Feeling Discouraged..

[JenessaP]

In my 3 year battle with dry eye I have found this site so encouraging when I felt really down and alone in this mess. I have always been reading other people’s stories trying to relate them to my journey and learn what has helped/ not helped but I feel that it’s time I post my own.

I am currently 25 years old and wore contacts for about 10 years up until I was 22. In 2013 I had moved away from home to start university studying to become a nurse. The new city was very dry, cold and windy. During school I had been living with a cat and found I was allergic to it so I was taking daily antihistamines for two months. I was also on birth control. In 2015 I had gone backpacking to Europe and noticed at night I could not wear my contacts as they were blurring. I have always been careful/ clean with my lenses but sometimes when travelling I wore them too long and twice I had accidentally slept in them. I had no symptoms of dryness or pain with my lenses I just simply couldn’t see because they were blurry.

So I after the trip I went home and the optometrist diagnosed me with dry eye. She prescribed me lotemax for 2 weeks with systane drops and told me I’d be back in contacts in two weeks. I desperately wanted to wear contacts and after Lotamax I could not wear my contacts still but wearing glasses I had no dryness. So I decided I wanted LASIK and researched the best surgeon and had booked my surgery in advance. I was determined I was not going to wear glasses my whole life and I couldn’t wait to get the surgery done... LUCKILY(at the time I was devastated) I was not eligible for surgery due to the shape of my cornea. They had NOT mentioned anything about my already dry eye which at the time was TBUT of 2-3 secs. in both eyes. So I was stuck with glasses, but after sometime I really grew to like them! I had very minor dryness with glasses so I continued with my life not thinking of dry eye.

However not too long after I would get days where I had insane burning and I couldn’t even look at my phone or computer. These symptoms usually happened in the winter and after practicum in the hospital. So I went back to the optometrist and they put me in plugs and told me to take omega 3s. During this time I also I had Candida really bad it was everywhere in my body. So I drastically changed my diet to the point where I only ate LOTS of chicken and veggies and lost about 50lbs. I also went off birth control thinking it could have caused Candida.

For about 1 and half years my dry eye had completely vanished. Not to the point where I could wear contacts and I would still have some minor dryness in the winter and when I was a student in the hospital. My Candida took about 7 months to go away and by that I mean my symptoms. I started slowly reintroducing foods and within 4 months I was eating everything again. Fast forward to 2017 I got a student nurse job in the summer working in the hospital. At the end of the shifts I noticed my eyes would burn which I thought maybe was my makeup.

Then in my last year of school I was working in a mental health hospital and for whatever reason this place dried the crap out of my eyes. If office air is bad, hospitals are the WORST. It was like being on an airplane constantly. My eyes were burning so bad I had to put drops in every 10 mins. Hospitals purposely drop the humidity and with all the chemicals and cleaning supplies it did a big number on my ocular surface. I had 3 more months of school to go and then I was done my 5 year degree. I told myself I just needed to get past this and I would never work in a hospital again. At this point I could tolerate anywhere but the hospital or airplanes. After each shift I would cry on the phone to my parents that I needed to quit because my eyes were so bad. Everyone told me to keep going as when I left the hospital my eyes would go back to normal.

At this point I only had two months to go. It was torture for me going back to the hospital each day.. but I was so close to graduating I couldn’t quit with 2 months left. I even had my shifts spread out to give my eyes a break. I had gone to multiple optometrists and even an ophthalmologist who said my signs didn’t match my symptoms. My eyes weren’t very red and my TBUT was 5-6 but my eyes hurt SO BAD. I had the burning, shooting pains and using drops every 10 mins. I finally finished school and had hoped my eyes would go back to what they were but they didn’t. In fact I felt they got worse. At this point I couldn’t drive, watch TV or even read my eyes just BURNED.

I went to my medical doctor who referred me to a corneal specialist 2 hrs away. The specialist diagnosed me with MGD, aqueous deficient, ocular rosacea. FINALLY someone told me what’s going on! So frustrating that it took a MD to send me somewhere rather than any of the other eye doctors. I had probably seen 6-7 docs before I finally got a diagnosis which seems to be the same for many of us on this site. I am feeling discouraged because it’s been 5 months out of the hospital and I don’t feel that much better. I have now had to quit my job as a nurse, I can’t finish my exam, moved back with my parents 12 hrs away from my fiancé and I find myself basically home bound. I still can’t drive, or watch TV or read even being in a car as a passenger is difficult. EVERYWHERE bothers me now.. grocery stores, hotels etc. I felt that it was my fault that I didn’t quit. Before the hospital I could watch as much tv as I wanted, drive just fine I felt normal and comfortable. And now I am worried that I will never be the same again.

