Driving with keratoconus and other eye problems...
Discussion
Hi guys, been a little while since I posted on here actually, but there's something I'd like to discuss with other petrol heads.
I have been diagnosed with keratoconus, which is thinning of the cornea, and it means my vision is impaired and my prescription is changing every couple of months. This has come on very quickly, just 12 months ago I had perfect vision... so as you can imagine I'm feeling pretty down about things atm.
I love all aspects of cars, including recently doing my first track day. I'm worried I won't be able to continue with them, and in fact driving at all. I have a consultation next month where I will discuss moving over to contacts (which work better for my condition) or even a non-invasive treatment called cross-linking where they use dye and ultraviolet lights to thicken the cornea. It doesn't repair the damage, but it can halt it. Even after that, and still wearing contacts, I've read it's hard to drive at night. An example of what I see is the following...
There are other aspects to it as well, but I'm pointing this one out because the ghosting around lights is obviously horrible, and pretty damn dangerous. At the moment it's a choice between this (with glasses) or just everything being blurred.
I wonder if anyone on here has keratoconus? Or has lived with other eye problems? I just want to see some light at the end of the tunnel... that isn't blurry!
Thanks for reading.
I have been diagnosed with keratoconus, which is thinning of the cornea, and it means my vision is impaired and my prescription is changing every couple of months. This has come on very quickly, just 12 months ago I had perfect vision... so as you can imagine I'm feeling pretty down about things atm.
I love all aspects of cars, including recently doing my first track day. I'm worried I won't be able to continue with them, and in fact driving at all. I have a consultation next month where I will discuss moving over to contacts (which work better for my condition) or even a non-invasive treatment called cross-linking where they use dye and ultraviolet lights to thicken the cornea. It doesn't repair the damage, but it can halt it. Even after that, and still wearing contacts, I've read it's hard to drive at night. An example of what I see is the following...
There are other aspects to it as well, but I'm pointing this one out because the ghosting around lights is obviously horrible, and pretty damn dangerous. At the moment it's a choice between this (with glasses) or just everything being blurred.
I wonder if anyone on here has keratoconus? Or has lived with other eye problems? I just want to see some light at the end of the tunnel... that isn't blurry!
Thanks for reading.
As long as you are aware of the problem and keep on top of the prescription required I see no problem.
I used to work with a daft bint with diabeties who would phone in sick to work as she was unable to see because she abused her condition to try amd loose weight and damaged her eyes, yet would then say she was off to her boyfriends so he could look after her - which was 60mikes up the M40 and she'd drive, I wanted her to have a nice single car accident to wake her up.
I used to work with a daft bint with diabeties who would phone in sick to work as she was unable to see because she abused her condition to try amd loose weight and damaged her eyes, yet would then say she was off to her boyfriends so he could look after her - which was 60mikes up the M40 and she'd drive, I wanted her to have a nice single car accident to wake her up.
I've had it since my late twenties. First I knew about it was the I couldnt focus my left eye on screen text so the degredation was pretty much overnight. Fortunately my right eye is okish though but I guess my brain has somehow overcome the disability as my depth perception is faultless.
My ambition was always to becme a pilot so I was absolutely gutted, thought it was the end of the world..... Roll on 10 years and my condition has stabalised (by itself) and Ive been granted a class 2 medical with the aid of a rigid contact lense and I'm only a couple of ground exams short of getting my private pilots license!
Everyone is different of course but certainly in the initial stages the condition is very depressing.
There are also other options available such as intacs but first stage is to get a cornia topograph carried out..
Its worth noting the crosslinking can only stop the condition from getting worse, it wont unfortunately return your eyesight, so if you are elegible you should get it done asap.
Hope this helps and feel free to pm if you want to chat off forum
My ambition was always to becme a pilot so I was absolutely gutted, thought it was the end of the world..... Roll on 10 years and my condition has stabalised (by itself) and Ive been granted a class 2 medical with the aid of a rigid contact lense and I'm only a couple of ground exams short of getting my private pilots license!
Everyone is different of course but certainly in the initial stages the condition is very depressing.
There are also other options available such as intacs but first stage is to get a cornia topograph carried out..
Its worth noting the crosslinking can only stop the condition from getting worse, it wont unfortunately return your eyesight, so if you are elegible you should get it done asap.
Hope this helps and feel free to pm if you want to chat off forum
Thanks for replying. I've joined up the keratoconus forum to look around for information too... but just in general I was wondering if you could answer me a simple question. Compared to when your vision was perfect, how is it now? I'm just hoping that I will improve from my current situation, as I wouldn't wanna have to live like this forever 
I wonder my cross-linking isn't pushed more, I think it's because there's not many hospitals that currently do it on the NHS? I live in Essex so hopefully I'd be in a catchment area for London.
