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Summary: I did lasik in 2005. In 2011 corneal evaporative hyperalgesia kicked in. What worked: 1) moisture chamber glasses; 2) control of the environment (at home, at work and humid town); 3) Softwares to darken computer screens; 4) I think omega 3 has helped a little bit. 5) Time. I think my eyes needed a lot of time protected, with low stress to recover in a way I can have a normal life again.
Yes, fortunately I have had a triumph story.
I'll try to tell you chronologically.
2005 - I did Lasik. Everything was fine. I never had to use artificial tears before or after the surgery. No photophobia either.
2011 - I worked for six months with a strong air conditioner blowing straight into my eyes. September the problems started. In november I went to two or three different doctors, but they thought it was just a usual dry eye problem and prescribed eye drops. The eye drops were ineffective. Actually they got me worse. During my years of ordeal I had tried 9 different eye drops and eye gels. All of them got me worse, so I quit the eyedrops in 2012.
Well, the burning feeling were unbearable, even though I was living and working 100-200 meters from the sea, in the moistest place imaginable I started drinking a lot of water and tryed coconut water and some homeopahtic eye drop, without success.
So I found this forum and in december Ipurchased moisture chamber glasses. It was a clear lenses Wiley-X Airage (I found out in november that I had again some astigmatism). I wore it at work.
2012 - I tryed whey protein (no effects). Life was hard because of my eyes. In May I moved to other city, because of a new and better job. But the new town was very dry, mainly in the winter, and I was still working in a room with air conditioner. I was wearing the Wiley-X only at home. At work I was kind of shy to wear it. I think I was a little bit scared showing such a health problem in a new job. Outdoors I wore just a simple sunglasses. During 2012 I tryed Triphala, Restasis, coconut oil, started taking four capsules of fish oil (Omega 3). I tryed acupuncture also. I think Triphala worked during a month or so. I still take fish oil, maybe I would be worse without it, I don't know. I started doing warm compresses and did massages in the eyelids. The compresses gave me some relief. Sun, steam, anything warm relieves the pain (the burning feeling) in my eyes.
Well, I read Perry Rosenthal's article "The Corneal Pain System" and finally I found there the explanation for my problem. None doctor I visited could understand my pain, the high symptons and the low clinical signs. I had in general low TBUT, low Schirmer, but none erosions a no red eyes, no visual signs of inflamation in the eyes or in the eyelids, despite I didn't have much melbomium from my eyelids, said one doctor. What I found in Rosenthal's research is that I have what he calls corneal evaporative hyperalgesia. My cornea nerves were not working properly, sending signs of pain, and since they have thermosensors that explained why with warm compresses, sun, heat and steam I feel relieve.
By the end of 2012 I was feeling the initial symptons of chronic fatigue.
2013 - My food was gluten free for six months and I took 1,5 liter of Kefir during that six months or more, without feeling better. I start taking Vitamin D, 5000 UI per day. I (and some doctors) recommend 5000 UI of vitamin D for genera health. if it doesn't improve your eyes, at least you won't be sick very often.
Well, the chronic fatigue was as debilitating as my eyes problem. My so called life was miserable. Searching myself I found out my fatigue was due to too much and long stress caused by the eyes pain. My adrenal glands were stressed and were not producing hormones as they should. It was hard to find a doctor who recognize chronic fatigue as a disease. The only exam that shows it is the hormonal test through saliva, and most doctors don't believe it in Brazil. Well, I spent tons of money doing a treatment for the fatigue, with a integral doctor, but with little to none results.
In May of that year I bought Wiley-X Airage with dark lenses. That made a real improvement in my life because I could go and stay outdoors without such anxiety and pain. I regret I didn't take the obvious decision of buying it long before. 2013 was probably the most miserable year of my life. It was a hell on earth.
2014 - Luckly the air conditioner at my work was broken all year. I tried omega 7 for my eyes but it didn't work. In the second half of the year I started a treatment for chronic fatigue with another doctor and I started getting better. Basically I'm taking a high dose of pregnonelone to get rid of the fatigue. I suppose I will need to take it for the rest of my life.
2015 - I decided go back to the city where my family and friends live. I thought the very humid weather would do well to my eyes and getting in touch with friends and family would help to improve more from the fatigue. And I was right!.
During the 3 years before all I could think of was about my eyes. Because it was pain all the time (except when sleeping). Now I could focus in other things, as in a normal life.
