Announcement

Collapse
No announcement yet.

Fairly new Blepharitis/MGD, NEED help/advice :(

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Fairly new Blepharitis/MGD, NEED help/advice :(

    Hi everyone
    I'm new here, I'm 16 years old and was wondering if anyone could give me any tips/advice because I'm really at a loss here...I'm going to try to sum up everything as best I can...
    Starting in about March I had went to eye doctor where he told me I had blepharitis (though he didnt say which kind and I really had no idea what this disease was at the time) He told me to do compresses, wash my lids with baby shampoo and take fish/flaxseed supplements. I did exactly that and everything just got worse. I kept losing more eyelashes, my eyes would burn, and my lids would hurt. I beleive he didn't really know what he was doing and referred me to another eye doctor.
    This one was more helpful and told me to keep up with compresses/lid scrubs but also put an ointment on a night. After about 10 days of the ointment, my condition got worse with my eyes becoming extremely red so I stopped the ointment and continued with the other things. The redness went away after the ointment but everything else stayed. After about 2 months, I called him back feeling hopeless because nothing had improved at all. He them referred me to a cornea specialist and I'm seeing him on Wednesday.
    As of now my eyes still burn, my lids hurt from time to time, eyelashes fall out and get stuck in my eye, and when i lift up my eyelid they are extremely red underneath...This whole disease has been extremely frustrating and a major blow to my self esteem as well. I already had self image issues to begin with but now looking at my eyes I just want to cry and go back to normal.
    I have sooo many questions:
    -Does anyone have ANY advice on treatment to improve this horrible condition?? I've been doing lid scrubs, warm compresses daily, and taking flaxseed supplements...
    -Once this condition is under control, will my eyes feel normal and will my eyelashes grow back and be normal again?? I know this is kind of vain but I'm only 16 and I just want to look normal like everyone else I dont even care if I can't wear makeup anymore I just want to look normal and I just need reassurance..
    -Does diet contribute at all??
    -Did anyone have success with either doxycycline or Azasite, or any feedback on them??? I really want to ask my eye doctor if he will prescribe one of them for me if it will help...
    Thank you soo much, any response is appreciated
    Last edited by mary108; 17-Jul-2011, 13:47.

  • #2
    Hi mary108 ~ my daughter is 14 and we are dealing with pretty much what you describe, esp the on/off red conjunctiva.

    Maybe the best plan just now is to prepare for your corneal specialist appointment on Wed - we type up concise but exact history to hand over to save time: date, symptoms, diagnosis, prescription, improvement/worsening. Also we make a list of questions to refer to. This way you will feel confident, will ask everything you need to know that's on your mind. Please ask the doc anything - this is your consultation and it's their job to help. This is something we've learnt. Can you take someone with you as an advocate and to take notes? They will dilate your pupils so you will need sunglasses to come home.

    Just wondering what the ointment was? did they give you an antibacterial for blepharitis?

    Once we found an anterior segment/corneal specialist we liked to work with, life was good. We've seen a few confused ophth in the past too. Mermaid's blepharitis has been managed in some of the ways you mention, various topical and oral antibacterials on reducing regimes, and her eyes are looking great. Hopefully this specialist will know how to work with you and adjust treatment to suit your eyes.

    Definitely worth holding out for preservative-free versions of eyedrops, better for your healing.

    Welcome to PM us if you want to talk to Mermaid. Hope you like the specialist and s/he gets on with some good help and treatments
    Paediatric ocular rosacea ~ primum non nocere

    Comment


    • #3
      I totally feel where you are coming from. I'm extremely vain now and have experienced a blow to my self image because of this condition. And being in highschool is even worse. I totally understand!

      I think if doctors can figure out how to help us with stopping the inflammation and figuring out what's causing our conditions there is hope to reversing the symptoms. So far I'm in the same boat as you, though, and I am still searching for answers.

      I can tell you that I believe diet definitely matters. Certain foods contribute to inflammation and to general health issues. If you are eating anything you have allergies or sensitivities to it will contribute of course. I generally don't eat out or have fried foods, and as of now I am backing off of sugar and alcohol. Also I think it's important to eat fruits and veggies and healthy fats in order to keep our whole body working right and to get the nutrients our eyes need. And drinking water, of course!

      I haven't tried some of the stuff you mentioned, but I did try doxycycline for 3 months. I read a study where the majority of patients improved from it, although I didn't. I had to stop after three months as well because I was getting side affects.

      Hope this is any help...Let us know how your appt. goes!

      Comment


      • #4
        blepharitis and Meibomian Gland Dysfunction

        @littlemermaid: wait, so the blepharitis is controlled now? Eyes look great? What about other symptoms like burning and all of those things? This is the first I have heard about the good news. Was this all from hygeine and compresses?

        @mary108: Mary, I don't what I would do if this condition came on at 16. Yes I know others that have done well with blepharitis at your age and actually as adults they aren't doing anything and everything is fine.

