Desperate for answers/advice

[Lchristine22]

Hey everyone! Out of desperation, I really need to connect with anyone who is suffering or has suffered like I have been the past year or so. I'm at my wits end trying to find answers and ways to manage my pain and symptoms. I'm a 26 yr old female and I've had with dry eye for about 3 years now. When I first started having issues with dryness I scheduled an appointment with my ophthalmologist who was able to get my symptoms under control with restasis after about only 3 weeks of usage. Unfortunately, I wasn't aware of the importance of not back off of the restasis after i'd been on it for months so when I started to see the results I began missing dosages here and there (dumb of me I know). I was less consistent with it and when my eyes started to bug me again I started not missing my doses again. However, after trying to get back in my routine my eyes started getting worse and worse so back to my optha. I went. I just didn't feel like the restasis was working at all anymore. That's when my doctor suggested lower punctal plugs. Which worked amazingly well for a few months...then suddenly stopped working altogether. It was so disappointing to feel relief again and then all of the sudden have severe dryness yet again. So back to my doctor I go yet again because my plan B suddenly stopped working. He next prescribed me lotemax, and anti inflammatory/steroid (I believe?) ...which took some time to start working to it's full potential..but when it did I finally started to feel normal again. During this time I also tried a VERY strict no gluten, sugar, dairy, all natural diet. So..to be honest, I'm not sure if it was the lotemax alone that was helping or the combination of the diet and lotemax. When I started to feel better, I automatically assumed it was the lotemax finally working for me so I went back to my regular eating habits before the diet. Not even kidding, the first thing I had with sugar and my eyes started to feel soooo dry again the day after going off the strict diet. (Was still using lotemax at the time) so as the next week went on I noticed my eyes getting worse and worse despite being on the lotemax. Still watching what I was eating but I know I wasn't being as strict as I originally was when I started the diet. So back to the doctor I went again where he basically told me there wasn't anything else he could do for me but send me to a corneal specialist. Corneal specialist tells me that I should've never stopped being consistent with the restasis. I should've known the importance of sticking with it and being very consistent but I didn't realize how big of a deal it was at the time bc I would only skip a dose here and there not thinking much of it. He proceeded to tell me that it may take up 6mo/1 yr to start working again but my fear is that I made the biggest mistake of my life by missing doses and going completely off it when I had punctal plugs bc my eyes just seem to be getting worse and worse. Blood shot, bone dry, also add blepharitis to the mix now due to the excessive dryness over a long period of time I assume.. I'm to the point now where absolutely nothing is working. I look and feel like hell. I've given up any hope on doing the things I want to do in life because I'm physically in pain 24/7 due to how severely dry my eyes are. All I want to do is sit in the house where no one can see me and how red my eyes are..yes, it's that embarrassing. I also can hardly accomplish the simplest tasks daily anymore either. Every day is a challenge and a struggle. I've seen 3 different doctors now and I'm going to my 3rd one Friday and begging her to let me try lacriserts only because I've read such great reviews about them. I'm going to try the all natural diet, continuing restasis (which again I've been on for about 4mo now), and hopefully lacrisert gel insterts and see if I make any progress with the combination of all 3. I'm praying for a miracle and vow to never miss a dose of my restasis unless it's been over a year with absolutely zero results to show for. I only hope people can learn from my mistake and not get lazy or get overly confident in your progress that you don't think you need something anymore or as much. Stick with it and don't stop!!! Lastly, if these 3 things don't seem to help is there anyone who could give me anymore advice on what I should do next?? Great doctors? Mayo clinic? Anything at all any of you recommend? I'm willing to try anything at this point and all suggestions will be greatly appreciated. Thank you for those who took the time to read this as well. I know I'm all over the place due to lack of sleep but thanks for bearing with me on this.

[savino]

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[Lchristine22]

It did work in the beginning, then stopped but I've been taking it for the last 4 months (started it again) and they're just getting worse and worse. Hopefully my doctor will have something else to try when I go see her on Friday. Fingers crossed!

[lizlou29]

Do you know why your eyes are dry in the first place? Sorry if I missed that. If not, have you had blood tests for autoimmune diseases etc?

