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Newbie: 20 years old, 5 doctors later and dry eye cause unknown (maybe accutane)

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  • Newbie: 20 years old, 5 doctors later and dry eye cause unknown (maybe accutane)

    Hello world,
    About 4 months ago I started reading these posts but was sure I'd get better soon enough but sadly here I am finally making an account.
    I'm wondering if anyone else has ever been in a similar situation as mine: horrible sudden dry eye symptoms but no significant clinical explanation.
    Cutting straight to the chase, here's everything relevant:

    -20 yo female, never wore contacts or had any eye problems in my life
    -Last year for ~9 months was on microdose accutane (10mg every other day so like 30mg/week). During this time: eyes would have random days of localized redness (not bloodshot, literally just like a nodule-like red splotches) on inner corner of eyes. Absolutely NO feeling of dryness, NO pain, just red splotches. 2 optometrists examined + said eyes were perfect
    -Stopped accutane for about 2-3 months during summer: for entire summer, not ONE day of the red eye. wind blowing in face didnt cause redness etc absolutely perfect eyes
    -End of summer: had small operation (whcih is why I had stopped accutane prior). About 1-2 weeks post-op, restarted my low dose accutane. As soon as I restarted, my episodes of painless red eye splotches resumed (this is where I actually made the accutane connection). After ~ 4 weeks (I had 140mg of accutane which is nothing), eyes suddenly became DRY for first time ever. Redness went from localized splotch to bloodshot everywhere. STOPPED accutane immediately.
    Ever since then: random days of unbearable eye dryness. Bad enough to sometimes not be able to go to school. Some days eyes are perfectly normal (at first majority of time were fine) but over months now most days are bad. It's been about 1 week of constant every day bad.

    My original theory: eyes recovered from 9 months of accutane last year, but 1 month destroyed them, only difference = surgery. one doctor told me your body is all messed for 3 months after surgery so maybe I just reacted differently. However now its been 4 months and I dont know if I can still blame the accutane since I took barely anything......

    EYE EXAM FINDINGS
    From lipiview:
    -meibomian glands all present/normal.
    -lipid layer thickness low (something like 60nm in each eye, she said it should be more like 100)
    -100% incomplete blinks (I also sleep with my eyes partially open, has been like this since I was a kid and never a problem)

    Schirmer test (similar): more than 10 mm in each eye (11 and 13 i think) but she said a bit low for my age
    TBUT: first time i went was 10 seconds, last week was 13 seconds
    Meibomian gland expression: all my glands express oil, but she said its slightly thicker than it should be, grade 1 quality i.e. lowest level of abnormal quality

    Examiner's overall impression: my eyes are not clinically severe at all, and don't correlate with my symptoms (she referred me to someone else).

    Other relevant info:
    medications = birth control (low dose combo estro+progest, for many years, not known to dry eyes) + vyvanse (ADD med, also taken for years)
    things ive tried: lotemax, alrex, hylo gel + all other drops, warm compresses, flaxseed oil every day.
    no symptoms of sjogrens other than eyes (no throat pain, lots of saliva i even drool often in my sleep)

    DOes anyone have a similar experience, or have a theory as to what is happening to me? No eye doctor has been able to tell me so far, I don't understand how I could go from perfect eyes to debilitating dry eyes practically overnight........ am in medical school and feel like i wont make it through if they never get better

    thanks everyone and sorry for the long post


  • #2
    IWelcome to the forum! Yes, sudden symptoms are not very common but some people have experienced the same flow of events. Take me for example: in late November (2017) I was on a plane and felt fine, December was a bit of dryness followed by sudden severe symptoms. I early January I could no longer look at the screens while on New Years I could watch a movie. I have heard this sort of progression could happen from MDG-related dry eyes.

    Dry eyes could have lots of causes and sometimes it is not even the dryness that causes symptoms. Have you seen a dry eye specialist? What area are you in? Perhaps, someone could recommend a good doc. They can measure inflammation (Inflammadry), tear osmolarity (TearLab), tear meniscus (Keratograph).

    Here are systemic things to rule out: Sjogrenís (at least blood work and Sjo test), unlikely but worth a peace of mind, hormones (birth control does affect eyes, maybe you switched a pill?), allergies. Your operation wasnít eye related, am I correct? LASIK and similar can cause dryness but I donít believe thatís what you meant by an operation.

    The thing about dry eyes is that itís a cycle of inflammation, a cascade of disruptive events. Something could trigger borderline dry eyes and there they go. It could have been Accutane. This drug can damage meibomian gland function causing thicker oil production and atrophy. Your TBUT is great but it could have initiated a cycle..

    Also, symptoms and signs donít go hand in hand. I visited a doc with a TBUT 3 seconds once and that felt better then the TBUT of 13 seconds another time. Today I had 8 in one eye and 10 in the other but I donít yet feel a 100%.

    Anyways, things like damaged lid wiper can induce dry eye symptoms and allergic papillae (bumps) on inner eyelids plus allergic irritation can also make things feel worse.

