Struggling to cope

[Shell259]

I’ve cried more today than I think I ever have, every time I think about how this has happened and what it means I just get so sad.
Dry eyes has been a bit of a problem for a while and I guess I have been using drops for about 6 months now, but things have only been bad for the past 3 months.

I had lipiflow done almost 4 weeks ago now and I think my eyes might be burning less.
I was told it was MGD and not aqueous related, but having done my on schrimer test I only reached 3mm. So now I’m scared it’s both as I was originally told it was due to blocked glands that should be able to be unblocked and I should feel better. I think I do feel a bit better but still not good.

I havent left my house much over the last couple of months. Sometimes I’ll start to feel a bit more positive and I’ll go out for a walk or to the shops, only for the air outside to play havoc with my eyes, then I’m left feeling really depressed because I don’t even seem to be able to leave my house.

My eyes don’t look too bad in the morning, but as it gets to later in the evening my eyes become bloodshot and I look as if I’ve been crying. This evening I had a brief period of feeling a little better, however when I looked in the mirror my eyes just looked so blood shot and sad that it made me cry all over again.

Im 28 years old and I just feel like I’ve ruined everything for myself. I don’t feel like I can go outside and enjoy things, I was meant to be going back to Asia shortly and now I don’t think that’s going to happen. I can’t go and do any of the things I enjoy and I can’t look in the mirror without crying.

I just dont know where I go from here, I feel so completely lost and lonely. I haven’t socalised for a few months and my boyfriend (who is long distance anyway) says he is really struggling to cope with how I am and doesn’t know what to do.

All of this has happened because I worked a horrible office job that I hated anyway. I was only there to try and save up money so I could go back and travel more.

I just don’t know what to do if I cant go out or look at myself in the mirror without feeling so sad.

I dont know where I go from here. I just feel so heartbroken and it doesn’t seem like there’s anyway out.

I know im not handling this well and people keep telling me others have it worse. Which I know is true but it doesn’t stop me feeling so low and knowing it was all so preventable just kills me.

My relationship with my mum is under strain as is my relationship with my boyfriend. But I don’t really know who else to reach out to.
Sorry for the sad rant. I’ve just never felt like this before and it all feels so permanent, I just want to feel like myself again, not in pain and self conscious about how I look.

I’m sure I’ll look back on this post one day and cringe. Somedays I feel more positive, today is not one of them.

[Hokucat]

Hey Shell. Given you’ve had LipiFlow 4 weeks ago and your eyes are burning less is a good sign. Some people don’t notice any difference after that treatment. You may need at least a few LipiFlow treatments, and if that alone does not help enough, possibly in combination with IPL or something else. LipiFlow did not work for me at all since I had scar tissue, so I finally had to have probing to unblock my glands, and change my diet to help my glands function better so it didn’t get blocked again. I feel the diet changes helped my lacrimal glands too. Btw, I also have both MGD and aqueous deficiency. I recently submitted my story online (my use of computers at work likely partially responsible for my MGD), in case there’s something here that may help you:

https://www.dryeyestories.com/new-bl...ous-deficiency

Sounds like you know having a job using the computer is what brought this on. Likely you already had the condition but it was not noticeable, and then blinking less or incomplete blinks from daily computer use really blocked up your glands. As someone mentioned in another post, blinking exercises are important to do, even if you’re not at that job anymore. If your eyes are really dry, put in a few drops of preservative free artificial tears before proceeding.

Resolving your underlying cause of MGD and aqueous deficiency is important, but you need some things to give you some relief now. Genteal Severe Dry Eye Gel was the only OTC drop/gel that helped me during my severe dry eye years, It gave me a moist, soothing feeling and was longer lasting. Also using this gel or your favorite drop in conjunction with moisture chambers can provide additional relief and protection from indoor and outdoor environmental factors, and while sleeping using night protection (I use EyeSeals 4.0).

https://dryeyeshop.com/collections/g...ts/genteal-gel

https://dryeyeshop.com/collections/d...ses-sunglasses

https://dryeyeshop.com/collections/nights

If you still need relief, there are also scleral lenses, used increasingly to manage dry eye symptoms. Even though I resolved my main issues, I still have dryness because I lost some glands, so I wear sclerals 12 hours a day, and it helps with daily comfort and functioning. Not everyone can tolerate them, but it’s worth going to a consult to try on the lenses and see. This website has a good description:

http://www.bostonsight.org/PROSE/PRO...y-Eye-Syndrome

The above are just a few options, so there’s still a lot to try, and different things work for different people. Someone in this forum did this very informative write-up that has many of the different treatments for Computer-Induced Dry Eyes (and more) that may help educate you on the different levels of treatments:

http://forum.dryeyezone.com/forum/dr...nduced-dry-eye

I hope this helps. Many of us in this forum have been through something similar to you and are here to help and support you, Shell.

[Shell259]

Thanks for the response, I know I probably did have dry eye before this, I have always found flying uncomfortable, but the office work definitely pushed me over the edge. I quit as soon as it became bad. I’d say it got everyday bad in April so I handed in my notice pretty sharpish, only worked two weeks of it, then I was out. But unfortunately I think it was still a little too late.

