Desperate for answers/advice

[Lchristine22]

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.

Okay, great thanks! I will definitely have to try them!

[melissalesley]

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.

Hi I can really relate to what you're saying I can't tell you how many times a day I think of quitting my job all because of this stupid dry eye, I worked my whole life to get where I am now and it's horrible how one thing can take all the enjoyment out of your life! The only thing I can say is that I've suffered the last 6 months and the only thing that has helped me has been taking 6x 200mg ipruprofen everyday consistently and the redness has calmed and its numbs you from the horrible feeling of your eyes. I know this is last ditch resort but I'm already there after 6 months I couldn't mentally take another day so this is what I'm doing-this is a chronic condition the same way people take long term medication for autheritis I'm taking long term painkillers for this problem until I get an opthamilogist appointment, message me if you want to talk or it's getting worse!

[melissalesley]

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.

Hi I can really relate to what you're saying I can't tell you how many times a day I think of quitting my job all because of this stupid dry eye, I worked my whole life to get where I am now and it's horrible how one thing can take all the enjoyment out of your life! The only thing I can say is that I've suffered the last 6 months and the only thing that has helped me has been taking 6x 200mg ipruprofen everyday consistently and the redness has calmed and its numbs you from the horrible feeling of your eyes. I know this is last ditch resort but I'm already there after 6 months I couldn't mentally take another day so this is what I'm doing-this is a chronic condition the same way people take long term medication for autheritis I'm taking long term painkillers for this problem until I get an opthamilogist appointment, message me if you want to talk or it's getting worse!

[Lchristine22]

Hi I can really relate to what you're saying I can't tell you how many times a day I think of quitting my job all because of this stupid dry eye, I worked my whole life to get where I am now and it's horrible how one thing can take all the enjoyment out of your life! The only thing I can say is that I've suffered the last 6 months and the only thing that has helped me has been taking 6x 200mg ipruprofen everyday consistently and the redness has calmed and its numbs you from the horrible feeling of your eyes. I know this is last ditch resort but I'm already there after 6 months I couldn't mentally take another day so this is what I'm doing-this is a chronic condition the same way people take long term medication for autheritis I'm taking long term painkillers for this problem until I get an opthamilogist appointment, message me if you want to talk or it's getting worse!

Thank you for your reply! I would message you but I'm not so sure I know how to on this thing. :/ my symptoms are getting worse and worse. I had to quit my job the other day because the air was killing my eyes. My son was flipping through a book the other day and the little draft of air absolutely killed my eyes as well. I'm almost positive that the LASIK surgery I had 6 years ago is the reason for all of my issues. I'm
Completely devastated that I did this to myself at 18 years old. After looking for other reasons for my dryness and coming up with nothing , this is why I have to blame the LASIK for my troubles. It's funny because most ophthalmologists won't tell me they believe it to be LASIK (bc my dry eyes didn't start until 3 years later) ...but then I notice they offer LASIK procedures at their clinics...it's almost like very few ophthalmologists want to bad mouth LASIK bc they've been told not to or something. I'm so angry. I am going to try the ibuprofen though. I need something to take the edge off of this severe pain.

[melissalesley]

Thank you for your reply! I would message you but I'm not so sure I know how to on this thing. :/ my symptoms are getting worse and worse. I had to quit my job the other day because the air was killing my eyes. My son was flipping through a book the other day and the little draft of air absolutely killed my eyes as well. I'm almost positive that the LASIK surgery I had 6 years ago is the reason for all of my issues. I'm
Completely devastated that I did this to myself at 18 years old. After looking for other reasons for my dryness and coming up with nothing , this is why I have to blame the LASIK for my troubles. It's funny because most ophthalmologists won't tell me they believe it to be LASIK (bc my dry eyes didn't start until 3 years later) ...but then I notice they offer LASIK procedures at their clinics...it's almost like very few ophthalmologists want to bad mouth LASIK bc they've been told not to or something. I'm so angry. I am going to try the ibuprofen though. I need something to take the edge off of this severe pain.

