UK Keratoconus Self-Help and Support Association

Hey guys, ladies..

I am 95% sure I have keratoconus based on numerous things and results from optometrists -- but will ultimately confirm or deny it with my upcoming ophthalmologist appointment.

In the mean time I have some questions anyhow:

My vision has been 'off' for the past 3-4 years that I have been aware. It wasn't something that overnight I just woke up and became aware of.. it sort of snuck up on me.

It is nearly indescribable in many ways.

I'll list some points of symptoms and maybe you can or cannot relate:

1) Monocular diplopia -- (It is usually a significant ghost image, but can separate completely at its worse. IE: 2 moons, 2 led lights, head lights, etc etc)

2) Light sensitivity -- man light hurts.. light bulbs, sunlight.. it is all TOO bright. All the while it almost seems like I don't have enough light. Can't explain that.

3) Contrast problems -- This is hard to explain and I put the word contrast on it just because there is no other. But it is like there is this 'mist or fog' between me and everything. Not like a cataract fog.. it isn't like a blotch in my vision -- but sort of like edges aren't as distinguished, this black on white background.. the words don't seem to STAND out as they should. A good example is looking at my beige colored walls in this room,.. going from wall to corner to wall.. it is difficult to discern the corner. It can very easily look like the wall just keeps going straight and the corner isn't there. But I know it is there, so I can barely see it. Of course in better light this is , well, not so bad. Making out faces and focusing on them is uncomfortable. Stuff like that.

4) Starbursts -- Headlights, power lights on cable boxes, monitors, electronics, etc -- LED lights.. they spread out in all different directions. I cannot for the life of me see a circle of light like this as I used to unless I am literally 6 inches or closer to it. Example, a small LED power light -- At 4-5 inches it is seen properly (though brighter than normal) -- at say a foot or 18 inches a halo forms around it, but still can see the light in proper circle inside this halo. -- Then further out than that it turns into streaks of light,.. and a big blob of what is either multiple images of itself VERY compact together.. or just so much distortion of the circle that it is a blob with streaks. Hard to tell exactly. This happens with oncoming headlights -- with certain 'newer' headlights like on high end luxury cars (the whiter looking lights) -- it can spread so bad I can't tell what kind of car it is at all.. older, duller, headlights (more yellow/amber ish) are not quite as distracting. And my gosh they are bright.. it is like everyone has their brights on. So distracting. Street lights in my neighborhood generally carry a halo around them until they get 200+ yards away which then turns into a slight starburst. I think it has to do with the type of light.

5) Halo's -- As aforementioned -- street lights.. a good example is when I am driving.. approaching a redlight -- At distance it is a mess of starburst.. but as I come within a hundred yards or so (guess) it turns into a halo around the light, and the light is in the proper shape... the closer I get to the light the smaller the halo gets.. and dissapears JUST as I pass under a green light. I find halo's not that annoying -- would rather not have them, but I can live with them because that don't really effect what I'm looking at.

6) Floaters -- I don't think they have much to do with KC,.. but I think MAYBE they are becoming more noticeable because of it. I think other than just being more aware of visual problems (which is definitely a precursor to making things worse) -- the way light is abnormally refracted because of the cornea the floaters in my eyes appear larger and more , well, distracting. I have quite a number of them and in strands. I believe, if you know anything of them, I have the typical fliescher ring with some other 'spots' -- more in the left eye than right. The brain is supposed to suppress them over time, but mine sure isn't doing too good a job of it lol. (have had them since I was 15 (now 31).. but at 15 I had one little dot in one eye.. now strands and multiple dots in both eyes.. I hate to think they will continue to cover my visual field.) -- Again the only correlation to KC I can remotely imagine is them being magnified to some degree. (Remember I am uncorrected at this point)

7) This is the most scary and hardest to describe -- Movement, SUBTLE appearance of movement of everything. Especially looking at text. IE: Reading bright yellow text on a black background online would really produce difficulty. It is almost like the words pulse, shimmer, or shake. Like My eyes are spasming just ever so slightly and quickly. Sort of like moving your head around (shaking it) and trying to read a label on a vitamin bottle. Try it. Hard to concentrate on it isn't it? That is an exaggeration of what I speak of. But it is one everything,.. Sometimes I think maybe the general blur I have makes things appear as 'motion' because motion is derived from a blurring effect. (IE: Look at a blurred picture.. your brain interprets it as motion). Then sometimes I think the rays of light that streak out of everything I look at are constantly quivering because of our constant eye movements, lid movement, and so on that is is these differences especially from both eyes being fused that make the brain perceive some subtle motion.

