Long road, hope at the end

[Rojzen]

through the tunnel and ready for new challenges

Autumn's eloquent recounting is a gift for anyone at any stage of living with DES. The courage it takes even to begin the process of seeking healing, and then to persist, in the face of regular setbacks and discouragements, is more than I can describe to anyone who hasn't lived through this. Autumn has given me words and images I can now use, and the message is now destined for wider and wider audiences.

I want to interject that since I emerged from my tunnel, last year, after several months on Dwelle, my progress has never halted or reversed. Each of us has his/her own journey to map, towards the solution to our syndrome, but it is hard for me to imagine not giving Dwelle a long and hard college try, as part of ANY DES journey. So 14 months into my reliance on Dwelle, for those wondering, I am still doing immensely well with my DES. Some months ago, I left my moisture chambers behind, and now I've even invested in a new pair of glasses that cannot be converted into moisture chambers at all.

I am poking my head in here at the Zone also to say that after a brief digression to FreshKote (aka Clinitas Ultra, in Europe), I have had to conclude that Dwelle is a superior product for me. Its chemistry is somehow much better suited, even though my lipid layer is very deficient, and one would think I could benefit from the lipid in FreshKote. . .

In any case, bravo to Autumn and to all who have the courage to continue. I would never wish to hold out false hope, and so those who sometimes doubt that there will ever be real relief and real progress, in our condition, can safely believe my assurance that recovery is often more than possible (:^)...

[jenny2008]

Do you use Dwelle throughout the day as well?

[Rojzen]

Dwelle as often as needed, and avoidance of other products

Oh, yes, Jenny. . .I use Dwelle any time I need something, and more importantly, I don't use other products (except for Dr. Holly's NutraTear) because I feel that they interfere with the tear film stability that Dwelle provides for me. . .

All told, I need Dwelle only once before bed, and on rising in the a.m. most days. If I'm dry or windy, I'll take another drop of Dwelle or NuraTear in daytime.

I believe that Dr. Holly has suggested that Dwelle can be used up to 8 times a day. . not because its ingredients have to be limited, but, rather, because dropping anything on the eyes more often can produce trauma in and of itself. . /

Hope that helps. . .

[jenny2008]

thanks for the quick response.. i was curious as you said you had tried freshkote. i tried freshkote 2x off and on several days--sometimes it felt good-other times it stung so bad i ended up diluting my eyes w/ theratears after!

I use Dwelle everynight when I go to bed. At first it stings a little but then it feels really good -and i wake up and my eyes feel pretty good.. maybe i will start to incorporate it in the daytime and see what happens!

thanks again for your insight!

[lboogie]

Thanks for posting this. While I am not 100% comfortable, I am trying to get back to my life. It does feel good to have eye breaks and have some fun. I had the best weekend I've had since lasik. Not in terms of comfort per se. But I was at the coast, with family, and I had a wonderful time. I just hope my eyes catch up with me now.

[autumnn]

Just a quick update as I dont want to monopolize the forum but I just got back from another eye apt. My chief complaint going in was that my left eye hurts almost all of the time still. My eyes were examined and blepharitis signs are gone as my lids look clean, my glands were expressed and had thin oil coming out and my lid was flipped upside down and he said that it looked healthy and like it was not irritated. He said that conjunctavalchaisis (sp?) is definitely not my problem and to put that out of my mind. And, to make things even better, he measured my TBUT as between an 8 and a 10 (as far as I know, 10 is normal). There are no clinical differences between my two eyes (which just baffles me). I am so glad that progress has been made (I am, thank you God) but why am I still in pain? Is some of it stress/fear/anxiety? Lastly, this great eye doc said that he was going to put some drops in my eyes and he wanted me to tell him how I felt after. Well, the pain dropped a little but I still felt some. Then he told me that it was an anesthetic drop and my cornea was completely numb to the point where it could be operated on. This told him that some of my pain is my lids and not my eye surface (to myself I thought that some of this pain may be in my head). So, I was advised to "stay the course" and to give Soothe Xp a trial run as a "cushion" drop. I hate the idea of drops because I feel like they are going to throw off my tear chemistry but he said just the opposite- it can help dilute some parts of the tears that my be concentrated due to MGD. If anyone has an experience about this please let me know. Anyway- here I am again obsessing and I have been told by everyone to "let go" and try to live as normal life as possible.
Lastly- does anyone know if our eyes take some time to "register" progress/change?
Thanks again everyone

