MGD or corneal neuralgia, or both?

[bcornel]

Hi everyone,

I’ve been reading this site for about 10 months and it’s been a great help. I’d be totally lost without it. I have a lot of diagnostic information on my condition at this point, but I’m still confused, so I’m hoping someone has some insight.

I’m a 25 year old male and my symptoms started a little over a year ago, a week into a data entry job. Burning, stinging, achy and sore eyes, and when I do any activity involving staring I develop a pressure/ache in my brow/sinus area that turns into a burn as well. I almost always wake up with a heachache now. I had never had any eye problems before this – had never noticed my eyes before really.

A month before the symptoms started I accidentally burned poison oak in a campfire. I had a bad allergic reaction – skin red and swollen and a fiery itch from the neck up, and other places, but especially around the eyes and eyelids. Three weeks of prednisone cleared it up and I didn’t have any eye problems until a month later. But I feel like there must be a connection.

Treatments I’ve tried and stopped:
Artificial tears
Doxycycline
Oral Azithromycin (5 day course)
Azasite
Topical Steroids
Lipiflow

Treatments I’m currently using:
Fish Oil
Lid hygiene/warm compress (1-2 times/day)
Minocycline (50 mg)
Restasis
Lower punctal plugs
NAC supplement (600 mg)

Every artificial tear I’ve used has eventually made my eyes worse. I’ve tried topical steroids 5 times, but each time my eyes gradually got more irritated for a week before stopping. I get a lot of temporary relief from a good warm compress (rice in a sock works best for me). Moisture chambers are somewhat helpful. Computer use, reading, and walking without glasses in windy conditions are the worst for me.

I’ve seen 7 ophthalmologists and all have basically agreed I have mild-moderate MGD. I don’t think I have aqueous deficiency. Even with multiple anesthetic drops I always feel the schirmer’s strips and flood them so they are soaked through.

After reading good experiences by a couple forum members, I went to see Dr. Gagnon in the bay area in November. He diagnosed me with moderate MGD, said my glands were open but blocked, but also that my TBUT was normal. He suggested Azasite for a month and if that didn’t work Lipiflow.

I ended up doing both and recently had the Lipiflow follow-up. My TBUTs ranged from 8 to 24s and my most of my glands were expressing good quantities of clear oil. My doctor said this was a moderate improvement over my initial results. But the result that is irking me is the lipid layer thickness – I had 44 and 36 nm. They were also in the low 40’s before the treatment. The lipiview showed no partial blinks. I should also mention that I had ~30% atrophy with a couple nasal glands dropped out in the lower lids, but the upper lids had no atrophy/drop out.

How can someone have so little lipid on the eye when the glands are producing good oil, TBUT is normal, and there are no partial blinks? It didn’t add up to the doctor either. However, she diagnosed that I have mild evaporative dry eye at this point, and that it does not explain my severity of symptoms. She thinks I might have corneal neuralgia.

My understanding is that <50nm LLT is considered severe. Should I be worried about this metric, if all the others (TBUT, expressibility) are well controlled? Does LLT really matter in isolation? I’m getting fitted for sclerals with the same doctor in a couple weeks, and working with a chronic pain specialist on systemic pain meds for the neuralgia (neurontin, nortriptyline, and now topamax). But I don’t want to stop pursuing MGD treatments if that’s actually the cause of my pain! For instance, I haven’t tried IPL yet.

I think my symptoms have improved about 20% from all the treatments I've tried - not enough to be functional or comfortable.

Any thoughts? I really appreciate anyone that takes the time to read this!

Cheers,
Ben

[Betsy]

Hi again bcornel. We are the same with the low lipid, I got 50 in one eye but that was with using drops before the test. So now I will be redoing the lipiview. But I have a very low tbut compared to yours at 1-3 seconds. So a low lipid layer can apparently result in normal or super low tbut. It's all so confusing. I am glad both your upper and lower lids were checked, only my lowers were checked, I was told that they are almost always the same but i want them both checked. I also don't have partial blinks. You have some excellent questions and I hope someone here has some answers or some doctor out there does. Someone has got to know.

I wonder if the guy at Stanford that stopped doing IPL can tell you honestly if he thinks it will help you? Because now that he stopped doing it, there is no incentive to tell you you need it. Not that he would, I am just saying that he knows about it since he use to do it, but now has stopped so he may be the person to get an honest answer from? What do you think?

Those are the standard nerve meds that you mentioned. I want to try LDN again because they don't have the side effects the mainstream ones do. I did a goggle test recently and it appears that humidity isn't enough to make me comfortable. It's so confusing when we have multiple things going on.

I am so sorry you are dealing with this at such a young age. That's about when I too developed the symptoms.

[bcornel]

Hey Betsy thanks for your response! The low lipid layer thing is strange. Through some google searching I did find a page in a medical textbook that mentioned people without dry eye symptoms can have very thin lipid layers. So there is more going on there than just thickness.

Seeing Dr Friedman about IPL is an interesting idea. He might have some other ideas as well. I wonder why he stopped doing the procedure... Was it not working on his patients? I ended up scheduling another appointment with Dr Gagnon, just before my scleral fitting, to see if he thinks my MGD has really improved. If he says yes I'll really go in the neuralgia direction. When I asked him about IPL at the first visit, he said he does not think it works. I'm confident that at least the q-tip gland expression aspect of it works, since that's basically what Lipiflow does.

Do you feel LDN helped you the last time? You were taking it for Sjogrens?

How long did you wear the goggles for? Do you normally wear moisture chambers?

[lili28]

Hi bcornel! How are you doing? did the doctor diagnosed neuralgia?