Veins in eyes worsening.

[IrishEyes1992]

So do you not really go to bars/clubs because of your eyes? I don't want to become old before my time and sit in every night....the thought of this completely taking over my life depresses me.

Starting cliradex today, are you supposed to do it morning and night?

I was given dexamethasone 0.1% but haven't used it yet as I was afraid of rebound redness, I'm booked into see a new specialist next week and will ask him how to minimise that if possible. I will ask him about lotemax.

Restasis here is called IKervis, it's very rare they give it out as our health system is different here, but I will ask about it!

Yea it is ocular rosacea I have! What brand/type of makeup do you use? I'm using clinique atm mainly!

and think I've asked you this before but are you able to lie out and enjoy the sun? I really love my holidays and would like to do some travelling in the future! The thought of staying in Ireland forever is depressing, we never get any sunshine!

Thank u for your advice it is appreciated

[Faith1989]

No I do go out sometimes, but my eyes stop me from being as social as I would like. If you wean off steroids and use as needed, you won't get rebound redness. The steroids will make you feel much better and get things under control so you can try to "keep the inflammation down" in other ways. To me, the steroids are worth the risks but I get checked every few weeks.

The sun sun is a trigger for me but winter is worse. Just ensure you are drinking lots of water. I am trying my best not to let this ruin my life but it's so hard. I'm 28, and got this when I was 22. It's never gone into remission really. The only thing I have never tried is probing but I live in Canada and it's to expensive to get anything done in the U.S.

I would use what the doctors give you, they are trying to help you feel better. This disease is so debilitating that I'd take any help I could get.

[IrishEyes1992]

Yeh I know what you mean.....I'm definatley going to ask about using maintenance doses of steroids but I can see my specialist being weird about it....we are so far behind America and Canada! i can see him saying its too risky

i wouldn't know if the sun is a trigger for me or not as i haven't been abroad since this all started. i was hoping a damp/humid heat would be okay but as its rosacea probably any type of heat is bad

i also took this when i was 22 and feel its ruining my life. i have just had the most boring salad for dinner and the thought of never eating anything but that and never going abroad is so sad!....after all, life is all about good experiences. Everyone where i live goes abroad in summer to europe/america/canada/thailand as our "summer" is just so dull, grey and wet.

I've always loved eye makeup too...do you just wear a flick of mascara, or none at all?! i really miss full eye makeup...

i totally get you about it being so debilitating...it truly is....i feel completely abnormal for my age!

i have heard of probing....its deffo not done here in ireland ha...we have literally nothing...i would have to go to mainland UK just for IPL which means lots of extra £££ for flights!

[MGD1701]

Hi Fay and IrishEyes

Probing
One doctor considered probing, BlephEx etc. would help me, when I asked.
However, the doctor who performs these said NO - as all remainding pores/glands are opened, 2 months after LipiFlow.
My oil is now only half thick - I found the solutions by myself by using higher heat to get my thick oil flow.

Sun - how could sun trigger dry eye/MGD? My vit. D is very low (over-use of sunblock)

[IrishEyes1992]

Hey MGD,

so did you find the lipiflow worked for you then? What country do you live in?


Thanks for the list! Do you use cetaphil no your eyelids? La Roche posay 'toleraine' eye contour moisturiser is good....there is no parabens, fragrance, alcohol etc ....you could try it. I still don't put it right up to my eyelid though.

Well the sun is a big rosacea trigger, but if you don't have rosacea then maybe it wouldn't be bad for you??

I suspect im low in vitamin d also, I was a few years ago!

[Hokucat]

Hi. Lots of good info being exchanged here! Just wanted to mention a few things:

-For dry or raw skin around the eyes, one of my specialists told me to use Refresh P.M. Sensitive Preservative-free ointment. It's typically used directly on the eye at night, but it works very well to heal and smooth skin on the eyelids, under the eyes, corners of the eyes, and eyebrows. Plus since it's preservative-free and meant to be put on the eye, if you get a little in the eye it typically does not sting or irritate.

-Several steroid eye drops have BAK as a preservative, for sure Lotemax. As farmgirl mentioned, stay away from anything with BAK. BAK is known to damage the eye surface and cause or contribute to dry eyes. I used Lotemax for a year. I believe the BAK in it further damaged the surface of my eyes, and it was also during that time I developed blepharospasms (involuntary blinking/closing of the eyes). Soon after discontinuing it, the bleparospasms went away. So if you can use a preservative-free steroid drop/ointment that would be best, or at minimum one that does not use BAK. If you must use a BAK drop, one of my specialists agreed rinsing with preservative-free saline 20 minutes after can help reduce the BAK impact, while still getting the benefit of the medicine in the drop.

-After cleaning my lid margins, I always rinse my eyes with preservative-free saline. It gets rid of any residual or sting, which is also important since I put my scleral lenses on right after that in the mornings.

-Changing my diet was one of the main reasons I went from being home bound for several years to getting the majority of my life back. It's not easy to do, but now that I am much better, if I do have something that is "not in the diet" periodically (sweets and pasta are my weak points!), it usually has little or no impact to my eyes anymore. So hang in there with the diet, it can take several months to take full effect. This link includes the diet changes I made, several things in line with what you all are doing:

http://www.dryeyezone.com/talk/forum...ccumulate-info

[IrishEyes1992]

Hi hokucat....

thanks for your message. That's a good idea about the ointment, I might try that, are you in the uk? Can you buy it here?

The steroid drops I was given are preservative free, dexamethasone! I haven't used them yet.

