. I would have been light sensitive even before my accident but it’s worse now. I had no problem with screen before the accident, just bright sunlight & glare. Anyway, I’m back with the optician on Monday again to get my regular glasses checked out as I’m getting some annoying reflections in my prescription sunglasses and am going to ask about coloured lens again for screens but I think I already asked them and they told me there isn’t much to help.
I find I can’t tolerate screens for longer than 10 mins but can tolerate tv a bit longer. Usually about 40 mins. Would you find the same?
Hi Bragan, sorry to hear about your situation, yes it is very similar to mine. It's extremely difficult isnt it, being in a job in which your expected to sit in front of a screen all day, when all you can manage is around ten minutes at a time before the pain and discomfort kick in. I am currently wfh (I guess you are too) which has enabled me to at least get away from the screen when I need to (e.g to lie down with eyes closed until pain lessens). I wont have that option once things in the world go back to normal (whenever that is). TV wise. I can manage about one hour (tops) tv time, but thats with breaks to bathe my eyes etc, but depends really on my day, if it's been a bad one then theres it's no tv time of an evening at all. It feels like its kind of taking over my life sometimes, but I also know I'm lucky as things could have been much worse. I wish you luck with your appt next week anyway. I have an appt at specsavers next week to look at some "super readers", will report back my findings. All the best!
I’m not working anymore. I had to take leave from work. I’m also a mum to 3 small kids so found that having constant headaches just wasn’t something I could cope with. Adding in the home schooling over the last year and my husband been a healthcare worker, it just wasn’t possibly to keep it all going. I also had problems with cognitive fatigue but I’m making progress on increasing activities in all other areas, it’s just screens and TV I’m stuck on. I have only just learned to break the habit of TV at night. I always had the habit of once the kids were in bed to switch on the tv and zone out for an hour. But I have just realised recently that watching TV when I’m already tired probably isn’t a good idea so now I only watch 20 min light episodes on nights I’m not feeling as drained. I do feel like it’s taken over my life too. I’m glad to have the symptoms somewhat under control now, but when you take out all the activities that cause issues life seems very restricted. I hope you get on well this week. I already wear prescription glasses for astigmatism and distance reading so it’s a case of if there is anything that can help within my current prescription.
Hi Bragan, thanks for your reply. I'm sorry to hear you were unable to continue with your career due to your problems. I'm ten months on now since my accident, so maybe still early days I know. I haven't worked in an office since beforehand (and now have a new employer), so I've got that to come when things finally ease. I just hope I can cope in an office environment somehow,I'm dreading it tbh. Regarding the TV watching, I'm like u pretty much. An hour tops unless my eyes are bad then it's nothing at all. Incidentally, I bought a cheapo mini projector from amazon recently (for kids movie watching). Tried it out last night - seemed a bit easier on the eyes than watching tv directly,.maybe due to it being reflected light onto a wall, rather than looking directly at lcd screen I dont know. Could be worth a try. think I paid around 70 for it in amazon, kids love it aswell. All the best anyway. Bb
Hi Bb (and Bragan) sounds like Pinkvision has a point about the flicker rates of screens, if a projected image is easier?
Sounds like my issues with screens are slightly different - I don't get the sore eyes - but perhaps the headsplitting headache kicked in first. However, what I learnt from my rehab, was that more than one thing can be going on at the same time on the same issue.
A few things to try:
Talk to the Headway helpline 0808 800 2244 about what other referrals you could put in place before you get to see a neurologist - because it's not great to have a long wait if you can help it - particularly if the first NHS one then doesn't have an interest in MTBI and post concussion issues (not all neurologists are created equal when it comes to head injuries). So perhaps also query with your GP if your referral is to a specific neurologist - and find out who that is, so that you can do a little research on them.
Try ten minute 'brain breaks' every hour (or even less - experiment with this) if you aren't already, to fend off problems before they kick in - (embarrassingly, I find laying flat on the floor with a timed meditation recording - the Headspace app works best for me - try it, the basic course is free). Some issues are fatigue related and this is one way to handle fatigue.
One oculomotor exercise to try - set a timer on your phone for one minute, and, while sitting down, hold up a pen at eye level, at a distance where you can keep it in focus, and slowly move it from side to side, tracking it with your eyes without moving your head - keep going for a minute - or until you get an increase in symptoms of any kind (I got fairly nauseous and dizzy originally ). Do this exercise five times a day. When you can do the full minute with the pen in good focus, even when speeding up, then try doing it standing up with your feet apart, until that's ok, and then repeat the whole process standing with your feet together. This ( private) specialist physio in London was great at picking up on a lot of post concussion problems (that weren't sorted by a regular physio) but there must be others out there myhealthspecialist.com/spec...
See if different TV programmes to usual are easier to watch - I had to ditch action stuff for slow moving tv detective stuff, and I still find adverts a nightmare - too much flashing and movement. But remember that TV is still a cognitively tiring thing to do - so still take brain breaks.
It could be early days for you still, it just depends on the trajectory of your injury (and of course what work different people go back to). It's supposed to be better to take remedial action sooner rather than later - but there isn't a great deal of long term research. A lot of issues come down to managing fatigue effectively, because both cognitive and physical fatigue (which are often bidirectional) makes all effects worse. My neuropsychologist was great with help managing this.