It's ok just know you're not alone in this there's so many people going through the same!! I'm so sorry to hear it's getting worse, my dry eyes seems to change week to week-sometimes I'll have a really good week and then others it will be terrible waking up to bright red eyes getting worse through out the day, it's hard to get to sleep too because my right eye feels like something's in it!! How is the ipruprofen going so far?? Have you seen a reduction in inflammation in the eye and comfort eased up a bit? I know this is so embarrassing but I got asked out on a date last week by someone and I actually felt like saying 'REALlY?? Even with these eyes !!! I was even sqinting so hard because they were hurting so it looked like I was angry, we have to keep going and I'm really praying it will clear up for all of us!! Have you found another job or better suited career path for the dry eyes? I was thinking of doing uni for 3 years to give myself a break from screens at work

[Lchristine22]

It's ok just know you're not alone in this there's so many people going through the same!! I'm so sorry to hear it's getting worse, my dry eyes seems to change week to week-sometimes I'll have a really good week and then others it will be terrible waking up to bright red eyes getting worse through out the day, it's hard to get to sleep too because my right eye feels like something's in it!! How is the ipruprofen going so far?? Have you seen a reduction in inflammation in the eye and comfort eased up a bit? I know this is so embarrassing but I got asked out on a date last week by someone and I actually felt like saying 'REALlY?? Even with these eyes !!! I was even sqinting so hard because they were hurting so it looked like I was angry, we have to keep going and I'm really praying it will clear up for all of us!! Have you found another job or better suited career path for the dry eyes? I was thinking of doing uni for 3 years to give myself a break from screens at work

[QUOTE=melissalesley;n198050]


Sorry it took me so long to get back to you, I've been on on an emotional roller coaster with my eyes! I have moments when I feel like giving up on life but I know that for my kids and myself I must keep going! I've recently started seeking a deeper relationship with God and that's honestly what has kept me going through all of this. I've tried taking a ton of supplements over the past few months and haven't noticed much of a difference but I'm going to keep taking them, as well as aleve to help with inflammation. After praying hard about what else I need to do somethings telling me to really go through with this juicing thing I've been wanting to try. I'm going to completely cut out everything as far as sugars(except natural), soy, wheat, gluten, and dairy...I was trying this before but fell weak every time and gave into temptation...but at this point I am willing to try anything because my eyes make NO tears and it has taken over my life. Something is telling me to stick with this and I'm going to do it and update you all on what I end up finding out. As of right now I'm still not working but I went ahead and applied for a recruiting job in an office..which should be much better for my eyes in the mean time. It's not going to be much fun sitting in a cubicle all day but for right now I have to do what I have to do. Thank you for asking! I hope you find something that better suits you as well! The struggle of dry eyes is so very real. Also, so happy to hear about your date...hopefully you went and enjoyed yourself! If there's one thing I've been told throughout all of this, it's that you don't look as awful as you feel. Having severe dry eyes has lead me to believe that I'm not as pretty as I once was and people have reassured me that it's only because I feel so awful...which, these people have had no reason to lie to me. I have to agree with them, if we're not feeling good about ourselves, we're not going to feel like we look good either. We have to stay positive and keep seeking ways to manage this horrible condition. I fully believe that there HAS to be something that will work...we just have to keep trying to find the things that work for us. I'll let you know in a few months if I'm noticing any changes. I'm going to be very strict with it so you may even hear from me sooner! Hope you're eyes are feeling better!

[PeterBelgian]

Yeah Ophtalmologist will never told you its lasik , they will told you : You have allergic eyes because they become more sensitive due to the operation. One even said to me i had those problems before LASIK. HA .. HA .. HA HA HA HA. I never had any conjunctivitis before LASIK , perfect eyes of a geek staying 14hrs+ on pc sometimes but yeah its not LASIK .