I might get preservative free saline to rinse my eyes out, for some reason I quite often feel the need to rinse my eyes and I know it isn't good to use water.

Sweets and pasta are my weak points too lol, especially sweets. I am finding this diet a massage change, but will try my best to just keep at it. Glad you have gotten better....

also, did you have any redness to your eyes, and if so has this improved?

Thanks!

[Hokucat]

Hi IrishEyes. No, I'm in California. But looks like Refresh P.M. Sensitive Preservative-Free ointment, aka Refresh P.M. Preservative-Free (both have same ingredients: Mineral Oil 42.5% & White Petrolatum...I think Allergan just changed the name) is available in the U.K., at least at the place below. At Amazon U.K. it is out of stock. I think there are other brands that have similar ingredients.

https://www.lenscatalogue.co.uk/Acce...?CategoryID=69

I did not have much redness in my eyes, but the surface of my eyes were like sandpaper per my doctors. I had zero tear film for several years. I now have a decent tear film, and my eye surface is much better now, so it's possible to get better.

Rebecca sells several small/single use preservative-free saline vials in her Dry Eye Shop.

https://www.dryeyeshop.com/mobile/ca...Keyword=Saline

[Mr_Picky]

Hey IrishEyes, sorry for taking a while to reply, but my eyes are so bad it's such an effort to do so!

Nah, still haven't tried the cliradex! They seem to cause stinging for a lot of people, which worries me! Also, they're expensive. I might try them though. Have you tried them yet? I would stop the blephasol but if I do my lower lids keep thickening! I just don't know.

My facial rosacea improved quite a bit on my new diet, but this past ten days or so it has deteriorated even though I'm doing nothing differently! It's maddening. I wonder if eggs are a trigger? I think they upset my stomach anyway.

I'll look up that moisturiser. I think I own one book on audible but have never listened to it! Might help with insomnia too.

The ziena glasses made my eyes very strained and I couldn't understand why although I had a feeling it had something to do with the oversized lenses.

Thanks for the heads up about soolantra. I'd never heard of it! I looked up some reviews and it sounds quite promising but I've been hurt before lol. I'll try and get some, although I wouldn't be surprised if my gp won't prescribe it without referring me to a dermatologist. My last eye doctor said if I improve my facial rosacea my eyes should improve too.

[Mr_Picky]

Hi Faith1989. I was first given doxycycline 100mg once a day in June of 2015. I took it for three months as instructed. After I was off it for about three months I needed to go back on it. I've sorta been repeating that on off cycle since. Sometimes I take two a day. I've been on it for the last three weeks or so. I've never been given steroids in case of cataracts. I used to take a probiotic yoghurt drink but it was quite sugary and I don't know if it did any good! I'm sticking rigidly to my new diet but my birthday is coming up next week and I'm consumed by the thought of getting a chinese takeaway and eating as much rubbish as possible just for one day!

[Faith1989]

Hocucat

what do you think was the MOST important thing you did to aid your recovery?

[MGD1701]

Hi IrishEyes
I dont put anything near eyes - just a bit risky.

LipiFlow: Yes, it helped.

[Hokucat]

Faith, the most important thing to aid my recovery was changing my diet, especially when I added drinking fresh lemon juice in strong green tea 2x daily to my already healthy diet. I started noticing my eyes were less dry within a week, and have continued to get better. I have not had a bad dry eye day since starting it in October 2015. I think the antioxidant, antibacterial and anti-inflammatory properties of the lemon/tea somehow gave my immune system what it needed to properly function, killed off bad bacteria in my body, and helped my meibum to flow. I may never know for sure the underlying reasons, but it definitely worked for me.

For others, it may be something different their body needs. Keeping a daily log of what I ate and drank, meds/drops/supplements used, exercise, hours of sleep, how dry eyes felt that day, etc. really helped me pinpoint what worked and what made things worse.

Doing probing was also key, because just about all my meibomian glands were blocked with thick or dried up oil, plus many had scar tissue. So for my particular situation, if I did not have probing to unblock my glands first, likely no diet changes or other treatments would have helped.

[IrishEyes1992]

Picky,

It's okay I know it's an effort using the eyes lol...

yeh u should really give the cliradex a go I guess if it really hurts and the burning doesn't settle down You could stop it....I tried it the other day morning and night and yes it did burn, I've stopped it but that's just until I have my appt with my new opthamologist, if it worked I would be able to put up with the burning.

Eggs are a funny food I think. If they don't agree with you I would try cutting them out!

Yeh the soolantra is expensice so you might need a derm refferal.

Im surprised that you were given IKervis but not steroids. Just because IKervis is expensive! Did you have to keep asking them to get it, or were they pretty easy going with giving it to you....and was it the opthamologist That suggested it?

There was no chance my opthamologist was giving it to me

[farmgirl]

Sorry I am slow to respond Picky, I have been out of town. Some of the Wiley X glasses are moisture chamber but you have to be careful because I understand that they have a new thinner gasket that is not suitable for dry eye. I think the Dry Eye store maybe carries the thicker ones or that they are still available upon request. I know for sure that the Air Rage and Brick have gaskets. Google Wiley X safety glasses to find them but you will have to special order the lenses.

Regarding your question Irisheyes, I was told that the curve of the glass in the 7Eye Briza, because it kind of wraps around, is not suitable for prescription lenses. I do have a pair of 7eye Churala with lenses that are fine though. As regards the blue light filter lenses, I just saw a blurb on TV something about blue light and computer eye strain and that there were lenses to filter it out but don't quote me, you would have to research that more.