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Hi everyone, I'm a new member here so I'll introduce myself and my situation as briefly as I can.
I'm a 26 year old female from New Zealand. I developed severe dry eye during a course of Roaccutane (Isotrenoin) just before my 23rd birthday. The symptoms developed on an extremely low dose, and never disappeared despite discontinuing the medication immediately.
I experience chronic dryness throughout the day, right from waking when I have difficultly opening my eyes, and progressively getting worse throughout the day. Evenings are very difficult - I have to apply eye drops constantly just to keep my eyes open, and even then the pain, discomfort, and distorted vision is constant. I am unable to go outside without wraparound goggles (WileyX), although sometimes on a non-windy day I'll walk to the car or letterbox or something like that without them, but I still need to squint to protect my eyes, or shut the worse eye.
Over the past 3.5 years I have tried pretty much everything I can & doctors I have seen can think of, including:
fish oil supplements
warm compresses & lid massage
wraparound goggles
boiling water indoors to increase humidity
punctal occlusion
punctal cauterisation
punctal stitching
restasis
serum drops
IPL treatment
manual meibomian gland expression
So far nothing has really helped. For a time, punctual occlusion and cautery was temporarily helpful - I even experienced watery eyes for the first couple of weeks on a couple of occasions. But this always wore off within a month, and after about 6months of using various means to block the punctum it no longer had much effect. The specialist I see said there are bio-feedback mechanism which further reduce the production of tears when it appears that less are needed, and this seems to be what has happened. (I can't see why - its not like I produce enough tears anyway!)
The problem is a combination of meibomian gland dysfunction (MGD) and aqueous deficiency. It seems MGD is the main cause of the problem, but it is made worse by low tear production.
I do not have Sjogrens - I can produce tears, but not enough. Something I REALLY struggle with is going to my ophthalmologist, who regularly tells me that she can see tears, and therefore can't understand why I experience such severity of symptoms if I do produce some tears. (This despite having a report sent to her by another specialist who identifies MDG as the primary problem) The implication seems to be that it is partially in my head - some comments made over the last year certainly make me feel like she thinks I'm a bit of a hypochondriac, and it becomes hard not to start to internalise this and beat myself up over it, as I have never met anyone else with my problem.
Today is a good day (plus I have only been up for 4 hours and my eyes are still in their better stage of the day)- I can write all this out reasonably objectively and remain emotionally distant. But that's a good day - on bad days, the depression, isolation, and hopelessness are awful, life seems completely bleak and hopeless, and I have often found I just want to hide from all the people who don't understand, and no longer want to live.
This year has been the worst. Last year I was able to work when my eyes were good enough as a substitute teacher, especially in the first half of the year when punctal occlusion etc was most effective. This was extremely difficult still - I would sometimes lock myself in my classroom with my heat pack and lie on the floor behind the desk where noone could see me use it; I took to sneaking into the staff sick bay regularly when I didn't have a classroom just to shut my eyes and try and 'store' some moisture for another class; I constantly had to apply drops during class, which can be awkward in front of a roomful of teenagers; and I had to manage fans, air conditioning, heating, opening windows on hot days, and covering outdoor physical education lessons, all of which were really difficult.
In the end it became too much - I physically couldn't do it anymore, and the anxiety of trying when I really couldn't manage it was becoming terribly destructive. So now I'm unemployed - with a very understanding husband fortunately - but really struggling to find a sense of self-worth and dignity when I have no job. I dread meeting new people - invariably they ask what I do for a job, and then I either have to say I'm unemployed, in-between jobs, or say that I have health problems (they usually get awkward at that or look very unconvinced, as in their 'expert' opinion I don't look that unhealthy).
So in all, this year has been a huge struggle. I have had depression since I was a teenager, which in the past was well managed with medication, but now is much worse due to life circumstances plus having to reduce medication in order to reduce the dryness antidepressants cause.
I've always avoided forums in the past, finding them 'too depressing', but the isolation has become too much, and it is reassuring to know that I don't need to feel guilty or blame myself for my eyes - its not in my head, there are other people out there suffering with the same thing.
So thanks guys for listening! Sorry for the really long post!
p.s. Did I mention I'm PREGNANT!? Terrifying, exciting... Fortunately it came as a surprise, because I was too scared to try to get pregnant, knowing how much more difficult it will be to manage my eyes. I know some of you women have been wanting to hear from someone who is pregnant so I'm happy to keep you posted
I'm a 26 year old female from New Zealand. I developed severe dry eye during a course of Roaccutane (Isotrenoin) just before my 23rd birthday. The symptoms developed on an extremely low dose, and never disappeared despite discontinuing the medication immediately.