Tieing into the former: -- Streaks of light, rays from light sources. So I am looking at a recessed light in the celing -- a streak of light will come out generally at a slight angle towards to ground. This streak isn't of one length.. it varies shorter to longer in a constant motion. Generally the more I squint the longer the ray would get, if I open the eyes very wide the shorter. Since light is reflected off all surfaces and is the way we see (light comes in, is focused, hits our retina and so on) -- everything we or I look at,, day or night has this effect and may be the reason for the unsettling appearance of 'motion'. I've tried to figure out how best to describe this phenomenon -- using such adjectives as shimmer, shaking, pulsing, (heat shimmer), flickering.. and so on. Nothing does it justice really. I find this 'motion' being something no one else on the planet relates to.. which is why it is scary. Because this unsettling very subtle motion which isn't the result of any nystagmus, inner ear problems, etc -- is part of what makes it so hard for me to concentrate on what I am reading, or looking at.

9) Eye fatigue -- zoning out, concentration -- My eyes fatigue nearly immediately after I wake up. I generally read on the computer very shortly after awakening,.. it doesn't take long for the eyes to already be 'tired'.. is the best way I can put it. My eyes tend to want to go into this 'zoned out' state. Best I can describe is my eyes want to relax themselves. When they do this everything is blurry and it is the same feeling you have when you 'zone out' -- imagine daydreaming or just zoning out .. this is what my eyes want to do by default now -- to read and do other things is an 'effort'. I sustain this effort all the time but I can feel the strain. I can't figure it all out.. so many variables -- but it causes my concentration to be so very low. It causes my reading comprehension to be so much lower than it used to be. (I tested in the gifted/genius category all through school/college in reading comprehension) -- and now it is a terrible effort. I can't imagine if I was already poor with reading how this would be currently. It is like I can see the words.. but I just read them, like you would do if you read a foreign language you didn't know. I then realize , man I have no idea what I just read,.. and re-read. Keeping place is frustrating,..visual memory is poor, and so on. I can only attribute it to the eye problems making the brain have trouble with the reading. Because I read ALOT.. never have taken a break from it so it is not a result of 'lack of reading' -- aka: not using my reading ability and becoming 'worse' at it. Does that make sense? So it is only logical that due to the progressing KC, it just makes this problem happen. Can anyone relate? Gosh I hope so.

There is more.. but that is plenty --

Thing is I am scared.. I am 31yrs old,.. in the United States,.. and what have I done so far?

Been to two optometrists (here it goes in order from low to high -- Optician - Optometrist - Ophthalmologist (which are usually surgeons) ) -- So I've seen two different optometrists in the last two years before I had any idea what keratoconus was.

First one found some 'oblique' astigmatism (which is astigmatism that isn't with the rule or against.. it isn't your common angles) -- but trying to correct it with the lenses in the phoroptor machine said I would 'kick' everything she tried out. The correction I needed on pre-exam didn't equate or work when tried. So it stumped her. I had full dilated comprehensive exams from both optometrists. Both found astigmatism of varying degree's -- as little as .25D, and some over 1D.. just random readings with no results. The visual acuity tested, both times, at least 20/20 (or 6/6 ) so they just say everything looks good health wise off you go. They did do slit lamp, and whatnot -- looking for health problems. But from what I've read and talked to other eye doctors online about is an optometrist in these types of tests wouldn't necessarily pick up Keratoconus with this type of testing.

In other words they would need to do some topography and so on to really find something. (Which is to be performed in my appt. coming in a month).

I think my previous exams pretty much rules out any cataracts.. and there isn't a whole lot of other problems that have my very specific symptoms other than, well, KC. So while not 100%, I am fairly certain. (I can even see a munson's sign when looking down (not sure if everyone has some or not).)