The pain from the dryness somedays is unbearable and I have felt suicial. I am looking for any advice or insight or words of encouragement....
Heres what I have done so far..
Xiidra -6months helps but still so dry
IPL - 6 treatments have had some success but after a week I usually go back to the same.
Serum tears 50%- helps with pain
Occunox - at night
Humidifier
Omega 3s
Candida Diet -2 weeks so far
Custom made moisture chamber glasses- LOVE them I wear them all the time, but eyes are still dry

[edmunder]

I will write more later but for now:

whats your gland structure like? 6 IPL you must know what your meibography looks like.

Have you tried goggles? At least for at home?

How aqueous deficient are you? Have you tried plugs?

Next big step would be sclerals.

[JenessaP]

edmunder About 50% of my lower glands have atrophied unfortunately. But now my glands are expressing well after the procedure however my lipid thickness is very thin. After the 5th procedure I actually had about 5 days where I felt completely normal, I could even drive comfortably but after about a week I went back to the same symptoms almost seemed worse. I am still going for another IPL next week seems to be the only thing that’s really helping. I did have plugs in all four at one point which I did find minor relief with but I also feel it may have exacerbated the inflammation from the hospital. I will be getting temporary plugs again after the next IPL. I do have custom made moisture chambers that I wear all the time!! They are a big help. I do know that I am aqueous deficient and according to their testing I have a low tear film for my age. I have been tested for Sjogens but came back negative. My osmolarity was really high 339 and 331 so I think my biggest problem some days is the burning. I don’t know if it’s changed after the IPL. Yes I do have an appointment for sclerals but it’s not for another month.

[Topher3]

How are your top eyelid glands %??

[JenessaP]

Topher3 My top lids are good so they say! I can see on the photos they are nice and long but my lower lids are very short.

[MGD1701]

the only way to get under control is an accurate diagnose.
Maybe you could find some useful info in my old post.
http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

[Guest]

Don't feel discouraged. I started having problems with my eyes (dry eyes, blepharitis, ) when I was 16. That was 25 years ago. You name it, I tried it with limited success. I would be lying if I said it has not negatively impacted my life but I am confident a viable solution for me is around the corner.

[Guest]

How well do you sleep? Do you wake up a lot to put drops in? Are you worse in the morning or are you good in the morning and get worse as the day progresses?

I think for most of us on the forum, it’s trying to find the cause of the problem. For me, I was sleeping with my eyes open. Now that I’m taping my eyes shut at night and controlling inflammation, tings are better. Not perfect, but better. I’m still looking for some relief from some lingering issues, but finding my root cause has changed things a lot.

Hope you get some relief.

[ebi1368]

