Looking for advice - dry eyes have ruined my life ...

[Ericska]

Hi everyone,

I have been reading posts on here for months and I don't know what I would do without this site.

I have had dry eyes for over 15 years but this past summer, something happened to my eyes and I suddenly stopped producing tears all together! I went to Emerge and they told me I had severe-severe dry eyes. Surprise! Like I didn't already know this. Three months later, still no one knows what's happened. I have had blood work done, been to the optometrist three times, waiting to see the ophthalmologist and need drops every 30 minutes. I was told I am aqueous tear deficient. Over the years I was told I don't produce the proper oils .....

Anyway, doctors are just not up to snuff about dry eyes! I feel that this could have been managed over the years if they only understood. If a doctor isn't laughing at me then they are telling me to just take drops and move on.

When I asked all these doctors if I can / will go blind from this they all said yes! I have been terrified ever since wondering if this is true. Whenever I read a site or google this, it says it's not common and not likely. Does anyone know if it's possible or does anyone know of someone who has gone blind from DED? I was told that if I had some disease accompanying it then it could happen but I don't.

During the night my eyes open - so is it possible since I don't have any diseases and it's not a side effect of any medications, that it's just from that? I use Lacrilube 3x during the night or I wouldn't make it through the night. I do warm compresses often and cool ones and use my drops constantly! My life has virtually come to a halt.

I've read posts on here from many who say they do as much as possible with their eyes closed. I'm actually typing this with my eyes closed. I'm not able to get wrap-around glasses or sunglasses because of my prescription and same for the moisture chamber goggles. My only other option is getting side shields on my current frames but I'm not sure if that would be enough.

My left eye is dryer than my right, however my right eye is the most painful. I have a constant feeling that there is something lodged in the corner of my eye and the top of my eyeball is in constant pain as if it's being pushed out. I've had tints put on my glasses to help with the glare and I have two humidifiers, which aren't doing much. I've read that post-menopause can aggravate DED, however I'm barely peri-menopause so I'm worried what will happen when I finally do reach menopause.

Like many others on here, I've given up many of my activities because I just can't stand the pain and I can't go for more than 30 minutes without either needing a compress or drops. And unfortunately for me, I can only use PF drops or gels because the preserved ones burn my eyes.

I started using Restasis in September and I haven't noticed an improvement yet, however I understand it takes two to four months so here's hoping! I take Omega 3, 1200mg 3 caps daily and Vitamin A. I do the lid massages and use the TheraPearl Eye Mask, which only helps for a few minutes.

At least now when I cry I have some tears so that's an improvement I guess - and let me tell you, I have been crying a lot! I cannot believe how misunderstood dry eye disease is by doctors! With all those out there suffering, I just can't believe there aren't more education physicians out there about this. After a lot of internet searching, I found a doctor in Pennsylvania and I'm hoping she will receive my email and see me. I'm in Canada but I am so willing to travel anywhere if someone can help me.

Is it possible that sleeping with your eyes partially open can cause this aqueous tear deficiency?
Does dry eyes eventually cause blindness?

I'm at my wits end. Any advice would be appreciated.

[alb1967]

I am sorry to hear you are in so much pain. I am curious as to why you cannot get your eye glass prescription in the moisture chambers glasses. I have Wiley X Airrage and even though they are plano it says you can get your prescription in them. Also have you looked in sclera lens or PROSE lenses ? I have them and even thought I still put drops in over the lenses they help me out a lot.

[Ericska]

Thank you alb1967! I am discussing the sclera lenses with my optometrist as I cannot see a specialist for another couple months. I have been told that because my prescription is progressive, it cannot be done. I am in Canada, maybe no one here knows how to do it?

[Ericska]

I also started using HYLO lubricating eye drops and these are much better than OTC drops. Well, for me anyway - with HYLO I only need to use it every 2 - 2.5 hours not every 30 minutes. But of course it is 3x the price but so worth it for me right now.

[Ericska]

What are the sclera lenses like? How often do you still use drops? May I ask what type of dry eye you have?