Best advice I had from neurologist #1 was to get an exercise bike or elliptical off social media and use it everyday for a max of twenty minutes. I then learned later, the big caveat is you stop exercising before it makes any concussion symptoms worse - it needs a bit of trial and error - and work up very gently - use your heart rate as a guide (see research by Leddy at Buffalo university in the USA.) Two fold impact - it addresses de-conditioning, and apparently the Leddy / Buffalo protocol can reset the autonomic nervous system after concussion. (Theo Farley coached me on this as well as a load of exercises for oculomotor and vestibular stuff. )
Read 'The Ghost in my Brain' by Clark Elliott too - I think he's done some YouTube as well ( I haven't watched those though.)
What actually happened to you Bb?
Jen 🌸
Bragan
BlueSky01
Hi Jen, wow - thank you so much for taking the time to write all this! It's very much appreciated. I will try and take onboard all of your good advice (my head is spinning just reading it 😀). Thanks a lot for the heads up (no pun intended!) regarding the neuro- I really didnt realise this. I will spk to my gp again to see if theres any treatment I could benefit from whilst waiting for my appt. Fatigue, as you mention also is a massive problem for me, I used to regularly run 5k about 2-3 times a week before this, but can now only manage walking short distances before the fatigue kicks in. I do have a treadmill but I've only been on it a couple of times (walking). I am trying to get myself into a routine where i do short walks on it maybe 2-3 times a day...but its hard to keep this up when fatigue levels change daily, but I am going to try and make progress with this as I know I need to push myself a little more.
Regarding my accident, i I slipped on a small patch of water and banged my head on a tiled floor. I dont remember much else until I woke up a few minutes later about 5ft away - face down on the other side of the room. I didnt feel too bad afterwards strangely enough, a bit of a headache and a bit groggy so just took some paracetamol and rested for the day. It was the following day when I realised it was a bit more serious. I got up from the sofa and just collapsed to the floor - and then couldnt get up, i literally had no strength in my arms to lift myself up. My son had to pick me off the floor - literally. From there I was taken to hospital, head ct scan, heart scans and other tests later I was told it was concussion, and discharged, and it was shortly after that these other symptoms started to arise (vision, fatigue etc) . That was nearly 10 months ago and here we are today. Feels like there was a 'before' me and now an 'after'me..if u know what I mean? Hopefully over time I can get back to something resembling the 'old' me, but that still seems a long of way off at the moment...but one day at time and all that.
Re Pinkvision - yes he may well have something there. I've just seen his latest post and will respond to it later but seems very promising!
Anyway, thanks so much again and take care.
Bb
Oh poor you - I sympathise - I had a box fall on my head at home. It's a bit horrible suddenly appearing in post concussion world after an accident at home, isn't it? Can certainly recognise the before and after thing - I think you'll find that's normal in this forum..
I was stuck in my recovery around the nine month mark, and neurologist #2 referred me to his brain injury team and I made some good progress. Which is why I'm sharing.
Ok. By now I guess you've worked out that pushing through the fatigue doesn't work - and in fact backfires on you over the next day or week? Brain injury fatigue is very similar to Chronic Fatigue Syndrome /ME, and resources on the web for handling CFS are useful for us. A fatigue diary is good both as a tool for you to see what drains your energy, and to show the medical professionals (and to chart progress). Jot down how tired you are out of 10, three times a day, and what you've been doing in-between. The aim is to avoid boom and bust patterns, i.e. doing more one day because you feel ok, and crashing the next. Basic plan is to behave on good days like you do in bad days, and then only increase your activities by about 30 minutes two or three times a week. Really difficult I know. I only found my true baseline non- fatigued level during the first lockdown, and it's difficult to hang onto, but it is good to know it exists!
Alongside that, you do need to exercise to avoid de-conditioning - but after concussion, people are exercise limited - as you've found out. Again it's important not to push through this.. which is a natural reaction, particularly if you're a runner I imagine?
Leddy continues to do work on this -
pubmed.ncbi.nlm.nih.gov/303...
Basically do 20 minutes on the treadmill a day, no more - but only at 60 - 70% of the pulse rate that you start to get worse concussion symptoms at (tight band round head, increased dizziness, nausea and so on) so you are always exercising at a lower pulse rate / bpm than the one that will make you feel worse. After a few days exercising symptom-free at a low rate, increase your pulse rate by 5bpm - but ( really importantly) Stop exercising if you trigger any symptoms, and go back to the earlier lower level the following day Carry on doing this every day, as you gradually work up to your max BPM in these 5bpm steps (use an online calculator to work it out, if you don't know it). I started at 80 bpm I think from memory, possibly lower, and eventually got up to 155+ BPM, before I was rudely interrupted by lockdown!
See how you are on the treadmill - but be aware it may cause you problems because of your eye issues, independently of the physiological concussion - I was banned from the treadmill by the physio because of my oculomotor issue, and had to use a stationary bike (to keep my head from bouncing up and down) until it got too hard to get my pulse rate high enough and he moved me onto an elliptical.
Hope you get something out of all this!
Jen 🌸
BlueSky01
Hi Jen
Apologies for the late reply, my eyes have been pretty bad last couple of days so havent been online much. Thanks again for the info - yes this is helping a lot :-).