You have to try Autologeous serum if your eyes are that dry. Apparently it works well with Lasik sufferers. I will ask it to my doctor tomorrow. For the pain i advice you to take LORAZEPAM/ TEMESTA and just to sleep ZOLPIDEM ( Stilnoct ). Just to keep your mind clear cause this disease can give you some madness. I was mad barking at everyone at a time.

Whats your records ? Even if people said Schirmers is not that important , i feel like having a least 10 mm and + on it is important. Do you have MGD? Do you have a lot of inflammation? Did your cul - de -sac conjunctival is red or pink? Mines are always red YEHAAA.

Good luck

[waterbee]

[QUOTE=Lchristine22;n198740]

Sorry it took me so long to get back to you, I've been on on an emotional roller coaster with my eyes! I have moments when I feel like giving up on life but I know that for my kids and myself I must keep going! I've recently started seeking a deeper relationship with God and that's honestly what has kept me going through all of this. I've tried taking a ton of supplements over the past few months and haven't noticed much of a difference but I'm going to keep taking them, as well as aleve to help with inflammation. After praying hard about what else I need to do somethings telling me to really go through with this juicing thing I've been wanting to try. I'm going to completely cut out everything as far as sugars(except natural), soy, wheat, gluten, and dairy...I was trying this before but fell weak every time and gave into temptation...but at this point I am willing to try anything because my eyes make NO tears and it has taken over my life. Something is telling me to stick with this and I'm going to do it and update you all on what I end up finding out. As of right now I'm still not working but I went ahead and applied for a recruiting job in an office..which should be much better for my eyes in the mean time. It's not going to be much fun sitting in a cubicle all day but for right now I have to do what I have to do. Thank you for asking! I hope you find something that better suits you as well! The struggle of dry eyes is so very real. Also, so happy to hear about your date...hopefully you went and enjoyed yourself! If there's one thing I've been told throughout all of this, it's that you don't look as awful as you feel. Having severe dry eyes has lead me to believe that I'm not as pretty as I once was and people have reassured me that it's only because I feel so awful...which, these people have had no reason to lie to me. I have to agree with them, if we're not feeling good about ourselves, we're not going to feel like we look good either. We have to stay positive and keep seeking ways to manage this horrible condition. I fully believe that there HAS to be something that will work...we just have to keep trying to find the things that work for us. I'll let you know in a few months if I'm noticing any changes. I'm going to be very strict with it so you may even hear from me sooner! Hope you're eyes are feeling better!

Is this with the nutrabullet smoothie? I've just scene a functional nutritional therapist who's working a specific diet based on my diet and blood test results and she thought smoothie are a good addition to improving dry eye. I'm still waiting for the diet and tests which won't start until 2016 but like you I'm willing to completely change my diet to improve my situation.
One thing she did mention was the ideal of gluten and dry eye, which I've cut out before I replied, she asked how long and I said proudly it was around six weeks! Before she wisely told me you need a year of gluten free for it to be out of your system! So ill be making some big changes next year along with you.
As for thel lasik I've read quite a few medical papers on it,not connected to any firms that promotes it and the evidence points to the flap being fully healed by this stage (im not a doctor but have really taken an interest in the long term effects and asked many medical and independent optometrist I've discussed this with) so it may well be that it's allergy if it's been suggested (they must of found bumps under your lower lids to suggest this) so rather then living with the worry , stop and take a deep breath and tell your self everyday that you will find out what this allergic reaction may be related to and keep being strong. We all just have to keep on fighting and remember people do recover from dry eye. I've read it to many times for it not to be a real possibility for everyone, especially those of us who get fed up with doctors telling us no, and start looking for our own resolutions.xx

[LaDiva]

You might consider avoiding inflammatory foods such as sugar, carbs and alcohol. If you have Ocular Rosacea not all of the anti-inflammatory foods are possible. I cannot eat tomatoes and a number of other foods which generally combat inflammation, but have found some which don't mess with my Rosacea. Here is a food list: http://www.health.harvard.edu/stayin...t-inflammation Everyone is different, but for me, food choices make a huge difference.

