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  • Sudden and severe DES (first post)

    Hello all,

    First, I'm very happy to have found a group of people dealing with the same issues as me. This disease has been the hardest thing I have ever delt with in my life and knowing I'm not alone is some comfort. But, knowing what this is like, if I had the power I would wish for nothing less than to heal each and every one of you and free you from the suffering. This disease has brought out so much empathy in me for others now that I can truly say I suffer, and know what this form of chronic pain is like.

    My story is short. I have always had drier than normal eyes but never to the point where I thought about it a lot. Suddenly, 5 months ago I noticed quite a bit of discomfort. I was dealing with summer allegies so I thought it was that. Tried allergy drops with no results. Tried eye drops, vut they didn't help. I had a week where my eyes felt fine again, then things went down hill quickly. Suddenly, I could barely drive my car to work because the burning pain was too much and couldn't keep my eyes open. I could hardly function at work. By noon everyday I was unable to function. My eyes were just DONE.

    Weeks of this occurred with no relief. I would barely drive home after work with both eyes squinted shut and just shaking in pain. Crawl in bed with the lights off and close my eyes. The pain didn't go away and I would just pray for sleep.

    I ended up becoming suicidal and having fairly regular panic attacks about the pain never stopping, fearing I would never figure this out, lose my job, etc. (I had been seeing an eye doctor for 3 months and was only getting worse. I was losing hope). I committed myself to an inpatient mental facility to keep safe from suicide for 3 days. Speaking with my family when they visited reminded me of the support I have and was good for me in the long run.

    It has been a month since that very very low point and I am still trying new things and keeping to my daily maintenance routine (even if I feel no better then 5 months ago) I have to keep trying. The thought that I am only 29 years old and my life has gotten so much harder keeps me up at night some times. I also have 2, 6 month old twin babies and a wife. Much is needed of me but I can only function at about 50 percent most of the time.

    Thankfully some cheap 3m sealing glasses have saved my life the past 3 weeks. I have a minus 7 Rx and can not for the life of me find moisture glasses that fit this prescription. I choose to be nearly blind and have sealing safety glasses on than feel more pain without.

    My doctor says I have MGD. I have tried lipiflow (1k out of pocket), restasis, flax seed oil, fish oil, drinking water, lid cleansers, vitamins, lower plugs, hundreds of dollars in drops (I've settled on systane ultra for lubrication...doesn't help with pain but reduces damage from dryness), warm and cold compresses....etc.

    The only time I feel normal is when I am asleep and dreaming. I can't function without moisture chambers for more than 20 minutes to an hour in a 24 hour day.

    The worst thing is that my symptoms are worse while I sleep. This leaves me with a feeling of hopelessness to give my eyes a chance to heal. They dry out substantially more when I am sleeping. I have used gels, and ointments, tranquil eyes, dehumidifeier, etc. but none help at night. Like clockwork I wake up every 3 hours with severe dryness, put a drop in and go back to bed. Rinse and repeat.

    If anyone has a similar issue and has found night time relief I would be more than grateful to hear your advice. It is so strange because as bad as my eyes are during the day, at night they are much worse dryness-wise.

    Apologies for the long first post but I wanted to get everything out here in one go. A bit theraputic writing it all down. Anyways, thanks for listening to my little rant. I hope to make friends here, provide support to those that I can, and learn from all of the experiences you all have with this disease.

  • #2
    Hi, I'm 27 and your story is so similar to mine! Started 5 months ago, went downhill extremely rapidly, and had to check into hospital for a week to stop myself doing something stupid. I don't think I could keep my eyes open at all without moisture chamber glasses and they hurt too much to go to work. Listening to a lot of audiobooks!
    I'm trying IPL in January so will report back here if that helps. Weirdly my eyes have got worse and worse during the day but at night I now only wake up once or twice (vs about 5 times to begin with) and my eyes are sore but not stuck together. Such a strange disease.

    Comment


    • #3
      Hi,
      Welcome! My tips would be:

      Find a real expert to identify problems with soultions and in the meantime try to find out what might go wrong.

      Good to know your gland/secretion status, % alive, clear/thick oil, scar tissue etc.

      Normally lids need to be cleaned either with debridement, probing or BlephEx
      prior to LipiFlow for better results - but not so many doctors pay attention to this.