I will try and do that with the exercise, building it up slowly as u say. I did try (only once) jogging on the machine for about a minute - but it hurt too much (im very unfit now!) - and the led screen on the treadmill was bouncing all over the place which made me feel ill. I wont be doing that again in a hurry! You are spot on about the boom and bust thing - i went a bit mad a couple of weeks ago, forcing myself to do things that I wasnt really upto doing (e.g. gardening, heavy lifting etc), think I was trying to prove to myself that I could still do it... well it truly backfired on me, both physically and mentally,it knocked me right back to sq one for about 2 weeks, and effected everything (fatigue, anxiety etc) also my sleep went haywire again, had a couple of bouts of sleep paralysis (including a hallucination on the ceiling which Ive never had before). Ive now learnt my lesson on that and wont be doing anything like that again.
Sorry to hear about your accident, its strange how these seemingly minor incidents can wreak havoc with your life isnt it. Still, I know there's people much worse off than me so Im thankful I can still do a lot of things i used to do,albeit at a much slower pace.
Thanks again for your advice - its really appreciated 😀.
Best wishes Bb.
Hi Bb, sorry to hear that you had a crash, and that your eyes have been bad - that's rough, and hard to cope with, the sleep paralyzed thing must have been unpleasant.
Ok - try not to do that again now. You're absolutely right, the fatigue seems to make all the other symptoms worse.
I was told that you can get better, but not if you stick with a boom and bust pattern, and there is also a risk of burnout if you crash too badly. ( I wish I'd asked more about that actually - but am passing it on anyway).
Oh - and try and avoid lifting weights if you can.. Theo Farley said walking was good, but not swimming or weights. Annoyingly when I was watering the garden last year, he advised a smaller size watering can and so more trips lugging it to the flower beds.
Yes - doesn't seem possible that things change so much from what seems like a small accident at the time. But yes, lots of people worse off, and you are still in fairly early days, even if it doesn't feel like it, so you could still get a decent amount of recovery. Someone was on here recently saying their partner did recover in a year from his concussion. I'm a great deal better than I was in the first year ( bit of a blur that) unrecognisably better in fact, and back driving, but I have to manage my fatigue - good planning helps (don't always manage that!) I can use computer screens without splitting migraine headaches too now - screens are more of a fatigue issue now.
Are you managing to take breaks in the day? I think I've now proved to myself what I was repeatedly told, that I would be able to do more (and feel better overall) if I took brain breaks, rather than just try and push through the day.
I feel bad writing these long posts when your eyes are bad!
Jen 🌸
Hi Jen
No need to apologise- I'm grateful for all the good advice! 😀. Yes, I've started taking 'brain' breaks as u say. I've got a small sofa in my office area now (ie in the back of my garage..) which I've been trying to take a 10-15 minute break every hour, I've got an alarm set at quarter to the hour every hour during working day where I just go lie down and rest, I also use that time to apply a heated patch over my eyes to try and loosen the tear glands a bit. I'm so glad I'm wfh right now as wouldnt be able to do that in the office!
Thanks again for all the info and good advice, its great to hear you have progressed so much and that improvements can still occur over an extended time period, I'll be at the ten month mark shortly, I guess that it is still early days relatively speaking,i just need to stay patient and keep trying to do the right things
One day at a time and all that 😀Cheers and best wishes, Bb
Sounds good Bb. Take care, and let us know how you get on - you can always vent on here if you get fed-up! 😊
J
Hi All, just a quick update - I had my (long awaited) ophthalmology appointment yesterday...and they found zero issues. Had various scans, front of eye, back of eye, field vision, optoc nerve etc, all clear. I also had another dry eye test (which came back positive earlier in the year) and even that came back clear! Cant say I'm totally surprised by all of this but just disappointed, I guess I was hoping they'd find something and it would be treatable but I guess that was wishful thinking on my part. Onwards we go..hope everyone doing ok. Best Wishes Bb
Hi Bb, while it's good that all your 'eye kit' is in working order, that must be a frustrating result for you. So sympathies from me. Perhaps discuss with Headway? Take care 🌸
Thanks Jen. I spoke with Headway a while back and they were brilliant, they actually helped me to get the referral to neuro via my gp. I'm just waiting for that to come thru now...hopefully it wont he too much longer. Take care, Bb
It helps just to talk to someone who gets what's going on, doesn't it?
Perhaps another chat on Monday wouldn't hurt, they might be able to shed some light on your eye issues for you?
Take care
Jen
Hi Jen, yes your completely right, it does make a big difference speaking with ppl who have had similar experiences - I struggle to explain how I feel myself most if the time so it's no surprise that other ppl who have not experienced it dont understand! Ill give headway another call as u suggest, thanks, theyve been really helpful in the past. I think id maybe pinned my hopes a little too much on the opthamologist appt that it was both a relief and a disappointment at the same time when my eye scans came back all clear (if u known what I mean!). My immediate thought afterwards was 'well what now?' but I understand now (thanks to good ppl like yourself) that this is quite normal, and u really do have to take things one day at a time and hopefully things will gradually improve over time. Thanks again for your advice!
Best wishes Bb
That's ok Bb - it's very frustrating for you indeed.