[Arcaeon]

I'm totally different to most of you guys on here - I personally don't attribute ANY of my dry eyes to 'mental' problems - I am, and always have been, extremely healthy mentally (never been on any antidepressants, or had any similar issues ) and I fail to believe that all of a sudden my mind started to play tricks on me and is causing me eye pain.

No, I'm certain there is a trigger that is causing my inflammation and dry eye - and I'll keep experimenting, changing my routine, trying different things - until I fix it - I know it is extremely draining to try all different things and have none of them work, but I am CERTAIN that I will one day completely fix my eye problem. I know there must be a cause to this madness, I'm only 23, there is something triggering this, and I will find it. To me, personally, giving up and thinking that I will have this problem forever is, well, unthinkable, I would honestly just rather not live. So I keep looking and searching for the answer.

[autumnn]

I agree completely with the not giving up until this is gone but I think you have misunderstood- at least misunderstood me. I was completely mentally healthy and stable until this hit and I had three years of constant pain and failure in finding any comfort (I went as far as scleral lenses with no relief). "Chasing a cure" turns into a vicious cycle but I was great at keeping it to myself and fighting for an answer for about 2 years, then it started chipping away at my mental health and depression and anxiety started to set in.
That said, I agree with the previous poster- I am young too (and as you can see- clinically my eyes are pretty darn healthy) and I will not accept that this is how I will be for the rest of my life....thus, all the attempts I detailed.

[rubyslippers]

No, not caused by mental health problems, but exacerbated by stress is something I do not doubt. I have also learned when I have a blister on my foot, the more I think about it, the more it bothers me and the more concerned I get that it is infected and what if it got staph in it and it goes from there. I have learned long ago that my eyes rarely bother me when I am completely and fully engaged in something. I have also learned that if I am overtired, not feeling well, and upset about something, my eye problem can be just about more than I can take.

[sazy123]

I'm totally different to most of you guys on here - I personally don't attribute ANY of my dry eyes to 'mental' problems - I am, and always have been, extremely healthy mentally (never been on any antidepressants, or had any similar issues ) and I fail to believe that all of a sudden my mind started to play tricks on me and is causing me eye pain.

No, I'm certain there is a trigger that is causing my inflammation and dry eye - and I'll keep experimenting, changing my routine, trying different things - until I fix it - I know it is extremely draining to try all different things and have none of them work, but I am CERTAIN that I will one day completely fix my eye problem. I know there must be a cause to this madness, I'm only 23, there is something triggering this, and I will find it. To me, personally, giving up and thinking that I will have this problem forever is, well, unthinkable, I would honestly just rather not live. So I keep looking and searching for the answer.

Im exactly the same, im 23 ive been searching for a solution for 3 years, i was otherwise completely healthy after a week of wearing ortho-k lenses and being on antidepressants at the time my eyes went bad. The only times im not searching is when my eyes feel normal due to there being something else wrong with me, i.e i have made my self ill in the past from stress of dry eye which caused face pain, also had recently tonsilitis- both i had for ages and my eyes were fine. This is not psychological because the thing that is causing the problem- inflamed inner eyelids- goes away and my oil in my eyes looks so much better.

However, when there is nothing else wrong with me my eyes are unbearable, and i will not accept that i have to live like this, im 23 and i know my eyes can fell good, the problem is for me is that i have tried EVERYTHING and am running out of options. Nothing really works or helps. I dont care what the solution is- ill take face pain, sclerals, improvement to manageability like many on here achieve. Im now on doxy again, azasite, progesterone cream. Avoiding certain foods, and going to do the allergy thing again- but ive already been down that road with no luck. If i have to live with eye like this i dont want to live at all. its not an option for me to wear goggles at 23.