Though given my visual acuity is still relatively good even though the quality or 'function' of my vision is poor -- I would think my KC isn't incredibly advanced. That a fair assessment? And in that case, thinking positively -- maybe I would be a candidate for CXL, and so on.

I just want to ask this --

Does this sound pretty much like Keratoconus? (I am not asking for a diagnosis.. I don't take them off the internet, trust me.. and have the appointment with the doctor scheduled.. but humor me please.) If you don't think so,.. what else could it be -- *Please don't just say "I can't diagnose you over the internet you need to see a doctor* -- heh, I have prefaced this with the fact I have the appointment, but it a little ways out and I am just looking for some thoughts from those who are in the same boat.*

I have done extensive research on this and all other eye disease.. nothing else remotely fits this but cataracts (but my colors aren't faded at all, etc) -- and maybe dry eye (but dry eye doesn't produce all of these symptoms of this severity)..

Again, I have had 20/15 (slightly better than the 'normal') vision acuity and vision my whole life up until about 3-4 years ago. So no glasses or contact lenses,.. or eye surgery ever. Still virgin eyes as I type this. But the vision I have now is really, really,.. REALLY affecting my life. It is causing anxiety, depersonalization, and just a constant weird feeling because everything I see is , well, not normal looking. It is very hard to deal with your primary sense, vision, being distorted in such a way that is hard to describe , no one has sympathy for, and even worse is potentially progressive with no cure. (And in my case not positively diagnosed.. but the affirmation of KC won't do much good for the mood I don't think lol.).

Last question:

Given I do have KC,.. of the degree that is bothering me to such an extent --

Would RGP lenses, properly fitted,.. likely reduce alot of these problems ? To where I am maybe not back to my 100% normal vision of 5yrs ago.. but significantly better than now. Where things look.. well.. better than they do now?

Cause right now I feel pretty hopeless -- in that since my acuity is 'acceptable' my vision is what it is.. in that all these other factors of vision that I didn't used to realize even existed are making my world very hard and further only visual acuity can be helped with RGP's and so forth.

On the other hand,.. it would bring considerable hope if I thought corrective measures would take away some of this distortion. It only makes sense, to me, that it would. If my cornea is mishaped the light is being bent in all random directions which is hitting my retina improperly causing the many issues. With something to help cause light to not be improperly bent/refracted at the cornea the light then becomes focused more to a point , properly, and this stuff is better. You tell me.

Sorry so long,.. but I feel if I don't aptly go into detail the full picture isn't portrayed. So if you managed to read all of this I appreciate it.

I appreciate any replies -- I am just another person like you who is desperate at the moment for some hope. Man how I used to take sight for granted.. and how I wish I could just have really bad myopia, or hyperopia etc that normal glasses would do justice. heh.. go figure, right!

Take care,

Hey neofate

Welcome to the forum, and thank you for a detailed first post.

What you describe is consistent with my own experience of keratoconus,. Your age is on your side as corneas do 'stiffen' as we get older and the conventional wisdom is that people who are first diagnosed in their 30's seldom progress to need anything more than contact lenses to manage their condition. Again, this natural 'stiffening' is what they try to emulate with Crosslinking, so even that may be spared you.

You can look forward to very good vision with properly corrected lenses. In my own case I went from less than 20/200 without lenses to better than 20/20 with them.

Every good wish

Andrew

It is impossible to predict how well lenses work for each of us, the symptoms you describe were much reduced when I wore RGP lenses but light sensitivity was far worse. However the specialist soft lensses for irregular corneas (of which KC is one such condition) I have been wearing for past 18 months and all the effects you deribe and light sensitivity no longer exist and I despite my RGP lenses giving one line better than 6/6 (20/20), my soft lenses give 2 lines better than 6/6 (20/20).

So the type of lens you are dispensed can give different results, just describe to your optom in detail what your vision and lens comfort is, what you end up with might be a compromise but we can still strive for perfection as contact lens designs and materials improve.

