Can't bear wearing contacts...

I have been diagnosed with Keratoconus, which is a cone-shaped cornea, and have been told by my optometrist that to properly correct it I should be wearing contact lenses.

I tried a few contacts lenses and came home with a pair that were confortable, but over the last week I've started dreading wearing them. They start out okay but after 4 hours or so my eyes get super tired and dry and I end up with a thumping great headache.

Does anyone have any suggestions on what else I might try to make this a bearable enterprise? I have gone back to wearing spectacles and tbh would probably prefer to wear them exclusively, but my optometrist insists that contacts are my best option. He wants to be to trail some other ones but I am really procrastinating here! Are there tricks of the trade to help me cope?

Sushee, I occasionally had the same problem with contacts as well - the tired feeling eyes. I sometimes got a headachey feeling, but just a small one. The only thing that helps even the tiniest bit for me is lots of eye drops! I used the Murine brand and I just bought the eye drops in the supermarket, and I carried then around in my bag everywhere I went. I havent used my contacts in a while though - I need to get some new ones as i hve run out (i use the disposable ones). I've started wearing my specs again for the time being.

Did you get the soft or hard contacts? Maybe its just tht your eyes are still getting used to them? When I first got mine, my optometrist told me not to wear them for a full day to begin with. He suggested wearing them for 2 - 3 hours a day for the first week, then gradually increase the amount of time per day over a couple of weeks.

Sushee - I have severe Kerataconis and have to wear contacts as I can't even see through the glasses. What brand are you using, I had to try a few different one's til I got it right..

Karina I've been given 14 day disposable soft lenses to try out and I didn't know you could use Murine in them! I may try that tomorrow. I started out for 2 hours, and worked my way up, but I can't seem to get past 4 hours before they start getting really uncomfortable.

Nichambhar, I can't see as well through my glasses either but I figure it's better than nothing. This set of contact lenses I've got was supposed to be the ones that fit my eyes best, but maybe I should try some others. I just need to push myself a little. I can see myself happily just wearing my spectacles only but I guess I should persist with trying to get a pair that I'm happy with.

How much of a wuss am I? Even writing it in my filofax to call the optometrist and book an appt in to try different contacts, my stomache is clenching in dread!

I've just started wearing contacts - the 14 day ones and for the first 7 days I got bad headaches, then they went away. If I have them in all day though I still get a headache and my eyes get dry so the optometrist gave me some drops called Blink eye drops. They are fantastic! I even used them the other day when I was wearing my glasses and I had a hangover and they were great lol!

Sushee, just check on the packet of the eye drops. Some of them are not suitable for contacts but some are. You could always get some eye drops from the optometrist. They would surely have ones that are ok for contacts. My optometrist gave me a bottle of eye drops. I think the brand was Renu or something like that. It was the same brand as the solution you soak them in. They felt very nice, but I only used them a few times before I managed to lose the bottle.

And no, you arent a wuss at all. I get all squeemish when I have to go to the optometrist too!

Refresh is a good brand of eyedrops for contact wearers. I carry a few disposable vials around with me.

I swear by contacts and would much rather wear them than glasses and have been lucky enough not to have had any problems with the ones I've used.

sushee - did your optometrist say why he'd offered soft lenses for you for kerataconus? - basically, from what i've read, they're not going to help you at all! basically, soft lenses just sit over the cornea, and fit to the shape of your eye - when you have kerataconus, you have a conical shape to the cornea - there is a thinner spot on your cornea that allows the intra-ocular pressure to push the centre out - when hubby was diagnosed with this a couple of years back, he was sent to four different specialists before we got to a contact lense specialist who was actually able to fit hubby for gas permeable hard contact lenses - no one else even claimed to be qualified to do it.... apparently the hard lenses put the right amount of pressure on the front of the cornea to reshape it to the ball shape it is supposed to be, rather than the conical shape. i'd be checking how much experience your optometrist has with kerataconus cos it doesn't sound right to be given soft disposable lenses - perhaps this is part of the reason as the lenses aren't suitable...

as an aside, it wasn't til the fourth specialist that we could get an answer with regard to the genetic link for kerataconus - three said no, the fourth greeted us with "this is a genetic problem, so you will need to monitor your children"

feel free to pm/email if you want any more info hun

My optometrist did say that until recently, people with Keratoconus only had the option of hard lenses. He also said that those who have severe Keratoconus still only have that option, but in my case he could get specialised soft lenses to suit me, as mine wasn't as severe and my main problem was astigmatism. Honestly too if he'd mentioned hard lenses I probably wouldn't have returned (told you I'm a wuss) My DH wants me to see a specialist, but I am resisting.

The optometrist also said it was genetic, passed from mother to son, so I got my older sons checked out too. Luckily DS2 is clear, but DS1 has mild astigmatism but no keratoconus. Charlie will get tested when he's a little older.

As for these contacts, I still don't know what to do (or rather what I want to do). I'm going to wear them today (sigh) amd see how I go.

