Unbearable dry eyes

[WVM]

Hi all,

I'm turning to this forum demotivated, and most of all, scared. My dry eye started 2 years ago. I've seen six specialists so far and none of them have been able to help me. I suffer from extremely dry and teary eyes - and they are turning my life into a nightmare. Don't get me wrong, I know there are worse things, but my problem has become unbearable. I have pain every day, am under performing at work due to my condition and am avoiding going out due to it worsening my condition.

I'm a 23 year old (yeah..) male living in The Netherlands. Some information about my health:

- I wear contact lenses (Biofinity Toric) and have glasses as well
- I'm severely allergic and have atopic eczema, which might also have an effect on my eyes
- I take anti histamines

My problem started two years ago and has only gotten worse, I've tried A LOT:

- Tons of eye drops & gels including evo tears
- warm compresses, eye massage and blephagel
- anti-allergic drops
- punctal plugs: worked great the first two weeks, I was so happy, but the effect disappeared
- oral antibiotics worked but are obviously not suitable for long term use
- omega 3 fatty acids

None of this worked. My last schirmer's test result was 1 ml.

Right now my doctor prescriped Ciclosporine eye drops (restasis in US I guess?) which I have been taking for one month now: no results so far. I need to go back to the doc in month. Furthermore I'm using hylan eye drops and duratears gel but it only provides a few minutes of relief.

What I've not tried:

- diet changes
- blood tests
- goggles (is this recommended? mornings are the worse for me)
- stop wearing contact lenses (to be honest my condition is much worse if I wear glasses the whole day)

The next step according to my doctor are sceral lenses. What do you think?

Is there anything I should ask my doctor?

Thanks in advance,

[Hokucat]

Hi WVM. Sorry to hear about all you've been going through. I went through something very similar to you for several years, and it is definitely unbearable. It sounds like you are on the right path of treatments and tests to try next, and reaching out in this forum to so many of us who have been through it should help.

Definitely get goggles, it's something that has helped a lot of people and is easy to obtain.

Do you know whether your meibomian glands are blocked, or producing thick, little, or no oil? If so, there are treatments specific to this condition to open up or stimulate the glands, such as IPL, meibomian gland probing and expressing. If a gland issue, blinking exercises (put eye drops in first if eyes are bone dry) every hour or so may help stimulate your glands, both with and without contacts on. Ask your doctor about your glands, if you do not already know where it stands. If he/she can't tell you that, find a dry eye specialist who can.

Good idea to try sclerals. I wear mines 12+ hours a day and it is one of the main things that helps me function well daily. I also think it helped the surface of my eyes get better too, because I no longer need to use eye drops when not wearing the lenses. Sclerals, if you are able to wear them, can really help with using the computer, reading, driving, watching TV, etc.

When wearing glasses, try using Genteal Severe Gel. This was one of the only drops/gels that soothed my eyes and was long lasting during my severe dry eye days, allowing me to be a little more functional:

https://www.amazon.com/GenTeal-Lubri.../dp/B000URVDQ8

Getting extensive blood work done is a good idea too. Typical vitamin deficiencies that cause dry eye are potassium, vitamin A, C, B12, D, etc. Blood tests should also include checking for autoimmune disease, which often causes severe dry eyes.

Diet can make a big impact, and could address the root problem. When I started drinking fresh lemon juice squeezed in green tea twice a day, it was the one thing that most significantly reduced my dry eye problem, it was almost a complete turnaround for me. Somehow that was exactly what my body needed. For you it might be something else. Often eliminating sugars, dairy, and gluten also helps, while eating/juicing a rainbow of vegetables, and eating fruits, especially berries daily. It may help to take an eye vitamin like Ocuvite that has lutein and zeaxabthin.

Many of us in this forum have gone through similar debilitating years like you are currently experiencing, and have gotten better. You will get better too, once you find the thing or combination of things that works for you.

[PhoenixEyes]

Hi, sorry you're having to suffer with all this.

- I'm severely allergic and have atopic eczema, which might also have an effect on my eyes

I have had atopic eczema since I was a baby. Though my reason for dry eyes is separate (didn't begin until I suffered toxic epidermal necrolysis in my 30s), I wonder what you are trying for the eczema?

For 2 decades I was given topical steroid creams (Betnovate etc.) to reduce inflammation and itchiness, as well as some moisturizers. They helped but it wasn't until I replaced my hand / body soap with Dermol Lotion that I got full relief. Before I was using pure un-perfumed soaps like Dove thinking it would be enough.

It seems counter-intuitive but every time we wash our hands / body with water, it actually washes away the oil from our skin. For the average person this isn't a problem but people with dry skin issues suffer badly. Yep, water can be dehydrating rather than hydrating!

So if you haven't already you might try a soap replacement like Dermol, Hydromol, DoubleBase, E45 lotion etc. I recommend Dermol as it has antimicrobial properties but that might be too strong for some.