Neofate

Actually, although most of your symptoms can be keratoconic, others seem to relate more to an eye muscle imbalance. These are the ones that cause the zooming in and out of focus, eye strain, the "zoning out" and the blurring when you relax your eyes. Sometimes this can happen when you do too much reading, the lenses inside your eyes can go into spasm. This can also come on as you get older as the lenses harden up and reading becomes more difficult. So, for example, the halo effects that disappear when you get closer to them may be keratoconic... but they may simply be that you are over focussing and you ARE becoming myopic at times. Over focussing will make you temporarily shortsighted and being short sighted will give you a blurry halo round lights that resolves as you get closer to them. As this can come and go, sometimes this problem is not obvious when you have your eyes examined.

Now this does not mean that you DON'T have KC, it may be you have it mildly but the distortion is enough to trigger these other symptoms of what we call accommodative spasm. A KC patient of mine came to see me the other week really worried her KC was going worse again. She had recently got fully sorted out with lenses and was using both eyes together for the first time in many years. As she has an occupation that requires intense reading, she had developed accommodative spasm and I treated her as I would an "normal" patient with this issue. She had immediately thought it was her KC. This is, by the way, why professionals DO say "we can't tell you without seeing you" because many conditions and problems share the same symptoms.

Your high level of anxiety is due to you not knowing what is happening and not knowing if it can be sorted out. Visual acuity CAN be restored with a wide range of contact lenses and if the other symptoms ARE a result of focussing issues triggered by the KC, then this can be sorted as well.

If you want to discuss this more with me by email, I am more than happy to help you lynn.white@lwvc.co.uk

Lynn

Thanks for the replies thus far!

Andrew:

Thanks for the advice. Are you calling me old? heheh.. No really I've heard of the lens's stiffening as you age, and I suppose the corneas do to. Though I didn't think this occurred quite so young, 30-31yrs old? I thought it really began to be apparent more in the early 40's.. As far as being diagnosed 'older' -- I do agree I am a 'late' bloomer of this -- but I also think my diagnosis will likely be one of late partially as a result of no one 'spotting' it sooner. I think this might have started more in my early 20's.. and became really problematic and (noticeable) in my mid to late 20's.


Gareth:

Good stuff. Thanks for the lens advice -- I know it is highly subjective and even highly different based on type of RGP.. or scleral, hybrid, rose,.. and so on + the skill of the fitter. (All that in combination with your particular set of aberrations and how advanced you may or may not be).


Lynn:

Thanks!

Can the eye muscle imbalance be a *chronic* problem if one continues to read alot daily?

You mention a problem of age as well -- I know I'm not 18 anymore, but this is a problem of my age range of 27-31 .. I have a hard time believing that is the particular age range of significant hardening of our connective tissues. I always thought closer to middle age was more 'normal'. IE: Age induced presbyopia and so forth. But, maybe you are young at 24, and then suddenly old at 29. (I mean this in a physiological sense not the whole 'age and number thing'.)

As for the 'over-focusing' -- My first optometrist did say to me I have 'hawk-eyes' -- she explained it a bit.. but it has been a while. Something about I tend to be able to see things (or in prior years moreso) further than other people because of the way my eyes would focus like a hawk. Which I think is along the same lines as you are describing. The less plasticity of the lens can make this more difficult now that I'm so ancient hehe.. but, there is also the whole constant *possible* eye strain from 8-12 hour days for a decade on the computer. Really hard to figure out. I hope this third doctor can help. I do know that pentacam and topography will be done so this will definitely pick up KC or no KC.. and irregular astigmatism and/or HOA's.

I have a question for you -- Is it possible to have irregular astigmatism (not just oblique.. which is apparent) but irregular that causes something like trefoil without any corneal dystrophy or trauma? Just sort of happens for no reason.. isn't going to get worse, but would be treated much the same was as KC. Only difference is if it remains stable , in the future, surgical approaches might be able to correct? (I won't touch lasik with a 10 foot pole ever.. because of all the stories I've read about how it induces ALL of the symptoms I have. I can relate to the post lasik nightmare stories the most as they are so specific to my own problems.. I've NEVER heard of my problems in virgin eyes like mine. Except, of course,.. with KC. )

You said the Patient you saw now has their eyes working together for the first time in a long time -- Was one of this patients eyes constantly deviated? Or did they just not converge and diverge and track properly together? Or something else? Also was your treatment with "lenses" is this glasses or contacts?