      Inflammation: most MGD suffers have such issue, some are minior/hard to detect - best is good diet, lid hygiene.
      For example, many doctors in USA recommend lid cleanser with pure HOCL, like Avenova.

      Night pain: maybe your eyes are not closed/sealed when sleep. Recently I watched a video from Dr Korb, inventor of LipiFlow, who mentioned some people eyes are closed but NOT SEALED when sleep.

      omega 3: not all are the same. most doctors in USA recommend PRN and another brand (forgot the name)
      I combine omega 3 & GLA to thin the oil which help. Maybe you need higher dose???

      partial blinker? If you use computer extensively, blink exercise helps and it is important.

      Lastly, keep learning/exploring new things - only knowledge is reliable, my experience tells me.
      My eyes are now manageable after trying this and that so you can make it too, like many others.
      Stay positive as there are many NEW/better treatments available, such as
      TrueTear, the 1st Intranasal Neurostimulating Device Proven to Temporarily Increase Tear Production
      (from all layers, what I have read!).


      Good luck!
      Last edited by MGD1701; 01-Jan-2018, 11:03.

      Comment


      • #4
        Originally posted by Lena11 View Post
        Hi, I'm 27 and your story is so similar to mine!
        Thanks for sharing your story. I truly feel for you. It is very hard when you can no longer do what you used to. Hopefully we can both find some relief with time or at least learn to better cope.

        Comment


        • #5
          Originally posted by MGD1701 View Post
          Hi,
          Welcome! My tips would be:

          Find a real expert to identify problems with soultions and in the meantime try to find out what might go wrong.

          Good to know your gland/secretion status, % alive, clear/thick oil, scar tissue etc.

          Normally lids need to be cleaned either with debridement, probing or BlephEx
          prior to LipiFlow for better results - but not so many doctors pay attention to this.

          Inflammation: most MGD suffers have such issue, some are minior/hard to detect - best is good diet, lid hygiene.
          For example, many doctors in USA recommend lid cleanser with pure HOCL, like Avenova.

          Night pain: maybe your eyes are not closed/sealed when sleep. Recently I watched a video from Dr Korb, inventor of LipiFlow, who mentioned some people eyes are closed but NOT SEALED when sleep.

          omega 3: not all are the same. most doctors in USA recommend PRN and another brand (forgot the name)
          I combine omega 3 & GLA to thin the oil which help. Maybe you need higher dose???

          partial blinker? If you use computer extensively, blink exercise helps and it is important.

          Lastly, keep learning/exploring new things - only knowledge is reliable, my experience tells me.
          My eyes are now manageable after trying this and that so you can make it too, like many others.
          Good luck!
          Thank you for all of the great advice. I'm very happy you have found some results!

          I have done and continue to do most of what you recommend, but I will look into the specific omega 3 and GLA you mention. I am using there tears omega 3 supplements andpure organic flax seed oil currently.

          Question: if my eyes are not sealed at night but I use tranquil eyes and they are still the same dryness if I don't is the goggles, what is the issue? Maybe I should try taping my eyelids shut? I did by some micropore tape that should be safe.

          Regarding lid cleaner...I've been use ocusoft for the past two months morning and night. Perhaps I'll check out the cleansers you recommend.

          Also, per MGD, I had a lipiview scan done and the doc said there were quite a few atrophied glands, and many many blocked glands. When j first started treatment he said my oils were like butter and had to push very hard with a qtip. Now after 3 months he says the oil is much more normal and he hardly has to push at all to express. He is surprised I do not feel better. Regardless I keep up the warm compresses once a day.

          Again, thank you for your advice. It gives me something to work towards and try different. Oh! I also will have blood serum tear drops coming in the next day. Willing to give that a try but it's quite expensive...

          Comment


          • #6
            Maybe try plugging the upper puncta as well. For me I need all 4 plugged. Since you are so severe (and by the way, my heart breaks for you) it might be worth it to visit some of the premier dry eye specialists. I don't know where you are located but in the US Dr Sandra L. Cremers in Washington DC and/or Boston MA (not exactly where she is located as there are 2 addresses online) would be my first choice. Dr ****** in Florida is another popular one but I think might be more expensive judging from what I have read online. Personally I would head off to see Dr Cremers.

            http://eyedoc2020.blogspot.com/2017/...meibomian.html
            http://eyedoc2020.blogspot.com/ (this is her blog, lots of interesting reading)

            I don't know what kind of work you do but if it involves excessive computer time you may seriously have to take a leave of absence and/or perhaps consider a new occupation.