Im not having to put drops in all the time like I was. But I’m not sure if that’s down to the lipiflow or just not working at the moment. They still feel sore but they don’t feel like they’re on fire quite as much as they did!

I have my follow up appointment on Tuesday for the lipiflow to see if it has improved at all. I then have an appointment at the dry eye center in London Friday as I read they can prescribe drops and treat people with IPL. I’m willing to give both of those ago.
Ive also been told the lipiflow can take 4-8 weeks to kick in, so I guess I shouldn’t jump the gun and assume it hasn’t worked just yet.

I might try the lemon and green tea, how much lemon juice did you put in and how many times a day?

Im so sorry everyone’s having to deal with this, it’s so sad.

[Hokucat]

I think quitting your job after a few weeks noticing the computer use was affecting your eyes was a smart move. I don’t think it was too late. I kept working for a FEW YEARS after the onset of my dry eyes, and am almost positive that’s why blockage developed into scar tissue and I had to do the more invasive probing to unblock them. Wish I quit my job earlier.

Now I only drink the lemon/tea 1x daily for maintenance, but it was 2x daily initially and for the last few years. I squeeze 1/6 of a medium size lemon (usually an organic Meyer lemon) in strong green tea (I push the tea bag against the side of the cup ~100 times). The tea should be more green than brown, otherwise it has been over processed...I use the Kirkland Costco brand manufactured by Itoen in Japan. I usually add a slice of crush ginger too now, because of its anti/inflammatory properties. I drink it right after making it so the nutrients are not diminished from exposure to air. I’ve been adding ice to drink it cold lately, as we have had a heatwave going on here! Anyways, if anything, it’s easy to try and good for your overall health.

Hope your LipiFlow follow-up and London Dry Eye center appointments next week provide good info and next steps. Let us know how it goes.

[Shell259]

I’m hopeful, something might be able to help me as, it hasn’t been an issue for too long. I was shown from the lipiview that my glands are still there, just needing a bit of a shove to get going again. I am doing blinking exercises as he said this was a problem for me, I do think it has helped to make sure I am actively blinking.

The low level schrimer test is bothering me though, as I feel this may be harder to treat?
Once you had the probing done, did your aqueous levels also improve? I’m keen to maybe try restasis (or the English version, I can’t remember how to spell!) have you tried it?

I will try the green tea tonight, might have to pop to the shop for lemon though!

Thanks for replying, it’s been a rough couple of days! (months)

[Meibum Ian]

Glands being present is very good news. Lipiflow is just one treatment and there is much more that can be done.

Also good news that you have an identified problem with blinking, as this is in your power to improve.

What are you doing at home? Minumum should be:

lid hygiene (check out the threads here on natrasan but bear in mind it's not marketed for ocular use)

eyelid massage - This takes time to learn to do well, you should be able to feel release of oil when done right.

hot or cold compress

supplements - omega oils, lactoferrin + others

moisture chamber glasses. Yes they can look a bit odd, but you'll be able to go outside a lot more with them. In this current hot UK weather I can go to a park, sit somewhere not windy in them and feel the oils start to melt over my eyes.

London dry eye centre that you're going to will take good care of you (I've been), determine if there is aqueous deficiency, and can prescribe Ikervis (uk restasis equivalent) if deemed appropriate.

[Shell259]

I’m doing lid hygine with a tea tree foam from a brand called I love eyes as well as belphasol.

I have been on and off doing warm compress and massage but I don’t really feel much benefit from it, but maybe I’m not doing it right!

I’m currently taking Theatears (fish oil and flaxseed oil), sea buckthorn oil and then I have a whole range of other stuff I have bought from reading here, which I forget the names of, but I don’t want to take too many supplements at once.

I just feel so hopeless that I’ve got another 50 odd years of this. I don’t know that I can do that, if it doesn’t currently get any better. Serious hats off to those that have been dealing with this for so long. I got tinnitus at the age of 22 and thought that was the most irritating chronic illness I would have to deal with, but seems I was wrong. Chronic pain is just awful.

Sometimes it doesn’t seem so bad and then a wave of it just hits me and I end up becoming a complete panicked mess.
I just don’t know what to do if nothing helps.

[diydry]

I'm 31, getting a chronic illness diagnosis at our age is especially tough. We have so many goals ahead of us, career ambitions, plans to start a family or travel, trying to be independent. So the dry eye hits hard because it gets directly in the way of achieving all of these things, especially when it seems like all of our friends are having so much fun on Instagram or whatever.

Honestly, sometimes I feel like mental health is half the battle when it comes to dry eye. Have you seen a therapist? I would seriously consider getting a therapist especially if your boyfriend or parents can't be there as much as you'd like. I've seen one and it's helped, it doesn't have to be a regular thing. Have you tried meditation? I try to mediate at least twice a day, I find it helps calm me down most days and puts things in perspective. Part of meditation practice is recognizing impermanence, you realize your condition isn't permanent and your body and everything is constantly changing. Download an app called Insight Timer and search for meditations focused on healing. Finally, stop looking in the mirror if you can help it! I catch myself doing this a lot.