Lastly -- You say visual acuity CAN be restored with lenses/contacts/rgps..etc -- but,.. with already acceptable measurable acuity can the dozen OTHER visual dynamics that are often not measured be restored via the same method? The glare, sensitivity, contrast, visual field seeming narrow, double vision, ghosting, light streaking, halo's, starbursts,.. and just other things that are really effecting my functional vision. Acuity is a good measurement of vision -- but the more we learn of eyes and vision the more *some* are understanding vision is ALOT more than acuity alone. If it was just acuity .. or the ability to make out letters on a snellen (or equivalent) chart.. I would be very satisfied. I know you know this.. just trying to open it up a bit more..

Thanks everyone,

I use a sort of mixed economy of strategies to correct my vision. I wear glasses and a contact lens, my car has anti glare windscreens and my glasses are coated with an anti glare film, and I often wear prescription light excluders.

Add all this together and I can function pretty well.

I was once 35, and when I went to see an optician to be tested for reading glasses he said that the time had come for me to swallow my pride and wear them. I objected that I wore contact lenses and wondered how it could be that I needed reading glasses as well.

"What do you expect at your age", he asked.

"A bit of civility from opticians". I replied.

Andrew

Andrew MacLean wrote:I use a sort of mixed economy of strategies to correct my vision. I wear glasses and a contact lens, my car has anti glare windscreens and my glasses are coated with an anti glare film, and I often wear prescription light excluders.


Add all this together and I can function pretty well.

I have definitely already, pre-emptively, accepted it will very much likely take a multi-faceted, approach to have significant desired results in improving my vision. The good? I have NO correction now,.. meaning I have pretty much all the potential in the world for improvement.. can't get worse (other than progression of the KC).

I was once 35, and when I went to see an optician to be tested for reading glasses he said that the time had come for me to swallow my pride and wear them. I objected that I wore contact lenses and wondered how it could be that I needed reading glasses as well.

"What do you expect at your age", he asked.

"A bit of civility from opticians". I replied.

Andrew

Heh.. Yes, but generally reading glasses aren't that necessary until the 40's for the average population. Those who have altered acuity in circumstances such as ours.. yeah,.. we can push that limit a little. I'm 31,.. and I know 35 is hardly considered 'old' by anyone that isn't a teenager -- In other words.. when you are 55 you will think, man I was a kid at 35.. and at 75,.. well you will really think differently. Just as I think of my 16-17-18-yr old years now as vastly different in mentality -- Where as in my early to mid 20's they didn't seem so different. I don't deny I'm aging.. but I won't fall into the routine that I am by any stretch 'old' now.. -- Scientifically we don't hit our peaks physically until about 32 or so. Think about professional sports -- even the roughest on age .. ie: Football.. someone 30-31-32-33 ish is usually going to have their best seasons.. Some will push it into mid 30's.. others not so much. Then it doesn't fall off at a dramatic rate until your late 50's , 60's as far as your hormones, healing rate, muscle tone and so on.

Now the way people take care of themselves at 30+ -- that results in some very OLD feeling people, unnecessary pain,.. generally being unfit and not feeling as good as they could and should! Alot of people, as a digression heh, feel alot of backpain, neckpain,.. even knee, hip, and other pain just because they don't do some minimal exercise. (IE: They have ischemia of the muscles and joints) -- from lack of movement (sitting all day, then getting home and laying on couch, then bed.. rinse repeat). Pain sets in from the blood flow not being adequate in alot of the muscles, poor posture, the tendons, ligaments and so on tightening and people 'accept' it -- when a bit of stretching, and exercise done regularly would take care of it. Sorry, to get off subject there. I just am adamant in how people let themselves feel so much older than they biologically are when the 'fix' is movement/activity! I hate to see people suffer needlessly.

As an aside, but on topic sort of:

I've been reading about stem-cells,.. and Gene-therapy -- The are doing trials/research on both and a 4 million grant for gene-therapy was recently added to the team at the mayo clinic in CA,.. (Sinai) -- they are making huge progress with talks of in not the so distant future treating OUR disease and so many others of the eye (and body) with both therapies. This stuff is in our lifetime guys .. pretty exciting, but nothing to 'wait on'.. just take it as it comes.