I experience chronic dryness throughout the day, right from waking when I have difficultly opening my eyes, and progressively getting worse throughout the day. Evenings are very difficult - I have to apply eye drops constantly just to keep my eyes open, and even then the pain, discomfort, and distorted vision is constant. I am unable to go outside without wraparound goggles (WileyX), although sometimes on a non-windy day I'll walk to the car or letterbox or something like that without them, but I still need to squint to protect my eyes, or shut the worse eye.
Over the past 3.5 years I have tried pretty much everything I can & doctors I have seen can think of, including:
fish oil supplements
warm compresses & lid massage
wraparound goggles
boiling water indoors to increase humidity
punctal occlusion
punctal cauterisation
punctal stitching
restasis
serum drops
IPL treatment
manual meibomian gland expression
So far nothing has really helped. For a time, punctual occlusion and cautery was temporarily helpful - I even experienced watery eyes for the first couple of weeks on a couple of occasions. But this always wore off within a month, and after about 6months of using various means to block the punctum it no longer had much effect. The specialist I see said there are bio-feedback mechanism which further reduce the production of tears when it appears that less are needed, and this seems to be what has happened. (I can't see why - its not like I produce enough tears anyway!)
The problem is a combination of meibomian gland dysfunction (MGD) and aqueous deficiency. It seems MGD is the main cause of the problem, but it is made worse by low tear production.
I do not have Sjogrens - I can produce tears, but not enough. Something I REALLY struggle with is going to my ophthalmologist, who regularly tells me that she can see tears, and therefore can't understand why I experience such severity of symptoms if I do produce some tears. (This despite having a report sent to her by another specialist who identifies MDG as the primary problem) The implication seems to be that it is partially in my head - some comments made over the last year certainly make me feel like she thinks I'm a bit of a hypochondriac, and it becomes hard not to start to internalise this and beat myself up over it, as I have never met anyone else with my problem.
Today is a good day (plus I have only been up for 4 hours and my eyes are still in their better stage of the day)- I can write all this out reasonably objectively and remain emotionally distant. But that's a good day - on bad days, the depression, isolation, and hopelessness are awful, life seems completely bleak and hopeless, and I have often found I just want to hide from all the people who don't understand, and no longer want to live.
This year has been the worst. Last year I was able to work when my eyes were good enough as a substitute teacher, especially in the first half of the year when punctal occlusion etc was most effective. This was extremely difficult still - I would sometimes lock myself in my classroom with my heat pack and lie on the floor behind the desk where noone could see me use it; I took to sneaking into the staff sick bay regularly when I didn't have a classroom just to shut my eyes and try and 'store' some moisture for another class; I constantly had to apply drops during class, which can be awkward in front of a roomful of teenagers; and I had to manage fans, air conditioning, heating, opening windows on hot days, and covering outdoor physical education lessons, all of which were really difficult.
In the end it became too much - I physically couldn't do it anymore, and the anxiety of trying when I really couldn't manage it was becoming terribly destructive. So now I'm unemployed - with a very understanding husband fortunately - but really struggling to find a sense of self-worth and dignity when I have no job. I dread meeting new people - invariably they ask what I do for a job, and then I either have to say I'm unemployed, in-between jobs, or say that I have health problems (they usually get awkward at that or look very unconvinced, as in their 'expert' opinion I don't look that unhealthy).
So in all, this year has been a huge struggle. I have had depression since I was a teenager, which in the past was well managed with medication, but now is much worse due to life circumstances plus having to reduce medication in order to reduce the dryness antidepressants cause.
I've always avoided forums in the past, finding them 'too depressing', but the isolation has become too much, and it is reassuring to know that I don't need to feel guilty or blame myself for my eyes - its not in my head, there are other people out there suffering with the same thing.
So thanks guys for listening! Sorry for the really long post!
p.s. Did I mention I'm PREGNANT!? Terrifying, exciting... Fortunately it came as a surprise, because I was too scared to try to get pregnant, knowing how much more difficult it will be to manage my eyes. I know some of you women have been wanting to hear from someone who is pregnant so I'm happy to keep you posted