        One thing I noticed is that you are in Philadelphia. I have had 3 IPL treatments with Dr. Kamat who is just outside Philly. He is a nice guy and maybe you want to check this out? Or ask your corneal specialist about it?

        Comment


        • #5
          Physicians’ preferred treatments for patients with symptoms of dry eye varies as some physicians rely on mostly on a single treatment while others have different methods for the various sources of the symptoms. However, they agree that early and proper diagnosis of the source of the symptoms will give the physicians better results with their treatments. “I think the main thing when treating dry eye is that meibomian gland dysfunction (MGD) or blepharitis is very under-diagnosed,” said Colin C.K. Chan, M.D., Boxer Wachler Vision Institute, Beverly Hills, Calif.
          “You should probably start off with one or two treatments and see them regularly,” [Dr L] said. “Based on the effect of the treatment, you either add or subtract—you add if the patient saw some benefit and wants more, and you subtract if they saw no benefit, and you try something else,” Dr. Latkany said about the trial–and-error of treatment.
          Eyeworld article on skill of docs http://www.eyeworld.org/article.php?sid=3059

          NME: Sensitivity to the individual is the way forward. IPL would be a big mistake for eg Mermaid's soreness and rosacea, different aetiologies.
          Paediatric ocular rosacea ~ primum non nocere

          Comment


          • #6
            Hi all
            I cannot thank you enough for all your responses!!! I was scared I wouldn't get any...
            @littlemermaid- thank you so much. yes, my parents and I have a procedure where they make me write down every single question/comment I want to tell the doctor when I go so I'm going to start making a list. The first doctor I went to prescribed me with a zylet eyedrop which did absolutly nothing. The second one gave me the ointment, it had a looong name "Neo/Poly B/Dexameth Ophth Oint." <whatever that is...he said it was to treat the bacteria, however, I even read somewhere that ointments like that don't penetrate very well...but who knows! and also, what is PM?? Thank you for the invite, because I'm guessing its how to talk to you and thank you, I realllyy hope this doctor knows what hes doing this time!
            @Desi- thank you so much, my parents just don't understand how this is effecting me mentally like this and I just want to be cured!! I will certainly take into consideration about diet. I read somewhere that dairy, sugar and gluten products contribute to the imflammation....so long ice cream for now! but I'm going to try to examine a better diet...I'm sorry you had no results with the doxycycline, thats another thing I'm afraid of, not getting any results from an antibiotic I have to take for months just to see no results! Thank you for the encouragment though!! I just gotta get through the next couple days and hopefully I'll find an answer on Wednesday!
            @NeedMyEyes- thank you so much for the encouragement! Your comment about knowing others who have dealt with this gave me hope. and thank you for the doctor suggestion! I will definatly bring him up especially if all else fails with this new guy.

            Wow, I've said thank you alot in this...but honestly, when I came upon this page to see your responses I almost cried I was so happy I found people who will hear me out. The last few days have been the worst with my symptoms for some reason and I have no idea why. I didn't do anything different...My eyes are extremely sore right now so I'm going to go do another compress... another thing, should I start getting an eye drop?? Some parts of the day my eyes don't feel that dry at all (just sting/burn sometimes) or feel sore.. but if I just kept them more lubricated, would that help the healing process by keeping them moist???
            Also, alot of times my symptoms arn't constantly alll day...just throughout the day at different times will I get symtoms for a while however it seems to be bad at night before bed with my lids hurting...is this normal??
            Again, thank you so much for all your help! *hugs**

            Comment


            • #7
              In the past, Rebecca has posted a bunch of questions to ask your doctor. I've re-posted them below:

              1) How is my tear quantity?
              2) Do you see any dry spots?
              3) Can you check for staining?
              4) Can you press on my meibomian (oil) glands? Are they releasing oil? Is the oil clear and flowing freely? If not what does it look like?
              5) Do you see inflammation?
              6) Do you see signs of allergy?



              Good luck on Wednesday!

              Comment


              • #8
                You might want to leave reading what I say until after your corneal appointment. But thought I'd give a few tips on how I'm dealing with blepharitis.
                - These are some good tips from Rebecca when thinking about what you're currently doing to treat it.
                http://dryeyezone.com/encyclopedia/coping101part1.html
                In particular, I do cold compresses after the warm compresses, massage and lid cleaning. Cold compresses can soothe inflammation. Also from the link above
                - Don't let baby shampoo get in your eye
                - Don't overdo the warm compresses or use too much heat (I used to do quite hot compresses, which was wrong).
                - Don't mess with your lids too much
                I found that getting my home eye care routine right was an important thing - don't want to be doing anything that is going to make the condition worse.

                - This site was useful for me to try and figure out what type of blepharitis I had (in consultation with my doctor). Then we figured out a plan to treat it.
                www.aoa.org/documents/QRG-10A.pdf

                - I agree with everything that Desi has said about diet. I'd add lifestyle to that - I've found that getting enough sleep helps.

