Should I feel this bad? Or is it mostly neuropathy?

[Guest]

Since September 2017 when my symptoms reached rock bottom (I went from normal eyes to a tbut of zero in 2 months) my eyes have felt terrible and I haven't been able to work. At first they burnt a lot but now I have a constant and horrendous pressure sensation that my tear film is inadequate, and when I bash my eyes together to get more water, nothing comes. I have MGD and aqueous deficiency.

I have no sharp stabbing pains and they only burn when I go air conditioned places, but I'm always aware that the tear film isn't right. I get relief when I cry or after adding drops but only for 5 mins.

I wanted to know if its normal for eyes to feel constantly terrible with such a low tbut - mine currently varies from 2-4? Several times I've been told I have probably have neuropathy but my eyes must have gone from a tbut of around 12 to 2, so I don't know how much my eyes are the problem and how much is neuropathy.

My last doctor said to give up on trying new treatments for the eyes and go for pain management, but I don't see how I can do a job with a tbut of 2, even if my eyes did feel better. I use a wheelchair so need a sitting down job and that basically means a computer.

I'm 27 and this all seems so hopeless.

[Rebecca Petris]

Very sorry to hear what you're going through.

A TBUT of 2 is very low and in conjunction with low tear volume, certainly can explain an awful lot of pain - bearing in mind that there is a wide range of symptoms and symptom severity that never seem to exactly match the clinical assessments of these things. Neuropathy might or might not come into it, you can't know unless you get that diagnosed properly but I'm wondering what all you're doing specifically to keep your eyes comfortable? (And, honestly, unless your cornea is showing a lot of damage, comfort is generally the driving factor with work.)

Are you plugged or cauterized? what mgd treatments are you on? Moisture chamber glasses full time? if you feel you've maxed out available treatments, have you looked into sclerals?

[Guest]

My latest report said - moderate degree of Fluorescein staining indicating some mild to moderate damage of the epithelium on the surface of the conjunctiva and cornea. I have lower plugs, and wear moisture chamber glasses full time. I also do hot compresses and use Ikervis and PRP drops. The glasses work the best, I'd go mad without them.

Do you know if a confocal microscopy can reliably diagnose damage to the nerves? I had lasik in 2013 with no problems after but am worried this might have done some damage that only showed up when my MGD started.

I haven't looked into sclerals. Being in the UK I have no idea where to start with them, though will look on the forum to see where UK people go.

[Rebecca Petris]

Confocal's pretty good... had a look through that at BostonSight in the early days when hardly anybody had those. - Ken Pullum (Hertford Optometry?) would be a good first enquiry for sclerals, he's worked with them forever. Other good places to find out more would be joining the Keratoconus group on Facebook (it's huge and a lot of them wear sclerals, bound to be many in the UK) and might also be scleral lens users with sourcing tips on my fb group MyBigFatScleralLens.

Maybe flow controller upper plugs? or some dissolvables? just to see if you can eke out a bit more comfort?

[farmgirl]

Lower plugs alone were not enough for me but the uppers made a huge difference when I did all 4. The uppers are now cauterized, lower still plugged.

Have you tried IPL or probing or lipiflow or a combination thereof. Pythonidler says that he/she got the most improvement from IPL only after probing. Have you had a lot of MBG dropout that you are aware of?

[Guest]

I'm getting a lipiflow assessment on tuesday next week, and tried IPL which hasn't helped after three sessions. I'll ask about more plugs too.

The strange thing is that I only have some slight shortening of my glands, and the oil is a little thick but not anywhere near as bad as some. I just have no idea why my tear film is so bad, especially when my Schirmer's test is 30. My eye isn't very sensitive, maybe due to the lasik, but was fine for four years until this disaster - all started from using the computer too much.

[Rebecca Petris]

Schirmer of 30? yet they're saying you're aqueous deficient? Hmmmm. Was that Schirmer without anaesthetic?

When you say IPL hasn't helped, do you mean symptomatically, or also not showing any positive change in the glands during exam?

[pythonidler]

Just curious - what treatments have you tried? Just because one doctor has exhausted his/her supply of treatments doesn't mean you've tried everything.

[Guest]

I'm so confused - maybe I've seen too many people. Just suffering a lot and really want to get better, even if its just a bit.

The aqueous deficiency part came from a keratograph (http://www.oculus.de/us/landingpages/k5m-dryeye/) which said I had a low tear meniscus height (not sure if MGD could cause this?), and from the fact that when my eye is touched with a cotton bud I feel little. Taken together the conclusion was that lasik / something more recent had damaged my corneal nerves or I had an autoimmune disease. I'm not sure how this changed so radically in 2 months, as like I said I had zero dry eye issues in June 2017 and by September was down to a tbut of zero, and I know 100% this was triggered by a patch of using the computer way too much and not blinking. I'm hoping the lipiview on tuesday can confirm my oil level so I know what I'm meant to be treating!