[farmgirl]

HI Shell, it seems Hokucat covered a lot of bases. What she didn't mention though is plugs, have you tried them? I have all 4 plugged and it helped a LOT.

What I do want to emphasize is that typically you will eventually improve as through trial and error you find what does or does not work for you. You may never be perfect but you will in all probability get to a place of comfort and most importantly acceptance so that you don't constantly need to suffer panic attacks on top of dry eye. Right now take it one day at a time and like diydry suggested stop looking in the mirror.....stay strong

[quattroboy]

I can only echo what's already been said.

I'm 45 and ended up with dry eye because of LASIK, so in my own head I've done this too myself, I didn't need to have LASIK.

I had a full emotional collapse in May, too a point where my wife took me to A&E early one Saturday morning because she was scared I was going to harm myself, or worse!

I'm a software engineer so I need to be able to sit in front of a screen for 8 hours a day. So worried about my career and the damage my career is doing to my dry eyes.

I'm seeing a counselor once a week and I'm on anti-depressants.

diydry is on to something with meditation, have a google for Wellness for Health. I hope to start this at some point.

I find the whole thing frustrating I been known to say "It's 2018 for god's sake and there's no cure for this".

So I tackle it the best way I can, seek out treatments, use my drops, just invested in a pair of moisture chamber glasses for work to see if they help. I look stupid but hey ho! Everyone at work is supportive.

If you have MGD and you still have your glands then there are things that you can do and you can get better (not cured maybe but better).

- Do your hot compresses several times a day without fail (more in the early stages).
- Do your lid massage.
- If you have Blep follow the lid hygiene (lid hygiene is good practice regardless)
- Investigate other treatments apart from Lippiflow, for example, IPL, expression, and probing. Remember one treatment might not be enough.
- Diet is essential for good oils (and your health and wellbeing).
- Exercise (I still run three times a week).

...I'm sure others can add to this list.

If you are aqueous deficiency there are options:

- Use your drops
- Plugs
- Cauterisation
- Ikervis
- Short term steroids if there are signs of inflammation.
- Again diet.

The NHS uses a stepped approach to treatment so you have to be seen to have tried less dramatic approaches to your condition before it will consider further options. I took a three-page list of what had happened to me, as a timeline, including the mental health side and all the drops, ointments and gels I'd tried and where using.

The consultant examined me and went straight for the Ikervis and Steriods. He said to me "Give me chance and 12 months I'm sure I can help you".

Going to talk to him about pilocarpine and an annemonic membrane next week.

Look after yourself and keep believing things will get better!

[Shell259]

Hi, thank you for your responses it means a lot.
I have my follow up lipiflow appointment today to see if that has helped my glands.
Then I have my appointment at the London dry eye center on Friday.
I’m keen to try plugs and ikervis. My eyes aren’t too bad in the mornings, so if plugs could help keep that same moisture in all day that would be great.
I was skeptical about plugs as people say they don’t help, but I think on the whole people have positive things to say.

I guess I’ll just have to wait and see what he says Friday.

im trying to not obsess with how it looks, but it’s hard. Again it’s always a lot better in the morning.

[Shell259]

Also quattroboy do you find seeing a counsellor helpful? I booked an appointment but cancelled, and what anti depressants are you taking? I’m thinking this could help me get over this first hump. Do you find they have any affect on your eyes?

[Shell259]

“I find the whole thing frustrating I been known to say "It's 2018 for god's sake and there's no cure for this”

This made me laugh as I’ve said the exact same thing. I used to say the same about my tinnitus, I remember them sending a space shuttle up and saying “they can send people in to space but they can’t stop my ears from ringing!?” Now I’m thinking the same thing but about my eyes!

[Shell259]

So I’ve just come back from my lipiflow follow up. My oil levels have improved but are still way below what they should be.
He did say when he presses on the glands oil is now coming out, where as before nothing was coming out at all, so that’s good.

I have my next follow up in 2 months and he said the level of oil should continue to improve, that it’s still looking a little yellow and should clear up.

He said I shouldn’t need to use drops such as ikervis, not yet anyway.. he thinks being younger and having my glands intact and now working again, this should be a last resort.

So now I’m a bit confused about what to do. Don’t know wether to go to my appointment in London and see what they say. Or stick it out and see if things continue to improve.

[quattroboy]

Also quattroboy do you find seeing a counsellor helpful? I booked an appointment but cancelled, and what anti depressants are you taking? I’m thinking this could help me get over this first hump. Do you find they have any affect on your eyes?

Yes I do.

Have a look at my reply to http://forum.dryeyezone.com/forum/ar...ti-depressants for the anti depressant I'm on.

If it was me I would attend the dry eye clinic in London, knowledge and information about what you are dealing with is essential. I've read their website and they really do all the checks including for demodex. They can also prescribe treatments if they feel it would benefit you.