Sushee I love the accue Oayas contacts I have even slept in these my secrect eye drops and and a lucricating soultion. I love the confort and refesh brands it took awhile a first but now I would be lost without my contacts

maybe try a three hours, take a break, then another three hours later in the day - so you get a longer wear during the day, but not all at once...

our kids have no hope eye wise - DH has kerataconus, i have severe astigmatisms (i'm one of the unfortunate ones who's so bad i can't even use disposable lenses still cos they twist on my eye!) and am long shorted in one eye, short sighted in the other!!

DH ended up getting specially made lenses for his glasses so that he can wear them as he can't stand the lenses with his work being so dirty/dusty

Hi Sushee I'm an optometrist so I know exactly what u are going through! Briggsy's girl is right - the standard correction for keratoconus is hard lenses(or RGPs - rigid gas permeables). If your optom has given u soft lenses to trial then the keratoconus mustn't be severe.

There could be a few causes for your discomfort, but is more than likely dryness as most of the girls have noted. Lubricating eye drops may help - I'd recommend Bion Tears, Refresh Contacts or Blink 'n Clean - all available from the pharmacy.

Secondly, b/c of the astigmatism, your contacts will be thicker than those that just correct short or long sightedness - and certain brands will be thicker than others. I'd recommend Acuvue Advance for astigmatism, Coopervision XCel Toric or Proclear Toric. Depending on your prescription though, some may not come in your 'eye size'.

If your optom has given u a higher oxygen material such as Purevision Toric, hey generally tend to be a little thicker again, and as a result, a little less comfortable.

My advice? If you're up to it, try a different type of lens, as what suits one doesn't suit all. If u work/live in a highly heated or air conditioned environment it is worth telling the optom too as that can influence lens choice. At the end of the day, it is simply your choice and you have the option of wearing contacts or not. Don't let the optom push u into something you're not comfortable with *hugs*

Aw thanks Franstar! I honestly did think I'd love wearing contacts, but now I've got them, I do dread putting them on each morning. I am glad you've said it's my choice because it feels like a weight's been lifted off my shoulders! In fact now I know if it doesn't work, I can give it up, I'm feeling better about persisting with them or trying another type if it doesn't work (reverse psychology? Lol!)

I don't know which brand I've got now as I still have the trail pair, but apparently it's mid range for oxygen levels and at the time, they were the most comfy. I do think drying out is a big problem, so before I give up on these, I will go get some eye drops and try that!

Hi Sushee,

I suffer quite badly from dry eyes when wearing my contact (i hate glasses). One of the tricks that i found was keeping the eye drops in the fridge, when they are cold they seem to give me more relief.
Also i use just Normal Saline, as i put loads in and i dont have to worry if the brand is compatable as it is almost the same as normal tears.
HTH
SJ

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DH ended up getting specially made lenses for his glasses so that he can wear them as he can't stand the lenses with his work being so dirty/dusty

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Can you provide some more details on this? I have KC, in one eye only, and as it's a weird offset case I am having lots (and I mean lots) of trouble getting a RGP to fit comfortably, even though my case is mild/moderate. Previously I have worn a RGP for about a year with no problem at all.

I have gone back to glasses as of today, and it feels like I am on an awesome LSD trip.

Hi slyder, I have severe KC in both eyes and have had an episode of hydrops in each eye (where the cornea actually splits and fluid leaks in - very nasty stuff and just a shade away from a cornea transplant on one side :(). One of my corneas is so steep I can't get lenses to correct it anywhere near an acceptable level of vision, but at least it helps me get about five lines down the board. My other eye is much better with lenses.

But my optometrist still fiddles around and tries one fit after another if need be to get it right. I have had lenses sent back three or four times to get a better fit on that eye. I take out the insurance cost every time I need a new lens because I know, even now, it's trial and error. The thing is, depending on how bad your KC is, the contact lenses can actually help the condition, by reducing the level of pressure on your cornea. So not having contact lenses in my case is not even an option (besides the fact I'd be legally blind because glasses can't correct my vision enough), I'd end up with a double cornea transplant before I'm 40.

It sounds like you should be seeing someone who specialises in KC. I found my opt through my eye surgeon and this opt was the first one in numerous tries who got it right for me. PM me if you live in Sydney and I can give you either name for a recommendation.

ETA: there's also a KC Assoc in Australia. They might be able to help you out with a good opt who specialises in your area.

Can Laser fix it?

I have tried about 12 brands of contact lenses and still haven't found the perfect one.
They either make me super super sleepy, or they slip around my eye, or they give me crappy vision.
Apparently drinking heaps of water helps (yeah right....)
:S You should just try heaps of different brands till you find oen that's awesome.. Heaps of people have no problems with contacts. Hopefully you find one that fits!

Laser treatment is a no-no with KC. Because of the thinning of the cornea, doing anything to the cornea will seriously jeopardise your sight.

