Doctors don't understand how serious it is, what should I do?

[Yzhfd]

Often when I go to doctors they say my eyes don't look so bad. This results in me not getting the help or understanding I need.

I think my eyes don't look bad because I have to keep them closed big parts of the day to rest them, and when I do open them I have to use extremely many drops, I have to express meibomian glands or they get blocked, I can't really go outside, I can't use the computer like I used to.

I've got punctal plugs in all puncta(albeit not working very good), I've started using restasis, I use occulentum simplex oil at night because my eyes get damaged at night without lubrication. Of course I massage after hot compresses aswell. I also use moisture chamber glasses/goggles when I use my eyes. I can't work or anything.

So to sum it up, the only reason my eyes look not so bad at the moment is because I take so much care with them and don't use them.

If I'd tried to use my eyes like a normal person my eyes would be extremely bad, possibly even blind it feels like..

But all my doctors see is a bit low schirmer test and a bit low TBUT and eye looks a bit red but nothing serious. I've tried explaining but I'm not very good at it, and my doctors aren't very good at understanding how it could be worse than it looks.

They don't believe that my dry eyes have ruined my life at 20 years old but it certainly has. How can I make my doctors see that I need serum tears and working punctal plugs and other treatments ASAP? I can't stand living like this much longer.

[xpro]

Often when I go to doctors they say my eyes don't look so bad. This results in me not getting the help or understanding I need.

I think my eyes don't look bad because I have to keep them closed big parts of the day to rest them, and when I do open them I have to use extremely many drops, I have to express meibomian glands or they get blocked, I can't really go outside, I can't use the computer like I used to.

I've got punctal plugs in all puncta(albeit not working very good), I've started using restasis, I use occulentum simplex oil at night because my eyes get damaged at night without lubrication. Of course I massage after hot compresses aswell. I also use moisture chamber glasses/goggles when I use my eyes. I can't work or anything.

So to sum it up, the only reason my eyes look not so bad at the moment is because I take so much care with them and don't use them.

If I'd tried to use my eyes like a normal person my eyes would be extremely bad, possibly even blind it feels like..

But all my doctors see is a bit low schirmer test and a bit low TBUT and eye looks a bit red but nothing serious. I've tried explaining but I'm not very good at it, and my doctors aren't very good at understanding how it could be worse than it looks.

They don't believe that my dry eyes have ruined my life at 20 years old but it certainly has. How can I make my doctors see that I need serum tears and working punctal plugs and other treatments ASAP? I can't stand living like this much longer.

You need to see a dry eye ophthalmologist, and not a regular ophthalmologist. That makes all the difference.

[justbob]

Often when I go to doctors they say my eyes don't look so bad. This results in me not getting the help or understanding I need.

I think my eyes don't look bad because I have to keep them closed big parts of the day to rest them, and when I do open them I have to use extremely many drops, I have to express meibomian glands or they get blocked, I can't really go outside, I can't use the computer like I used to.

I've got punctal plugs in all puncta(albeit not working very good), I've started using restasis, I use occulentum simplex oil at night because my eyes get damaged at night without lubrication. Of course I massage after hot compresses aswell. I also use moisture chamber glasses/goggles when I use my eyes. I can't work or anything.

So to sum it up, the only reason my eyes look not so bad at the moment is because I take so much care with them and don't use them.

If I'd tried to use my eyes like a normal person my eyes would be extremely bad, possibly even blind it feels like..

But all my doctors see is a bit low schirmer test and a bit low TBUT and eye looks a bit red but nothing serious. I've tried explaining but I'm not very good at it, and my doctors aren't very good at understanding how it could be worse than it looks.

They don't believe that my dry eyes have ruined my life at 20 years old but it certainly has. How can I make my doctors see that I need serum tears and working punctal plugs and other treatments ASAP? I can't stand living like this much longer.

I feel the same way Yzhfd, I expect all of us do, it's a joke, can't even pay to be taken seriously. Did you hear about that surfer who broke his neck in 4 places, he's going to make a full recovery! Makes me wish I broke my neck instead of blew my nose too hard while having a virus, it's a crazy world, hope this situation changes soon.

You need to see a dry eye ophthalmologist, and not a regular ophthalmologist. That makes all the difference.

And where would we find this magic pixie? I've seen supposedly dry eye opths, but it's so difficult to tell if you have the right person and who to listen to, I thought I had right one then just had a really bad appointment.

[lizlou29]

Yzhfd I'm sorry you haven't had the best experiences. I think most of us can sympathise. The OSDI questionnaire may be useful to complete and take to your next appointment. I can't remember where it is on the forum but if you Google it it comes up. It will also be useful to complete again in the future when you hopefully have some improvement! Do you know the cause of your dry eyes?

[Yzhfd]

I don't know the cause and all doctors I've asked don't either it seems.

All I can think of would be because of extremely excessive computer usage WHILE staying up trying to change sleep schedule, perhaps contact lenses contributed aswell. I think I have an allergy to something too because everytime I visit my mother I have problems with eyes and nose/mouth and feel like puking sometimes.

[lizlou29]

I don't know the cause and all doctors I've asked don't either it seems.

