Are there any options left?

[Emerald]

Hi,
I've been trying to help my daughter, now 24 with her dry eye issue for about 6 years. She is at the right weight for height and eats nutritiously and exercises regularly.

It seems that oil, water and mucous layers are affected, one doctor thought it was a nerve issue.

These are the treatments she has tried so far:

Every over the counter drop, now only preservative free
warm compresses
humidifier
moisture goggles
Not wearing contacts
Restasis
LipiFlow
UCSF Dry Eye clinic
UC Berkeley Dry Eye Clinic
countless ophthalmologists and optometrists
Fish Oil and other supplements
Currently gluten free and starting every day with undenatured protein drink
Chinese herbs and acupuncture
Ayuredic medicine
Punctal Plugs
Blood work for Sjogrens and other deficiencies (negative except low vitamin D)
Allergist (everything was negative)
Hydration
Yoga
Currently trying Mucomyst, so far no change
I'm probably leaving some things out -- none of these things have offered any relief.

Is there anything left besides the serum drops? One of the doctors she is currently seeing doesn't seem 100% in favor of those.

The only type of connection she can make with self analysis is that when she is fatigued, they are worse. She started wearing contacts at about age 15 and this developed at age 19 -- maybe the contacts caused it?

This has been an extremely frustrating experience.

Any suggestions are appreciated!
Thank you.

[Santaklauzz]

Do you know if her hormone levels are normal? Both androgen excess and deficiency can cause MGD.

[lizlou29]

Emerald, I am in a similar position to your daughter. Think I've tried all of the above give or take one or two plus I tried serum to no avail. This is an expensive condition to have huh?

I am wondering how they are testing for nerve sensitivity if at all? Are they saying lack of or heightened sensitivity?

I would second Santaklauzz on the hormone testing. My testosterone level was normal, currently trying to push for other tests.

Also, has she had her thyroid tested?

Well done for helping her make some improvement. I'm 30 now but had dry eye since I was 22 and the support of my family has been invaluable.

[Emerald]

Santaklauzz, A holistic doctor (also works with an MD), checked hormone levels and said they weren't normal, but she is/was on the birth control pill and her gynecologist said you cannot trust the results when you are taking birth control pills. The naturalist doctor said that she needed some progesterone cream, but she got scared to try when the MD said not to. Thyroid was normal, though. Sometimes I think it could be some type of adrenal fatigue..something caused this! The gynecologist said if the menstrual cycle is normal, then it isn't a problem with hormones, but who knows. She went off of birth control pills for six months of so to see if that would solve anything, but it didn't.

Lizlou29,
You aren't kidding! This condition is so expensive! Even though some of the medical things are partially covered, the LipiFlow cost about $2500 which was money thrown away, etc...she also tried the scleral lenses, but they couldn't get her to see normally with them (kept feeling like looking under water, and experimenting in doctor's office, they didn't feel at all better.)

I suppose I should know that answer about over or under sensitive, but I'm not sure! I do recall something about nerve abnormalities and wanting her to try Lyrica for nerve pain -- but, again, after looking at side effects, she decided not to do it. I think if the doctors try everything and nothing works, they start to believe it is a nerve issue..again, who knows?

Do you have any idea what caused yours? Do/did you wear contacts?

Expensive, frustrating and depressing all rolled into one.

[lizlou29]

I'm in pretty much the same position. My current ophthalmologist said if he had be my ophth before I had Lipiflow he would have said not to. He hasn't seen great results.

My menstrual cycle is normal too but yes something has caused this. I have mild facial rosacea but I have severe AD and they don't think it's the cause. Thinking is some type of hormonal or autoimmune problem that hasn't been picked up yet despite the multitude of blood tests.

I will be having examination with a confocal microscope at some point to examine the nerves.

I have bandage lenses in right now but never wore contacts before. I have good eye sight which I suppose is a blessing.

My ophth didn't want me to use Lyrica or Gabapentin but at some point I may try it.

[Emerald]

How are your Schirmer test results? Do you make tears and do they evaporate instantly? I also wonder how it can really be a nerve problem if one produces tears and then they evaporate almost instantly, and there is corneal staining, but you definitely have to check everything out to eliminate things.
Do the bandage lenses help, have you found anything else that helps? Severe AD -- haven't heard of that contributing to the problem, but there are so many unanswered questions.

Wish we would have learned more about LipiFlow before rushing to do it, suppose it was desperation at the time. All it pretty much does is massage eyelids. oh well.

So glad your family is there for you, that is so important, also to know you aren't alone, that always helps, too.

[lizlou29]

Schirmer's is 1 to 2 in both eyes and TBUT of about 3 secs. So not good!