            Comment


            • #7
              Hi

              Caues: did dr identify causes or check if you have scar tissue, inflammation - basic stuff? If not, better find more knowledgable one with solutions otherwise waste more money/time.

              Inflammation: Did dr check this (for example with MMP-9 / InflammaDry test) at all as it is super important and need to keep it under control. If you often have such issues, likely you have scar tissue and this needs to be dealt with. If you dont have such issue, maybe Ocusoft is good enough. But why not try new stuff. Another member mentioned yesterday his/her dr recommended cleanser with HOCL too, Heyedrate (cheaper than Avenova).

              Secretion: best is ask dr to show you HOW it looks like - to see is to believe. One dr told me my condition was great and no need to do compress, 10 days later, another dr said my oil was still NOT clear and needed to do compress.

              night pain: maybe you could ask your wife to check if eyes are sealed. Best is consult dr to identify cause. Maybe cornea is the problem??

              Omega 3 combined with GLA is new studies (but maybe about a few years already). More info, just goggle, ''dry eye, GLA'', better take them with food and x2-3 times/day is better than x1. This helps with controlling of inflammation too, apart from oil quality and tear production.
              Last edited by MGD1701; 01-Jan-2018, 16:31.

              Comment


              • #8
                Originally posted by MGD1701 View Post
                Hi

                Caues: did dr identify causes or check if you have scar tissue, inflammation - basic stuff? If not, better find more knowledgable one with solutions otherwise waste more money/time.

                Inflammation: Did dr check this (for example with MMP-9 / InflammaDry test) at all as it is super important and need to keep it under control. If you often have such issues, likely you have scar tissue and this needs to be dealt. If you dont have such issue, maybe Ocusoft is good enough. But why not try new stuff. Another member mentioned yesterday his/her dr recommended cleanser with HOCL too, Heyedrate (cheaper than Avenova).

                Secretion: best is ask dr to show you HOW it looks like - to see is to believe. One dr told me my condition was great and no need to do compress, 10 days later, another dr said my oil was still NOT clear and needed to do compress.

                night pain: maybe you could ask your wife to check if eyes are sealed. Best is consult dr to identify cause. Maybe cornea is the problem??

                Omega 3 combined with GLA is new studies (but maybe about a few years already). More info, just goggle, ''dry eye, GLA'', better take them with food and x2-3 times/day is better than x1. This helps with controlling of inflammation too, apart from oil quality and tear production.
                Interesting. All good points. Everytime I visit they take two tests. For inflammation and tear structure. He keeps saying my tears are too salty, but I have minimal to no inflammation in the test, even though there is much burning. No mention if scar tissue.

                I am in a steroid drop (have been for 1.5 weeks for 4 times a day, now down to 2 times a day) for inflamation.

                When asking why my eyes are worse while sleeping he had no suggestion, not even a comment. I have learned of more options from these forums.

                I will ask my wife to look at my eyelids while I'm sleeping (hard to do since she always falls asleep before me!)

                I did just purchase that cleanse you recommended and some better quality omega 3s. When they get here I will swap those items for what I'm currently using. Thank you for those suggestions.

                Concerning how the oils look. Is there a way to check myself with a magnifying glass? I don't think my Dr will have a way to show me. I am doing a other lipiview test in 1 week so j will be able to see if the glands look any better then. The first lipiview test did show that I had good blinks. I will ask about scar tissue as well.

                Comment


                • #9
                  Originally posted by farmgirl View Post
                  Maybe try plugging the upper puncta as well. For me I need all 4 plugged. Since you are so severe (and by the way, my heart breaks for you) it might be worth it to visit some of the premier dry eye specialists. I don't know where you are located but in the US Dr Sandra L. Cremers in Washington DC and/or Boston MA (not exactly where she is located as there are 2 addresses online) would be my first choice. Dr ****** in Florida is another popular one but I think might be more expensive judging from what I have read online. Personally I would head off to see Dr Cremers.

                  http://eyedoc2020.blogspot.com/2017/...meibomian.html
                  http://eyedoc2020.blogspot.com/ (this is her blog, lots of interesting reading)

                  I don't know what kind of work you do but if it involves excessive computer time you may seriously have to take a leave of absence and/or perhaps consider a new occupation.
                  Thank you for your advice and kindness.