I wonder my cross-linking isn't pushed more, I think it's because there's not many hospitals that currently do it on the NHS? I live in Essex so hopefully I'd be in a catchment area for London.Was diagnosed with it in my early 20's and have worn contact lenses ever since. I'm now 39 and never had any issues driving or doing anything else for that matter.
Seriously don't let it get you down, it's doesn't stop you having a perfectly normal life. The only thing it stopped me doing was joining the RAF and given the state of that it might have been a blessing anyway.
I have glasses, they give me roughly 50% vision so I can't use them for driving. Even cycling with just glasses is a bit of pain but you do get used to it. Normally I just wear contacts and then I can see perfectly well. I visit my optometrist once a year or so, get new lenses and then carry on. It doesn't take too long for the changes to stabilise and now I have no more changes per year than anyone else with any other eye condition.
By far the worst bit is that it's hard contact lenses and they are not particularly comfortable. Because of the eye shape you also find it's easier to get dust etc behind them but you get used to having small voiles of solution dotted around, in the car, work, and other critical places in case you need to pop a lens out and replace it. There will be a small period of getting used to them but that's it. I don't wear them of out drinking, just amplifies the effect of drunken vision so consider it a bonus!
I've had to visit the hospital twice in nearly 20 years because I've scratched my eye, a few drops and leave the lenses out for a day and problem solved. I've had to wear my glasses and get my OH to give me a lift to work once due to a scratch on the eye but that's not bad for the period of time. I'm wearing my glasses now to use the laptop and I was just on the PS3 for a couple of hours with my glasses on with no issues. In fact wearing the lenses on the PS3 is more of an issue because I forget to blink and they dry out. Aircon can dry them out (a problem if you spend a lot of time in server rooms like me!) but again a quick refresh and all is fine again, takes 15 seconds out of my life on the odd occasion I need to do it.
The only notable issue is my own fault from wearing the lenses for too long and I ended up getting '3am syndrome' which hurts more than anyone can possibly imagine. Lenses in at 7am, out around 7pm unless I'm driving anywhere later and then I don't get the issue.
PM me if you have any worries and I'll happily discuss anything, after the best part of 20 years with it I can answer pretty much any questions. Most importantly don't worry, it's not massively life changing any more than other forms of stigmatism or countless other non eye related medical issues.
Edit to add: Night driving is not an issue, in fact I seem to be better than most people on the roads at night which is either confidence or vision related but I have no idea how bad other drivers eye sight is!
Seriously don't let it get you down, it's doesn't stop you having a perfectly normal life. The only thing it stopped me doing was joining the RAF and given the state of that it might have been a blessing anyway.
I have glasses, they give me roughly 50% vision so I can't use them for driving. Even cycling with just glasses is a bit of pain but you do get used to it. Normally I just wear contacts and then I can see perfectly well. I visit my optometrist once a year or so, get new lenses and then carry on. It doesn't take too long for the changes to stabilise and now I have no more changes per year than anyone else with any other eye condition.
By far the worst bit is that it's hard contact lenses and they are not particularly comfortable. Because of the eye shape you also find it's easier to get dust etc behind them but you get used to having small voiles of solution dotted around, in the car, work, and other critical places in case you need to pop a lens out and replace it. There will be a small period of getting used to them but that's it. I don't wear them of out drinking, just amplifies the effect of drunken vision so consider it a bonus!
I've had to visit the hospital twice in nearly 20 years because I've scratched my eye, a few drops and leave the lenses out for a day and problem solved. I've had to wear my glasses and get my OH to give me a lift to work once due to a scratch on the eye but that's not bad for the period of time. I'm wearing my glasses now to use the laptop and I was just on the PS3 for a couple of hours with my glasses on with no issues. In fact wearing the lenses on the PS3 is more of an issue because I forget to blink and they dry out. Aircon can dry them out (a problem if you spend a lot of time in server rooms like me!) but again a quick refresh and all is fine again, takes 15 seconds out of my life on the odd occasion I need to do it.
The only notable issue is my own fault from wearing the lenses for too long and I ended up getting '3am syndrome' which hurts more than anyone can possibly imagine. Lenses in at 7am, out around 7pm unless I'm driving anywhere later and then I don't get the issue.
PM me if you have any worries and I'll happily discuss anything, after the best part of 20 years with it I can answer pretty much any questions. Most importantly don't worry, it's not massively life changing any more than other forms of stigmatism or countless other non eye related medical issues.
