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  • please give me hope

    It has been about 1.5 years since my nightmare started. The longer it goes on, the longer I can't bare the thought of living with this forever. I'm only 21.

    I went away for Christmas for 3 weeks to the other side of the world where it is summer, and I had almost no symptoms, except for a few windy hikes or late nights. For 3 weeks I didn't obsess about my eyes every waking second, I thought my Restasis was working. Coming home to Canada my eyes are back to dry and bloodshot.

    I wake up in the morning and they are fine. Actually, whenever I am home, they don't bother me at all. But I'm a medical student -- I'm never home. I'm at school or in clinic in these crazy air conditioned rooms for 10 hours a day, and I look and feel terrible until I finally get relief at the end of the day when I come home.

    I'm set to start IPL next month but I really have low hopes for it. I dont think i have gland obstruction and my oil is clear, just not a lot comes out. My doctor disagrees but I am quite sure this was caused by a small amount of accutane, and from everything I've read it seems accutane patients are helpless. All I see are accutane victims trying everything under the sun for years, with no results. I can't imagine why I will be any different than them. I was unlucky enough for this to happen to me, when everyone I know including both my sisters took acctuane with no problems, so why would I be so lucky to be the one who benefits from IPL or whatever else?

    I really think I would rather die than live like this. And it breaks my heart because my life is so good otherwise, I have great friends and a great family and what should be a bright future ahead, but I can't appreciate any of it when all I can think about are my stupid eyes, and yell at myself for ruining my own life.

    My mom keeps telling me I need psychiatric help, my friends are suppportive but obviously they dont understand and I just dont know who to turn to. I sit on my bathroom floor and cry until I can't breathe. I just keep thinking of the life I could have had, the really really good life I could have had which probably will never happen as I have an incurable chronic disease at age 21.

  • #2
    Hope is very important. Any chronic condition can only get better if you live to try.
    Please, seek out medical help. If you are in pain, you are in pain, and only you are the key to know what treatments will work for you. Try to find a medical professional who will work with you.
    If treating your condition means giving up some of your future plans, but in return, you will get better control of your condition - what would you choose?
    Journaling is a great way to find out what works for you. Take one day at a time, not your whole life in a day. Talk to others with the same condition, try to write down what you are able to do. Seek out a different opinion.
    Remember, your life is valuable, and you only have one life.

    Comment


    • #3
      I'm pretty much going to say similiar as mentioned by dryeyetalk novice.

      Just take it day at a time. I know it's easy to think about your whole life and future but try to refrain from it.

      Just keep hope and try new treatments. Unfortunately a lot of the Treatments will be trial and error. If it works, then great! If not at least you know and can move to other things.

      Keep a list of what you are going to do. It helped me in terms of having stability and trying to find a treatment which works for me in a methodical way.

      Also try to do the things you enjoy.

      You can do this!!

      Comment


      • #4
        I have had my condition for 2 years now so can really sympathise. The fact that you get relief when in hot/humid climates is very encouraging- have you thought about wearing moisture chambers during the day to replicate the effect?

        Also I would not dismiss IPL -it didn’t do anything for me, but there are plenty of people who it has worked for.

        There are tons of members who used to be active on this forum who have now disappeared.- I like to think they are living pain free lives somewhere and that one day I can be like them. I haven’t given up hope and neither should you.

        There are doctors all over the world carrying out research and new medications are in the pipeline so the future is positive.

        Comment


        • #5
          Hi. I was homebound for three years because of debilitating dry eyes (and struggling 5 years prior to that), and I thought things would never get better after that long, but it did. So please do not give up hope.

          As Alex mentioned, it’s encouraging that you can feel better in certain climates. As he recommended, wearing moisture chamber goggles can help somewhat mimic that warmer moist environment. I would also suggest wearing night protection like EyeSesls 4.0 or bubble bandages to protect your eyes from night air, having humidifiers in your bedroom and where you study, and going for a Scleral lens consult to see if you are a candidate for these lenses that are increasing used to manage dry eye symptoms. Not everyone can tolerate these lenses, but if you can, it could provide some immediate relief against inside and outside elements like air conditioning, heaters, wind, etc. For some people I know, wearing Scleral lenses plus moisture goggles at the same time is what helps the most with daily functioning.

          During my worst years I also found Genteal Severe Dry Eye gel more moisturizing and soothing than any drops, plus it lasted longer. Using this plus the moisture goggles can provide a more moist environment for your eyes too:

          https://dryeyeshop.com/products/genteal-gel

          If you are not already aware, Rebecca’s Dry Eye Foundation has a new Facebook group Dry Eye Cares, who can help provide resources and support. You might want to reach out to them:

          https://m.facebook.com/groups/dryeye...der&view=group

          You may at some point decide to change where you go to school and ultimately work to somewhere with a more moist climate. Others in the forum have done this. Climate did not make a difference for me at all, so at least you have that as an option that gives you some relief.