                Comment


                • #9
                  Thank you so much for your tips!!
                  @spmcc- those questions will be very helpful, I wouldn't have even thought to ask some of them. I'm definatly going to write them down for tomarow. well, also thank you to Rebecca too.
                  @dijon84- thank you so much for those sites, looking them over they were extremely helpful and also calming knowing I'm not going to feel like this forever. But yes, I'm definatly going to look them over again after my appointment and go over everything I need to do. Also, what would you suggest about diet?? (What would be a good idea to cut down on and increase etc..)
                  I definatly think I should cut back on warm compresses because I tend to do them up to 6 times a day because its summer and easier throughout the day. But what I don't understand is, wouldn't that slow the healing process as far as bacteria goes?? Because bacteria tend to love warm climate and I figured that'd be perfect for them even if it does feel good for the time being...
                  Thank you again for you response!

                  Comment


                  • #10
                    successful blepharitis patient

                    Here is a poster on another forum that really gave me hope that I could get over my condition. She later posts as CSLewis and you can search for her. She says it took her 1 year and 10 months for her doctor to say she has no more signs of blepharitis and he can't tell that she ever had it! She was asymptomatic before that though...

                    http://www.healthboards.com/boards/s...rchid=22277338

                    Comment


                    • #11
                      Thank you so much for all your help!! Just to update everyone, I know I'm a week late, but I've been away at relatives for the past week. However, I went to my eye appointment last Wednesday and I asked him all sorts of questions. He gave 3 things: Systane lubricating drops, Alrex drops 3 times a day for imflammation, and FML ointment for the outer corners of my eyes. He said basically I have to get the imflammation down but did not see much sign of infection. I've been doing everything he has told me for the past week now and not much improvement at all but I'm still hopeful because he gave me this treatment for 2 weeks followed by a follow up so I have one more week to go.
                      For the record, he did tell me that it may take awhile but thats something I already knew. The first time I put in the Systane my eyes burned, so I didn't do that again. However that was a week ago and I put them in today and they felt better...so who knows!! I'm kind of worried for the follow up in case he doesnt make another follow up after that and I'm stuck with the same discomfort all over again... :/

                      Comment


                      • #12
                        So he thinks it's allergy, without meibomian dysfunction?
                        Paediatric ocular rosacea ~ primum non nocere

                        Comment


                        • #13
                          My heart just goes out to you. I'm so sorry you are dealing with this at such a young age.

                          You've gotten a lot of great advice above and forgive me if I'm repeating something someone else has said but please do listen to your instincts. If something burns or you find that it causes redness & inflammation, you definitely could be allergic to it. I've learned that I'm allergic to anything with castor or mineral oil in it. There was a time when it didn't bother me but I developed an allergy to it. One of my doctors is irritated that I won't use Refresh PM (over-the-counter nighttime ointment) at night but every time I do, my eyes are much more red & inflamed in the morning than when I don't use it -- and worse, my eyes are much drier throughout the day when I've used the ointment at night. When you mentioned being bothered by the ointment, the first thought I had was "she must be allergic/sensitive to castor / mineral oil". It's entirely possible that you are NOT allergic to it but keep a log for a while re: your reactions. If something stings, make a note of it. If you put something in at night and in the morning, your eyes are redder and more inflamed than before, make a note of it. These things can help your doctor and you get you on the right track for treatment.

                          re: cold compresses ... one of my eye specialists suggested using organic green tea bags as cold compresses. You can just run them under cool water until saturated, gently squeeze excess out and place over your eyes for a bit. It feels great and the caffeine in the tea helps with the inflammation. If you'd like them to be colder, put them in the fridge for a bit before you place them on your eyes.

                          Make sure that you are using preservative-free drops (in vials) in case you are sensitive to preservatives. Also, some people (me included) are sensitive to baby shampoo so instead, we use sterile saline (not the kind you use for contacts) as a "scrub" with Qtips.

                          I'm glad you have a doctor you feel better about now. Good luck and I'm crossing my fingers for you.

                          Comment


                          • #14
                            Hi, thank you for your support!
                            @littlemermaid- no, he said my glands are definaltly blocked up but the oils arnt thick he said. Just imflammation and blocked etc..He did not say directly that it was allergies but since he gave me those drops, i guess?? I'm not sure, but I'm going to ask him about that when i go back in a week. I'm pretty sure he just gave it to me because of the imflammation though. He also said it was rare that i had such a condition (fabulous...) but oh well! im still workin on it! ..he also said to stop with the hot compresses and the lid scrubs and just keep with this right now for some reason...this is complicated
                            @potatocakes- thank you for your support!! I really hope i get this improved especially before school! ..ill keep updated!!
                            @NeedMyEyes- do you think you can please send me that link again?? because i clicked on it and it wouldn't go through saying it wasn't availible or something. I'd be interested in reading it
                            Last edited by mary108; 28-Jul-2011, 12:56.

                            Comment


                            • #15
                              I guess you will have to go to google and type the following in the search bar:

                              jen2003 posterior blepharitis

                              The first link will be the person I am talking about. Good luck!

                              Comment

                              Working...
                              X