Perhaps this will also help your eyes if it is related to atopic eczema, as if you wash your face everyday, regularly splash your eyes for relief or use wet cloths for warm compresses you could be taking away skin oils from the eyelids.

Try to see a dermatologist if you can.

- oral antibiotics worked but are obviously not suitable for long term use

There is also topical eye antibiotics such as chloramphenicol, available as either eye drops or ointment. If you find the same positive results as with oral antibiotics then perhaps you can discuss with the doctor. What does relief using both oral and topical antibiotics indicate as a root cause from a professional perspective?

Some here have mentioned azithromycin (brand names Azasite, Azyter etc.), a macrolide. Here's a search link for forum feedback on it.

Hope you find relief soon.

[WVM]

Hi,

So happy I discovered this forum. Glad to hear I'm not alone in this.
I will tell my doctor I want to proceed with the sceral lenses if ciclosporine is still not helping after 2+ months. Thanks.

To answer the questions above:

Definitely get goggles, it's something that has helped a lot of people and is easy to obtain.

Could you tell me which goggles can be recommended? I will have to order them online so I'll be unable to test them before buying. Thanks!

Do you know whether your meibomian glands are blocked, or producing thick, little, or no oil? If so, there are treatments specific to this condition to open up or stimulate the glands, such as IPL, meibomian gland probing and expressing. If a gland issue, blinking exercises (put eye drops in first if eyes are bone dry) every hour or so may help stimulate your glands, both with and without contacts on. Ask your doctor about your glands, if you do not already know where it stands. If he/she can't tell you that, find a dry eye specialist who can.

My first doctor told me they were blocked and not producing any. The doctor I'm currently seeing tells me that they are functioning 'okay' but that the quality is bad, plus the tears / oil evaporate quickly. But it hasn't been tested thoroughly. Healthcare in The Netherlands is generally really good, but with a complicated case like mine it's harder because the doctor's don't have the time for extensive consultations..

When wearing glasses, try using Genteal Severe Gel. This was one of the only drops/gels that soothed my eyes and was long lasting during my severe dry eye days, allowing me to be a little more functional:

Will order this gel and try it, thanks. Only thing that sucks is that I won't get the money back from the health insurance, and my eyes are already costing me a ton...

I have had atopic eczema since I was a baby. Though my reason for dry eyes is separate (didn't begin until I suffered toxic epidermal necrolysis in my 30s), I wonder what you are trying for the eczema?

Currently it's treated by light therapy (2 times a week), elidel, protopic, topical steriod creams & hydrating creams. I use sensitive showergel from Atoderm. Furthermore I take anti histamines (Desloratadine)

[Hokucat]

The goggles best for you will depend on the size and profile of your face, and preferences may be different for men vs. women. Many people like WileyX and 7Eye. Perhaps do a search in this forum on goggles or do a new post asking for advice. I had a tough time finding goggles that fit me well because of my profile.

You mention your eyes are worst in morning. Wearing night moisture gear while you sleep can help. The Dry Eye Shop (who sponsors this forum), which you can access from this website, has some great options. I use TranquilEyes, but I also heard EyeSeals 4.0 works well:

https://www.dryeyeshop.com/mobile/ey...ucts-c122.aspx

Take care over there in The Netherlands. I loved Amsterdam when I visited for work and pleasure several years ago!

[MGD1701]

Hi WVM,

I have MGD. My eyes are finally under control after realizing 'consistant' heat, about 45-43C are the keys for effective compress (for my case) + several detective work + expertiments.

My suggestions: if I were you, my priorites would be:
1) find a 'real expert' to identify 'root causes'. Dr who
a) checks/presses glands (most doctors unfortunaly don't do it at all)
b) has RIGHT equipments to check your glands/oil status (such as how many are functional, drop outs (if any)) and if you blink ok.
c) tells you your to-do-list at home

If you can NOT find a right one in your country, maybe travel to other countries,London has a dry eye center??

drop - for MGD, you need oil-based, such as: Systance Balance apart from EvoTear.

Before bed - Have you tried, Artelac and Systance Ultra? Maybe they can help you to get ride of morning pain. Maybe swimming goggle will also do the job? Better avoid 'ointment' as it causes more problems than benefits.

4) Blinking exercise - I find it useful. It wont hurt to try.
5) 20-zoom mirror is a great tool to monitor glands, especially after compress.

Lastly, try to find out what make your eyes worse/good and try new things. For example, if after warm compress + massage, you dont feel relief, something is wrong. either you massage too strong or the heat is too high/low, time is too long/short???? If you put drop but no relief, it might be you put too intensive or WRONG drops.

Good luck!
MGD1701

[PG]

Hi WVM,
You don't say what your diagnosis is - evaporative dry eye from MGD? Or aqueous deficiency?
Restasis is kind of odd. It takes up to 4 months to work. It is suppose to reduce inflammation and create tears. For me it only reduced inflammation for the first 9 months, then I had to stop because of an eye infection. My inflammation got worse so I resumed two months later and it gave me tears, but only in one eye, and too many tears. Then I had to use steriod drops and combined with Restasis my eyes are like the sahara desert. So now I stop Restasis when I do steroid drops, and I wait to see what happens when I resume - tears or no tears. I also discovered that to get tears I could not do the drops and then immediately do a warm massage. Finicky stuff.

