Feeling hopeless and scared....

[lizlou29]

I only joined the Dry Eye Zone yesterday and hate to write such a negative post but I'm really not coping well and I'm losing the hope I had that things would get better.

I have rosacea, ocular rosacea and with it MGD and aqueous deficiency. I was coping fairly well with my condition until I started to have insomnia last year and have been on various sleeping pills and anti-depressants that had a negative effect on my eyes. I am currently taking Seroquel for sleep and it is having a definite drying effect on my eyes and skin but without it I can't sleep and this worsens my depression. I know not everyone experiences increased dryness from such medications so I guess I am just one of the unlucky ones.

I am 29 and me and my boyfriend were planning to buy a house together this year and start a family in the next couple of years but this seems absoloutely impossible to me now. If I'm not at work in pain all day I'm sat at home in pain all day just waiting for bedtime when at least with the help of medication I can escape the pain and fear for a few hours. In the morning I wake up in pain knowing i've got to somehow make it through another day.

My family have been so supportive but I know how upset they are that they can't do more to help. I have had less and less contact with my friends as I find it hard not to resent their carefree lives and have difficulty in responding politely when they say things like "you just need a holiday" or "lets have a night out to cheer you up" when going to my local shop to get food is an achievement. My boyfriend is amazing but I do feel that maybe it is best for him if we break up as I don't feel he'll have the life that he deserves whilst he is with me.

The receptionists at my local eye hospital probably recognise my voice now and I see a different opthamologist every time I go and a few days ago was told that I've tried everything and although it is frustrating I just have to get on with things. I have punctal plugs in the upper and lower tear ducts and my left eye waters continuously. They haven't helped but I'm scared to have them taken out in case the pain gets worse.

I am due to see a psychiatrist tomorrow for the first time but having spoken to him by phone he has no understanding of the pain I am in (why would he) and he said if my eyes are bothering me that much to use more eye drops (I'm sure we've all been told this at some point).

I have not made any plans to end my life, only because I couldn't do it to my family but they know it is in my thoughts. When I am in extreme pain I call up the eye clinic and they usually give me an appointment within a week but having been told that there is not much more they can do where am I meant to go from here?

[Faith1989]

Hi there,

Welcome to dryeyezone! I just read your post and can really relate. In 2007, I started university at 18 ..my first two years were great until I started dating a hockey player. I began to have anxious thoughts about him cheating and started to have insomnia.. I began taking strong anti depressants and sleeping pills. When I was at my worst, I began using visine to hide the red eyes from crying and from being so tired. This lasted about two years of sleeping pills and visine EVERY DAY! This took quite a toll on my eyes and health in general...

I was very concerned about my looks because of this standard he held about the looks of his girlfriend (silly I know) but at the time it was my biggest concern. The visine use increased and even once I started sleeping again, I still needed it as my eyes now relied on it.

Two years later I got back together with my high school bf and started to be less anxious. However I was told to stop the visine and my eyes went crazy and have been ever since. I can relate to the anxiety, insomnia and painful eyes. You are not alone.

Some things that help with sleep for me (it sounds crazy but it works) : the book "I can make you sleep" by Paul McKenna. It comes with an audio CD and I downloaded it onto my iPod and listen to it twice before bed. It has helped me relax a lot. The tea "mothers little helper" by David's tea. It has a lot of valaren root which is " natures valum" lol it does help. Not eating anything three hours before bed.

What have you used prescription wise to help with the eyes? I have pretty much tried everything too. I have MGD and probably allergies.

Just wanted to let u know I have been through it and am still going through it but not nearly as bad. It can get better. You can also read some dry eye triumphs on the forum which can give you hope as so many members on here have gotten better or "cured"

Hope this helped in some way.

