Housebound and really struggling

[holly123]

HI everyone, am new to the forum and really struggling with MGD and aqueous deficient dry eye. Am living in the UK and this is what I have tried -
Ikervis drops
eye drops every half hour
Salagen tablets
doxycylcine
moisture chamber goggles all day
upper and lower plugs
I have been told that my glands produce very little oil. I have had to give up work and have barely been able to go outside for the past year. Daily activites are very difficult. NOt sure if there is anything else left to try and am struggling to come to terms with my situation as my eyes seem to be getting worse every day. The slightest thing seems to set them off in a downward spiral. I can barely open my eyes outside. It is puzzling because there is no staining on my corneas and yet the impact on my life has been severe. Has anyone else found themselves in a similar situation?

[ebi1368]

Hi holly

Sorry to hear you have problems. Did they tell you why you have low tear production? Have you had Lasik or any eye surgery?

[quattroboy]

Hey Holly,

Have you tried IPL, Lippiflow or probing?

Have you had you glands checked with Lippiview?

Who told you about your glands?

I'm also UK based.

[holly123]

HI there, Have not tried these. Ophthalmologist says they cannot express oil when they lightly press my lids. Have not had lippiview or probing. Do you know where these are available in the UK.? Wondered about IPL but not sure if it is worth it if there is no oil there. I know you can get e-eye treatment at the MIdland Eye Clinic. Have not had lasik or eye surgery. Thanks for the replies

[MGD1701]

no oil come out due to scar tissue or glands blocked??? omega 3/GLA, warm compress, lid hygiene should help
I would remove blockage by LipiFLow, IPL, manual expression etc. first for relief

more, maybe my earlier posting would help, #2
http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

[quattroboy]

Hi Holly,

Not sure where you are in the UK but I think you need a better diagnosis that you've had.

In terms of just Lippiview and Lippiflow I used https://www.dryeyesclinic.co.uk/

In London there is http://dryeyecentre.co.uk/

The only person who 's been mentioned in terms of probing is http://davidobrart.co.uk

In Scotland https://www.peterivins.co.uk/shop_ey...c?next=&id=232 but they don't seem to offer Lippiflow or IPL.

Hope this helps.

[holly123]

HI there
Am based in the Midlands. Have tried warm compresses, omega /GLA. Will maybe look into IPL and Lippiview to get better idea of state of glands. At the minute am struggling to travel far/ Doxycycline did not do much for me.Thanks for help

[quattroboy]

In the Midlands

https://www.midlandeye.com/nick-dash/

[Hokucat]

Hi Holly. I’m so sorry to hear you’ve been struggling and are homebound. I was homebound for three years, very similar situation as you with both MGD and aqueous deficiency, and few glands expressing any oil. As the gang mentioned above, there are several next level treatments like gland expression, LipiFlow, IPL, and probing to help unblock your glands, and things like scleral lenses to help with the dryness.

In the end probing+diet changes+sclerals has helped me manage my condition:
1) Probing to first unblock the glands, because I had several glands with scar tissue. But recommend you first try a few of the less invasive LipiFlow and/or IPL procedures, because you may not have scar tissue. If these don’t work, then turn to probing.
2) Finding the right diet changes after unblocking my glands, to help both my meibomian and lacrimal glands to better function. This was key in preventing my glands from getting blocked up again.
3) Scleral lenses to help with remaining dryness I have due to several atrophied glands. But these lenses could also help give you some immediate relief and help protect your eyes from getting erosions and abrasions earlier in the process, if you are able to tolerate them.

For some immediate temporary relief now, you might want to try Genteal Severe Dry Eye Gel. When I used to have bone-dry eyes, this was the only thing that consistently gave me a little relief, making my parched eyeballs feel soothed and moist, and it lasted longer than drops. Looks like it’s sold in the UK on eBay but is out of stock locally right now, but you can order it from international eBay suppliers. Here is the product and a post I recently responded to in detail about this gel:

https://m.ebay.co.uk/sch/i.html?_fro...rt=nc&LH_BIN=1

http://forum.dryeyezone.com/forum/dr...of-genteal-gel

Holly, I hope you will feel better soon.