[alb1967]

Sclera lenses are large hard gas permeable lenses that fit on your sclera (the white part of the eye) instead of the cornea. Mine are Jupiter Euphora ones and they are 16ml wide (I think regular hard ones are like 9ml. I got them in Dec 2014 for dry eye and vision (I have an irregular cornea due to lasik in 2005). They were great until July when my eyes started to get drier. that is when I started to having to put drops over them cause the were drying out (they sit higher on the eye than normal contacts). It is now almost Nov and I was up to putting drops over the lenses about every hour (I use Refresh plus). But I started on some Azasite and my eyes have improved. I have only used drops 2 times so far today and I put them in at 6:45 (it is now 12:15pm) this morning so I am happy about that. The azasite is SO expensive (I have a high deductible plane and it was $155.00!! for a 2.5 ml bottle ouch) so I doubt I can stay on it all the time so hopefully when I stop the improvement will continue.

[alb1967]

Also what are HYLO drops?? Can you get those in the US. I have not heard of them. My eyes get really dry when I do not have my lenses in

[Ericska]

I understand the expense. My insurance doesn't cover any of my drops because they are not prescription due to having to be preservative free. It is all out of pocket for me but what choice do I have?

I'm sure you could get HYLO in the US. It is ordered by the pharmacy that you go to. It is from Germany and it contains the sodium salt of hyaluronic acid, which is found naturally in the eye.

The bottle is pushed from the bottom using two fingers, while the thumb is holding the top part . This produces one drop to avoid excess liquid into the eye. It is extremely soothing, almost feels like silk and last longer (for me anyway) than OTC drops. It doesn't cause blurred vision like some of the thicker drops or gels. It can be used with contact lenses. It comes in a 10mL bottle for ~$40. It says it has 300 usable drops - this is taking in to account that they say you should only need to use this 3x a day. I find I need to use it 4-5 times a day but that's still better than every 30 minutes.

I still use Refresh Celluvisc when I'm at home and Lacrilube for overnight. I'm also on Restasis, which I understand takes 2-4 months to start working. I started in September and so far haven't noticed any improvement in my tear production but I'll keep going with it. This is $250 a month!!

The HYLO also comes in a GEL; HYLO dual for allergies and Ocunox for overnight (like Lacrilube). I haven't tried this one yet. They are all preservative and phosphate free.

Ask your pharmacist - I'm sure it is available all over the world since it needs to be ordered.

I just Googled the sclera lens - wow!! I sitll don't understand how it helps dry eyes.

Have you tried Restasis? Also, do you do warm and cool compresses? I do this 2 - 3 times a day. Usually twice during the week and 3x on weekends. Sometimes at work too because it's very dry and all the computer work. I've actually started taking a day off every week so I work 4 days and have 3 days to rest my eyes. I don't know how much longer my employer will agree to this but I said until I see the specialist to see what's happened since the summer - this is the way it is...

It may sound strange but I also close my eyes whenever possible - for example if I"m on the phone, doing the dishes, and like now while I am typing this to you. When I put any type of drops in my eyes, I keep them closed for two minutes. I find it doesn't evaporate as quickly out of my eyes and while my eyes are closed I move my eyes around to spread it around. Being outside in the wind, I walk with my head down and my eyes only slightly open - enough to see where I"m going.

[Ericska]

Do you take Omega 3 at all or vitamin A? I'm trying to find drops that contain Vitamin A even though I take tablets and Omega 3 for over 3 years but obviously it's not enough.

[Ericska]

What I find irritating is that my let eye is much, much drier than the right BUT my right eye is the most painful - the eyball and feeling like there's something in my eye .. it's so strange ..

