Really loosing it!!! Has any of you been diagnosed with severe oil deficiency?

[Ariel]

I have a constant itching and burning feeling I seem to not be able to scape from. Apparently it is caused by lack of oil in the tear film. I'm trying everything and nothing seems to be working.

There's no IPL in Europe or anywhere outside the US and in Spain I can't even find a doctor who will express my glands. I may fly to Japan but there's the language barrier there so it won't be a fun trip.

I have been told the pain may also be caused by an insufficient production of androgen. I've try dozens of artificial tears and nothing seems to help.

I'd like to know it any of you has experienced the same thing. I have fire in my eyes right now. It's just unbearable!!!

[Guest]

Sounds a lot like I felt last summer.

I finally had to just give in to it...

Started wearing moisture chambers 24/7
-stopped wearing makeup (sob!)... although fortunately for you, being a guy, presumably this is a non-issue for you!
-heat and gland expression twice per day
-concentrated on blinking all day long... hard to do, but made a big difference... no matter what I was doing, in the back of my mind, I always had to try to keep up the mantra "blink blink blink etc... I estimated that to keep the burning at bay, I had to blink MORE than once per second!
-spent 30-60 minutes every morning with a cold compress on my eyes while listening to an audiobook (I buy them from audible.com... also, my local library has an on-line area that I can download them from for free... maybe yours has something similar too?)
-in total, I was spending about 4-6 of my waking hours every day with my eyes shut... much of that with a cold compress on them...
-started oral tetracycline 250mg twice daily
-I stopped reading completely... maybe allowed myself a few minutes to scan the newspaper headlines, but that was it
-computer time was limited to 15 minutes per day MAX
-stopped watching TV (just listened to it with my eyes closed)
-you can also see my dryeyezone blog for other treatments I've used over the past year
-also, I was fortunate that this happened when I was on maternity leave... I couldn't have worked in the condition my eyes were in!

It was extreme, but it was the only way I could get through the day without that constant burning.

The good news is that odds are, with time, things will get better.

This summer, I am watching as much TV as I want. I can read the newspaper. I spend several hours each day on the computer. I no longer have to keep my eyes shut during any of my waking hours. And I am able to work as much as I want/need to.

*Note* re: computer time... the only reason I can spend as much time on the computer as I do is because i use Workrave. It's a free program that you can set to interrupt you to take breaks. I have mine set to interrupt me every 15 seconds for a 3 second break. It's a nuisance to have to stop what I'm doing so often, but as long as I don't ignore the break time, my eyes are no worse for wear after I'm off the computer. (Last summer, even with these breaks, I could only handle 15 minutes per day of computer time... so I've improved a LOT)

http://www.workrave.org/

Hang in there!

[Pinky]

Hi Ariel,

I have posted about this before - the hormonal supplement DHEA is used to increase oil production. It is used by some in the rosacea community to treat accutane induced MGD.

Side effects can be increased acne, so you have to experiment with the dosage to find what works for you.

Pinky

[Michael2]

im sorry. i remember, its crazy how quickly i went from having perfectly normal eyes to burning so severely that my eyeball might as well have been on fire. for me it progressed over 2 days until i was stuck in total life changing hell

three weeks of azasite really eased up the burning, and the IPL sessions ahve not been a magical cure but at this point im just kinda uncomfortable and feel closer to normal when using Dwelle as well. when i first came on here it seemed like no one got better, but with some time you should improve. there are treatments out there that are more than cover ups (sclerals) such as azasite, IPL, special drops like dwelle or freshkote, and many new treatments on the horizon.
id recommend if you can, to see some sort of pain specialist. all my eye docs told me not to see one, not sure why...once i was put on some meds to get rid of the discomfort, it gave me a whole lot more hope. hope you start to feel better soon

[spmcc]

Re: horrible flares

In my 15 years of dry eye, the only thing that has really helped me when my eyes get intolerable is steroid drops (pred forte is the strongest, lotemax is weaker, and alrex weakest).

I know steroid drops can have dangerous side effects. But if you are closely monitored by your doctor, these drops may help you too get over this terrible flare up.

Good luck.

[RobLIC]

Chiming in here on a few points:

1. If you do go down the steroid route, another one you might ask your doctor about trying off label is Durezol. Very strong, so you've gotta be careful. But helps me out on the super-bad days, i.e. break glass in case of emergency.

2. SAAG's totally on point about the blinking exercises. My great doc in Boston even gave me a handout I keep in my wallet with the method he wants me to use, repeating five times once an hour (ideally):
Close-Pause-Pause-Open-Relax
Close-Pause-Pause-Squeeze-Open-Relax

I try to remember to do it when I am in places I go every day - the subway, the dog walk, the elevator. If you associate it, it becomes easier to remember.

3. Michael's right. The sclerals are just a cover up. But a darn nifty one.

Rob

[Ariel]

I want to thank all of you for your support and the very useful input. I have a lot to learn about different strategies that can be used, some of which you've already mentioned. Being alone with this terrible condition is one of the problems so I thank you all from the bottom of my heart. I've posted a threat a moment ago about IPL because it is something else I'd like to explore although I have some doubts about it.

Please let me know if you have any more suggestions.

Big hug to all of you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[dryasadesert]

test for allergies....itching is a red flag.

allergies could be inflaming the mg's and causing them to shut or not work thus causing the oil deficiency.

if you are going to try an OTC allergy med, give it a few weeks to see if it works....get allergy tests for sure--not just seasonal allergy tests which is what most people get, get the works.

[manitobaskyline]

Be sure you are doing eye lid scrubs. Anytime I see folks talking about burning, it makes me think about my experience. I had so much burning and all of it was from the gunk on my eye lashes. To this day, after over 10 years, I still have to scrub my lids 4 times a day with baby shampoo. You eye lashes should feel as clean as the hair on your head after washing them.

[Kezza]

Increasing androgen levels

I have had marked improvement of my dry eyes since starting on 5mg daily of DHEA. My skin and scalp also become oilier, but not to the point of breaking out. So I'm pretty sure the tear film is oilier too.

You can also boost your androgen levels by eating more high GI foods. They are known to boost insulin levels and that leads to higher androgen levels.

The connection is explained in this article:
http://www.absoluteacneinfo.com/diet/glycemic.html

It's worth a try anyway - gives you an excuse to eat white bread over wholemeal!