In my 3 year battle with dry eye I have found this site so encouraging when I felt really down and alone in this mess. I have always been reading other people’s stories trying to relate them to my journey and learn what has helped/ not helped but I feel that it’s time I post my own. I am currently 25 years old and wore contacts for about 10 years up until I was 22. In 2013 I had moved away from home to start university studying to become a nurse. The new city was very dry, cold and windy. During school I had been living with a cat and found I was allergic to it so I was taking daily antihistamines for two months. I was also on birth control. In 2015 I had gone backpacking to Europe and noticed at night I could not wear my contacts as they were blurring. I have always been careful/ clean with my lenses but sometimes when travelling I wore them too long and twice I had accidentally slept in them. I had no symptoms of dryness or pain with my lenses I just simply couldn’t see because they were blurry. So I after the trip I went home and the optometrist diagnosed me with dry eye. She prescribed me lotemax for 2 weeks with systane drops and told me I’d be back in contacts in two weeks. I desperately wanted to wear contacts and after Lotamax I could not wear my contacts still but wearing glasses I had no dryness. So I decided I wanted LASIK and researched the best surgeon and had booked my surgery in advance. I was determined I was not going to wear glasses my whole life and I couldn’t wait to get the surgery done... LUCKILY(at the time I was devastated) I was not eligible for surgery due to the shape of my cornea. They had NOT mentioned anything about my already dry eye which at the time was TBUT of 2-3 secs. in both eyes. So I was stuck with glasses, but after sometime I really grew to like them! I had very minor dryness with glasses so I continued with my life not thinking of dry eye. However not too long after I would get days where I had insane burning and I couldn’t even look at my phone or computer. These symptoms usually happened in the winter and after practicum in the hospital. So I went back to the optometrist and they put me in plugs and told me to take omega 3s. During this time I also I had Candida really bad it was everywhere in my body. So I drastically changed my diet to the point where I only ate LOTS of chicken and veggies and lost about 50lbs. I also went off birth control thinking it could have caused Candida. For about 1 and half years my dry eye had completely vanished. Not to the point where I could wear contacts and I would still have some minor dryness in the winter and when I was a student in the hospital. My Candida took about 7 months to go away and by that I mean my symptoms. I started slowly reintroducing foods and within 4 months I was eating everything again. Fast forward to 2017 I got a student nurse job in the summer working in the hospital. At the end of the shifts I noticed my eyes would burn which I thought maybe was my makeup. Then in my last year of school I was working in a mental health hospital and for whatever reason this place dried the crap out of my eyes. If office air is bad, hospitals are the WORST. It was like being on an airplane constantly. My eyes were burning so bad I had to put drops in every 10 mins. Hospitals purposely drop the humidity and with all the chemicals and cleaning supplies it did a big number on my ocular surface. I had 3 more months of school to go and then I was done my 5 year degree. I told myself I just needed to get past this and I would never work in a hospital again. At this point I could tolerate anywhere but the hospital or airplanes. After each shift I would cry on the phone to my parents that I needed to quit because my eyes were so bad. Everyone told me to keep going as when I left the hospital my eyes would go back to normal. At this point I only had two months to go. It was torture for me going back to the hospital each day.. but I was so close to graduating I couldn’t quit with 2 months left. I even had my shifts spread out to give my eyes a break. I had gone to multiple optometrists and even an ophthalmologist who said my signs didn’t match my symptoms. My eyes weren’t very red and my TBUT was 5-6 but my eyes hurt SO BAD. I had the burning, shooting pains and using drops every 10 mins. I finally finished school and had hoped my eyes would go back to what they were but they didn’t. In fact I felt they got worse. At this point I couldn’t drive, watch TV or even read my eyes just BURNED. I went to my medical doctor who referred me to a corneal specialist 2 hrs away. The specialist diagnosed me with MGD, aqueous deficient, ocular rosacea. FINALLY someone told me what’s going on! So frustrating that it took a MD to send me somewhere rather than any of the other eye doctors. I had probably seen 6-7 docs before I finally got a diagnosis which seems to be the same for many of us on this site. I am feeling discouraged because it’s been 5 months out of the hospital and I don’t feel that much better. I have now had to quit my job as a nurse, I can’t finish my exam, moved back with my parents 12 hrs away from my fiancé and I find myself basically home bound. I still can’t drive, or watch TV or read even being in a car as a passenger is difficult. EVERYWHERE bothers me now.. grocery stores, hotels etc. I felt that it was my fault that I didn’t quit. Before the hospital I could watch as much tv as I wanted, drive just fine I felt normal and comfortable. And now I am worried that I will never be the same again. The pain from the dryness somedays is unbearable and I have felt suicial. I am looking for any advice or insight or words of encouragement....
Heres what I have done so far..
Xiidra -6months helps but still so dry
IPL - 6 treatments have had some success but after a week I usually go back to the same.
Serum tears 50%- helps with pain
Occunox - at night
Humidifier
Omega 3s
Candida Diet -2 weeks so far
Custom made moisture chamber glasses- LOVE them I wear them all the time, but eyes are still dry

How long have you been using Occunox? Are your eyelid inflamed?

I also have occular rosacea and was using Occunox for 2 weeks. I found that it was making my eyes much worse.

[JenessaP]

Dowork123 I actually sleep quite well! I usually put in Xiidra and then the occunox before bed along with having my humidifier going. This seems to help a lot at night time. However, before I started working at the hospital I never had problems at night so I feel that if I did sleep with my eyes open I would have had the problem before, but thanks for the idea! Before IPL I found that morning was the best for me and then as the day went on my eyes would dry out more which everyone “said” was more aqueous deficient. But now I feel that my eyes are all over the place and I can’t really find a pattern to this MADNESS! sometime I’ll be worse in the morning and better in the evening or good throughout the whole day and just go up and down. I do know that I am a partial blinker so maybe it depends what I am doing and how often I remember to do blinking exercises. I really try and avoid a lot of focus work nowadays like driving, watching TV etc because it bugs the crap out of my eyes. I’m just hoping that one day I can get to a point where these activities could be comfortable even just for an hour...

[Guest]

Partial blinkers usually also have nocturnal lagopthalmos. However, if you wake up feeling good most days, I don’t think that’s an issue. It could be happening intermittently, but I wouldn’t bank on it. This is a tough one. Have you ever had your lids flipped? Do you have papillary conjunctivitis by chance? I know I got this from wearing contacts. I believe contacts caused my lid issues early in life and I’m paying for it now. Well, that’s one of many things that probably caused this.