[alb1967]

Yes I take Theratears nutrition 4 a day (I was taking 3 but I have increased it to 4). I am also cutting back on sugars and carbs. I wanted to go gluten free but I take heart meds that has gluten in it so I cannot go gluten free but I am eating more gluten free things. I also take Restasis 2 times a day. You know one box can last you 2 months. I get 8 drops out of one of the vials. After you open in, place it upright in a shot glass and you can use in the next day. Buy be careful not to let the tip touch anything. I also do warm compresses 2-3 times a day. Once in the morning and 1 or 2 times a night. sometimes more on weekends. I do not take Vit A but maybe I should. How much do you take? Sclera lenses are filled with PF saline so it protects the cornea all day. But the part that the lens does not cover on the eye does dry out so that is why you use the drops, to keep the lens moist and the parts that are not covered by the lens moist. The TBUT is better in my right eye but I do not produce as many tears so that is my worst eye. Wind is bad for me too (use to not be but since I have gotten so dry it is bad). I have to use my Wiley X's outside and the clear ones sometimes inside if there is a lot of wind cause it dries out the lenses. I am going to a blood test tomorrow for Sjogren's Syndrome. my Dr thinks I may have this since my eyes have gotten so dry lately but I have no other symptoms esp the dry mouth. I hope I do not have this but at least it will be an answer as to why I have gotten so dry.

[Ericska]

I do that with my regular drops - the Refresh Celluvisc. The top actually goes back on or I do the shot glass thing and was told to use it within 12 hours. I was told not to do that with the Restasis!!! Oh my gosh - well I will do that from now on for sure! Thank you. I thought Restasis was so specialized that you couldn't do that like with regular drops ..... wow, what a way for them to make more money off us!!

I was tested for Sjogren's, Lupus, RA and all negative. It's good but disappointing at the same time because now I have to search elsewhere for the sudden decline in my eyes. My Vitamin A was borderline so I wasn't deficient but I started taking the pills so it remains stable. I take one pill in the morning with food. I may up my Omega 3 to 4 caps, right now I"m taking 3, which my doc says is fine ... I wonder too if it's because my eyes open during sleep .. but can this be the sole culprit for me and cause me to actually stop producing tears? I don't know what else to be tested for. I'm not on any meds that cause dry eyes, nor do I seem to have any of the diseases contributable.....

Thank you for the explanation of the sclera lens - that makes sense now. Is it uncomfortable?

Well I hope they find something for your sudden decline as well. I read that with Lasix, some nerves are damaged and that's why people have dry eyes after that type of surgery ..

Let me know if you can get the HYLO and if it's of any help. Right now I am finding it a godsend. It sounds silly but if I can go for 2+ hours between drops, I"m a happy camper!

Do you find it hard to read? How do you survive the day?

I will check in to whether I can get the Wiley X's with my prescription. Here I'm always told no .....

[Ericska]

Have you heard of Lacriserts? I've heard varying things about it. Some say it helps others say it just becomes a big glob of goop in the eyes and does nothing more ..

[alb1967]

well almost everyone I know that is on Restasis uses I vial for 2 days. I have been doing it a year now with no problems. Yes scleral lens are more comfortable then regular lends but much more expensive. As long as they stay moist I love them. Yes lasik can cause dry eyes but I had my lasik in 2005 and never really started having problems until 2014. When I do not have my lenses in, I do wear glasses but I cannot go anywhere but around the house with them because my eyes do get dry and it is harder to see plus I have the ghosting issue in the right eye from the irregularity in the cornea. Trust me I have cried a lot about this (but remember crying makes everything worse, dries your eyes out). I get angry but I also deal with heart disease but I am still alive and have my sight so I have that to be thankful for. I also have a great and supportive husband. I have lost both parents (I am only 48) so he supports me a lot. My Dr gave me a sample of Lacriserts but I am leery of them. If you so not produce tears at all I do not see how it helps. I have not tried them yet. I also heard they can be really uncomfortable. There is a test for Sjogrens besides bllod work, it is a lip biopsy, did you have that done ? Have you tied any steroids or Azasite ?? This could help. Dry eye is so complex and each one is differnet. I think hormnoes play a hugh role. What works for one person may not work for the next. You just have to find the right combination. Yes I can read, I have to use readers with my lenses and if I have my Wiley X's on inside like I my computer at work I have the stick on readers. yes the things we have to do LOL

[Ericska]

Sorry to read about your parents. My parents passed within a year of each other last year. I'm 47.

Have you ever heard of anyone going blind from dry eyes? I had three doctors tell me this who also admitted they never heard of my type of dry eye so I'm not sure how they could justify that response.