Is dry eye your first major disease? How are you coping?

[hopeful_hiker]

Dry eye caught me completely off guard and turned my life upside down. I am slowly reclaiming bits and pieces but a lot of things are still not okay. I still don’t know why my major symptom is blinking pain whereas most people here complain of burning pain, for instance.

In any case, this is my first major disease. I had issues due to a benign tumour in my joint but it has not affected me nearly as much as the dry eye and the pain. I would label my life as ordinary before this. I had bouts of depression, anxiety, and OCD but never to a crippling extent (until dry eye, of course). I have tinnitus now, too, due to stress (prior to DES) but thankfully at my volume it is a nuisance (sometimes intense) not pain or debilitating noise.

Did you ever have to face anything like that before? Or have you dealt with other life crises before that maybe helped you prepare for the dry eye battle? Dry eye survivors and those in the dry eye journey, do you feel you are stronger now? Or has it scared you? How are you coping?

[ebi1368]

Dry eye and vision problems after lasik is my major disease. Getting up in the morning is the hardest thing to do. I just hope it gets better. I have to keep going for my family.

[Alix]

Dry eye caught me completely off guard and turned my life upside down. I am slowly reclaiming bits and pieces but a lot of things are still not okay. I still don’t know why my major symptom is blinking pain whereas most people here complain of burning pain, for instance.

In any case, this is my first major disease. I had issues due to a benign tumour in my joint but it has not affected me nearly as much as the dry eye and the pain. I would label my life as ordinary before this. I had bouts of depression, anxiety, and OCD but never to a crippling extent (until dry eye, of course). I have tinnitus now, too, due to stress (prior to DES) but thankfully at my volume it is a nuisance (sometimes intense) not pain or debilitating noise.

Did you ever have to face anything like that before? Or have you dealt with other life crises before that maybe helped you prepare for the dry eye battle? Dry eye survivors and those in the dry eye journey, do you feel you are stronger now? Or has it scared you? How are you coping?

Hello your first sentence says it all, this is my life right now. I woke up with bloodshot eyes one morning, which I thought would go away in a day or two, but here I am nearly one year later with my eyes looking exactly the same. And what started out as stinging/foreign body sensation has quickly progressed into non stop burning every waking hour.

The worst aspect of this illness is that there is no "cure" and the dismissive attitude of the doctors I have seen here in the UK is very distressing. So I often find myself on this forum looking for answers and hope.....I am finding great comfort in seeing others out there in a similar situation to mine, I am not alone.

Whilst I have faced a life changing crisis before, arguably alot worse than this, at least I can forget about it, whereas the burning sensation in my eyes is constant, therefore I am constantly conscious of my eyes. To think that a year ago I hadn't even heard of the terms MGD, evaporative dry eye, TBUT etc....

I was wondering though recently, there are people on this forum who wrote hundreds of posts in the past sharing experiences, giving advice, and then disappeared...,what happened to them? Why did they suddenly stop? Were they cured?

[hopeful_hiker]

Dry eye and vision problems after lasik is my major disease. Getting up in the morning is the hardest thing to do. I just hope it gets better. I have to keep going for my family.

Absolutely. I hope you are able to share your story with them so they can offer you some support. Obviously, it is hard to empathize when you don’t know what the other person feels like but at least people who care about me try to do that.

As for mornings, yes, I agree they are hard when things have been hard for a while. When I feel better I feel happy and scared in the morning because I don’t want the bad days to return. When they come back, as they do, mornings get difficult again but I try not to extrapolate that feeling into the future.

I hope you find a good medical team, too.

[ebi1368]

Absolutely. I hope you are able to share your story with them so they can offer you some support. Obviously, it is hard to empathize when you don’t know what the other person feels like but at least people who care about me try to do that.

As for mornings, yes, I agree they are hard when things have been hard for a while. When I feel better I feel happy and scared in the morning because I don’t want the bad days to return. When they come back, as they do, mornings get difficult again but I try not to extrapolate that feeling into the future.

I hope you find a good medical team, too.

Most of the people here finally find some solution for their problems. The chance is much higher for non lasik of course. So be hopeful for future as I try to do myself. I think I read somewhere that you write down your pain level etc every day. I think that is really good. Sometimes you forget your improvement as this is such slow progress.

[Guest]

I was extremely happy before FES. It’s my only serious problem. I’ve torn a meniscus and a rotator cuff, but those healed well no surgery. I’m finally starting to feel like myself again after a year. Good luck, sorry this happened to you as well.