I was apalled when I couldn't use a screen without headache. By the way, I did find the Kindle e-readers better to use than the laptop, and although I didn't have it confirmed by anyone, I think my issues were/are more about the distance my eyes need to travel from side to side across the screen, so that makes phones and smart readers easier- just because they are smaller. That's why those eye exercises I mentioned earlier in this thread basically slowly retrained my brain.
Have you read 'The Ghost in my brain' by Clark Elliott yet? That talks about concussion balance issues after a car accident being sorted out by glasses - I think he has posted YouTube videos as well, but I haven't watched them myself yet.
Don't forget to take brain breaks regularly too (Headspace meditations are perfect for timed breaks - and the basic ones are free)
But yes, definitely start with a chat with the Headway helpline tomorrow, for some more info and personal support. Let us know if you find out some good new stuff too?
Jen 🌸
Thanks Jen, I'm going to ring them later today. I'm actually looking at buying an e-reader at the moment as I too am finding these a bit easier on the eye than laptop/smartphones. I'm assuming this may have something to do with the non lcd so no flicker as mentioned by pinkvision . I did look up that ghost in machine book online, but I've not read it all, tbh, I'm not reading much at all really, find it difficult to read too much at the moment . I will have a look at the YouTube videos tho, and the headspace stuff. I downloaded the app will give them a go, many thanks again 😀, best wishes Bb
That's great, hope Headway was helpful - take care and good luck. Let us know how things go.
Hi Jen, hope your doing well?Was just wondering how you managed to cope during the 'dark moments'? (not sure how if thats best way of describing it but hopefully u know what i mean). Seems everything I try and do I end up back at sq1 - just keep hitting the same dead ends whenever I try and make progress and just cant seem to have 1 or 2 good days without crashing badly for the next 3 or 4 days afterwards. I know it's about pacing and not taking things too quickly, which I've tried to do but guess I've still not got to grips with it yet, I suppose. Its just so demoralising when u go to bed on a high as you've had a good day and feel much more like your 'old' self only to wake up the next morning back at sq feeling the complete opposite to the day before and feeling both mentally and physically all over the place,it just doesnt make sense.. which I guess is what tbi is all about really! Apologies- i know I'm feeling sorry for myself as theres ppl much worse off than me i just needed to get it off my chest hope u dont mind its just good spking to ppl like your good self who i know has been where I am and gives me hope that things can get better in time. Thanks a lot and best wishes Bb
Hi Bb - well, I think I'm heading directly to a crash tomorrow (wonderful post lockdown lunch and theatre today, but now a mega headache) so am sympathising with you in advance. Even if I 'plan' for a crash, it's never a good feeling while it's actually happening - and you're right, it can feel pretty dark indeed. Do try and watch your thoughts while this is happening - I think typically it's easy for me to drift into a range of gloomy thoughts which tend to make it feel worse (not that it isn't positively rubbish to be having a crash in the first place of course) but 'I'm going to feel like this forever... ' scenarios are quite tempting to invest in, and don't really help. Try a three to ten minute brain break - (anything to break into your thought patterns going down the worst route) I found the Headspace app on my phone was useful for this.
What you're describing is a typical boom and bust pattern of fatigue, usually described by a nice wave pattern on a graph - your task is to work out how to gradually flatten out all those curves on your graph - avoiding the big downward crashes of the 'bust' part of the cycle by doing less on your 'good' / 'boom' days - and only then gradually moving your graph in an upward trajectory, as you have smaller and smaller 'crashes' (what I called 'back on the sofa' days). Basically you need to learn to manage your fatigue, because it's hard to get better when you keep on having crashes in the 'bust' part of the cycle.
It's not easy, even for me after professional coaching, via my medical insurance. But if you can get coaching from a neuropsychologist to manage your fatigue, it will help - mine was wonderfully practical and down to earth - and helped to point out the blindingly obvious, when I was missing it! She was able to take info from my neuropsychology tests to explain why some things were particularly mentally strenuous for me - so would knock me out quite quickly, and suggest ways to break down tasks into several smaller ones - in order to sustainably get through different jobs. The trick I find is to be willing to stop work on something before it's finished, rather than trying to push through to the end and crash the next day - it can be a bit annoying, but you can get more done over the course of a week that way, if you don't crash / bust. Remember that BI fatigue is 'bi-directional' because physical fatigue can knock you out cognitively, and vice versa.
Here's a method to try. When you have a really bad 'bust' day, try and record everything you do during the day - and how long you spend doing it. (E.g. get a simple meal 30 mins , go for a short walk, 15 mins, watch TV 40 minutes, rest 1 hours, and so on). Then on your next 'good' day only do as much activity as you had done on a bad fatigue day. This is your 'baseline'. The following week continue to stick to your baseline, but increase one activity on a couple of days by 20 minutes. If that is okay, try and increase an activity by another couple of 20 minutes the following week. If it isn't ok though, you will need to drop your baseline back down to the lower amount and start again. The idea is to get rid of that awful flu-like fatigue feeling. It does work - though takes a bit of effort to maintain. We can't always get it right - but you will find your baseline goes gently upwards over time. NB If there's something particular you want to do which might knock you out (like me today) plan to have a couple of baseline days beforehand - and a couple afterwards.
Anyway - perhaps try it and see how it goes?