[lizlou29]

Hi there,

Welcome to dryeyezone! I just read your post and can really relate. In 2007, I started university at 18 ..my first two years were great until I started dating a hockey player. I began to have anxious thoughts about him cheating and started to have insomnia.. I began taking strong anti depressants and sleeping pills. When I was at my worst, I began using visine to hide the red eyes from crying and from being so tired. This lasted about two years of sleeping pills and visine EVERY DAY! This took quite a toll on my eyes and health in general...

I was very concerned about my looks because of this standard he held about the looks of his girlfriend (silly I know) but at the time it was my biggest concern. The visine use increased and even once I started sleeping again, I still needed it as my eyes now relied on it.

Two years later I got back together with my high school bf and started to be less anxious. However I was told to stop the visine and my eyes went crazy and have been ever since. I can relate to the anxiety, insomnia and painful eyes. You are not alone.

Some things that help with sleep for me (it sounds crazy but it works) : the book "I can make you sleep" by Paul McKenna. It comes with an audio CD and I downloaded it onto my iPod and listen to it twice before bed. It has helped me relax a lot. The tea "mothers little helper" by David's tea. It has a lot of valaren root which is " natures valum" lol it does help. Not eating anything three hours before bed.

What have you used prescription wise to help with the eyes? I have pretty much tried everything too. I have MGD and probably allergies.

Just wanted to let u know I have been through it and am still going through it but not nearly as bad. It can get better. You can also read some dry eye triumphs on the forum which can give you hope as so many members on here have gotten better or "cured"

Hope this helped in some way.

My boyfriend has been supportive and I know he loves me but it is very difficult for him to understand that I can't go out at the moment and I'm often in tears.

I will talk to the psychiatrist tomorrow about coming off the seroquel but my insomnia has been so severe that I was going full nights without sleeping then a night with one or two hours and I really don't want to go back to that.

I've tried Optimmune (cyclosporine), doxycycline, steroid drops and none of these have helped. The appointments at my eye clinic are 10 minutes maximum and they don't ask for feedback on anything i've tried, last time the Opthamologist was actually reading someone else's notes so I've pretty much lost faith in them.

[Guest]

I only joined the Dry Eye Zone yesterday and hate to write such a negative post but I'm really not coping well and I'm losing the hope I had that things would get better.

I know you've heard this before, but trust me, things WILL get better... this is just a puzzle to be solved and you haven't figured out the solution yet, but you will if you keep trying...

I have rosacea, ocular rosacea and with it MGD and aqueous deficiency. I was coping fairly well with my condition until I started to have insomnia last year and have been on various sleeping pills and anti-depressants that had a negative effect on my eyes. I am currently taking Seroquel for sleep and it is having a definite drying effect on my eyes and skin but without it I can't sleep and this worsens my depression. I know not everyone experiences increased dryness from such medications so I guess I am just one of the unlucky ones.

Apologies if you've done this already, but give some serious thought to whether or not for YOU, the meds are doing more harm than good. ie. if they are helping a ton with the depression and sleep issues, maybe that's worth the trade off in worsening of your eyes. But if the worsening dry eyes from the meds makes you MORE depressed for example, then maybe the trade-off is not worth it and you ought to try tapering off the meds and looking into other options.

I am 29 and me and my boyfriend were planning to buy a house together this year and start a family in the next couple of years but this seems absoloutely impossible to me now.

Having kids is possible, even with super crappy eyes, so don't let your eyes stop you from doing that! BUT, do wait until you feel stronger mentally before starting a family if you can, since the lack of sleep with a newborn is tough!

I have had less and less contact with my friends as I find it hard not to resent their carefree lives and have difficulty in responding politely when they say things like "you just need a holiday" or "lets have a night out to cheer you up" when going to my local shop to get food is an achievement.