[hopeful_hiker]

Whilst I have faced a life changing crisis before, arguably alot worse than this, at least I can forget about it, whereas the burning sensation in my eyes is constant, therefore I am constantly conscious of my eyes. To think that a year ago I hadn't even heard of the terms MGD, evaporative dry eye, TBUT etc....

I was wondering though recently, there are people on this forum who wrote hundreds of posts in the past sharing experiences, giving advice, and then disappeared...,what happened to them? Why did they suddenly stop? Were they cured?

Same! A year ago I was exploring a new city in windy cold winter conditions, going to heated places, and biking without goggles. I did not even think about my eyes or know that they could be dry.

I think a bunch of people got better, some found comfort tools (e.g. no recovery from LASIK but comfort from sclerals) or if their eyes are not perfect but okeish, they found mental peace and tools to make the eyes decent most of the time. I often read the last comments to see how people fared.

[hopeful_hiker]

The chance is much higher for non lasik of course.

I don't know... seems like people recover to some degree. Hard to quantify.

Dowork123 Glad to hear that. Did you disease start in November?

[Hokucat]

Dry eyes is also my first major disease. I never in my life thought I would have to deal with something like this, and for such a long time before finding some resolution (8+ years). I didn’t think until I was a senior citizen and well into those years would my health be so compromised.

So I had no prior health experiences to deal with this. However, I do think my work experience in management and consulting gave me the framework to approach getting better methodically and learn something from almost every doctor and treatment I tried, which eventually led to what helps me manage my condition, probing+diet changes+sclerals. But looking for resolution for 8+ years while in increasing debilitating pain was the most challenging and depressing period of my life, so physical and mental support from friends and loved ones was also key.

Overcoming this has definitely made me stronger, so other challenges I come across now are not as big of a deal. It’s also made me not take things for granted, like family, being outside enjoying nature, just living life. Material things are less important to me now, I’m just happy to be able to function daily without debilitating pain.

Having extremely severe dry eyes can be such a lonely disease, because often none of us personally knows anyone with the same degree of severity we have, so most people have no understanding what we’re going through. And trying to find the underlying cause, good dry eye specialists and appropriate treatments can be a difficult (and costly) process to undertake, given our condition. Thank goodness at least for all the invaluable help through this forum.

Alix, I do think many people who used to post often and give advice have figured out how to manage their condition or were cured, and now they are off on their daily lives again so don’t post anymore. This is a good sign of things to come for others still looking for resolution in this forum, however it would be nice to continue to hear from more of them! I am guilty of not being as active in the forum lately since my kids started school again, and being involved in their homework, sports and other activities, but I hope to better manage this so I can be more active again. I do not plan to leave...

[Guest]

I don't know... seems like people recover to some degree. Hard to quantify.

Dowork123 Glad to hear that. Did you disease start in November?

My problems started late October. I got that dust in my eyes, again, has happened many times before I thought nothing of it. Then a few days later, my vision became completely blurred and I had the most painful photophobia. But I had no clue what was going on. No pain unless I looked at light. Then, a week after that, the inflammation and pain started. Then it got worse and worse.

The last maybe two weeks, I feel like myself again. It’s not perfect of course, but it’s so damn close I don’t care. I feel so much better. The right eye is still sometimes noticeable, but barely. The left eye is pretty much perfect. Which is insane to me. I just had an erosion a few days ago in the left eye too. It healed in 3 days and didn’t really hurt. I made a mistake, it was my fault that erosion happened. Even with that, it still feels better than the right. But the rights not too far off. I never thought I’d feel close to normal again. I mean, just a month ago I was breaking down on here thinking I had corneal neuralgia. Just trying to make sense of all this. But no, it’s exactly what I was diagnosed with, floppy eyelid syndrome. I just couldn’t understand why the right was so much worse. My speculation was incorrect. But I’m glad, this is much easier to deal with.

Im on a good plan right now. I’m happy I finally found something that works. I’m thinking rationally again which I missed. I missed being able to just listen to a podcast or read a book without being distracted by my eyes. Or just think, without the background noise of pain/discomfort.

[epicjinx]

Dry eye caught me completely off guard and turned my life upside down. I am slowly reclaiming bits and pieces but a lot of things are still not okay. I still don’t know why my major symptom is blinking pain whereas most people here complain of burning pain, for instance.

In any case, this is my first major disease. I had issues due to a benign tumour in my joint but it has not affected me nearly as much as the dry eye and the pain. I would label my life as ordinary before this. I had bouts of depression, anxiety, and OCD but never to a crippling extent (until dry eye, of course). I have tinnitus now, too, due to stress (prior to DES) but thankfully at my volume it is a nuisance (sometimes intense) not pain or debilitating noise.

