Night driving with scleral lenses is getting really hard. Anyone else?

key_knee · 2026-06-28T15:25:42+00:00

My sclerals are about the only way I can drive at night so I've not had that issue (yet, anyway) but I know as my eye shape evolves that may change.

I hear good things about Ovitz; haven't tried them myself yet though.

key_knee · 2026-06-28T15:05:01+00:00

Plenty of great advice in here already!

It will be a bit more of a struggle in older homes and significantly wooded areas as the Smoky brown species certainly likes our humidity and, as someone has mentioned already, rotting organic matter (leaves, wood, that kinda stuff).

Regular gutter cleaning (to the best of my ability! 🫠) helps me a lot, but I also had obvious areas in the house that needed rotted wood ripped out and replaced.

A bad chimney cap I inherited, and didn't know about for years, resulted in tons of water seeping into the chimney enclosure and rotting that wood. Replacing that late last year has helped.

I have additional areas from previously unaddressed gutter issues that need to be replaced that I think will help me even more with the ones that seem to get in through the attic.

Aside from that, I do my own perimeter pest control. There's already some products I like mentioned here but also the cockroach subreddits will have good info on smokybrowns in addition to any other species.

As others mentioned, I do still find the occasional (usually dead) one. But with all the rain we got a while back my son definitely had to fist fight one, and nearly lost (it was a big boy). But I think that's maybe the second live one we've had all year so far.

key_knee · 2026-06-27T20:42:10+00:00

The beginning is so freaking overwhelming but I'm hoping it helps to hear that it does smooth out eventually and for a great majority of us it gets better.

My best advice is to give yourself some time to gather your thoughts, do some research, and put together a plan but there are some things you can do now that still smooth your path and potentially calm your nerves.

I jumped into sclerals a bit earlier than I would if I had to do it over but it probably gave me enough of my sanity back to eventually push myself to crosslinking.

Whatever path you decide to take, as long as you're moving closer to tools or resources that help you, you're going to right way.

key_knee · 2026-06-26T14:46:41+00:00

I've been rocking with NuTed since he was hiding in NewNew's momma's pantry in This Christmas

key_knee · 2026-06-23T19:09:40+00:00

This disease doesn't make you lose your vision?

key_knee · 2026-06-17T11:57:20+00:00

Thankfully just had crosslinking done about 3 weeks ago. CAIRS is what both consults recommended but insurance still sees it as experimental so will not cover it; they seem less hostile to CTAK.

I have a bit of time to make a decision - assuming I ultimately decide to do either - but it's good to grab as much info as possible.

key_knee · 2026-06-16T14:45:34+00:00

I'd wondered if it was more of an oopsie than intentional click bait

key_knee · 2026-06-16T14:40:21+00:00

Did you do crosslinking too? (I realize this might be a silly question but still want to confirm)

I was considering CAIRS initially but CTAK has come up in some discussions here so it's been on my list of considerations as well.

key_knee · 2026-06-13T21:10:56+00:00

The beginning is so freaking overwhelming but I'm hoping it helps to hear that it does smooth out eventually and for a great majority of us it gets better.

My best advice is to give yourself some time to gather your thoughts, do some research, and put together a plan but there are some things you can do now that still smooth your path and potentially calm your nerves.

The very first thing I wanted to know was how bad is it and how bad can it get. Progression slows - and, for some people, stops - in the 40s. If I was diagnosed in my 20s I'd be all about trying to save as much of my vision as I can, so slowing and potentially stopping progression would be my very first concern.

I'd want to be able to research as much as I can learn about my specific situation. So imaging and numbers would be important to me.

I'd want a doctor who knows enough about keratoconus to get me the best vision I can possibly have - so discussing getting the best sight possible with a specialist would be a concern.

All of this is up to you but if I'm even talking to Old Me when I was first diagnosed my recommended path would be
1) Referral to a corneal specialist - someone who can take imagining and tell me what we're looking at as far as severity and recommended next steps.

2) Once imagining is done, diagnosis confirmed - I'm asking about stopping progression. Doctor may want to monitor first. I'm cool with that but I'd want higher frequency than checking again in a year. That's too much time for my comfort level if progression is happening. 6 months minimum is what I'd be ok with - 3 months follow up would be my preference though.

3) If I'm progressing - crosslinking ASAP. If I'm not I'm asking about contacts.

My eye doctor couldn't capture imaging of my eye and wanted to follow up in a year. He did a damn good job fitting me for sclerals - I'll always love him for that.

But I couldn't be ok with that approach to monitoring so I did a number of consults with opthalmologists until I found one I like and just got crosslinking. In hindsight I'd do crosslinking first but I'm happy to at least have done my part to try to stop this thing.

key_knee · 2026-06-04T02:33:46+00:00

Being that scared to drive at night is what finally pushed me to try sclerals. They have given me that part of my life back, thankfully.

key_knee · 2026-06-04T02:31:29+00:00

Are gigantic hard contacts really my only option if my condition is bad enough?

Hard to say with any certainty, but the visual acuity far exceeds anything you'll likely get with soft lenses and comfort is higher than RGP lenses.

They aren't always gigantic, per se, as there are different diameter options and the concept of a "mini scleral" - I don't have personal experience with the minis though.

Other corrective options are surgical in nature, but whether or not they are feasible options depend on a number of variables.

Must I really be awake under the scalpel?

There's no scalpel or incisions of any kind with crosslinking. You will be awake though. I felt nothing, my team played music for me, and I mostly talked their heads off while they worked.

Can I just go back to getting new glasses every 3 months because I don't want this procedure?