2016 - I can say last year I started having a full life again. Ok, I had (an still have) control of my work and home environments, and that was crucial. I work in a individual room, with individual air conditioner (that I keep off all the time).
In august I traveled overseas in vacation, attending to a four-day punk rock festival in England. It is a tiring thing to do even to young healthy people (I was 42 last year), and I couldn't imagine doing it three or two years before. I had the four most enjoyable days of my adult life with cornea hyperalgesia! I got it under control! I was free from the chronic fatigue either, I can say 100%. (ok, maybe 95%)
In the second half of the year was plain that my eyes were improving, since I could stand many times in outdoors places without the Wiley-X. For example, walking on the streets at night or chatting with friends in outdoors bars. And air conditioners usually were not hurting as much as before. I could even being in a place with a fan without the Wiley-X and it was not such a worry. My photophobia was much much better compared with it was years ago.
I fought against the neoliberal coup d'etat in Brazil. I was engaged organizing demonstrations, went through clouds of tear gas... My eyes were not stopping me doing anything anymore.
March 2017 - I went to a friends party. I decided I would let my moisture chamber glasses at home (I have a 7eye Viento nowadays). For the first time in the last years I would go out without my "crutches". No worry there was air conditioner on the friends car. The party was in a beautiful place, close to the sea. Beautiful full moon night, without wind. It was most part outdoors. My eyes didn't hurt. But my heart was hurting. The girl I liked was with other guy at the party. We knew each other last year, fighting the coup. My problems were not my eyes anymore. I got involved in life again.
The next day I went to a outdoor restaurant with friends at evening, without the moisture chamber glasses either. A whole weekend without touching them. Yeas, I can do it without them. But of course I still keep going outdoors with them, because I need to keep my eyes under control and I don't want to have a set back. No big deal wearing that kind of sunglasses outdoors.
And I can stand any time I want in front of the computer writing this.
2012, 2013 and 2014 were for sure the wrosts years of my life. We here knows what is to live (or to survive) without heatlh. What a torture is living each day with pain in the eyes. But it is possible to get better and recover a normal life. I know I am lucky to be able to choose a moist city to live and with no air conditioner at work. It may took a while, but yes, we can improve.
Thank you very much Rebecca and all people in Dry Eye Talk. Without you I don't know if I could do it.
Yes, fortunately I have had a triumph story.
I'll try to tell you chronologically.
2005 - I did Lasik. Everything was fine. I never had to use artificial tears before or after the surgery. No photophobia either.
2011 - I worked for six months with a strong air conditioner blowing straight into my eyes. September the problems started. In november I went to two or three different doctors, but they thought it was just a usual dry eye problem and prescribed eye drops. The eye drops were ineffective. Actually they got me worse. During my years of ordeal I had tried 9 different eye drops and eye gels. All of them got me worse, so I quit the eyedrops in 2012.
Well, the burning feeling were unbearable, even though I was living and working 100-200 meters from the sea, in the moistest place imaginable I started drinking a lot of water and tryed coconut water and some homeopahtic eye drop, without success.
So I found this forum and in december Ipurchased moisture chamber glasses. It was a clear lenses Wiley-X Airage (I found out in november that I had again some astigmatism). I wore it at work.
2012 - I tryed whey protein (no effects). Life was hard because of my eyes. In May I moved to other city, because of a new and better job. But the new town was very dry, mainly in the winter, and I was still working in a room with air conditioner. I was wearing the Wiley-X only at home. At work I was kind of shy to wear it. I think I was a little bit scared showing such a health problem in a new job. Outdoors I wore just a simple sunglasses. During 2012 I tryed Triphala, Restasis, coconut oil, started taking four capsules of fish oil (Omega 3). I tryed acupuncture also. I think Triphala worked during a month or so. I still take fish oil, maybe I would be worse without it, I don't know. I started doing warm compresses and did massages in the eyelids. The compresses gave me some relief. Sun, steam, anything warm relieves the pain (the burning feeling) in my eyes.