[Ashley2387]

Hi there, I'm a 27 year old female and my story is similar to yours. I was prescribed Restasis back in January and everything was great up until June. I too became less diligent about putting the drops in, especially at night when I was exhausted. Please try not to be so hard on yourself. Things like this happen, especially when you start seeing such positive results. Unfortunately, I feel there is not enough education around dry eye. It sounds like you're doing everything you can. Keep researching and don't be afraid to get a 4th, 5th or 6th opinion. I live in Boston and I have an appointment at Korbs & Associates on Friday. If I learn anything new I will be sure to let you know. Stay strong!

[Lchristine22]

Do you know why your eyes are dry in the first place? Sorry if I missed that. If not, have you had blood tests for autoimmune diseases etc?

Not sure if I'm replying on this thing right. So hopefully you'll get notified lizlou29. But they're not sure why they are so dry. I've had the blood tests done for Sjorgens and she said nothing indicated s reason for concern. I do have hypothyroidism and also had lasik about 5 years ago. I was completely fine after LASIK, the problem just hit me out of no where years later. Most of the doctors I've seen have said they don't believe it's the lasik that triggered the dryness. They also think I may be allergic to something but I feared that myself so I've changed up everything I use. There's not one thing I use consistently so I have no clue what it could be, if it were indeed an allergy of some sort.

[Lchristine22]

Hi there, I'm a 27 year old female and my story is similar to yours. I was prescribed Restasis back in January and everything was great up until June. I too became less diligent about putting the drops in, especially at night when I was exhausted. Please try not to be so hard on yourself. Things like this happen, especially when you start seeing such positive results. Unfortunately, I feel there is not enough education around dry eye. It sounds like you're doing everything you can. Keep researching and don't be afraid to get a 4th, 5th or 6th opinion. I live in Boston and I have an appointment at Korbs & Associates on Friday. If I learn anything new I will be sure to let you know. Stay strong!

I'm sorry to hear that, Ashley! It definitely is a struggle. I never knew how fortunate I was to have healthy eyes for so many years. I'd give anything to not be in pain 24/7. But yes, please update me on what you find out! I recently saw my doctor about a week ago and she was going to let me be part of a clinical study for a new drug they're coming out with and seeing great results with. Unfortunately, I got a call from their coordinator saying I didn't qualify due to other eye meds I'm currently on. I was so disappointed. However, I do have another appointment coming up and doc told me if I wasn't able to be part of clinical study she wanted to try lacrisert. (Gel inserts). I'm also hoping to try this new drug whenever the clinical studies are done and they are able to release it. All I know is that it's similar to restasis and supposed to help your eyes produce tears on their own. The good thing about the doctor I see is that they do their own studies so they're always up to date on the newest drugs for dry eye. This really gives me hope and I'll be sure to let you all know what I find out about the lacrisert gel inserts and any other new information.

[LaDiva]

Hi Lchristine,
Sorry to hear you are having such a difficult time. I had lasiks and then PRK about 7 years ago and developed tear deficiency, Ocular Rosacea and MGD two years after the surgery. I read that it is believed that about 22% of people who have these surgeries have poor outcomes. I used Restatsis for many years, but my eyes became so dry that the drops further inflamed them and actually made my eyes feel worse. Don't give up. I've been living with this for over 5 years, and it is miserable, but has gotten better. There are so many things you can try, and sometimes it is just a matter of hitting the right combination of things. Lizlou is right on target. You need a more complete diagnosis, which can take quite awhile. Also, not everyone will agree with your diagnosis. If you have a teaching college in the area, sometimes they have excellent staff who also take patients from the community at large. I think they tend to be more up-to-date and tend to be more willing to try new treatments and strategies. I hate to say this, but please consider getting some moisture glasses or goggles. You can wear them when alone if you aren't comfortable wearing them in public. They will help you to be much more comfortable and will also help conserve the health of the surface of your eye. Sending good wishes. Don't give up. You should get better, but it might take time.