I'm reading a great book which has very clear and straightforward neuropsychology descriptions of the impact different brain injuries can have on cognition, and some strategies to try, it is ' Mindfulness and Stroke - a personal story of managing brain injury' by Jody Mardula with a neuropsychological commentary by Frances L Vaughan - from Pavilion publishing - it's not just applicable to people who've had strokes, and I think it could also be useful for relatives to read. I particularly like the neuropsychology section of the book. It was recommended by some kind person on here, and I ordered it from my local library.
Hope this helps, and that you are ok
Jen 🌸
Hi Jen, firstly I hope you are feeling ok , Im glad to hear you had a great time today, the fact u know what's coming next shows how good you are at managing your condition, I hope the crash isnt too heavy and the sofa day gets you back on your feet. Thanks so much for taking the time to provide such a wonderful reply, esp as ur going thru tour own issues at the moment. Youve pointed out brilliantly the mistake I keep on making - I'm just doing too much on 'good' days. I just cant help it - it's the only time I feel like my old self so I try and make the most of it, and even tho I'm not doing as much as before my accident I'm obviously still doing too much (even tho I feel like I have more energy left in the tank) this lasts for one or two days then the crash begins - that horrible feeling u know what's coming but are powerless to do anything about it then its like im a complete different person, everything just goes to pot - it's at this time when the dark thoughts creep in, like thryve just been waiting in the background patiently for me to slip up and out they come. it's just cruel isnt it, and so unfair on your family aswell. I'm a dad of 3 - try explaining to an 11 year old who one day had fun dad playing with her in the park and then the next day he can hardly get out of bed. My baseline today has been very much like you mentioned..doing very little, I get what u are saying about flattening the curve, i am really going to give this a proper go as I cant go on like this any longer it's just neverending at the moment. Thanks again for your reply Jen, you are helping so much. Take care I hope u feel better soon.
Best wishes Bb
Hi Bb, so sorry you are in a bust phase at the moment. Hope you can take things gently this week. Really lovely to have your three children - but can see how tough that could be. I've a three year old granddaughter and playing with her will knock me out. Sometimes our children understand more than we think though.
Ironically my brain appointments were in central London, and were inadvertently keeping me in a boom and bust pattern - I'd take the train to London (not hard for me luckily, because I was a diehard commuter, so could engage autopilot) see the physio, and/or the consultant or neuropsychologist, and then try and meet a friend afterwards, so the trip didn't feel wasted (and it all felt really good at the time I was doing it, even though I needed to find quiet cafés for pitstops during the day) then utterly crash for the rest of the week - only to revive enough to plan my travel on the day before I did it all again the following week.... The first lockdown and Zoom appointments saved me really. Once I understood I could have those longer fatigue free times, I got more proactive about hanging onto them over the longer term, and the coaching made more sense. I'd also switched to a local neuropsychologist privately, with the help of the London one, to reduce costs and travelling - who also worked in brain rehab with the local NHS trust - and she proved to be absolutely brilliant at fatigue coaching.
One thing I've noticed is that when fatigue is biting it makes all the other post concussion symptoms worse for me - so cracking the fatigue thing is definitely key to better cognition, and reducing physical effects.
I feel ok this morning - better than I thought, but I'm still going to take things gently today because I suspect my batteries are quite undercharged.. Then I will also really enjoy the rest of the week - my sister and her family are visiting nearby for a staycation, and we will have some good times together - between which I will take things very easy indeed! So I'm treating this as my staycation as well in effect.
Oh, and I forgot, the other thing to monitor yourself for, is the activities that recharge your batteries - for me, it's my painting - I can feel totally 'old self' but without knocking myself out - a win win.
Good luck Bb - hope you can work this out for your own situation - it's early days for you, so I'm sure you can.
Jen 🌸
Hi Jen, hope all is well? Well today I finally received my first neuro appt - September 3rd to attend clinic. Hopefully it'll be the first step on the road back to (some kind of) normality.. All the best , Bb
Oh that's good news Bb, not too long now then. Hope it goes ok. Do you have a consultant name to Google ?Might be worth a chat with the Headway helpline in advance, to get some ideas of what to ask possibly? (and after the appointment)
Just had a lovely day with the family 😊
Thanks Jen, nice to hear you had a good day out with the family 😀.Not got a name yet ill give them a call nearer the time see if I can find out. Cheers for the heads up on headway (no pun intended!) will do that, so far I'd only thought of writing down my 'shopping list' if symptoms,but not sure if I'd be carted out by the nen in white coats if i did that! Cheers Bb
Yep, we've all got a shopping list of symptoms - go for it! 👍
Hi Jen, quick update - I got my consultant name through, quick google and it seems my appt is with a 'movement disorder specialist'.. bit baffling! Oh well hopefully I'll be directed onwards after the initial appt. Cheers! Bb
Very baffling - you didn't mention any movement issues?
Double check with your GP and possibly try and get hold of the consultants secretary and query it with them directly. I would be wary, because people on here have had quite mixed experiences with neurologists - I suspect because there are quite large differences between neurologists because of their specialisms.
My first neurologist (private) was a 'sleep specialist' and he wasn't much help with the TBI - except he did send me for the neuropsychology tests when the concussion didn't clear up on its own, and - after having had a go with migraine prophylactic drugs which didn't help me - he referred me onto a friend of his who was a concussion specialist neurologist ( #1 had a think about this and his first choice was someone who only took NHS patients - so they do exist). But it was all just a fluke really.