No doubt about it, when your eyes are like that it's freaking hard to stay connected to people. The ones who think you just need a holiday to fix your eyes clearly have no idea what they are talking about. Question is, is that because they don't care to TRY to understand, or because it hasn't been explained to them in a way that they can relate to? Try to figure that out, and keep the friends who are kind and try to understand, and cut loose the ones who bring you down. I also find that relationships go best if I try to NOT go on too much about my eyes - it exhausts people I think, and I can't blame them for it... even at my worst, although I'd sometimes confide in a close friend about how I was REALLY feeling, I'd try to force myself to just push all that out of my mind and enjoy talking about regular life stuff as it was better for my own state of mind to focus on normal things, and probably better for the friendship too.

My boyfriend is amazing but I do feel that maybe it is best for him if we break up as I don't feel he'll have the life that he deserves whilst he is with me.

I don't think we should ever end a relationship with someone else because we think we're not what they deserve. That is not our call to make and would be horribly unfair to them. Put yourself in their shoes - how would you feel if someone took the decision away from you and decided FOR you that the relationship should be over - I'd be really pissed off if someone ever did that to me, not to mention the hurt.

If you love him, and feel like he's the guy for you, and he loves you back, then don't you dare call it quits because of your eyes!!! Do your best to be the girl he deserves - someone who fights to cope with their crazy eye problems and live a happy life despite the pain. Be someone who doesn't quit, who keeps on trying, someone who does what she needs to do in order to make her eyes as tolerable as possible and then gets on with the business of living. You can do it. And just because you haven't found the right mix of things to do for your eyes NOW, doesn't mean the solution isn't out there somewhere.... you just need to keep looking.

I have punctal plugs in the upper and lower tear ducts and my left eye waters continuously. They haven't helped but I'm scared to have them taken out in case the pain gets worse.

Do your eyes feel better or worse with the plugs? Even if only a tiny bit better with plugs, I'd leave them in... every little bit adds up over time.

I am due to see a psychiatrist tomorrow for the first time but having spoken to him by phone he has no understanding of the pain I am in (why would he) and he said if my eyes are bothering me that much to use more eye drops (I'm sure we've all been told this at some point).

"Use more eyedrops" bahahahahaha... if only it were so easy! but you know what, see how he is at your appointment... maybe he'll understand better after you've chatted a bit... and if not, then on to the next one!

but having been told that there is not much more they can do where am I meant to go from here?

From here, you look for other possible causes, experiment with diet and lifestyle changes, read up on possibilities when your eyes allow you to etc.

Also, have you tried wearing moisture chamber glasses - they were a godsend to me, and although it was reeeeeally hard to adjust to wearing them (mentally), it was worth fighting to adjust since they improve my comfort beyond belief. I wear Wiley X's... check them out

[Guest]

The appointments at my eye clinic are 10 minutes maximum and they don't ask for feedback on anything i've tried, last time the Opthamologist was actually reading someone else's notes so I've pretty much lost faith in them.

You need to take control of your treatment as best you can then. Read the DEWS report, skip to the chapter on management of dry eyes.

http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

The most important thing you can do is to become an expert on treating dry eyes, possible causes, strategies for managing it etc. It isn't hard to do this, and even if you can't do it overnight due to your eyes limiting your reading time, it's worth it to become an expert, even it takes you months of reading about it in 5 minute stretches.

Once you've done that, map out a treatment strategy that you'd like to try. Then find a dr. who will be your partner in care, someone who will consider your opinion, someone who actually seems to CARE about helping you, someone who will write your rx's for you.

This is your life, the only one you get, so don't waste it - fight for it - don't let an uncaring medical establishment ruin you - there are good dr's out there, it just takes a bit of searching to find them sometimes.

[lizlou29]

You need to take control of your treatment as best you can then. Read the DEWS report, skip to the chapter on management of dry eyes.

http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

The most important thing you can do is to become an expert on treating dry eyes, possible causes, strategies for managing it etc. It isn't hard to do this, and even if you can't do it overnight due to your eyes limiting your reading time, it's worth it to become an expert, even it takes you months of reading about it in 5 minute stretches.