All I can think of would be because of extremely excessive computer usage WHILE staying up trying to change sleep schedule, perhaps contact lenses contributed aswell. I think I have an allergy to something too because everytime I visit my mother I have problems with eyes and nose/mouth and feel like puking sometimes.

I you haven't already then allergy testing would obviously be a good idea. Also blood tests for autoimmune conditions and Vit A levels if you haven't had these. Be persistent. I'm not sure where you live but maybe you can get a recommendation from the forum for an Ophthalmologist that will actually listen to you and you want to stick with. I saw so many before finding one that didn't just throw more drops at me or tell me to just accept it.

[xpro]

I feel the same way Yzhfd, I expect all of us do, it's a joke, can't even pay to be taken seriously. Did you hear about that surfer who broke his neck in 4 places, he's going to make a full recovery! Makes me wish I broke my neck instead of blew my nose too hard while having a virus, it's a crazy world, hope this situation changes soon.


And where would we find this magic pixie? I've seen supposedly dry eye opths, but it's so difficult to tell if you have the right person and who to listen to, I thought I had right one then just had a really bad appointment.

Where do you live? USA? in USA there is Dr. ****** (but way too expensive) or another good one is Dr. Steven Safran in New Jersey.

[savino]

Often when I go to doctors they say my eyes don't look so bad. This results in me not getting the help or understanding I need.

I think my eyes don't look bad because I have to keep them closed big parts of the day to rest them, and when I do open them I have to use extremely many drops, I have to express meibomian glands or they get blocked, I can't really go outside, I can't use the computer like I used to.

I've got punctal plugs in all puncta(albeit not working very good), I've started using restasis, I use occulentum simplex oil at night because my eyes get damaged at night without lubrication. Of course I massage after hot compresses aswell. I also use moisture chamber glasses/goggles when I use my eyes. I can't work or anything.

So to sum it up, the only reason my eyes look not so bad at the moment is because I take so much care with them and don't use them.

If I'd tried to use my eyes like a normal person my eyes would be extremely bad, possibly even blind it feels like..

But all my doctors see is a bit low schirmer test and a bit low TBUT and eye looks a bit red but nothing serious. I've tried explaining but I'm not very good at it, and my doctors aren't very good at understanding how it could be worse than it looks.

They don't believe that my dry eyes have ruined my life at 20 years old but it certainly has. How can I make my doctors see that I need serum tears and working punctal plugs and other treatments ASAP? I can't stand living like this much longer.

.............

[Yzhfd]

Intresting, I will try not massaging. Whenever I don't push the oil out I notice it gets bad very fast, I think the glands get blocked, so i have to express them I feel, but I don't know if I could if pressing gently will be enough to unblock, will pressing gently really unclog the glands do you think?

I think I will try to press more gently anyway, I don't like pressing hard like i do now but I've felt that I've had to. I did read that it could be bad to express glands but also that some people have to.
'

[xpro]

Intresting, I will try not massaging. Whenever I don't push the oil out I notice it gets bad very fast, I think the glands get blocked, so i have to express them I feel, but I don't know if I could if pressing gently will be enough to unblock, will pressing gently really unclog the glands do you think?

I think I will try to press more gently anyway, I don't like pressing hard like i do now but I've felt that I've had to. I did read that it could be bad to express glands but also that some people have to.
'

Look into gland probing. I will unblock your glands.

[Bill Sonoma County]

There have been at least two prev threads discussing how to get health care providers to understand the severity of DED and take the issue seriously: one recently by Sunshine, an earlier one by me a few pages back. I won't bore everyone by re-posting the discussion, but maybe take a look at prev and then print and use DED Severity Index.

My attempts to attach the DED Severity Index document to this msg have failed twice, (hence the multiple edits) and the links from the two referenced prev threds are also not currently working.
So, in order to view the DED Severity Index, please try this link to a copy of the Index which is stored on a friend's OneDrive account. OneDrive is a feature of Microsoft Outlook.

https://onedrive.live.com/redir?resi...nt=file%2cxlsx

.

[Li11y]

I feel for you...I'm very new to this site I wrote my first post yesterday...I to have had no help from the many "professionals" I have seen so took the self help coarse...I'm sure you can navigate your way to read what I have discovered helps me "Coconut Oil as a cleanser" and I really hope you can find some comfort in my experience...Li11y

[justbob]

I'm not sure those severity questionnaires are effective, I don't score well on those but as of yesterday my TBUT is 1,3 (do I have to stop treating my eyes so they get worse to fill in the questionnaire?). Doc I saw yesterday said "it's only eyelids", I wanted to say something like "my brainstem is small, want to mess that up and imply that's not serious too?". He described my oil as "thick", clearly they need better tools to assess quality/quantity of oil because my TBUT is awful and I feel like I have glue in my eyes, it should be obvious that the correct consistency of oil is a very small window.

I think we need to talk more openly about how badly this effects people, in shortterm it may help to try not to think about how depressing it all is, but for things to change we need to people to notice as much as possible. In the uk screen usage is an average of 11 hours a day, to me it's crazy to suggest in this modern age that dry eye is not serious, I think "technology blindness (with pain, financial drain, social isolation, inability to take antidepressants, diet restrictions, and complete lack of respect from family/friends/doctors)" would be more apt, sounds a lot more serious like that. Apologies if this post is depressing, but I think it needs to be said.