    Have you tried Xiidra or Restasis? What about IPL or doxycycline for potential MDG?

    Comment


    • #3
      Welcome avocadoeyes
      You are very smart to deal this early and got glands function examined.
      MGD is much easier and possible to put it under control at early stage.

      Birth control pills, partical blinking, diet, smoking, enviornment stress (dry air, wind etc), contact lens have impacts on glands. blinking exercise (each hour) helps and are very important.

      many make-up, sunblock, skin care products etc have bad stuff for eyes - good to avoid them for a while.
      maybe you could do more research.

      inflammation is very common. make sure doctor checks your lid margin, lashes etc or/and with MMP-9 or dyes.

      moisture glasses is a must for pc work (block blue light too) and outdoor.

      lid seals, swimming goggle, ointment should help - good to consult doctor.

      Wise to find a real expert who can perform and inteprete objective testings for an effective treatment,
      such as osmolarity, MMP-9 etc can identify or rule out causes.

      Think positively, you can make it. Good luck.

      perhaps you might care to read my old posts
      http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

      http://forum.dryeyezone.com/forum/dr...dr-mark-milner
      Last edited by MGD1701; 12-Dec-2018, 08:42.

      Comment


      • #4
        Welcome,
        From what I read in forums, a lot of people have got dry eye after using Accutane, so be careful with this drug.
        Good you have glands in a good shape, but 60 LLT is low and probably the cause is due to thick oil and partial blink.
        I would say : hot compress + blink exercises + ointment vit A the night.

        Comment


        • #5
          Originally posted by hopeful_hiker View Post
          IWelcome to the forum! Yes, sudden symptoms are not very common but some people have experienced the same flow of events. Take me for example: in late November (2017) I was on a plane and felt fine, December was a bit of dryness followed by sudden severe symptoms. I early January I could no longer look at the screens while on New Years I could watch a movie. I have heard this sort of progression could happen from MDG-related dry eyes.

          Dry eyes could have lots of causes and sometimes it is not even the dryness that causes symptoms. Have you seen a dry eye specialist? What area are you in? Perhaps, someone could recommend a good doc. They can measure inflammation (Inflammadry), tear osmolarity (TearLab), tear meniscus (Keratograph).

          Here are systemic things to rule out: Sjogrenís (at least blood work and Sjo test), unlikely but worth a peace of mind, hormones (birth control does affect eyes, maybe you switched a pill?), allergies. Your operation wasnít eye related, am I correct? LASIK and similar can cause dryness but I donít believe thatís what you meant by an operation.

          The thing about dry eyes is that itís a cycle of inflammation, a cascade of disruptive events. Something could trigger borderline dry eyes and there they go. It could have been Accutane. This drug can damage meibomian gland function causing thicker oil production and atrophy. Your TBUT is great but it could have initiated a cycle..

          Also, symptoms and signs donít go hand in hand. I visited a doc with a TBUT 3 seconds once and that felt better then the TBUT of 13 seconds another time. Today I had 8 in one eye and 10 in the other but I donít yet feel a 100%.

          Anyways, things like damaged lid wiper can induce dry eye symptoms and allergic papillae (bumps) on inner eyelids plus allergic irritation can also make things feel worse.

          Have you tried Xiidra or Restasis? What about IPL or doxycycline for potential MDG?
          thank you for the reply!!!!
          1. I've seen a few eye doctors now, but only specialist was the one who did my lipiview exam. however he was an optometrist and young/inexperienced and was honest about this and referred me to an expert in my area, but my appointment is only in a couple of months.

          2. you are correct my operation was not eye related but it was on my face and i am convinced my inflammation of my face could have somehow affected my eyes.... really not sure but its the only thing i can think of that changed between my first low dose accutane and second.

          3. good to know about the TBUT/sypmtom correlation.

          4. i have not tried xiidra or restasis, honestly because im only 20 and afraid of trying these as they seem like one of the last options and in my mind i wonder i fthis iwll only get worse, what will i have as an option in 10 years when ive already exhausted the fancy drops? I am looking into IPL actually. my goal here is to prevent my glands from getting worse, i mean since now they are not atrophied but my LLT is so low and i wonder if early IPL in early MGD would help in preventing progression. whats your opinion on these treatments?

          Comment


          • #6
            Originally posted by MGD1701 View Post
            Welcome avocadoeyes
            You are very smart to deal this early and got glands function examined.
            MGD is much easier and possible to put it under control at early stage.

            Birth control pills, partical blinking, diet, smoking, enviornment stress (dry air, wind etc), contact lens have impacts on glands. blinking exercise (each hour) helps and are very important.

            many make-up, sunblock, skin care products etc have bad stuff for eyes - good to avoid them for a while.
            maybe you could do more research.

            inflammation is very common. make sure doctor checks your lid margin, lashes etc or/and with MMP-9 or dyes.

            moisture glasses is a must for pc work (block blue light too) and outdoor.

            lid seals, swimming goggle, ointment should help - good to consult doctor.