[Guest]

holly123 Please Read!

If you have no staining but are in severe pain this is a massive flag for neuropathy. I've been in the exact same situation as you wondering why I wear moisture chamber glasses 24/7 but have no apparent damage to my eye.

Basically when your eyes become dry and inflamed it can damage your nerves and they either:
- overreact to stimulus that should be painful e.g. wind
- or overact to stimulus that shouldn't be painful e.g. just the pressure of my eyelid going over my eye hurts.

The main way to treat neuropathy is autologous serum or PRP combined with a steroid drop. I really, really strongly suggest you get your doctor to refer you to Professor Dua and his team at Nottingham. They have a confocal that will allow them to scan the nerves in your eye (quick and painless) to confirm if there is any damage there, and can help you with a plan of what you could try, even if its just dry eye.

[holly123]

Thank you for the advice. I will see if I am suitable for IPL treatment first. Have asked about scleral lenses but one ophthalmologist said they would irritate my eyes and the other said that my corneas were OK at the minute so I didn't need them. Think I will get another opinion as feel like eyes are getting worse every day. Every slight thing seems to make them worse. We seem to have less available treatments in the UK. Thanks again everyone.

[Guest]

holly123 They won't irritate your eyes if you get a good fit, but getting a good fit can be tricky.

[holly123]

Thanks Lena. I am actually under Professor Dua and they have ruled out nerve involvement. He says the next stage for me would be sewing down the corners of my lids which sounds pretty awful. I do have staining on conjunctiva. Will see if IPL helps at all I think.

[WellEyes]

Hi Holly,

I would recommend probing. In case of really clogged MGD's, no IPL or Lipiflow or warm compress can release your oil. If this is not done, you might lose your meibomian glands permanently. Plus, I would not rely on doctors ruling out neuropathy that easily as there are many ways it manifests itself. Some ruled out neuropathy for me, some confirmed it. well...
In most cases we suffer both from "real" dry eyes and neuropathy which makes the puzzle very difficult.

I wish you all the best.

[edmunder]

holly123 Please Read!

If you have no staining but are in severe pain this is a massive flag for neuropathy. I've been in the exact same situation as you wondering why I wear moisture chamber glasses 24/7 but have no apparent damage to my eye.

Basically when your eyes become dry and inflamed it can damage your nerves and they either:
- overreact to stimulus that should be painful e.g. wind
- or overact to stimulus that shouldn't be painful e.g. just the pressure of my eyelid going over my eye hurts.

The main way to treat neuropathy is autologous serum or PRP combined with a steroid drop. I really, really strongly suggest you get your doctor to refer you to Professor Dua and his team at Nottingham. They have a confocal that will allow them to scan the nerves in your eye (quick and painless) to confirm if there is any damage there, and can help you with a plan of what you could try, even if its just dry eye.

You can get probing done in Liverpool I think. I live in London and had IPL and Lipiflow. Basically neither of these helped me as the problem was really with the nerves. Although I have very low oil layer I have no staining therefore there is no way I should feel the terrible severe pain I feel all the time.

Best, Lena

I have the same situation of almost no staining but one eye is extremely painful. Low lipid layer. Low tear lake.

It is because when the cornea’s nerves are exposed from no lipid layer there is pain. The eye may not stain badly but those nerves fire. Its not neuropathy. Thats no issue and pain. Low lipid layer is a serious issue.

Anyways im getting laserfit sclerals in a few weeks so wish me luck. I have bad mgd and intense pain in one eye usually that has a very poor lipid layer.

Im actually in talks to be sent to a doctor to talk about eye removal as a just in case measure, the one very bad one. If sclerals dont stop the pain.