Once you've done that, map out a treatment strategy that you'd like to try. Then find a dr. who will be your partner in care, someone who will consider your opinion, someone who actually seems to CARE about helping you, someone who will write your rx's for you.

This is your life, the only one you get, so don't waste it - fight for it - don't let an uncaring medical establishment ruin you - there are good dr's out there, it just takes a bit of searching to find them sometimes.

I really appreciate you taking the time to respond. I've got to the point where I really feel like giving up and only my parents and boyfriend are keeping me going right now. I'm living temporarily (I hope) with my parents as I really wasn't looking after myself and they are obviously worried about my state of mind and they know how dark my thoughts have become.

I have today spoken to the secretary of a consultant at the eye clinic I go to and she was quite surprised that they'd let me leave my last appointment in such a state without other treatment options and said she will make sure I am seen for a thorough assessment in the next few days. I don't hold out a lot of hope but will try to keep an open mind and remember to write down the questions I have.

At the moment I'm just trying to come to terms with how much my condition has worsened over such a short space of time. I can't look at myself in the mirror right now and I cry (I have tears) about 10 times a day so it's taking care of my mental health first in order to have the motivation to take care of my eye condition and I feel that I need anti-depressants at this point in time. I will discuss options with the psychiatrist tomorrow. Sadly as I can't afford to see psychiatrist privately I need this one to be helpful as I will have another long wait on the NHS otherwise.

[Pinky]

Hi Liz and welcome!

Below is a link to a very interesting article on how to increase melatonin naturally to improve sleep. One suggestion is to use orange glasses at night to block out blue light emitted from computer screens, tvs etc. Blue light interferes with melatonin production. You can get the glasses at Amazon for under $10.00

http://foundationofhealthchiropracti...s-off-earlier/

[Katewest]

Hi Liz,

I am 30, MGD, and ocular rosacea. I can totally relate to the boyfriend thing. And the come home from work and cant wait to get into bed with my cool ice mask. BUT i think we need to push ourselves to keep our minds off our eyes. And we need to keep trying to find a solution. I have also tried almost everything. I have an appointment in May for Prose lenses at Boston and might see Dr. LAtkany while I am back east. IF you can, maybe go to Boston or NY?
Oh, and you are not doing hot packs right? My stupid doc said to keep doing them even tho i told him they made my eyes so much worse.

[lizlou29]

I thought i'd posted my reply but it doesn't seem to appear.

I saw a psychiatrist yesterday and as nice as he was he didn't understand the dry eye problem at all. He said I need to go and do things that I enjoy doing to lift my mood and told me my eyes didn't look bad so not to worry about that. I know it's difficult for people to understand this kind of pain but I left feeling a lot worse than when I went in there. He told me SSRI anti-depressants have no drying effect but for me at least I know this isn't the case. The medication I'm on for sleep is basically a strong antihistamine and has made my eyes and skin so much worse but if I don't take it I really can't sleep and I've been on every sleep med there is so there are no other options for me. If I don't sleep my depression worsens so it's a vicious circle.

I'm due an appointment with a corneal consultant but not for two weeks yet. I called the eye clinic today and was told I would be put through as an SOS case but this normally means the nurse calling me and telling me to do warm compresses (which I can't tolerate) and to use more eye drops. I have slight corneal erosions, a schirmer's of 0 and 1 before I had the upper plugs put in place (they didn't repeat the test) and a TBUT of 3 to 4 seconds yet at my last appointment I was left with no further advice other than to take flax seed oil and keep them clean.

I have absoloutely no motivation left and feel i'm just about surviving at the moment. It's a hard not to feel like a victim but insomnia, depression and constant pain is a pretty bad combination.