With dry eye its not something you can try not to think about, i cant have conversations or concentrate on uni work because it overrides my thought processes and i cant think of what to say. obviously this depends on how bad the symptoms are mine are the worst.

[Arcaeon]

Yeah I know sazy Ive tried heaps of different stuff as well .. that's weird that you say that when you get sick your eyes get better - I can relate to that, I haven't been sick in like, two years or something so I can't tell on that BUT... when I have a really huge night out, and get completely wasted (which isn't often these days ) , although I am really hung over and sick feeling the next few days my eyes are great. Bizarre I know. It's like when my body is really depleted and needs to focus on something else it doesn't make my eyes screwed up. I feel like I should be on an episode of House.

Anyway I don't know if you saw this post by futbolplayer, it really inspired me and gave me some hope because I have been following this guy and he had exactly the same symptoms as me and now he is better, if you didn't see the post (in Triumphs section ) i will paste it here :


Hey all,
I just wanted to let everyone know that I finally found out what what causing all my ocular issues. I started having trouble about a year ago, and I am not going to go in depth about all the details, but all I can say is it has been a long road (you can read through all my posts). As obvious as this may seem, I am allergic to some ingredient common in bar soap. I tried several months ago using a hypallergenic bar soap, which for some reason did not help. I coincidentally was very busy studying here at school (aerospace engineering major) and didnt shower for 3 days lol. I noticed during this period my eyes feeling a little "less tight" and experienced less pain. I also at the same time coincidentally ran out of my dial bar soap. I started using my roomates axe body wash and it has been about 5 days since using the dial soap and I am 90% better. I also seem to be getting better every day! All in all, I went to about 10 opthomologists, 1 optometrist, had blood work done, a cat scan of my brain done, and was tested for various food and environmental allergies. I was told I had "dry eye" "acne of the eyelids" "meibomitis" "chronic blepharitis" "allergies" and "nothing wrong." no doctor was really sure what I had. I knew it was related to inflammation however. and allergies is usually the cause of mass inflammation in the body. I had zero flares with this or itching, both typical of allergies. My advice to everyone is to just maintain hope. I experienced all mental issues (depression, anxiety) cause I was hopless and really wasn't' sure if Id ever get better. I still think I have some of these mental issues lingering (depression), what I am going to checked out, and then I should be able to live my life nomally again. My advice is to just fight through everyday tryin to be as productive as you can, until you figure out what is wrong. I have missed out on a lot in the past year of my life, but I have also learned a lot. Some of this has sucked some of the life out of me, but at the same time made me a better person. With these types of diseases, you have to figure out what is wrong, the doctors can only guide you. you have to be able to figure out what works for you. Also, here are some steps i recommend you follow:

1. Go see a Doctor is New York named Dr. Latkany. He specialized in chronic blepharitis and dry eye and will be able to tell you exactly what is wrong. I wasted my money going to about 9 doctors locally who told me all different causes. I decided I was gonig to make a trip to new york to figure out what exactly was wrong. Dr. Latkany was 100% I had an allergy to something within 5 minutes of examining me. He said I did have blepharits and dry eye, but this was being caused by the allergies. He was 100% right and I believe he is one of the few experts that can distinguish between cause and effect.

2. Do what makes sense. I knew after I was told I had bacteria blepharitis and diagnosis wasn't right. I never had crusting, redness of margins, or any of the symptoms of blepharitis. The lid scrubs didnt work. This is why I investiaged allergies along with Dr. L's recommendations.

3. This is easier said than done, but think back to what might have changed. Its very easy in hindsight, but this can be very helpful. My issues started about 2 months after moving into school. What happened was after 2 motnhs I ran out of my old spice body wash and switched to bar soap (even though I had used bar soap in the past, i must have developed an allergy to it at some point), and this is how the inflammation slowly began to build up. So, think back to what could have changed if you thinks its realted to allergies.