The Schirmer's test was without anaesthetic - I've had it done with anaesthetic and the results were still about 15 but the doctor didn't seem to trust it much...

I also had the most confusing IPL 3rd session, as the assistant said my glands were still blocked in places and the was oil quite thick, so I began cry a little as was so tired. Then the head came in and did a tbut which was 7/10, said I was cured and my glands were completely fine. Given 2 tbut tests since have come no where near this - most recent was 2/4, I think the fact my eyes were bursting with tears and he used two lots of dye didn't give a very accurate result. I also tried to tell him I still wake up 2-3 times a night with dried up eyes so couldn't be cured, and he just brushed this aside.

So far I've tried lots of different oils, IPL, prokera in one eye, hot compress, restasis, prp drops for 2 months, doxy, moisture chamber glasses, FML - which really sent my eyes downhill and BlephEx. I really want to know what is wrong with my eyes though before I try more. I guess there are things like prp injections, but I know you had a bad experience with that, and maybe testosterone cream? We have a new drug called oxervate here but it would be really expensive and I'm not sure there's any solid evidence it helps corneal nerves regrow.

[pythonidler]

Your tests seem to contradict one another. For example, your Schirmer scores suggest that you don't have aqueous deficiency, but both your TBUT and tear meniscus height tests suggest that you do (side note: although TBUT is technically a measure of both aqueous deficiency as well as MGD, you don't get really low TBUT without having at least some aqueous deficiency). I think I agree with your doctor here - the Schirmer result seems inaccurate. So it's likely that you do have aqueous deficiency.

I do think a confocal microscope would be really helpful in this situation, since you've had Lasik surgery. It's possible your nerves never regrew correctly after the surgery, or that they did regrow but have deteriorated with your aqueous deficiency. You may have a hard time finding a doctor who has a machine, though. Try calling the manufacturer (Heidelberg Engineering) and asking for doctors who have purchased the HRT3 with the Rostock Corneal Module.

In the meantime, I'd start taking 2000 mg of omega-3 daily (if you're not already). I've been recommended three brands of oils - HydroEye, Nordic Naturals Ultimate Omega, and PRN Dry Eye Benefits.

Also, I would consider trying out some scleral lenses, in conjunction with serum tears. They could be a great short or long-term solution for your problem.

[Guest]

Thanks for the advice. Despite the schirmer's everything else does seem to point to both things being a problem, though I wish it was just MGD. I'm really hoping now that the scleral lenses might make things more bearable during the day.

[Guest]

Man I love pythonfinders advice every time I'm in a thread...Nordic naturals ultimate omega liquid is amazing. It's in triglyceride form, third party tested and dr recommended. The hydro eye is great but if you're taking a multivitamin and fish oil...then the only sexy ingredient in that bottle is the black currant seed oil. Vital nutrients makes a great black currant seed oil.

Now or I will say something that's probably controversial. I like 10g of fish oil per day. Some studies suggest Increase in inflammation at this dose, but I disagree personally. That becomes expensive, but it's helped me A LOT.

I think a confocal microscope is in order here..

[Hokucat]

Hi Lena. At my lowest point I had zero Schirmers and 1-2 TBUT. It was so painful, I and many others can totally relate. I could not read the posts in this forum or type, had to stop working too, etc. My likely cause is Sjogren's Syndrome, as well as reduced blink rates from excessive use of computers and long drives to work. You're likely right that using the computer so much quickly contributed to worsening your condition.

Don't lose hope you'll eventually find the thing(s) that will help you. It was a combination of several things including some of those mentioned above, plus diet changes that helped me. I had to have probing because my glands were blocked, some with scar tissue and very thick and dried oil. Also changed my diet to consuming more vegetables including juicing parsley and various greens and a rainbow of veggies, eating berries, drinking green tea with fresh lemon juice and lots of water, eating small portions of protein, and limiting dairy, sugars, and gluten. These diet changes were based on a daily log I kept of what I ate and drank, only introducing changes one at a time for at least a week, and noting whether my eyes felt better, worse or the same. Finding the right diet changes were key for me. I also wear sclerals, do lid hygiene with Ocusoft Foam Plus 2x daily, wear EyeSeals 4.0 night goggles, periodically take rx pill Evoxac/Cevemeline (can give moisture to eyes for ~4 hours for some people), and yes, still limit using the computer and reading.

I hope you find some relief soon, Lena. Will keep you in my prayers.