The contact lenses for KC are rigid gas permeable (RGP), or 'hard' contact lenses, not like the disposable ones you can use on a daily basis, 'soft' contact lenses. That means they have to be made as you would with glasses and individually shaped and fitted for each eye. So a bit more complicated than glasses. And what looks like it might fit when your opt measures your eyes and the steepness of the cornea might not fit as well as anticipated, or rub too much and leave a dry spot on the cornea. It all gets very complicated (which is why one Medicare-subsidised visit to an opt every two years is a joke if you have KC, but that's another thing...!).

Hubby has KC and wears the RGP's.
God he was awful for the first week wearing them.
As his Opt. said to him. Four days of hell and two weeks of purgatory then you should be smooth sailing.
He doesn't seem to need drops as often any more, after about 2 years. The ones he finds the best are Boston brand. Same with cleaning them.

He was lucky to find an Optometrist in Toowoomba who is a specialist in the field and sees him not as regularly as he should. It's important to see someone who specialises. Maybe get in contact with Keratoconus Australia.

ETA - DH has had no trouble getting his contacts to fit properly. He is legally blind with out them in and one of his eyes is very bad. Perfect both times he's had them done. So I'd probably be going else where to get them fitted properly rather than wear soft lenses and risk the KC getting worse.

ll80, I so empathise with your hubby! But when you don't have any other option, you get used it as quickly as you can. Mine are Boston too, but I think that has more to do with who supplies the KC shaped lenses anyway, I don't imagine there's dozens on the market.

And thanks for putting the right name of the org in your post. Clearly I haven't contacted them for some time. ;)

I know DH's lenes got made in Brisbane by a specialist company. I was under the assumption that's where they all got made but now that I think about it, probably not :)
Might be worth looking into though.

sorry slyder - didnt see your post before now - DH's glasses have been a different grind (similar to those for astigmatisms i think) - he still can't bear the contact lenses - which is seriously problematic for us! don't know too much more about it - we just let the optom do his job and we get the script filled. the progression is more rapid than we had feared so we're going to have to look into other options for him very soon.

Jennifer, sounds like you've had a hairy run with your KC, but that you're coping very well.

I originally went to a practice which shunted me between 3 different optometrists depending on who was available and this totally buggered the whole process up. Plus they didn't have the machine which measures corneal topography so there was too much guess work involved. I changed clinics a couple of months ago and my new optometrist knows a lot about KC and is pretty cluey. I'm on my fourth trial RGP with him now, and according the most recent fluorescein examination, this current lens is basically a perfect fit with no pressure spots or abrasions. The problem is though, I seemed to have developed dry eye in both eyes and even in my left eye which I used a soft lens in, I can't even tolerate that any more. I have used stack of drops from different brands but they don't help much. He thinks tis issue may be contributing to the lack of comfort I am getting even with my new lens, and of course this isn't helped by the fact I've noe gone back to glasses for a break and then have to readapt to the RGP all over again. But after 3-4 months of having to take out the RGP 10 or more times a day, clean it and reinsert it to make it comfortable, the glasses are a very welcome break, even if the vision isn't as great.

I wish I knew what caused this dry eye thing - the same thing happened last year for a couple of months. So frustrating, because generally I could wear both types of lens for 14-15 hours a day.

BG - I do understand the problems for DH working in dusty environments with RGPs. As far as I can tell, they are pretty much useless unless you work indoors. Maybe he sould be looking into Intacs. Not sure if you've read much about them, but they help flatten the cornea somewhat, and although glasses would still be needed, they sound pretty cool for advanced KC. Could be exxy though?

expense doesn't matter if it gets his vision stabilised - just dont' have the dollars right now - will look into it though - thanks for the suggestion

TBH I know very little about the concept, except that it sounds cool. Lots of mixed reviews on the interwebz though, but something worth keeping in mind I guess.

yeah for sure - will get in contact with the specialist in melbs to get some info rather than on the web - he was a really "down the line" honest guy - if he thinks it's a bad idea, he'l say so

DH is the opposite he seems to get alot of gunk happening in his eyes. He finds it such a pain cause sometimes he has to take them out a few times a day to clear the gunk.
It's not related to the KC, he has no infections or anything like that.
OPt. doesn't know why his eyes produce so much crap either.
Occasionally DH get's dry eyes as well and the lenses stick to his eyeball, he has to get it out asap or load up with drops and move it around a bit. Sounds and looks very painful.

Definitely no easy solutions. I hope the dry eyes ease up soon!

BG: will be interested to hear how you get on. (in summary, they are two little rings which get put in just under the cornea but can be removed surgically at a later stage if/when required).

ll: thanks :)

Argh slyder, that is problematic. I hope a break is all you need. I am very lucky to be tolerating the lenses as well as I do, my vision without them (glasses do nothing because my KC is so advanced) would mean no driving, working or reading. :( I have astigmatism as well. I hope your new opt gives you the right level of care to get everything on track.

BG: Your poor DH. Seems like there needs to be a lot more done in this field to help us problem patients!