To be totally fair, I didn't know then that neurologists come in different guises, or how long I would need one, so didn't shop around at all - the GP and I just wanted me to have a quick MRI because of the horrendous headaches.
Is it worth hunting for your own concussion specialist neurologist and showing them to your GP? Sorry - such a terribly difficult thing to do early on after a BI... Have you got a mate that can google for you? Start with the neurologists in your local trust, and research each one on the web.
I have a good friend who is a retired consultant, and her advice is always to be very persistent with the NHS, by the way.
Good luck anyway 🌸
Hi Jen, thanks for getting back to me. I spoke with gp this morning and they confirmed referral was for PCS. I also spoke with neuro secretary and she said appt was for general clinic in first instance and if neuro didnt think they could treat me they'd refer me on. I queried the movement disorder thing..and she told me to stop googling! Haha. I'll just go with it for now then see what happens at clinic. Thanks so much for your help, it's really good to know all this stuff beforehand otherwise I'd be going in blind (prob not the best use of words!) Thanks again, Bb
Shall cross fingers for you! 👍
Hi Jen, I have hope your doing well? I just wanted to let you know I had my first neuro appt today..not sure what I was expecting but it didn't really go as I'd expected! Neuro was quite abrupt and didn't really seem that interested. I explained what happened and what I've been struggling with but didn't get much back from her at all apart from telling me "pcs can cause all those problems you are describing." Thanks for that I thought! Anyway, she's arranging an MRI scan and has forwarded me onto phsysciatry team (think that's what she said anyway) who she said can help with managing some of the symptoms. All in all I was in there for no more than 6 or 7 minutes, maybe I was expecting too much but thought I might get more out of her given her expertise! . Hopefully the physciatry team will be more helpful.
Cheers anyway, best wishes Bb
It's ok Bb I find neurologists rather disappointing too. I think that our symptoms are all too common for them. And all too miserable for us .
Their main role is too make sure nothing sinister is going on - so that's the MRI - and refer you on for help. Neuropsychiatrists are good it turns out - they deal with that grey area between the body and the brain - also good at drugs that help, I found.
Neuropsychologists are good for explaining what's happened, for helping you with strategies to cope, explaining why some things are more tiring, and for emotional support.
Its a slow process, but at least you are underway now.
Hi Jen, thanks for that - I'm glad it's not just me then! I think you said a while back about neuroligist main role was to direct you onto relevant teams etc, so that's fair enough - it would have been nice tho if she'd maybe shown a little more interest, but hopefully - as u say I can get some proper treatment now over the coming months. Incidentally I've had a couple of very good weeks, with days out with the kids the last 2 weekends- something I couldn't have done a few months back.I'm paying for it a bit now mind u, but I expected that so have kept this weekend clear for recovery.. Strange thing this isn't it! Take care & best wishes, Bb.
Glad you've had a couple of good weeks, that's encouraging Bb. Sorry you're suffering now, Having some recovery time helps - plus before you have a busy time, my physio said to rest up beforehand too. Plus keep your mealtimes even, and stop and have a snack before you feel too strained. He thought those oaty granola type bars were good to grab. This was when either my issue was getting home and being too tired to get food for a few hours, or when I couldn't walk as far as I wanted - so the plan was to walk, stop halfway and snack for twenty minutes, and only then head home. I've been religiously pacing myself this week because I wanted to enter the flower arranging and cake competitions at the local garden show today. I'm shattered now, but I did everything I wanted to, which is rather satisfying. So frequent breaks do help - I planned the week like a military operation (and my home looks like a disaster zone..!)
Yes, I went private through my company insurance to the two neurologists, and neither were exactly excited - I think they like tougher cases to sort out than us! I think Leaf100 said it was the most common thing to go to a neurologist for. But at least you're getting checked out properly. Can you email your neurologist and ask to be checked out for any vestibular and oculomotor issues? That's what my physio worked on. I've found NHS consultants quite good at answering extra questions outside their clinics - so Headway might be able to suggest a few questions to ask. My retired doctor friend says that neurologists are all incredibly clever by the way.
I did take my sister into appointments with me - having gone over with her what I wanted to know in advance - so that she could ask questions for me. NHS consultants will whisk you out the door quickly if they can - the trick is to quickly ask some questions and then they slow down, and stop trying to eject you.... They can be more accommodating than their private practice counterparts I've found.
Take care, hope your 'bust' phase doesn't last too long. Take it easy meanwhile.
Hi Jen, thanks for that. I will mention getting checked out for any vestibular and ocularmotor issues - i think youve mentioned that before, but tbh i was in and out that quick i didnt have much time to think! Ill be better prepared at my next one (assuming i ever see her again!) Cheers for the pacing advice, i am trying to do this each day but do sometimes forget and switch into 'old me' mode ie doing too much and crashing. Its a learning process isnt it.. I hope you enjoyed your cake making and flower decorating day out, sounds like fun... wouldnt worry about the house being a mess tho- mine is like that pretty much all the time with 3 kids and my granddaughter all living under one roof! 
Thanks again and take care, Bb
It was really good to do thanks Bb, felt like an achievement, got two first class awards and two seconds! Left a cold supper on the fridge for the evening luckily.
