Hi, I'm Stefan ...

[IndigoRush]

Hope you're all okay. Though of course, you wouldn't be 100% if you were a member here, but it is Friday.

But cut to the chase, right?

So I'm another one of those who went on Accutane, though over here in England, it's called Roaccutane, and 3-4 years after finishing with that drug - My eyes are screwed. I'm only 19, and after reading the dry eye remedy book and seeing it confirmed in there (and on the forums here) clearly the drug caused terrible dry eye for me and a lot of people. It's truly frustrating to have not been properly told about this when signing to go on to the accutane drug. I was only 15 at the time, and it was a brief bullet point in the side effects listing. If I'd of known (!!) But what can I/we do? There doesn't seem a lot of hope from what I've seen on here, and that makes it all the more upsetting.

I have an appointment with an eye specialist at my City's Hospital though after researching on the internet, I'm not expecting much. I expect they'll say.. 'Have you tried eye drops?' (Of course I have you moron!)

The most that seems to be available over here is the punctual plugs, and they don't fix the problem for everyone.

I'm going on a bit here...

But my main problem is constant bloodshot eyes (can't look at people in the eye without seeing them notice my drug-atticted looking eyes) and of course the horrible feeling of dryness in the eyes, which don't do well when you work on a computer all day.

Someone shine me some hope!

-Stef

[IndigoRush]

Thanks for the reply.
Funnily, I'd just read this.

I hope I'm not diagnosed with Sjorens Syndrome (if I spelt it right) as I hear that you require medication continually for it? My mouth does get dry, which I hear is a sign

But I wouldn't be suprised if Accutane caused you to grow elephant feet.
I swear it's messed me up in so many ways.
That's a lot of different things to take though!

This eye problem is a real cost!

[Rebecca Petris]

Hi & welcome. Just wanted to mention... for encouragement it may be helpful to glance through the Dry Eye Triumphs forum. I was just looking at it and even though it hasn't been around all that long we have six pages full of thread titles already.

It's good to have moderate expectations of doctors... but you never know, you may get a gem. Or, (more likely) you may at least find someone is a decent listener with an open mind who will take enough interest to walk this path with you, even if they don't have all the answers. Most of us here have to educate our doctors at least to some extent about the treatments available. Having a teachable doc helps

[ringo]

no price is too high

Trust me, if you do not treat this condition properly, you will gradually reach to the following conclusion: that no money in the world is too much to improve it....the pain only gets worse and constant, and dramatically reduces quality of life, and I mean, everything you do, awake or even asleep.

[IndigoRush]

Thanks Rebecca.

And Ringo..
How does the condition affect you in your sleep?
With me, I find I don't seem normal. I can't even seem to be able top function my legs to walk properly. Feels like they're going to turn to Jelly and I'll drop to the floor.

Do you know what caused it for you?

[ringo]

Thanks for this question....yes I used to awaken from the pain in my eyes, and when i try to open them it is as if i am scrathcing them with razors..., it was a nightmare.

I could never sleep properly, as I was wrecked by anxiety and depression, and taking pills for the latter only worsened the dryness. It seemed like there was no hope, noone could understand what I was going through...

and of course sometimes it felt just like what you described, I couldn't even coordinate my movements, and I didn't care about anything except the pain in my eyes.

After a few months on my medications, things are so different...thank God...

[IndigoRush]

I'm really glad to hear things are better for you. Nobody without knowledge of dry eyes can understand how bad it can get.

I don't think I have Sjorens Syndrome though. I normally notice not walking properly when I'm out in public, where I feel self-conscious and feel more likely to trip up, and I don't have any of the joint pain that's meant to be a sign of the disease.

Just dry eye's and dry mouth, most likely caused by The accutane, when it dried everything up.
However I really appreciate you discussing this with me, and I'll let you know how I get on at the hospital and what they say + reccomend for me. I want to try the punctual plug-thingy majigs.

[Aaron77]

When walking I often notice the uneasy or dizzy feeling myself, docs are telling me that its not dry eye related but when my eyes are at their worst the dizziness seems to get a lot worse.

[ringo]

IndigoRush,
Aaron77,

thank you for your reply, I also do not think that the difficulty coordinating my movements and the feeling of dizziness and fatigue is related only to Sjogren's.

I agree with you that actually it is the sense of being self-conscious and the anxiety the chronic pain causes, in addition to the feeling of insecurity related to the way my eyes look.

Constant exposure to pain and related stress factors has been shown to affect the central and peripheral nervous system in a variety of unpleasant ways, ranging from depression to difficulty memorizing things, concentrating, coordintating movement, affected decision making, social skills, etc.

When the pain affects the eye for a long time, which is a major sensory organ of perception,
it can cause headaches and vertigo, and extreme tiredness, even nausea.

I sometimes get very sad that dry eye can be such an all pervasive problem, but there is hope... i used to be much worse than what i am now. I used to get desperate and hopeless and gloomy, and I thought that hope and faith is something for the incurably sentimental, far from realistic or not truly suffering people.

I could not even cry to relieve my sadness-- my eyes would pay a very high price for every tear shed. And of course, that puts even more strain on the nerves.

Now i know better- getting overworried or desperate when observing all the effects dry eye can have, only makes thigs worse. Besides increasing the adverse effects on the nervous system, it depletes the strength one needs to combat the condition with determination.

And fighting it with determination and patience is the only thing that works for the better...all else only makes it worse.