Well, I read Perry Rosenthal's article "The Corneal Pain System" and finally I found there the explanation for my problem. None doctor I visited could understand my pain, the high symptons and the low clinical signs. I had in general low TBUT, low Schirmer, but none erosions a no red eyes, no visual signs of inflamation in the eyes or in the eyelids, despite I didn't have much melbomium from my eyelids, said one doctor. What I found in Rosenthal's research is that I have what he calls corneal evaporative hyperalgesia. My cornea nerves were not working properly, sending signs of pain, and since they have thermosensors that explained why with warm compresses, sun, heat and steam I feel relieve.
By the end of 2012 I was feeling the initial symptons of chronic fatigue.
2013 - My food was gluten free for six months and I took 1,5 liter of Kefir during that six months or more, without feeling better. I start taking Vitamin D, 5000 UI per day. I (and some doctors) recommend 5000 UI of vitamin D for genera health. if it doesn't improve your eyes, at least you won't be sick very often.
Well, the chronic fatigue was as debilitating as my eyes problem. My so called life was miserable. Searching myself I found out my fatigue was due to too much and long stress caused by the eyes pain. My adrenal glands were stressed and were not producing hormones as they should. It was hard to find a doctor who recognize chronic fatigue as a disease. The only exam that shows it is the hormonal test through saliva, and most doctors don't believe it in Brazil. Well, I spent tons of money doing a treatment for the fatigue, with a integral doctor, but with little to none results.
In May of that year I bought Wiley-X Airage with dark lenses. That made a real improvement in my life because I could go and stay outdoors without such anxiety and pain. I regret I didn't take the obvious decision of buying it long before. 2013 was probably the most miserable year of my life. It was a hell on earth.
2014 - Luckly the air conditioner at my work was broken all year. I tried omega 7 for my eyes but it didn't work. In the second half of the year I started a treatment for chronic fatigue with another doctor and I started getting better. Basically I'm taking a high dose of pregnonelone to get rid of the fatigue. I suppose I will need to take it for the rest of my life.
2015 - I decided go back to the city where my family and friends live. I thought the very humid weather would do well to my eyes and getting in touch with friends and family would help to improve more from the fatigue. And I was right!.
During the 3 years before all I could think of was about my eyes. Because it was pain all the time (except when sleeping). Now I could focus in other things, as in a normal life.
2016 - I can say last year I started having a full life again. Ok, I had (an still have) control of my work and home environments, and that was crucial. I work in a individual room, with individual air conditioner (that I keep off all the time).
In august I traveled overseas in vacation, attending to a four-day punk rock festival in England. It is a tiring thing to do even to young healthy people (I was 42 last year), and I couldn't imagine doing it three or two years before. I had the four most enjoyable days of my adult life with cornea hyperalgesia! I got it under control! I was free from the chronic fatigue either, I can say 100%. (ok, maybe 95%)
In the second half of the year was plain that my eyes were improving, since I could stand many times in outdoors places without the Wiley-X. For example, walking on the streets at night or chatting with friends in outdoors bars. And air conditioners usually were not hurting as much as before. I could even being in a place with a fan without the Wiley-X and it was not such a worry. My photophobia was much much better compared with it was years ago.
I fought against the neoliberal coup d'etat in Brazil. I was engaged organizing demonstrations, went through clouds of tear gas... My eyes were not stopping me doing anything anymore.
March 2017 - I went to a friends party. I decided I would let my moisture chamber glasses at home (I have a 7eye Viento nowadays). For the first time in the last years I would go out without my "crutches". No worry there was air conditioner on the friends car. The party was in a beautiful place, close to the sea. Beautiful full moon night, without wind. It was most part outdoors. My eyes didn't hurt. But my heart was hurting. The girl I liked was with other guy at the party. We knew each other last year, fighting the coup. My problems were not my eyes anymore. I got involved in life again.
The next day I went to a outdoor restaurant with friends at evening, without the moisture chamber glasses either. A whole weekend without touching them. Yeas, I can do it without them. But of course I still keep going outdoors with them, because I need to keep my eyes under control and I don't want to have a set back. No big deal wearing that kind of sunglasses outdoors.
And I can stand any time I want in front of the computer writing this.
2012, 2013 and 2014 were for sure the wrosts years of my life. We here knows what is to live (or to survive) without heatlh. What a torture is living each day with pain in the eyes. But it is possible to get better and recover a normal life. I know I am lucky to be able to choose a moist city to live and with no air conditioner at work. It may took a while, but yes, we can improve.
Thank you very much Rebecca and all people in Dry Eye Talk. Without you I don't know if I could do it.
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