                  Regarding plugs my Dr. Is concerning about "toxic tears" and the plugs not allowing the unhealthy tears to drain and causing more inflammation. He seems pretty strongly opinionated about this. I asked if my problem is more MGD or aquious deficiency as well. He said I "probably have that as well". I should maybe push that question as I find it hard to believe they can't know that.

                  I will seriously consider seeing a more known specialist. I want to give my Dr more chances but he almost seems to have given up on treatment and I mainly pushing symptom help.

                  Yes, my job is in front of a computer. It makes things hard but my boss has let me work from home "temporarily". I fear what I will be able to manage when I need to go back in. This is a lot to deal with but I may need to seriously consider what a potential career change could look like. Student loans and teo children do not make a career change seem like the best idea. But, I also need to be realistic with what I'm capable of.

                  Thanks for giving me more things to consider. Super helpful.

                  Comment


                  • #10
                    Gland images: did dr show you images & reports since you have done LipiView, which detects partical blinking issue too. Why important? oil could flow out when dr pressed glands, even only 10% of each gland were alive, according to Professor/Dr Preeya Gupta, which was actually to her great surprise - I just watched her presentation (dated Nov. 2017).

                    Secretion: some doctors equip camera at slit lamp then they can show you the secretion or even take photos.
                    with 20 or 12 -zoom mirror (brand: Zadro from USA) I can see oil drops from uppers. Before they were light grey, now they are clear.

                    Dr: If I were you, I will serach for a real expert for results. Doctors who avoid questions show they are NOT knowledgeable.

                    Causes: (food) allergies, liver function, Vit. D, A? Many people have low Vit. D issue, I have noticed, regardless of ages, sex, especailly if office workers.

                    Great, you are proactive. Perhap identify issues are more important otherwise might be costly??

                    MGD or aquious deficiency: my understanding is most people have BOTH. pure aquious deficiency is low %.
                    New report says all aquious deficiency will eventually develop to MGD - just a matter of time!!

                    Pain/demodex: if the pain also occurs when you wake up in the morning - good to ask dr to check if demodex presents.

                    TrueTear, the 1st Intranasal Neurostimulating Device Proven to Temporarily Increase Tear Production
                    (from all layers, what I have read!) --- good to ask dr if this would help you!! Seems patients and doctors find it pretty helpful.

                    Maybe you would care to learn more: The list of DED co-conspirators includes:
                    http://www.dryeyezone.com/talk/forum...dr-mark-milner
                    Last edited by MGD1701; 02-Jan-2018, 05:46.

                    Comment


                    • #11
                      Originally posted by RestoredSparda View Post
                      Hello all,

                      First, I'm very happy to have found a group of people dealing with the same issues as me. This disease has been the hardest thing I have ever delt with in my life and knowing I'm not alone is some comfort. But, knowing what this is like, if I had the power I would wish for nothing less than to heal each and every one of you and free you from the suffering. This disease has brought out so much empathy in me for others now that I can truly say I suffer, and know what this form of chronic pain is like.

                      My story is short. I have always had drier than normal eyes but never to the point where I thought about it a lot. Suddenly, 5 months ago I noticed quite a bit of discomfort. I was dealing with summer allegies so I thought it was that. Tried allergy drops with no results. Tried eye drops, vut they didn't help. I had a week where my eyes felt fine again, then things went down hill quickly. Suddenly, I could barely drive my car to work because the burning pain was too much and couldn't keep my eyes open. I could hardly function at work. By noon everyday I was unable to function. My eyes were just DONE.

                      Weeks of this occurred with no relief. I would barely drive home after work with both eyes squinted shut and just shaking in pain. Crawl in bed with the lights off and close my eyes. The pain didn't go away and I would just pray for sleep.

                      I ended up becoming suicidal and having fairly regular panic attacks about the pain never stopping, fearing I would never figure this out, lose my job, etc. (I had been seeing an eye doctor for 3 months and was only getting worse. I was losing hope). I committed myself to an inpatient mental facility to keep safe from suicide for 3 days. Speaking with my family when they visited reminded me of the support I have and was good for me in the long run.