Edit to add: Night driving is not an issue, in fact I seem to be better than most people on the roads at night which is either confidence or vision related but I have no idea how bad other drivers eye sight is!
Edited by poing on Friday 13th September 23:26
Another keratoconis example here. Was diagnosed at 21, bad in one eye slight in the other. Condition stopped degenerating after five or so years.
Could not get on with hard contacts, so I have glasses that allow me to pass the driving standard, whilst still having some of the blurring in your image.
Its no impediment really, hasn't prevented me from doing anything.
Seems the later you get it the better and the problem stabilises once the eye stops growing. Children getting it early seem to suffer more.
Don't fret about it, I did initially but in most cases I've heard of it settles down.
A good optician knowledgeable on the subject and familiar with your condition is a real benefit.
Could not get on with hard contacts, so I have glasses that allow me to pass the driving standard, whilst still having some of the blurring in your image.
Its no impediment really, hasn't prevented me from doing anything.
Seems the later you get it the better and the problem stabilises once the eye stops growing. Children getting it early seem to suffer more.
Don't fret about it, I did initially but in most cases I've heard of it settles down.
A good optician knowledgeable on the subject and familiar with your condition is a real benefit.
kayzee said:
Thanks for replying. I've joined up the keratoconus forum to look around for information too... but just in general I was wondering if you could answer me a simple question. Compared to when your vision was perfect, how is it now? I'm just hoping that I will improve from my current situation, as I wouldn't wanna have to live like this forever I wonder my cross-linking isn't pushed more, I think it's because there's not many hospitals that currently do it on the NHS? I live in Essex so hopefully I'd be in a catchment area for London.
I had cross linking done in my left eye a couple of years ago- now have a 3 diopter improvement. I wonder my cross-linking isn't pushed more, I think it's because there's not many hospitals that currently do it on the NHS? I live in Essex so hopefully I'd be in a catchment area for London.Well worth it.
Try & get a referral to Moorfields to see Professor John Dart at external eye disease. He is the very best in his field.
I cannot explain just how much the treatment there has improved my life.
Thanks for your stories guys. The main thing I'm thinking about atm is whether to go private or not. I've heard for cross-linking, they need to see a deterioration over a 6 month period before they'll go ahead and operate... which seems crazy because they can't reverse it, so they're just making you get worse before they'll do anything about it!
Suffered from this from about 17 years old, and have been wearing rigid lenses since about 1995ish I would think. I do get poor night vision, similar to the photo above, even with the lenses, and glasses are almost unusable for driving and I don't feel safe driving with them.
To begin with my prescription was being changed every 3 months but now I can go for a couple of years at least and only seem to change the lenses when they are scratched or uncomfortable. I did have one crack recently though, thankfully not whilst wearing it.
Never heard of crosslinking in all the time I've had the condition so assume it wasn't available for me or was too far on.
To begin with my prescription was being changed every 3 months but now I can go for a couple of years at least and only seem to change the lenses when they are scratched or uncomfortable. I did have one crack recently though, thankfully not whilst wearing it.
Never heard of crosslinking in all the time I've had the condition so assume it wasn't available for me or was too far on.
Slobberchops said:
Suffered from this from about 17 years old, and have been wearing rigid lenses since about 1995ish I would think. I do get poor night vision, similar to the photo above, even with the lenses, and glasses are almost unusable for driving and I don't feel safe driving with them.
To begin with my prescription was being changed every 3 months but now I can go for a couple of years at least and only seem to change the lenses when they are scratched or uncomfortable. I did have one crack recently though, thankfully not whilst wearing it.
Never heard of crosslinking in all the time I've had the condition so assume it wasn't available for me or was too far on.
Yes they do say cross-linking is better the quicker you can have it, as it basically 'speeds up' the aging of your cornea so the KC stops progressing. You've obviously had it for a long time, so unfortunately it wouldn't do much good for you.To begin with my prescription was being changed every 3 months but now I can go for a couple of years at least and only seem to change the lenses when they are scratched or uncomfortable. I did have one crack recently though, thankfully not whilst wearing it.
Never heard of crosslinking in all the time I've had the condition so assume it wasn't available for me or was too far on.
Just bumping an old thread here as I've had CXL performed on one eye now and am having the other done in September.
Currently using a mixture of soft contacts and glasses, although I'm finding the glasses more or less useless now, I'm just using them as some relief for my eyes really. RGP's were horrible, couldn't get on with them at all.