I saw a different ophth before I saw my usual one as he hadn't arrived in clinic and he told me I just need to get in with life. If it hurts put goggles on and carry on. I'm sure you know it's not as simple as that. It's rare for younger people to get dry eyes for no reason and personally I'm in too much pain to function properly most of the time now.

The clinic where I had my Lipiflow said they have a 15% failure rate. I highly doubt that unless people with very mild MGD are paying ££££/$$$$ for it.

I think the bandage lenses are helping a little. They don't want me to try sclerals as my eyelids are so sensitive they think they'd be uncomfortable for me.

Nothing relieves the pain aside from going to sleep and annoyingly I can't do that all day. Warm compresses don't help me feel better and my MG's are still just as clogged as when I started doing them.

Countless docs have said it's just bad genes but of course I want to know the cause. No one on either side of my family has eye problems aside from my 100 year old grandmother who has cataracts now!

[MLE]

Hi Emerald,

I think I went through just about EVERYTHING trying to find some relief and finally got help with PROSE lenses. They don't help everyone but they help a lot of people. For me they were a godsend.

Something else to look into, once you have reached the "OK I'm stuck with this" point in the disease.

Best of luck. My mom's support through my disease was invaluable.
-MLE

[Emerald]

Bad genes! What an excuse. I never had heard of this problem until my daughter started suffering with it.
No one in my family or her father's had it and all grandparents are living and have no problems. ugghh! Cataracts at 100, that sounds pretty normal!
Guess in the UK, they don't have any other treatments or suggestions...

Also, she did try PROSE, but when she went for a fitting, everything was like looking under the water and it didn't feel any better with them in.
So glad they worked for you MLE, though.

The feedback helps a lot.

[LaDiva]

Hi Emerald,
For me, food is part of the picture. Last year I quit eating gluten, dairy and sugar. It was frustrating, because I thought I could not eat so many foods, but I recently started a Rosacea diet which is a super-low carb diet. I can eat many things that I couldn't because the carb count is kept down. I have tear deficiency, ocular Rosacea and meibomian gland dysfunction. Currently, the big problem is the oil quality. Do you know if your daughter has one, or more of the eye problems I mentioned? Treating this mess depends on the diagnosis. I am not well, but much better. Best of luck to you and your daughter.

[Emerald]

Can you believe that no one has given a definitive diagnosis??

It has been said that it is MGD, all three layers of tears are affected and possibly corneal neuropathy (which i don't really understand because would you have minimal tears and evaporation with that corneal nerve issue?)

By observation, and test results, appears to be tear deficiency which evaporate almost instantly which might be due to oil quality.

Glad you are doing better - so, food changes are what helped you?

[LaDiva]

Not just food. I've been like this for four years, and have had to do many different things for all of the different problems. I tried plugs, and they kept falling out, but then got a different eye doctor and he fitted me well (quadra-plugged), so now the tear deficiency isn't too bad. The diet helps keep inflammation down, and the inflammation affects the oil glands. I also take Minocycline, but am not sure how much that helps. I must do warm compresses and expression three times daily, or my oil glands become completely plugged. They are not completely open as it is, so any oil, all oil, is welcome. The quality of the oil isn't good, and I assume that is because of the Rosacea, but it could also be age and hormones. Also used Cliradex for Demodex mites, and that helped as well. Everything helped a little, and then a little more, and there is still room for imporvement.

I went out of town for my diagnosis. Maybe consider Dr. Neil J. Friedman in Palo Alto. He gave me a real diagnosis, and he is a super nice young man. Before going to him I was diagnosed with "dry eye" and "your oil glands are plugged". I think if you do a search, there are some others here who have seen him. I would still be seeing him, but live too far away. I had IPL, which he also does, but don't think it was very helpful. I think your daughter needs a diagnosis, and then work from there. Someone on this board said they also think it is the order in which things fall into place, and I think that seems right. Just not sure which order is right for whom.

[Emerald]

Yes, you are correct, she needs a real diagnosis. Been to so many doctors, and everyone has a different opinion, diagnosis and treatment plan.
It's like they don't even know what to do or where to start.
I have seen Dr. Friedman's website before and she has contemplated making an appointment with him, now after your recommendation, will follow through.
This is all so very complicated.

[LaDiva]

Best of luck to you both.

[littlemermaid]

Emerald, which antibiotics did she take back in 2010? and what dose? what were they prescribed for? how long has she had a dry mouth? Did she have any viral signs round the eyes or mouth like cold sores (that's a long shot). I should ask did she have an STI or genitourinary infection back in 2009 when dry eyes started, or any skin probs? Any conjunctivitis or red eye with the lenses? What were the difficulties with lenses? Is her eye surface less sensitive than normal (test with a few threads from a cotton ball). How long can she stare without blinking?