Here is my total list of symptos incase someones can relate.

in begining: redness to caruncle (triangle flesh part in corner of eye) along with a tickling sensation in this area, dry eye
* I might have had some very very minor crusting in the morning, so if you have crust, dont rule out allergies. BUT most the time, my lashes were clean.

middle-end: blurred vision, eyelashes loss, eyelid twitching, moderate dry eye, severe pain under eyelids, sensitive eyelashes to souch (terrible pain), swollen feeling in and around eyes, clearish goop in corner of eyes, redness to insides of eyelids

Hope this helps some people out there. YOU DONT NOT NEED TO HAVE ITCHING FOR ALLERGIES! Thanks to everyone for all thier help and support and I hope you all find the answer to yours problems (there is one out there, you will find it too!). I am saying good bye, but you can private message me if you have any questions, I'll check back on occasion.

-whether its been a month, a year, 5 years, etc... you will eventaully have a coindince like I did and figure out what is wrong, so that should always be in your mind as hope.


Here is also an alternative diagnosis that I would look into if your not sure whats wrong:
1.allergies
2.food intoerlance, sensitivities
3. blood work- hypothroidism, autoimmune diaseases
4. cat scan: brain tumor, sinus issues, etc..
5. demodex blepharitis (characterised by cylindrical dandruff at base of roots, itching and inflammation in the morning)
*demodex blepharitis is common in people with ocular rosacea

(my advice is not medical advice is any way, just things I came across causing ocular issues after a lot of reading)

Thanks everyone,
Aaron



This gives me hope that we might find the trigger for our problems, it might be allergies . Have you tried any antihistamines at all?? I am trying preservative-free Zaditen at the moment, seems to be making some improvement, although I think its just my imagination cause its not much. I might have to give it more time though. But i dont think it can hurt to keep using different antihistamines.

[autumnn]

Wow, my post got moved to "triumphs"- time to live this way. Like I said, a year ago I had dry spots on my eyes, moderate bleph, and a TBUT of 3. Also, I was classified as having "severe dry eyes" and was told my glands werent blocked but just werent producing oil. Now I have no signs of bleph, no staining/dry spots, average/above average tear production, and a a TBUT of basically 10. All "normal" findings- thank you to this forum for your help, I will keep you posted if there is anything I can add to help anyone.

[Teri]

Autumn,

You asked if it's possible that your eyes can take a while to "register change."

I think the answer is YES. Your eye has been hurting for so long, it's forgotten how to not hurt. I think this pain will eventually diminish.

A few years ago, I had an injury that resulted in chronic pain. The way my doctor explain it to me was like this: the nerves get stuck in the "ON" position, so even after the injury is healed, the nerves are still sending pain signals, even though nothing is wrong. Finding a way to interrupt that constant pain message is important.

Through various medications and time (I got stronger and stronger and thought about the pain less and less), the pain diminished to a point where I don't think about it most of the time. It's not severe and I guess I've gotten used to it.

Keep doing what you're doing, be compassionate with yourself, and let your eye remember what it's like to not hurt. It can happen.

Teri

[autumnn]

Teri- Thank you SO much for your post. It was exactly what I needed today. I talked with my psychiatrist about this as well and he said that now that my eyes are finally healthy and I have stable tear film, it may take my brain some time to register the change- he thought it would be about 2-3 months. I am noticing that at home where I am not worried about being in pain- I am usually not in any pain. When I am out and about I register more pain probably because I am thinking about it more. My therapist has helped me to have positive self thoughts and to tell myself all day long that "my eyes are normal"....I think it really helps and that there is a significant mind/body connection.

[gz9gjg]

Hello autumnn,

I began wearing RGPs 2/2008 after having LASIK 4/2000. I had HORRIBLE problems getting used to the RGPs and wanted to constantly use drops, take the lenses out and clean them, etc. After about 8 weeks, I went on a snow ski vacation, and wore goggles all day long. It was amazing! Wearing the goggles kept my fingers away from my eyes, and by the end of the week, all of my perceived problems were gone.

I do use NutraTear every night when I remove the RGPs, and Pataday to control allergic synptoms. But most days, I never need drops at all.

I concluded that I was being way too picky about the RGP comfort. Since then, I have dramatically reduced my eye drops use, and my eyes seem to be much more healthy.

Good luck,

Lynne