[dryeyedad]

How are you doing now Lchristine?

My 21 year old daughter has tried many things recommended by her many optometrist and dry eye specialists including restasis, lotemax, lucarist, plugs, etc with little benefit.

It seems like there are many systemic issues that can cause dry eyes such as leaky gut, hormonal imbalances, heavy metals, and more. Dry Eye doctors seem to know little about these issues so you may want to dig into these with your primary care physician, various specialist, and a good naturopathic physician.

We have done this all with my daughter and she has recently been diagnosed with chronic lyme disease, which is likely the root cause of her severe dry eyes.

Don't stop digging, you have to be a detective! Also, you didn't cause this problem by not being regular with restasis. Something caused you to need restasis, and that is what caused your dry eyes--don't beat yourself up.

[Lchristine22]

Hey all,

I want to reply to each and every one of you but I find it's hard to from my phone so I'll just make a new post. Things are still not good over here but I'm trying so hard to hang in there. I don't know if you all are familiar with the new dry eye drug Xiidra but I have recently tried that. Insurance however doesn't cover it so I only tried the samples they were able to give out at my doctors office. They lasted me about 3 weeks and only seemed to make my eyes 100 times worse. I would have been willing to try them for longer if my insurance would've covered it but they just won't. They won't even cover my Restasis most of the time..go figure. Why do we even need insurance if they won't cover anything we actually need?! Just ridiculous. Anyway, I'm still clueless as to what the true cause of my dry eyes is. I've been tested for Sjogren's Syndrome because I have had tons of the symptoms but my bloods were negative. My optha. Wants me to have the lip biopsy done but honestly I don't want to pay for that right now when all they're going to do is treat the symptoms anyway. Lasik of course still isn't out of the question and honestly I just may never know the true cause. I have ordered a leaky gut program made by Dr. Josh Axe to try as well. I will update you all after I start the program and when I see results. I honestly spend most of my days just researching the different causes of dry eyes and how I can improve them...it's seriously become an obsession just so I can eventually feel somewhat better! Anyone else do this? I'm sure you all are just as hungry for more information as I am. I just can't get enough and want to explore every possibility of causes and cures! The me before dry eyes was such a go getter and happy and positive and outgoing and the me now is just depressed 24/7. Before I try the leaky gut program I am eager to try acupuncture. I am calling an acupuncturist today who has been known to treat dry eyes in the past so I will let you all know how everything goes. I've researched how acupuncture works and how naturopaths look at the whole body vs just one area...I am so curious to see if she will be able to tell me anything else that may be causing this and look forward to keeping you all updated. Thank you for the suggestions and information and just your all's support in general. If there's anything that keeps me going it's knowing that I'm not alone in this every day battle! Thanks again, everyone. <3

[waterbee]

I'm obsessed too! I actually have a twitter where I link all my ideas and readings and I have over 1k of tweeted lol (though I'm also looking at Lyme dieases etc too)
there are so many possibilities!

[waterbee]

How are you doing now Lchristine?

My 21 year old daughter has tried many things recommended by her many optometrist and dry eye specialists including restasis, lotemax, lucarist, plugs, etc with little benefit.

It seems like there are many systemic issues that can cause dry eyes such as leaky gut, hormonal imbalances, heavy metals, and more. Dry Eye doctors seem to know little about these issues so you may want to dig into these with your primary care physician, various specialist, and a good naturopathic physician.

We have done this all with my daughter and she has recently been diagnosed with chronic lyme disease, which is likely the root cause of her severe dry eyes.

Don't stop digging, you have to be a detective! Also, you didn't cause this problem by not being regular with restasis. Something caused you to need restasis, and that is what caused your dry eyes--don't beat yourself up.

Me too! Also found out I have Lyme! Any luck after treatment? What treatment has she had?