I feel sick a lot of the time tbh knowing that if I had CXL performed straight away I would have been able to save my eyesight (well most of it) and tbh I put this down to extremely poor advice from my local hospital, "You'll be fine, just carry on wearing your glasses"
considering suing for negligence.
poing said:
Edit to add: Night driving is not an issue, in fact I seem to be better than most people on the roads at night which is either confidence or vision related but I have no idea how bad other drivers eye sight is!
You're so, so lucky man. I went to Lakeside last night and literally forgot what time it was and was then faced with my first drive home since having CXL... Jesus, it was awful. There's no chance in hell I can risk driving at night again, very scary experience indeed. It's like every light is a firework going off as I drive past it! It's very depressing knowing that there's an aspect of my life that's over now. More so as my girlfriend doesn't drive, so we're inhibited where we can go and at what time of the day.Currently using a mixture of soft contacts and glasses, although I'm finding the glasses more or less useless now, I'm just using them as some relief for my eyes really. RGP's were horrible, couldn't get on with them at all.
I feel sick a lot of the time tbh knowing that if I had CXL performed straight away I would have been able to save my eyesight (well most of it) and tbh I put this down to extremely poor advice from my local hospital, "You'll be fine, just carry on wearing your glasses"
considering suing for negligence.As an optometrist I would suggest finding as contact lens specialist either through the hospital eye service or in practice with experience of keratoconus there are several lenses available which may help (hybrid lenses have a soft lens periphery for comfort and a rigid lens centre for vision). You could contact Ultravision www.ultravision.co.uk who are a contact lens manufacturer for a specialist in your area. Also ophthalmologists in hospitals tend to have their own areas of expertise so try and find some one locally (worth posting on the keratoconus forum for advice)you should be able to choose a hospital locally with NHS "choose and book", although sometimes couple of hundred pounds for a private consultation is money well spent when it comes to eyesight
Thanks for the advice, although I've found my local optometrists to be very good. I actually work at the hospital, directly opposite the eye unit so getting there is easy enough! I'm quite happy with the vision I get from soft contacts atm (Biofinity Toric in my better eye, and Clariti XR Toric in my worse eye) I would like to see a tweak with the Clariti XR but they said to let my eye settle for 3 months after CXL before trying again.
I started out going private actually, but when I found out the price was £465 I thought again! £110 per year through the NHS...
I started out going private actually, but when I found out the price was £465 I thought again! £110 per year through the NHS...
OP,
How are you getting on with things vision wise?
I was diagnosed with Keratoconus in my early 20s and my right eye is a lot worse than my left. Because I have one good eye I've just carried on with glasses. I used to wear normal soft contacts and then toric lenses on and off for 10 years however it has now got to the stage that if I want to go down the contacts route it will have to be rigid gas permeable lenses. I think I'm going to go down this road as I'd like to wear contacts again.
To those on here who wear such lenses how do you get on with them? I appreciate they take a bit of getting used to however once you're over that stage what does feel it? Do they eventually just feel as comfortable as normal soft lenses - ie for 99% of the time you don't even realise you have something in your eye or is this a bit optimistic?
Cheers.
How are you getting on with things vision wise?
I was diagnosed with Keratoconus in my early 20s and my right eye is a lot worse than my left. Because I have one good eye I've just carried on with glasses. I used to wear normal soft contacts and then toric lenses on and off for 10 years however it has now got to the stage that if I want to go down the contacts route it will have to be rigid gas permeable lenses. I think I'm going to go down this road as I'd like to wear contacts again.
To those on here who wear such lenses how do you get on with them? I appreciate they take a bit of getting used to however once you're over that stage what does feel it? Do they eventually just feel as comfortable as normal soft lenses - ie for 99% of the time you don't even realise you have something in your eye or is this a bit optimistic?
Cheers.
Blacklabel,
I have been wearing rigid gas permeable lenses for keratoconus for the last 20 years. I have never had soft lenses so cant compare, but I have never had any particular issues with comfort. Last year I started to see a new to me optician, after the chap I had been with for years retired. I had noticed some issues with vision and so took the opportunity of starting afresh on a prescription, it took about 3 mods to get spot on, a couple of the trials were uncomfortable, but once the prescription was set, no problems
Make sure your optician has a reputation for managing keratoconus.
I have been wearing rigid gas permeable lenses for keratoconus for the last 20 years. I have never had soft lenses so cant compare, but I have never had any particular issues with comfort. Last year I started to see a new to me optician, after the chap I had been with for years retired. I had noticed some issues with vision and so took the opportunity of starting afresh on a prescription, it took about 3 mods to get spot on, a couple of the trials were uncomfortable, but once the prescription was set, no problems
Make sure your optician has a reputation for managing keratoconus.
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