[Lchristine22]

Hi Lchristine,
Sorry to hear you are having such a difficult time. I had lasiks and then PRK about 7 years ago and developed tear deficiency, Ocular Rosacea and MGD two years after the surgery. I read that it is believed that about 22% of people who have these surgeries have poor outcomes. I used Restatsis for many years, but my eyes became so dry that the drops further inflamed them and actually made my eyes feel worse. Don't give up. I've been living with this for over 5 years, and it is miserable, but has gotten better. There are so many things you can try, and sometimes it is just a matter of hitting the right combination of things. Lizlou is right on target. You need a more complete diagnosis, which can take quite awhile. Also, not everyone will agree with your diagnosis. If you have a teaching college in the area, sometimes they have excellent staff who also take patients from the community at large. I think they tend to be more up-to-date and tend to be more willing to try new treatments and strategies. I hate to say this, but please consider getting some moisture glasses or goggles. You can wear them when alone if you aren't comfortable wearing them in public. They will help you to be much more comfortable and will also help conserve the health of the surface of your eye. Sending good wishes. Don't give up. You should get better, but it might take time.

I'm honestly thinking I never should've had the LASIK, even though doctors don't seem to think that's the root of the problem. You're absolutely right though, it would be amazing to know for sure what exactly my diagnosis is. All of my doctors have suspected an allergy as well so I'm thinking of having allergy testing done to see if I can figure anything else out. As far as the goggles go where can I get them? Can they just be regular swimming goggle or...? I feel like they would benefit me to at least sleep with them on at night. My eyes are in desperate need of moisture and I'll do anything I can to ease the pain even a little bit. Thank you for your advice!

[grant555]

if you already tried an elimination diet with no success, then it seems less likely that it is an allergy, at least a food allergy. but should should definitely get allergy tested just to make sure (even though it is fairly unreliable). you should try and find a place that tests for all types of allergies, including chemicals.

have you tried tranquileyes for at night? if you can tolerate the mask, it would likely help you quite a bit if you wake up with your eyes burning. what part of the country are you in?

[grant555]

also, it's pretty common for people to report that restasis stops working for them. so i doubt its ineffectiveness has to do with you missing doses.

[LaDiva]

Hi Lcristine,
I buy my goggles from Rebecca at this website, and just buy the inexpensive dust busters for small face. She has a larger selection. I don't sleep in mine, so perhaps someone can give you a better idea of which goggles work best for nighttime. Here is the link to products: https://www.dryeyeshop.com/storefront.aspx Once you have a solid diagnoses, you will know the correct course of treatment. I went to three or four different doctors before going out of town to a specialist. There is a section here called "Plug a Doc" where people have recommended eye doctors who have helped them. That might be useful. Sending good vibes!

[Lchristine22]

if you already tried an elimination diet with no success, then it seems less likely that it is an allergy, at least a food allergy. but should should definitely get allergy tested just to make sure (even though it is fairly unreliable). you should try and find a place that tests for all types of allergies, including chemicals.

have you tried tranquileyes for at night? if you can tolerate the mask, it would likely help you quite a bit if you wake up with your eyes burning. what part of the country are you in?

Well. I tried the all natural diet but I was also using lotemax so I'm not sure which one was helping. I honestly think I'm going to try all natural again and see what happens. I'm just so desperate to feel better. I'm also considering other factors besides food allergies, like something in the atmosphere that I have no control over. I just have no idea what it could be if that's even the case. What are tranquileyes? All I know is that I'm so sick and tired of waking up with my eyes practically glued shut.

[Lchristine22]

Hi Lcristine,
I buy my goggles from Rebecca at this website, and just buy the inexpensive dust busters for small face. She has a larger selection. I don't sleep in mine, so perhaps someone can give you a better idea of which goggles work best for nighttime. Here is the link to products: https://www.dryeyeshop.com/storefront.aspx Once you have a solid diagnoses, you will know the correct course of treatment. I went to three or four different doctors before going out of town to a specialist. There is a section here called "Plug a Doc" where people have recommended eye doctors who have helped them. That might be useful. Sending good vibes!

Thank you so much for your help! Definitely going to check this site out!

[grant555]

if your eyes are worse when you wake up, you could be sleeping with your eyes partly open. tranquileyes is an eye mask that provides moisture all night. if you can tolerate the mask, i think it helps the vast majority of people who use it. otherwise, you might want to try other types of night eye masks to see if they help. check out eyeeco.com. or i think they are in this website's store as well that ladiva already mentioned.