Yes, I started needing to prepare for appointments like some sort of military operation - listed down everything, got a friend to help me break it down into bullet points, took someone in with me, otherwise tended to come out none the wiser... Early on it's so hard with a brain injury to negotiate these things.
Know what you mean about the old me thing, I popped to see my granddaughter yesterday afternoon, and then I did an art class this morning - so am pretty knocked out this afternoon - I somehow think this is going to be a quiet week for me. Might have got away with it without the art class... I noticed my headaches have crept back, but that does mean usually I don't have them now.
Sounds like you have a bit of chaos there too then!
You take care too
Hi Jen - well done on the awards - thats a great achievement! Isnt it a great feeling when you manage to do something you thought you possibly, would never be able to do again? Just even small things sometimes - but it all adds up i think over time, even if u have to 'pay for it' later sometimes. I had my MRI yesterday - wasnt expecting it so soon but was offered one due to a late cancellation, thats some machinary that isnt it! Hopefully get the results back soon so fingers crossed. Cheers for the advice on the neuro appts - I will be sure to write some questions down in advance next time and hopefully avoid the early 'shoo-out' the door! Yes, my house is very busy..hence i work in my garage most of the time 
Cheers Bb
This seems to be a very big problem. There may be multiple issues affecting your vision. Many people find solutions to visual problems but with LED and screen lighting there is another problem. strange that people find solutions to sunlight affecting vision but the same product has no effect with LED and screens. The issue is not the light per se, it is the flicker effect of the type of lighting. Energy saving light, fluorescent and LED, which also backlight screens are run at 60HZ, 60 flashes per second at full brightness, is the brightness is reduced it can drop to 40HZ. For some reason people with brain injury can either see the flickering or get seriously affected by it. There is one possible solution that many people are experimenting with, increasing the speed of the flicker. Today you can get 120HZ and 144HZ screens for gaming with anti glare and other properties. These are being tried with on screen filter via software and also off screen filters to reduce the brightness. If you work in the industry get your boss to provide one of these monitors and experiment with the filters. The idea is to have the flicker flash as fast as possible taking it out of the perceptual range. At home for lighting revert back to the old style, basically ditch LED and fluorescent products. I have it works.
Hi pinkvision, thanks a lot for your post. That's very interesting - I've not read anything at all about the faster refresh rates helping in this way. I'm actually self employed (of sorts) so provide my own equipment (laptop and monitor) so I'll definitely be looking more into this now thanks, and may well invest in one of these monitors (any recommendations would be be welcome!)
Cheers
I was already chatting about this with an engineer friend who was going to rig one up for me, then covid came and was put on the back shelf. Then I came across a Dutch guy who had bought one, he has BI too, he wrote an article about it. I posted it on here a short while back. Have a look in my history posts, it's not that far in and will be obvious from the title.
Not sure the full extent of your visual problems are, you may 'just' have this sensitivity to LED and screens, which seems to be universal across the board with BI. Some people have a variety of other visual processing problems also, it's worth seeing a behavioural optometrist to get checked over. These deal with processing issues in the brain itself, opticians and opthamologists do their thing however the optometrist does all of them in one go.
No matter what anyone says there are no solutions to the flicker effect of screens to date, so if the lighting is the issue and glasses etc can't deal with it change the lighting. There are the old CRT monitors also.
Good luck.
I'm hopefully getting a 120Hz screen soon via my university (if it passes the funding process) will test it and spill the beans on here.
Thanks pinkvision, I will checkout your earlier posts on this topic. My issues are (so far) mainly to do with monitor, tv and phone usage. I also have severe dry eyes also, which compounds things further, the two things are probably making each of the issues worse I guess. Thanks for your help, I'll let you know also how I get on if i can get of these fast refresh monitors for a reasonable price. Cheers
Hi just a little update, the funding for a 144Hz monitor has been agreed and will be supplied shortly. I will keep everyone updated about how it performs, if it reduces fatigue by any amount etc. Fingers crossed.
Hi Pinkvision, that's great news 😀. I hope things improve for you when you start using your new monitor (will keep my fingers crossed!)
I mentioned on an earlier post, I bought a mini projector a couple of weeks back, mainly for kids to watch movies on big screen etc. I tried it out myself last weekend, connected my sky box to it and tried out watching regular tv on it (so -picture reflected onto a white wall in a darkened room). I'm not sure if it was wishful thinking or not, but my vision issues seemed to be less severe when watching tv this way I managed about an hour without having to take a break.. so your thoughts on flicker being one of the main contributing factors I think could well be true - I'm assuming a projected picture would not have flickering as watching a screen directly? Anyway, I wish you the best of luck with your new monitor, when it arrives 😀.
Best wishes, Bb.
If the wall is matt paint rather than satin or gloss it would also made a difference, less reflection. cheers.
Hi pinkvision just wondered if u have got your 144hz screen yet and if so has it made any difference at all? I'm looking into buying one myself hopefully, I just ordered an e-ink smartphone online (from china) hopefully this will help also, thanks Bb.
Hi yes, posted a review yesterday on this site.
Hi Bb, good range of advice already on here. My job was computer based also, so can empathise with problems post concussion. Splitting head migraine-like headaches hit me after about 30mins on a screen. I still find my phone easier than a screen. My screen tolerance has improved again recently though which is interesting. I was diagnosed with oculomotor issues by a specialist concussion physio and had to do a lot of eye movement exercises - might be something else to try?