          It’s important to continue to look for the underlying cause and related treatments, but some of the above may help relieve your symptoms so you can better function, which is just as important. Please feel free to PM me if you have any questions, etc. I and members in this forum are here for you. Please take care.

          Comment


          • #6
            I understand. I also took a drug that contributed to this condition and am missing the incredible life I used to have. First don’t beat yourself up about the drug...you had no way of knowing that something like this could happen.

            I was housebound from December 2018 until April 2019...seems like we have the same issues. When I’m in the tropics I feel great! At home, at the gym and out I’m pretty good. Work a job at a hospital that I love but I struggle there due to the dry air...start out fine and then pain by the end of the day

            You shared that you are in Canada...so am I. The winter has been harsh combined with space heaters everywhere...this could be making your symptoms worse.

            I was in bad awful pain for months and started to turn a corner in September 2019...I’ve been working with a dermatologist and a naturopath. Focusing on detoxing. Clean diet...no alcohol, sugar or meat. Mostly organic vegetables and fruits. Getting good sleep and most of all managing stress and anxiety related to this. You can only deal with the now...if you worry about the life you think you’re going to miss out on you’re going to give yourself anxiety and that’s not going to help.

            It may be helpful to see a grief counsellor someone that deals with patients that have chronic conditions. It can be life changing and no one can quite understand the impact this can have. It’s also hard on our friends and families to see us go through this.

            I went from daily burning, stinging and throbbing to having some symptom free days. I’m fighting for back to normal! Unfortunately, it takes time, patience and consistency. I still have pain days but I track all my symptoms so that I can determine pattern. I have found IPL to be the most helpful of all the treatments. I have done it all...sometimes too much. Hugs...it will get better.

            Comment


            • #7
              Thank you Dryinvanciy for sharing. Can not agree with you more.

              IPL
              Is your IPL M22?
              Did your doctor do the whole face, upper lids and express glands after IPL?
              I asked these as not all IPLs are the same and these do make a difference.

              Comment


              • #8
                I’m not sure which machine my doctor uses. I have had 7 IPL with my optometrist in the last 12 months. My doctor only does the bottom lids and expresses them right away. He photographs all the secretions so we can review them together. I have my whole face done when I go.

                i have had IPL with my dermatologist and find that the settings they use are much stronger.

                I am contemplating having IPL done on my upper lids as well as there are a couple of doctors close by that offer this. However, they do not express the glands afterwards. The practices are so inconsistent!

                Have you had IPL on your upper lids? If so, was it uncomfortable? Did it make a difference? Thanks!

                Comment


                • #9
                  I will give you this advice. Dont do it. I did two years ago, I regret it; I now have problems with breathing very rarely and what feels like werid pulsating blood flow it's hard to explain. Overall suicide is not the answer, I've been fed up recently with mines due to allergies. But please donr give up, there are many our there who want to help us. I've had the disease since 18, I've lost so much confidence, cant wear make up and currently at uni first year. I'm now 23 and much better from where I started although no relief but I think if I fully control my allergies then, that will help me. Please go get help, or go to A&E or suicide help lines, I'm begging you! I regret the day I tried to do that, I survived by all odds and as much as I hate this disease some days I feel like I can get better and some days not so much. If youd want to message me on here, I will be glad to help. I've posted so much over the years, but please please go get help! Or speak to close friends and family, try and find something that might help (I know its hard) i went through tonnes of eye drops, gels to find out i had allergies, and lots of fish oils to find one that works. Trust me there is hope, this is a rapidly growing problem that cant be ignored anymore.... we just gotta wait as much as it sucks!

                  Comment


                  • #10
                    I went to a dermatologist 2 weeks ago (to test for allergies) and she confirmed that the sun has anti-inflammatory effects, while also making the skin dryer (which helps with acne, so this also applies for blocked meibomian glands).
                    On the other hand you also mention Accutane, a drug which is used for severe acne, which is also the link with the others people on this forum - me included, the fact that we have, or had a skin condition. So you can't really conclude that Accutane is the cause of your dry eyes, your skin condition (e.g. a greasy skin) might be the origin of your problems or the root cause. If a skintype is the cause it can result in inflammation of the eyelids, which on its turn results in meibomian gland dysfunction. This in combination with other factors - not wearing eye protection when cycling, not wearing prescription glasses if needed, a lot of screen work for example - might worsen the situation.

                    Try things out: washing your face with ph neutral soap from time to time, cleaning your eyelids (with e.g. BlephaSol), your dit, test your eyes, etc.

                    Edit: how long have you been using cyclosporine eyedrops? As they only tend to fully have effect around 4 to 6 months of use.