            Wise to find a real expert who can perform and inteprete objective testings for an effective treatment,
            such as osmolarity, MMP-9 etc can identify or rule out causes.

            Think positively, you can make it. Good luck.

            perhaps you might care to read my old posts
            http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

            http://forum.dryeyezone.com/forum/dr...dr-mark-milner
            thanks a lot!! MMP-9 is used for what? also whichmoisture goggles do you use? thx!

            Comment


            • #7
              Originally posted by mbperso View Post
              Welcome,
              From what I read in forums, a lot of people have got dry eye after using Accutane, so be careful with this drug.
              Good you have glands in a good shape, but 60 LLT is low and probably the cause is due to thick oil and partial blink.
              I would say : hot compress + blink exercises + ointment vit A the night.

              ya im way done with the accutane. I was wondering what could cause such a low LLT. I do all these things already, any idea for what I could do the improve my oil quality/ make it thinner? i find that unclear in my research ie what exactly makes oil thicker or worse
              thanks so much!

              Comment


              • #8
                Originally posted by avocadoeyes View Post


                ya im way done with the accutane. I was wondering what could cause such a low LLT. I do all these things already, any idea for what I could do the improve my oil quality/ make it thinner? i find that unclear in my research ie what exactly makes oil thicker or worse
                thanks so much!
                Itís thought that the byproducts of that bacterial growth inside the gland raise the melting point of the oil. Also, if the gland isnít functioning properly, the oil will become stagnant. Thatís another cause of thick oil. Inflammation is another cause.

                Comment


                • #9
                  MMP-9
                  is to detect inflammation level, if positive, doctors normally prescribe xiidra or restasis or both etc.
                  but if osmolarity is normal, then likely other issues perhaps allergy, CCH etc., according to opinion leader, Prof. Chris Starr.

                  Moisture glasses, there are several brands, dry eye zone sells them too, I am sure you can easily locate such info.

                  LLT 60 are not too bad but higher your eyes would feel more comfortable. It might indicate glands are blocked, thick oil or capping etc. IPL, LipiFlow, manual expression should help to remove blockage, the sooner is better to avoid further blockage, gland atrophy too. If you lids are not sealed 100% when blink, oil slowly become thick etc. Best is to find out triggers then do the treatment in a right order for a best result. More details see my old post.
                  Last edited by MGD1701; 15-Dec-2018, 08:43.

                  Comment


                  • #10
                    Originally posted by Dowork123 View Post

                    Itís thought that the byproducts of that bacterial growth inside the gland raise the melting point of the oil. Also, if the gland isnít functioning properly, the oil will become stagnant. Thatís another cause of thick oil. Inflammation is another cause.
                    In addition to everything you have said I think a change in the composition of the meibum (maybe some of the lipids normally present in meibum are not being synthesized by the meibocytes) could be another factor that's altering the melting point of it. Again this will come under meibomian gland dysfunction. The damage to the meibocytes maybe due to various reasons - chronic inflammation, mechanical damage due to elevated intra-ductal pressure (due to chronic blockage) or systemic drug induced damage (Accutane).

                    We need more studies evaluating the alteration (if any) in the lipid components of meibum in MGD patients and possibly scientists may try to substitute the lipid components found absent to see if it brings the melting point of the meibum within the normal range again.

                    Comment


                    • #11
                      Originally posted by avocadoeyes View Post

                      thank you for the reply!!!!
                      1. I've seen a few eye doctors now, but only specialist was the one who did my lipiview exam. however he was an optometrist and young/inexperienced and was honest about this and referred me to an expert in my area, but my appointment is only in a couple of months.

                      2. you are correct my operation was not eye related but it was on my face and i am convinced my inflammation of my face could have somehow affected my eyes.... really not sure but its the only thing i can think of that changed between my first low dose accutane and second.

                      3. good to know about the TBUT/sypmtom correlation.

                      4. i have not tried xiidra or restasis, honestly because im only 20 and afraid of trying these as they seem like one of the last options and in my mind i wonder i fthis iwll only get worse, what will i have as an option in 10 years when ive already exhausted the fancy drops? I am looking into IPL actually. my goal here is to prevent my glands from getting worse, i mean since now they are not atrophied but my LLT is so low and i wonder if early IPL in early MGD would help in preventing progression. whats your opinion on these treatments?
                      Good idea with the ipl give that a go, make sure the doctor expresses after and not before for maximum efficiency of removing the blockage. Your LLT is not ďso lowĒ believe me I have a LLT of 20 and 30. Having good glands is definitely a great find that means you have a great potential to be fully functioning again! I reckon ipl will work well for you specifically based off your information you have provided. Good luck

                      Comment


                      • #12
                        avocadoeyes Restasis and Xiidra are not addictive or ďstrongĒ or have potential for serious side effects like steroids, for instance. Restasis has been around for a decade or more and people use it safely long term. If you have inflammation from dryness, either one of them could help. For some people they make a difference, for others not so much. These are both routine medications.

                        You can post on the forum to find a doc. You definitely need multiple opinions and someone with experience to make sure the ocular surface heals.

                        Comment

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