Anti-histamines are drying. Maybe try not taking them?

I agree with MGD1701. For me the warm compress has to be warm-hot, soft like a rice bag (not pressing), and long--like 15-20 minutes. And for drops, only ONE works for me and it does not have preservatives which are an irritant. I tried many; my counter was lined with drops at one point.

I wear prescription moisture chamber 7Eye glasses at work.

[LindaDawn]

Thank you for your post.

1. Which facial steamer worked for you. I am already using a home made baggy bag.
2. Already using Systane Balance. Offers some relief.
3. Will look into Ststane Ultra and Artelac if available in UK.
4. Do you think swimming goggles will help for night time.
5. Need my ointments as pain upon waking has vanished.

6. Too scared to look in mirror at the moment as eyes are so red looking.

[WVM]

Hi all,

Thanks for your time and posts.

As to what my exact diagnosis is: who knows? The doctors never told me, and I don't think they did all the tests and just tried doing new stuff (e.g. ciclosporine). Anyway, my first doctor told me it's MGD and I believe it.

Hot compress and lid massage works for me. I feel oils flowing and pain reducing. It definitely helps me every morning. Right now I use this mask: https://www.viata.nl/apotheek/ogen/t...Q#.WMEjmFTatPY.

Would it be worth it to switch to something more advanced? e.g. the blephasteam? I saw some ads for it. Anyway, my doctors haven't really mentioned the warm therapy anymore.

I will do some research on which goggles to try, thanks! Are there any European stores selling them?

[MGD1701]

Thank you for your post.

1. Which facial steamer worked for you. I am already using a home made baggy bag.
2. Already using Systane Balance. Offers some relief.
3. Will look into Ststane Ultra and Artelac if available in UK.
4. Do you think swimming goggles will help for night time.
5. Need my ointments as pain upon waking has vanished.

6. Too scared to look in mirror at the moment as eyes are so red looking.

Hi Linda
1) Facial Steamer, the brand I use is no longer in production. Other brands are ok - just be careful with heat/temperature etc. Ideally select the one with '2 different heat levels'. If you can feel oil secretion, then it should be right. But somewhere I read, steam is the best and 'close eyes otherwise eyes would be drier' (sometimes little things make great difference). With steamer, hard to feel oil secretion but with a 20-zoom mirror I can see (oil) drops. Sometimes I use Belphasteam (heat upto 42.5C) to monitor oil/gland status as I can easily feel oils with it.

4. Swimming goggles - I tried but it made no difference. I think it helps for the night time. You just need to try it out.

5. Ointment - Indeed it helps but try to find alternatives. if you have MGD, try to master warm compress then your night pain can be improved.

[PhoenixEyes]

Is there any way you can get allergy tests done regarding your diet and environment (e.g. laundry detergent etc.)?

It seems Elidel, Protopic and Cyclosporine all work by suppressing your immune system, so do be careful when catching an infection. If Atoderm (like Dermol) has anti-microbial properties it may be beneficial to keep infection at bay, do you use it at the sink as well as the shower?

For moisture chamber glasses in Europe, I got mine here in the UK from https://www.eyewear-accessories.co.u...-of-your-order

Best wishes for relief.

[PG]

Systane Balance is not preservative-free. My doc took me off this first thing.
If you have MGD, check out IPL. This helped me. And blinking exercises.

[LindaDawn]

I haven't looked into allergy tests beacause I have had dry eye since I went on the contraceptive pill many many years ago. I couldn't tolerate contact lenses then and tried again recently. I have mgd. When I massage and use my rice baggy I looked in mirror and couldn't see any oils at oil.

[MGD1701]

Hi Linda
Mirror - make sure it is 20-zoom as only it helps for checking glands/oil.

Warm compress: the keys are: 'consistant' heat, enough time and heat, at least in the beginning for me 45-43C.
It really makes big difference.

Good luck!

[WVM]

Just got back from the Eye Doc. Normally the appointment was only in the beginning of April but it hurt so much I asked for an emergency meeting.

- Ciclosporine: no result after 6 weeks. We're trying for 4 more weeks, after that I have no prescriptions anymore. Is this too short? I don't want to miss out on something that could help me due to being impatient.

- sceral / medical lenses: are ordered. Luckily the insurance covers them so it's worth trying. Fingers crossed!

- She gave me HYLO-COMOD for eye drops and a Vitamine A cream to put into my eyes before sleep

- She also lend me the Blephasteam. Really excited to try this tonight. However, if it works, it's €220 to buy it myself...

As to what my exact diagnosis is: she couldn't answer me. She said it's a combination of not enough tear production, bad quality of the tears and blocked glands. My eczema and allergies could also play a role.

She said doing blood tests won't teach us anything so it doesn't seem like that is happening.