                    Comment


                    • #11
                      I am so sorry you are going through this! 2 years ago I went through roughly the same thing. I started having symptoms 5 years ago and I went to see several different doctors who really didn’t have answers for me. In 2018 it got worse and worse. I was in my last semester of nursing school and the hospital environment, school and computer work destroyed my eyes. I kept pushing myself because I thought it so close I can’t give up now. A lot of people didn’t understand and also suggested psychiatric help. My eyes were never red, and I looked normal however, my eyes were so dry by this point I couldn’t even drive or look at a TV, they burned constantly. I ended up graduating from nursing school but I had to quit my first RN job because I could no longer do it, my eyes were that bad. I know this isn’t what you want to hear but unfortunately hospital environments were my biggest enemy. Given that you are a medical student these places will be difficult to avoid. I fear that if you continue to push yourself in the medical environment that your eyes will continue to get inflamed. The best advice I can give to you is take a break if you can. Your eyes need time to heal from the inflammation, because once you start that cycle it’s hard to break. I was the same if I was away from school and in a humid environment I was fine and didn’t even notice my eyes. BUT when I pushed myself so much to finish school, EVERYWHERE started to bother me, even humid environments because my eyes were so inflamed.


                      I took a year off from everything that were my triggers, I know it’s not always possible but that’s what worked for me. I did over 10 IPL treatments which really helped me (it didn’t at first) so I encourage you to have hope with that! I also got on Autologous serum drops, warm compresses, xiidra, moisture chamber glasses, limited screen time, and blinking exercises! I was diagnosed with several different problems, unfortunately dry eyes is very complex. PLEASE PLEASE PLEASE don’t lose hope! Last year at this time I was basically bed bound, TODAY I’m doing everything I could before and I barely notice my eyes. It takes time for the inflammation to go down! Give it time but also try not to panic about the future, that was probably the worst thing I did for my healing process. Listen to your body and know that unfortunately, you will have to modify your lifestyle but there is so much hope. I NEVER thought I would be the one to write messages like this, I honestly thought I would be stuck with this horrible pain forever. BUT I’m so much better almost totally pain free. The important thing is I modify my lifestyle as much as I can and I take one day at a time that’s all you can do. Take care!

                      Comment


                      • #12
                        Originally posted by JenessaP View Post
                        I am so sorry you are going through this! 2 years ago I went through roughly the same thing. I started having symptoms 5 years ago and I went to see several different doctors who really didn’t have answers for me. In 2018 it got worse and worse. I was in my last semester of nursing school and the hospital environment, school and computer work destroyed my eyes. I kept pushing myself because I thought it so close I can’t give up now. A lot of people didn’t understand and also suggested psychiatric help. My eyes were never red, and I looked normal however, my eyes were so dry by this point I couldn’t even drive or look at a TV, they burned constantly. I ended up graduating from nursing school but I had to quit my first RN job because I could no longer do it, my eyes were that bad. I know this isn’t what you want to hear but unfortunately hospital environments were my biggest enemy. Given that you are a medical student these places will be difficult to avoid. I fear that if you continue to push yourself in the medical environment that your eyes will continue to get inflamed. The best advice I can give to you is take a break if you can. Your eyes need time to heal from the inflammation, because once you start that cycle it’s hard to break. I was the same if I was away from school and in a humid environment I was fine and didn’t even notice my eyes. BUT when I pushed myself so much to finish school, EVERYWHERE started to bother me, even humid environments because my eyes were so inflamed.
                        JenessaP
                        Did or do you have some type of skin condition by any chance, one that could be the trigger, for example an oily skin potentially leads to problems like acne (clogged glands), seborrheic dermatitis, etc.?

                        As for me, I also switched from computer work to a non-computer related job (retirement home), but as you mentioned this isn't the ideal place neither. I have a dry nose and dry eyes there. Things seem the get better though, since I don't tend to use my computer screen that much and wearing prescription glasses (not sure if it helps against eye strain, or it is a protection against breezes of dry air when I walk around).

                        Comment


                        • #13
                          gilles Honestly, I have no idea what triggered my eyes. I was on birth control for about 5 years, wore contacts, lived in a very windy and dry city in Canada, lots of computer work, worked in a hospital, was on antihistamines. All of these things contribute to dry eyes yet another person could be doing the exact same thing and be totally fine. I was diagnosed with cornea neuralgia, and gland dysfunction and low tear production, and poor blinking. So I guess a lot haha, but there isn’t one definitive thing that caused it. Oddly enough my symptoms have really improved in the winter so really nothing is making sense. But yes avoiding computers and dry environments have made all the difference but hoping to find a nursing job that is dry eye friendly will be the ultimate struggle. I had custom moisture chambers made and they are so worth it, and you really can’t notice them that much, I feel this could also really help in your working environment!

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