Myasthenia Gravis News Forums Forums Mental Health and Self-Care How does wearing an eye patch for Myasthenia gravis make you feel?

  • How does wearing an eye patch for Myasthenia gravis make you feel?

    Posted by jodi-enders on June 26, 2023 at 6:45 am

    Many of us diagnosed with Myasthenia gravis experience double vision at some point or another. Alternating an eye patch with the eyes can help regain vision strength and improve eyesight. However, this is often a temporary improvement. 

     

    Before I was diagnosed, I thought that when I saw others wearing eye patches, it was due to an infection or eye injury. Strengthening the eye muscles to improve vision was never one of my thoughts. Was this your thinking as well?

     

    Have you experienced improvement from wearing an eye patch but feel embarrassed to wear it in public?

    linsieghotmail-com replied 7 months, 3 weeks ago 10 Members · 10 Replies
  • 10 Replies
  • bbernadette

    Member
    June 28, 2023 at 5:07 pm

    I’ve had double vision due to MG for 20 years. Some days are worse than others with my vision. I wear a patch when I need to and it certainly eliminates the binocular double vision, though sometimes I find it hard with monocular vision. I’m not embarrassed wearing an eye patch now, but early after diagnosis I was. Generally prisms in my glasses help to alleviate much of the double vision.
    I am not aware that wearing a patch will help improve vision for MG patients. Wearing a patch certainly does not improve acuity, except for eliminating the double vision.  Could you cite your source so that I can read more about it.

    My understanding is that because individuals with MG have antibodies that block the AChr receptors, the eye muscle weakness is due to the interference in the neuromuscular transmission—not weak eye muscles per se.

    Someone with strabismus (usually kids) can benefit from the eye patching to strengthen a specific eye muscle and hopefully prevent amblopyia.

    Do you wear an eye patch?

    Bernie

     

    • benny-foley

      Member
      July 2, 2023 at 1:29 pm

      My neurologist and ophthalmologist told me that prism lenses would not help. Would you kindly share with me your experience with the prism lenses?

      Best regards

      Benjamin Foley

      • sharon-evans1711

        Member
        August 19, 2023 at 12:55 pm

        After trying mestinon and prograf which did nothing

        Was also told prisms would not work got them anyway my

        Neuro opthamologist wrote the script and said get them made at a reputable

        Eye glass place not Costco or the discount stores

        The deal was that if the first perscription did not work the optician would redo

        Them for free which did happen but they are great am getting prisms for all my eyeglasses

        Have heard the stick on ones do not work well

  • kent-estes

    Member
    June 28, 2023 at 8:45 pm

    Wearing a “pirate eye patch” is an addition to my wardrobe.  It certainly helps my vision and ability to drive, and sometimes just walk.  I buy mine from Amazon in bulk and I wear a new one frequently.  I really don’t notice or feel it on my face. Sometimes I even fall asleep in bed at night wearing it.  I do trade from the right eye to the left eye to strengthen the muscles.

  • Tina

    Member
    June 29, 2023 at 12:09 pm

    I only wear it at home. I would never do it in public as I already get enough weird looks from being too tired at my age

  • winston-d-roden

    Member
    June 30, 2023 at 2:58 pm

    I developed double vision in early 2019.  I was lucky in that it took only three trips to medical people to get a diagnosis.  My optometrist sent me to a Glaucoma specialist and I never even got past registration before they know I was at the wrong place and sent me to NeruoOpthamologist in the same business, different location.  She recognized it, first case she had, in just a few minutes and prescribed Mestinon.  After that failed to give good results she sent to a neurologist and who treated me until she moved across country and sent me a neurologist in UAMS, Little Rock, AR.  In the early period I did as much online research as I could and quizzed the doctors, both of who responded to my questions.  I already had cataracts and have been wearing prescription lenses for years.  I would block out one eye so I could see more clearly but of course I did not have any depth perception.  The Neuro said do not block the same eye all the time, so I swapped between two pair of glasses.  Finally lost one pair so now I use the one for my master eye.  I am able to go some, a little more than earlier in my treatments, times without either eye blocked.  I prefer to paint a lenses in a pair of glasses and remove the lens so I have peripheral vision.  If the vision does not overlap between the eyes, I do a bit better.

    When I first started I was more sensitive than those people around me to the blocked out eye.  However I have a friend who lost vision in one of his eyes and has been wearing a blocked lenses for years so I figured if he could do it, I could.

  • benny-foley

    Member
    June 30, 2023 at 3:13 pm

    I was diagnosed two months ago with double vision, and my acetylcholinesterase antibody positive.
    I am seeing a neurologist, and was diagnosed Mestinon, Cellcept and prednisone 20 mg  I have worn a patch for the last four months and of course it is very frustrating to not have your peripheral vision in one eye  however, I have 2020 vision in both eyes  the double vision is beginning to clear somewhat, and I am able to go for periods without the patch  of course I must be careful, and will soon return to driving when I feel I am ready. It was quite devastating at the beginning however, I have grown to accept  it. I pray the double vision will completely subside with my medication’s the prednisone, 20 mg takes me on an emotional roller coaster in two months. I will be tapering the prednisone. This is certainly a new normal that I have to get a custom to. We don’t like it, but we must accept it.

  • thomas-lee-clark

    Member
    June 30, 2023 at 9:34 pm

    Eye Patch When Ocular first arose I tried the pirate patch and could not abide it touching my face. the tape-on vision disc was best for me. for  short while it was too disorienting to walk with eyes open at all. I was led around. Now I am going through cataract  and retina work and still can’t stand the patch. As my “good” eye tires the vision gets squirrely and my mind is brought back to MG days. The doc said it is always in the background. At onset of MG I still had flashes of light in rite eye while covered. Mg had constant changes for me.

    I kept looking for A bridge to jump but I always tried climbing up the wrong one of the two. Driving in a construction zone and the convergence of orange and red barrels was fun too. same bbls two colors.

  • jeri-castellanos

    Member
    July 5, 2023 at 6:07 pm

    i have worn an eye patch many times after being diagnosed when my medication failed (which happens often) I have never been told that it would help “strengthen” my eyes. I have never noticed my eyes getting stronger because of it. Yes it is embarrassing to wear in public but sometimes it is necessary. If you want to drive, or not run into anything then it is a necessity. It sometimes makes me dizzy and there is no depth perception but if you’re careful with a patch it can help. Unfortunately sometimes there’s no alternative if you want to function.

  • linsieghotmail-com

    Member
    August 23, 2023 at 3:24 pm

    I have ocular MG and did not want to wear a patch over my eye. I get headaches from wearing straps around my head. Instead, I cut a piece of removable window blackout film to fit my glasses lens. The other solution I found are black lens covers on Amazon. They wrap over the lens and stem of the glasses. I didn’t feel safe driving with my side vision blocked and cut off the stem cover. Mestinon controls the blurred vision pretty well for me. I use the patches when it doesn’t.

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