Did you ever have to face anything like that before? Or have you dealt with other life crises before that maybe helped you prepare for the dry eye battle? Dry eye survivors and those in the dry eye journey, do you feel you are stronger now? Or has it scared you? How are you coping?

i had depression on going since the age of 12, didnt relisease until i got a diagoises at 15, been on and off setraline ever since, with the help of councillors, OT, pyschologists... prior to a major event in my life which triggered depression, i also have anxiety but it's depression that is my issue. i then got this disease at 2014 december just as i had started doing a course in graphics- only a few months in. no one warned me about this disease, and i feel like its my fault, and i have to do my best to keep it under control, which i have done... i have no symptoms just burning when applying allergy drops, and redness. this has changed me, my views of my eyes i use to love them now i hate them, and fear my future but i keep pushing to find relief and hope it wont be like this forever. I'm glad, im not alone and i can talk to others going through it aswell... i just feel some regret it lack of blinking and now well, mgd hit.

[Shell259]

hopeful_hiker l find it interesting that quite a few people with dry eye also have tinnitus.
I have had tinnitus since I was 22 (in now 28). I believe that mine also came on due to stress.
I’m lucky in that my tinnitus doesn’t effect my life anymore, it did for a good 6 months to a year, now I only really think of it if I’m somewhere really loud.
I thought my tinnitus was the hardest thing I would hopefully deal with.. then dry eyes came into my life about 8 months ago. Hoping that one day my eyes will be the same level of problems for me as my ears.
I’m doing slightly better, it gets me really down due to the appearance of them now, my self confidence is non existent, obviously I’d rather be pain free with redness than the other way round, but the appearance side sucks as well!

Id be interested to see if there’s any studies in to those with both tinnitus and dry eye, it seems quite common.

[Guest]

hopeful_hiker l find it interesting that quite a few people with dry eye also have tinnitus.
I have had tinnitus since I was 22 (in now 28). I believe that mine also came on due to stress.
I’m lucky in that my tinnitus doesn’t effect my life anymore, it did for a good 6 months to a year, now I only really think of it if I’m somewhere really loud.
I thought my tinnitus was the hardest thing I would hopefully deal with.. then dry eyes came into my life about 8 months ago. Hoping that one day my eyes will be the same level of problems for me as my ears.
I’m doing slightly better, it gets me really down due to the appearance of them now, my self confidence is non existent, obviously I’d rather be pain free with redness than the other way round, but the appearance side sucks as well!

Id be interested to see if there’s any studies in to those with both tinnitus and dry eye, it seems quite common.

I’ve said the exact same thing before. I have tinnitus too. It seemed to peak during the stress of my dry eyes. Prior to that, I honestly rarely noticed it. Just like dry eye, had you told me about tinnitus, I wouldn’t have even known I had it, it was so mild. Now it’s much more noticeable. I’m curious if there’s a link also. I wonder if it’s just hardcore people that listen to loud music and stare at screens for hours. Have we all just been abusing our sensory organs (eyes/ears)? Or Is there an actual physical correlation?

[hopeful_hiker]

Dowork123 I never listened to loud music actually. Couple of times I went to concerts without earplugs by accident and heard ringing then. I can’t stand loud sounds, I don’t understand how people just go to concerts without protection and why it has to be so loud anyway. Serotonin is the only link I can think of between dry eye (study 1, study 2) and tinnitus (study). But this research is still in its infancy so you can see conflicting evidence. I also remember hearing a talk about tinnitus and how it linked to neuropathic pain. This could also be a link.

I have also had stretches of getting much better but they never last for longer then a week. I am still trying to figure out why they happened and why things went bad again. Maybe I can’t. Maybe it is something unrelated to medication/food/supplements.


Shell259 Would you say your tinnitus decreased in volume? I was freaking out about mine but then I got dry eyes and they took over my life.

[Alix]

@hopeful_hiker Same I often read their last comments too. I like to think of them as leading pain free happy lives now, and it gives me hope. I said that the most frustrating aspect of this is that there is no cure as such but what is equally frustrating is that there is no clear cause, at least for me, it is a mixture of many different factors, which I suppose makes it so hard to find a cure. The only time I had ever been in a hospital before this was when I broke my leg, which wasn't pleasant but at least the doctor knew what the cause was and the treatment was straightforward and over relatively quickly.

@Hokucat 8 years is a long time! I had no idea you had had this condition for so long, but it sounds like it is not stopping you from enjoying life which is great. I hardly went outside apart from going to work for the first 6 months of this year, due to a mixture of being in pain, feeling low, and being conscious of what people must think of me with my bloodshot eyes. But I realised I have to make the most of my life as it is now, I can't just wait until I am "cured".