                      It has been a month since that very very low point and I am still trying new things and keeping to my daily maintenance routine (even if I feel no better then 5 months ago) I have to keep trying. The thought that I am only 29 years old and my life has gotten so much harder keeps me up at night some times. I also have 2, 6 month old twin babies and a wife. Much is needed of me but I can only function at about 50 percent most of the time.

                      Thankfully some cheap 3m sealing glasses have saved my life the past 3 weeks. I have a minus 7 Rx and can not for the life of me find moisture glasses that fit this prescription. I choose to be nearly blind and have sealing safety glasses on than feel more pain without.

                      My doctor says I have MGD. I have tried lipiflow (1k out of pocket), restasis, flax seed oil, fish oil, drinking water, lid cleansers, vitamins, lower plugs, hundreds of dollars in drops (I've settled on systane ultra for lubrication...doesn't help with pain but reduces damage from dryness), warm and cold compresses....etc.

                      The only time I feel normal is when I am asleep and dreaming. I can't function without moisture chambers for more than 20 minutes to an hour in a 24 hour day.

                      The worst thing is that my symptoms are worse while I sleep. This leaves me with a feeling of hopelessness to give my eyes a chance to heal. They dry out substantially more when I am sleeping. I have used gels, and ointments, tranquil eyes, dehumidifeier, etc. but none help at night. Like clockwork I wake up every 3 hours with severe dryness, put a drop in and go back to bed. Rinse and repeat.

                      If anyone has a similar issue and has found night time relief I would be more than grateful to hear your advice. It is so strange because as bad as my eyes are during the day, at night they are much worse dryness-wise.

                      Apologies for the long first post but I wanted to get everything out here in one go. A bit theraputic writing it all down. Anyways, thanks for listening to my little rant. I hope to make friends here, provide support to those that I can, and learn from all of the experiences you all have with this disease.
                      hi! I too suffer from severe dry eye. I have tried EVERYTHING! All that you,ve mentioned and more. One thing that helps me at night is the erythromycin eye salve. After reading a dry eye forum, I tried this sugesstion. Place some kind of moisturizer( i use castor oil) on your eye lids and around your eye. Put the eye salve in your eye, and then cover your eyes with plasic wrap. It works very well to keep the moisture in. And it stays on all night with the castor oil as a moistureizer......Only relief i get.

                      Comment


                      • #12
                        Originally posted by RestoredSparda View Post
                        I asked if my problem is more MGD or aquious deficiency as well. He said I "probably have that as well". I should maybe push that question as I find it hard to believe they can't know that.

                        I will seriously consider seeing a more known specialist. I want to give my Dr more chances but he almost seems to have given up on treatment and I mainly pushing symptom help.
                        .
                        I am guessing by his answer "probably have that as well" that he knows very little about dry eye. It is fairly easy to determine with some basic simple tests if you are aqueous deficient. I would be loathe to waste any more of my precious time with him if I had any other choices. I think the main challenge is determining exactly WHY you have the problem in the first place so that you can better determine how to deal with it. After 8 years of struggling I am still finding out that there is more and more becoming available to diagnose and treat and 'probably have that as well" just doesn't cut it.

                        BTW allergy medications dry up everything, including your eyes so probably best to avoid them if your allergy symptoms are manageable.

                        I have had all 4 puncta plugged since about 2012 with no problems so I am not sure what his issues are. Yes toxic tears can be an issue but there are many on this forum quadra plugged and I have rarely hear of an issue with toxic tears. For me 2 plugs just didn't cut it but 4 was a game changer. I have since had the uppers cauterized and the Dr was game to do all 4. I wouldn't do that because I am hopeful that at some point I will recover to the point that I no longer need all 4 plugged. If they don't help or if you develop a problem they can always be removed it's not like it is permanent.
                        Last edited by farmgirl; 02-Jan-2018, 00:10.

                        Comment


                        • #13
                          Originally posted by MaryTP View Post

                          hi! I too suffer from severe dry eye. I have tried EVERYTHING! All that you,ve mentioned and more. One thing that helps me at night is the erythromycin eye salve. After reading a dry eye forum, I tried this sugesstion. Place some kind of moisturizer( i use castor oil) on your eye lids and around your eye. Put the eye salve in your eye, and then cover your eyes with plasic wrap. It works very well to keep the moisture in. And it stays on all night with the castor oil as a moistureizer......Only relief i get.
                          Sorry to hear you are dealing with this as well! I will try your night time tips. Can't hurt to try something else.

                          Comment

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