[Guest]

I cry (I have tears) about 10 times a day

This really stood out to me... assuming the state of your eyes caused you to become depressed (and no wonder... this can be sooo tough!), and now you're depressed so you cry 10 times a day (that's a LOT of crying!), and all that crying will only further inflame your eyes and make them even WORSE, then you'll feel more depressed, cry more, eyes will be worse, you'll be more depressed... and on it goes... a vicious circle (ok, I know it's not quite that simple, but you get the idea)

Point of all that is if you can, please try to figure out a way to choke down the crying and turn it off - your eyes will do better if you can stop it - maybe distracting yourself will work, maybe just telling yourself to stop it will help, maybe some other strategy... but if I were you, I'd do everything I could to just NOT CRY. Crying is brutal for eyes that are already irritated. It's totally understandable of course, and I've been there done that, but stopping the crying helped a LOT in making my eyes start to feel better and eyes like ours need all the help they can get! (((((hugs!!!))))

Look at the no crying rule as a baby step towards helping your eyes get better, which will in turn, help you fight the depression, right?

[littlemermaid]

Lizlou, We've been talking PM about docs, but do you want to list what has made your eyes better/worse over the years? People like SAAG have amazing useful experience on daily life with maintaining the eyes.

[lizlou29]

Lizlou, We've been talking PM about docs, but do you want to list what has made your eyes better/worse over the years? People like SAAG have amazing useful experience on daily life with maintaining the eyes.

To be honest the only improvement in comfort I've ever had was from having lower punctal plugs inserted, I was even able to have them out for a year a couple of years ago when I had a good stretch where my eyes were almost normal.

Tetracycline 5 years ago with no difference in comfort or TBUT.
Flaxseed daily with no noticeable difference.
Now on Doxycycline for 5 weeks with no change.
Use Celluvisc but no drops make my eyes more comfortable but use them to prevent damage.
FML steroid drops - no noticeable difference. Was told I might as well try them as I had inflammation. I asked for drops without preservatives but was told these are the best ones.

I had the lower punctal plugs inserted 6 weeks ago, they haven't helped in terms of comfort. I was hesitant as I have heard that having 4 plugs can keep the inflammatory cells on the eye surface, I asked the ophthalmologist and she turned away so I asked again and she said they are for dryness so no real help there. Any thoughts on this?

Stuck at home again today as face flushing and eyes burning/stinging

[littlemermaid]

Lizlou, On the rosacea forums, they are saying their eyes are normalising when they identify what causes skin flares. We are 'lucky' in that the skin flares are pretty obvious although the eyes suffer badly in environments - smokey, a/c, peeling onions. Whereas it takes years for some people to work out by elimination they have eg eyedrop or nickel sensitivity.

LM seemed to get a decent tear film held on the surface with lower plugs and less deterioration, but we got tear duct infection off the p&p skin. The ophth is now thinking there are too many inflammatory mediators hanging around in the tear film anyway. It's an experience and judgement thing. This is why I like an open-minded ophthalmologist to work with because I don't think there are any absolutes and everyone has different factors. An eye doc is not going to know whether we are sensitive to our pillows or cats, for example, and can only speculate.

Any thoughts what might have set your eyes and face off this time? LM just got back from camp and her face looks great. Now I'm thinking she must sensitive to chemicals in the b* Thames water. Terrific.

Have you tried eliminating for possible triggers? Quite a task.

Have you got wraparounds for protection? LM has spotted some gorgeous prescription D&G sunglasses in D&A/Boots, if I could be sure she wouldn't sit on them by accident.

[Guest]

Also, I don't think I've mentioned it in this thread yet, but I highly recommend you check out the book "Rosacea 101" by Brady Barrows. They sell it on Amazon.

I don't take every word he says as gospel, but I found the dietary recommendations enormously helpful for figuring out my dietary triggers - even if you already think you know what they are, it can't hurt to revisit this in case anything has changed and there are new ones that you weren't previously aware of. If you can fix THAT, there's the potential to do wonders for your eyes, and that ought to help you feel stronger mentally also!

[littlemermaid]

Good plan, SAAG. Here's a rosacea forum aggregator http://rosaceagroup.org/new/ in case it's ever useful on triggers although hours on the computer isn't a good idea.