Need Advice on how to proceed.

[Guest]

Have recently started dealing with DED. Woke up a month and a half ago with awful stinging in my eyes and have been in unrelenting pain that's put my entire life on hold. Only recently did I see an Optometrist who would do all the testing I wanted.

What I've learned so far is that I have Blepharitis (this has since been under control). My meibomian glands are plugged, with only 5 glands on each eye producing oil. They are all still intact and haven't atrophied yet, but are curved and distorted from inflammation. My corneas and conjunctiva lit up like crazy according to my optometrist and that's likely what's causing me terrible pain.

I've been on Tobradex and just started Xiidra. My question is in how to proceed. My doctor offered up lipiflow to consider ($900). I don't want to live in pain or wait too long and lose my glands permanently. Can Xiidra, Tobradex and continued good lid hygiene and hot presses eventually open up my glands again? Or Will I need to cough up the money and try out lipiflow before things get irreversible? The pain is so constant and bad I'm afraid of losing my job. I've even been a bit suicidal, dealing with this pain for life is terrifying and crippling. Im really hurting right now and could use some advice.

[Guest]

Talk to your doctor whether IPL (intense pulse light) therapy OR testosterone eye drops?

[Drynyc]

lipiflow was a waste when i tried it. if your gland is plugged, you really need MGD probe to unclog it. you can actually hear it pop when they hit a clogged gland. that helped me the most.

for the depression, go see a psychiatrist they have meds that can help. you can DM directly for suggestions.

look at the success area in the forum, some good diet tips that actually helped me a lot.

[Guest]

OP here. I don't understand this forum. I can only write when I'm a guest and I can't DM.

Anyways, I've been looking for doctors who can do probing, but there doesn't seem to be a good way of finding ones that do. I'm in Wisconsin and would like to know if anyone else knows where I can find someone close who can do the probing procedure.

[lipino]

Here are the 2 most important things to understand:
1. There are a LOT of potential treatments for this disease. Usually it takes some combination of treatments that will work for you, and someone else might need a different combination of treatments. But there is a lot of money and research pouring into this and new treatments pop up every year.
2. Your primary care doctor knows nothing about this disease. Your optometrist knows very little. Even your ophthalmologist is likely not an expert on this (although ophthalmologists are a lot more informed now than they were 10 years ago.) You should seek out a dry eye specialist. When you go to their website you should see mention of dry eye and treatments they offer. Not just Lipiflow, which is a poor treatment. They should offer some combination of punctal plugs, gland expression, probing, serum drops, IPL...

As for Lipiflow, it's generally considered a poor treatment, and criminally expensive. Find an expert, do warm compresses. For me, punctal plugs made the biggest difference (my eyes are wet right now just because of these tiny 4 little plugs), and it's extremely low risk, but everyone is different. You'll have to try a few things and see what feels best.

[pythonidler]

Some thoughts:

1. I think the most important thing to know right now is that you will most likely get better. Try to keep that in mind as you continue your fight against dry eye. In the meantime, I would try seeing both a psychologist as well as a psychiatrist. Right now, your mental health is just as important as your physical health.
2. I echo everyone else's thoughts about Lipiflow. I've personally had Lipiflow done three times, and haven't found it to be very effective. I would definitely consider doing IPL (Intense Pulsed Light) before Lipiflow. IMO, there's only a couple downsides to IPL: First, the initial treatment is going to cost more than Lipiflow, since you're required to do four sessions in four months (each session costs anywhere from $250 to $500). Second, it's hard to find doctors who do IPL, so you're going to have to do your research. For that, see my post about IPL doctors (link in sig) for how to find one that does it.
3. By all means, you can continue to seek out second opinions for your dry eye. But realize that the number of truly excellent dry eye doctors is very low. By low, I mean you would be lucky to find just one in your area. So if you see several second opinions and still find yourself searching for a doctor, it might be best to settle for a doctor who is willing to work with you on a variety of treatments.
4. There are medications you can take to help with the pain. Some meds that I've taken in the past include nortriptyline, low dose naltrexone, and carbemazepine. As you look for second opinions, ask the doctor if they've had experience prescribing any of these medications. However, I would NOT let a doctor prescribe you these if they haven't prescribed them for prior patients.

Good luck in your fight against dry eye!

[Rebecca Petris]

Hi OP,

Sorry for the confusion! If you register for an account, it will be easier. Guest posts have to be approved by a moderator and it's not immediate (after hours, weekends, etc).

As regards finding doctors who do probing, if you don't get any leads here you might want to try on the Facebook groups.

A big picture tip for you:

There is a lot of fear out there these days about irreversible gland loss. I like to remind everybody that what they don't know is more than what they know about this, opinions are changing and science is evolving very rapidly. At the medical meetings they're talking more and more about glands that appeared lost that really aren't. It's helpful to take a step back and look at good long term care and not be in too much of a hurry for the expensive treatments. There are many ways to get your eyes more comfortable that don't have to involve aggressive medical treatment. FWIW.