I think so far you have a good diagnosis, it may just be a matter of time. Have you ever taken a course of steroids? Did you respond well?

[JenessaP]

Dowork123 Nights are getting better for me after the IPL but it’s not always consistent. I used to sleep with an eye mask but I kept taking it off in my sleep so I might try again. Im not sure if you’ve ever had this but sometimes when my eyes are really sore I have a hard time closing them at night? It’s almost as if the muscle is too tired to keep my eyes shut. But it’s only on bad days. What do you use to tape your eyes? I did initially have papillary conjunctivitis after my first experience with dry eye when I was wearing contacts, however this went away after I stopped wearing them. I also think contacts contributed to my gland dysfunction amongst other things.. I just find it interesting that if contacts was a huge factor that it would be both my upper and lower glands that would have more damage not just my lowers. I did respond really well to steroids I was on Lotamax for about 3 weeks in June and then after each IPL session I was on Prednisolone for one week. But after a while steroids made my eyes feel like they were going cross eyed and I would get a lot of pressure in my ears so I don’t know if I am a steroid responder or what but I stopped using them. But makes me think that the hospital just inflamed the crap out of my eyes and that if somehow I could get it under control then I could find some relief!

[Guest]

Dowork123 Nights are getting better for me after the IPL but it’s not always consistent. I used to sleep with an eye mask but I kept taking it off in my sleep so I might try again. Im not sure if you’ve ever had this but sometimes when my eyes are really sore I have a hard time closing them at night? It’s almost as if the muscle is too tired to keep my eyes shut. But it’s only on bad days. What do you use to tape your eyes? I did initially have papillary conjunctivitis after my first experience with dry eye when I was wearing contacts, however this went away after I stopped wearing them. I also think contacts contributed to my gland dysfunction amongst other things.. I just find it interesting that if contacts was a huge factor that it would be both my upper and lower glands that would have more damage not just my lowers. I did respond really well to steroids I was on Lotamax for about 3 weeks in June and then after each IPL session I was on Prednisolone for one week. But after a while steroids made my eyes feel like they were going cross eyed and I would get a lot of pressure in my ears so I don’t know if I am a steroid responder or what but I stopped using them. But makes me think that the hospital just inflamed the crap out of my eyes and that if somehow I could get it under control then I could find some relief!

I have had exactly what you’re speaking about in both eyes, and I currently still have it in the right eye pretty bad. I describe it almost like eyelid paralysis. I want the lid to move I’m trying to make it move but it just does not want to close all the way. I’m still trying to figure out what’s causing it. Is nerve damage, is it just simply exposure from keeping the eye open at night, is it just simply inflammation, a little bit of all that. I have no clue. But that’s why keep going to doctors trying to figure out what’s going on with these eyes.

So I use the mepitac Tape from the dry eye shop. It’s the only tape I’m not allergic to. I’m still having issues with tape though by the way. I seem to get a lot of glare in my left eye when I wake up after taping Mayeye. My vision is also blurry in the morning. My corneal specialist told me it was probably because I’m cutting off oxygen to the cornea. But he also said it’s better to cover the Ivan to leave it exposed. So you know everything I do is a problem. Every cure also causes another issue.

For me, inflammation is the biggest killer. I mean it just destroys my eyes. I cannot handle the burning, it’s the worst symptom. Since my doctor found out that I was sleeping with my eyes open. For me, inflammation is the biggest killer. I mean just destroys my eyes. I cannot handle the burning, it’s the worst symptom. Since my doctor found out that I was sleeping with my eyes open. He wants me on steroids for six months to calm the inflammation and get everything working properly again. My hope is that once I stop the steroids, things don’t revert quickly back to that painful burning hell. Trying to be hopeful.

[Meibum Ian]

I have had exactly what you’re speaking about in both eyes, and I currently still have it in the right eye pretty bad. I describe it almost like eyelid paralysis. I want the lid to move I’m trying to make it move but it just does not want to close all the way. I’m still trying to figure out what’s causing it. Is nerve damage, is it just simply exposure from keeping the eye open at night, is it just simply inflammation, a little bit of all that. I have no clue. But that’s why keep going to doctors trying to figure out what’s going on with these eyes.

I know I've mentioned this before, but I think an Oculoplastic surgeon might be best suited for examining this specific problem.

[Guest]

I know I've mentioned this before, but I think an Oculoplastic surgeon might be best suited for examining this specific problem.

That may be my next stop then, no lie. I’m exhausting all other fields of medicine.