A kind person on here recommended these glasses - but I haven't tried them myself so can't comment I'm afraid -
Fit Over Blue Light Blocking Glasses Lightweight Eyeglasses Filter Blue Ray Wear Over Reading Glasses/Prescription Eyewears/Anti-Glare Reduce Headache smile.amazon.co.uk/dp/B08CD...
Hi painting-girl, thanks for your reply. I am still waiting for my appointment to come through for neurologist (it was 26 weeks wait last time I checked) . Hopefully I will get checked out for any oculomotor issues, thanks. Cheers for the glasses link, I've bought a couple of pairs off Amazon, claimed to be blue light blockers but tbh they haven't made any difference. I will have a look though, thanks. Good to hear your symptoms have been better recently. All the best, Bb
Hi Bb - my neurologist referred me to the specialist physio he worked with on concussions and they did the assessment on the oculomotor and vestibular stuff - not the neurologist, by the way.
Wow, 26 weeks is months away - how worrying for you. Is it worth starting off some other referrals with your GP to run concurrently? The Headway helpline night have some ideas?
The role of a neurologist is sometimes just to refer you on to other people - like a neuropsychologist and / or neuropsychiatrist - these last being particularly good at drugs that have an impact on the brain - so don't worry if you get referred, it doesn't mean anyone thinks it's in your mind, mine was able to explain what was going on with my concussion/ MTBI, and why -and was adamant that having cleared up de-conditioning and depression, what was left was the brain injury
How are you doing in yourself - it's not pleasant being separated from your work, is it?
Let us know how you get on 🌸
Hi Painting-girl. Thanks for your reply. Re neurogist- right, I think i understand. There seems to be that many ppl involved it's enough to make your head spin (if it wasnt already!) I'm going to try and get an update this week on how long to go, my gp has been very helpful but think were at the point now where next steps are the head workers (for want of a better phrase!). Thanks for asking how I've been doing. Up and down tbh, just trying to take things one day (and step) at s time. I've had far too many highs (where I think I'm getting better) followed by crashing lows (when I feel back to sq 1) so I try not to get too carried away either way now - If u know what I mean. I'm just hoping I can get some answers, however long it takes. Take care.
Sensible approach, one day at a time. Thing is, no-one knows for sure anyway, because the trajectory of every single brain injury is different - though it is a relief to talk to people on here with the same issues. So glad your GP is onside too, that's a huge help. And yes, a total minefield of different head workers out there certainly. (Checkout the neurologist online when you get your clinic letter, because some aren't specialists in post concussion / MTBI - and so they aren't always as useful as they could be - you may want to ask for a second opinion.)
You take care too - hang on in there - there's always people around on here, and the Headway helpline are always good for info, or an informed listening ear 🌸
Hi All, similar question as my earlier post (thanks for all your very helpful advice earlier! ).. has anyone tried E-Paper/E-ink tablets or phones? I've read they can be easier on the eye due to them being non lcd display., so therefore (hopefully) less eyestrain. There doesnt look to be a great deal out there phonewise, think hisense is only brand I can see who have e-ink models) . I know kindle readers etc are out there but they dont (for me anyway) really cut it in terms of general use for browsing, emails etc..plus it doesnt have a phone on it! Any help appreciated 😀) Cheers Bb
I used to work with ASC students. I think there’s were prescribed… phone specsavers or some-such. Everyone is different… some liked yellow or blue, one pink or purple etc. x (Autism Spectrum Condition).
Bb1878 in reply to
Hi Crisplady (great name!)Thanks for the message, I've got an appt next week actually at specsavers to discuss just that, getting a tint added to my prescription specs, I've tried a couple of the blue blocking glasses but dont do much for me hopefully these will be better. I just ordered an e-ink smartphone aswell I'm hoping this will help reduce eyestrain, fingers crossed. Thanks and Best wishes Bb
Apologies CripLady - just realised I read your name wrong. I really should have gone to specsavers it seems! Cheers Bb
in reply to Bb1878
Try a few different colours to see which is best for you.
Bb1878 in reply to
Thanks Criplady, will do. I'm thinking maybe something with a light reddish tint maybe best for me as this seems to be the easiest on my eyes when I've tried the blue light blocking software, I bought a couple of pairs of specs off amazon (yellow and clear) both useless really. fingers crossed these will be better. I'm also considering buying a higher spec monitor (144hz or above) as theres some evidence this can help as the screen flicker is twice as fast as a standard monitor this is supposedley easier on the eye ,or the brain maybe less sensitive to it possibly. it's all trial and error I guess - you just got to keep trying haven't you. Thanks again will report back once I've tried out my new tinted specs 😀. Cheers Bb
Bb1878 in reply to
I meant to say, what sort of problems did your students have with screen? And did the tints actually work for them? I find it difficult to use a computer screen for any length of time now as my eyes become really sore, start burning, i get blurred vision and just feel nauseous.
Their’s was for everyday/ all the time. You can buy anti-glare screens if monitors are a problem. Also change brightness and colours just from your settings. There is also lots of adaptive software on the market, so I would recommend doing some googling.
Bb1878 in reply to
Ah right. Ok. Thanks Criplady, all the best Bb
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