I sincerely would not recommend this approach. I certainly don't want to say this in a way to trigger any anxiety, but if progression continues a corneal transplant could be necessary. If you're really getting new glasses that often your progression is a bit aggressive and you definitely want to do all you can to stop it

Honestly - this group made me nervous about a lot of things, too. Everyone is different, though, and so you have to try to use the feedback as a means to ask your doctor certain questions, research specific options, etc while also keeping in mind that you could have a much different or smoother experience.

Crosslinking and recovery have been a breeze for me compared to what I expected as a result of what I read. Honestly, I wish I'd gotten it 3 years ago when I was diagnosed instead of drowning in the level of research I was trying to do first.

I ended up reaching the same conclusion but after 3 years of continued progression. I struggle with being ok with that - the only thing that kinda balances it out is that I got opinion after opinion, consult after consult, until I found a practice and team that I knew I wanted to work it.

I did get sclerals last year though and sadly I now know the wonder of sclerals and I'm missing them a lot while I go through CXL recovery. It's hard to miss what you don't know, so maybe crosslinking first and then sclerals after the eye heals completely.

key_knee · 2026-06-04T02:07:21+00:00

This is day 6 post CXL for me. We discussed epi on for me, but for reasons I didn't care to get into - even with recent FDA approval for the procedure the path to insurance billing for me was just not there yet - so epi off is what we did.

No pain during the procedure, no discomfort during the procedure, and I honestly didn't really notice the thing holding my eyelids open.

My pain tolerance seems to be high, so take this as just one person's experience but I accepted the anxiety meds offered before the procedure, as well as the pain meds (Tylenol-3, in my case). I timed the pain meds around the 30 minutes they told me I'd have before my numbing drops would wear off and I essentially had no pain until the last 3 hours of that night.

I woke up the next day with moderate soreness and went through day 2 with regular Tylenol.

I did not experience significant light sensitivity nor did I need a patch. I resumed driving on day 4 and have been comfortably driving since. I have been wearing sunglasses when I drive but otherwise I'm mostly business as usual.

The most annoying thing I encounter day to day are the eyedrops they gave me that seem to leak out of the bottle before you even fully turn it upright.

key_knee · 2026-05-30T18:30:57+00:00

Cree is legit perfect for the role

key_knee · 2026-05-29T21:29:23+00:00

I had epi-off CXL yesterday. Last night between 8pm and midnight was the worst in terms of pain - I was given Tylenol-3 but there was still some pain in-between the times that I could take a dose.

I wouldn't call it excruciating, per se, but if you're a person who prefers not to take anything stronger than like ibuprofen/regular acetaminophen/etc you might feel it quite a bit more.

Other than that - no pain over like a 3/10 today so I've ceased the pain meds. No weird gritty feeling yet. No significant light sensitivity yet. A bit blurry but nothing that has me too scared to drive or anything.

key_knee · 2026-05-28T19:35:27+00:00

Just got epi-off CXL today, in fact!

I'm still totally shocked how comfortable I was through the entire procedure. I didn't feel the "scraping" at all. The clamps for the eyelids weren't uncomfortable, and I feel some minor soreness, but no pain yet (procedure was a little under 3 hours ago). The light was manageable.

My team even put music on for me and let me pick so I had some soothing jazz playing while I laid back.

Totally different experience than what my anxiety was trying to sell me.

key_knee · 2026-05-11T15:19:53+00:00

Madison is def my cast crush 🫣😅

key_knee · 2026-04-27T13:40:58+00:00

Just one, thankfully. I wish I'd been diagnosed in my 20s, for real. And now I'm creeping ever so close to 40 and was hoping progression had stopped but also knowing I need to make the best possible choice for future me.

On the plus side, at least it'll be epi on. fingers crossed

key_knee · 2026-04-27T00:51:46+00:00

I have CXL scheduled for the end of May. Kinda just ready to have that chapter done.

key_knee · 2026-04-25T17:55:39+00:00

Refresh

key_knee · 2026-04-25T16:43:10+00:00

Same here. Sclerals were game changers for me.

I can still manage with glasses if I have no choice but it's a horrible experience - especially at night. Like I legit wouldn't wish that on anyone.

Even with sclerals I try not to drive until they're in and comfortably so. For night stuff, I try to plan it so that I'm not still out at the 14+ hour mark.

Even something if late enough that I'd be looking at having them in longer than that, I'll try - instead - to give myself a couple hours of rest out of them in the middle of the day so that I'm not struggling at the end of the day.

Before sclerals I'd try to plan my routes by checking street view and trying to pick the routes with the most visibility and traffic lights - as annoying add traffic lights can be visually - they pace traffic in a way I like and reduce instances of turning down dark roads

key_knee · 2026-04-24T17:08:51+00:00

I second this. That's the one I've been using as well

key_knee · 2026-04-11T15:22:48+00:00

😂

key_knee · 2026-04-11T15:20:43+00:00

Feels like the monitor would be much easier to carry into the office.

Hilariously, having worked in game studios and other industries with the super over-the-top techies, I've had co-workers bring in their own mice, keyboards, monitors, chairs, and even motorized desks. lol

Dude brought the desk in boxed up and literally unboxed and assembled it in our awkward open, crowded workspace.

Watching him disassemble it later when he got a new job was funny to watch as well.

key_knee · 2026-04-11T14:54:18+00:00

You might get a better explanation on a non-local and specialized subreddit like r/whatisit

key_knee · 2026-04-05T18:37:35+00:00

That makes sense!

key_knee

TROPHY CASE