Worsening diplopia with no explanation

Posted by beka @beka, Mar 11, 2019

Hi! I’m new here. My name is Beka. I’m 43 years old, and I live near Atlanta Georgia. I’ve cross-posted this since we’re still not sure what’s going on.

My journey started 20 years ago when I was diagnosed with Crohn’s. That and a couple of other little things like psoriasis and migraines. (It’s still weird to lump Crohn’s and migraines in as “little” things.)

However, in the last 5 years, I’ve had a cascade of issues that has led to a laundry list of diagnoses that are autoimmune or related conditions. Among these are Rheumatoid Arthritis, Reynaud’s, CFIDS, Fibromyalgia, etc. Many of my issues are still unexplained. One of the most annoying, concerning to me is, in a nutshell, bilateral monocular vertical diplopia. That is, double vision where the ghost images are above and below the actual thing, it’s still present when one eye is closed, and both eyes are affected. This problem is getting worse as time goes by.

I’ve seen several ophthalmologists, a neuro-ophthalmologist, and a retina specialist since I am taking Plaquenil for my RA. The Plaquenil use was ruled out as the issue. The only thing (that I am aware of) that they were not able to rule out was another autoimmune disease.

Several of my doctors have expressed concerns about MS, but 3 brain MRIs in the last 5 years have not shown any lesions. Myasthenia Gravis is another potential, but my primary is unable to order the antibody tests, and I fired my rheumatologist for being a total jerk. I am in the process of finding a new one, but it’s difficult to find a doctor that is willing to take input from the patient or another doctor (in my experience).

So, to stop my post from getting any longer, has anyone experienced this type of diplopia? Or does anyone have MG with ocular problems that sounds like this? Are there any other conditions that should be considered?

Any help would be greatly appreciated.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@dablues It must be hard to get around if you have double vision. If I understand you correctly, you do not have prism glasses? Is that right? There is such a thing as prism glasses. Whether or not they would be applicable to you I can't say.

May I ask if you have called your provider regarding your prescription?

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My provider was Emory Eye Clinic in Atlanta. They are aware I have double vision. I saw a specialist first, then had my cataracts out, then they prescribed my glasses. The only one who mentioned prism glasses was the specialist I saw first, then he sent me to the doctor for my cataracts and that is the last time I heard about prism. I already ordered my glasses but haven't gotten them yet.

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Hello folks with diplopia! I developed diplopia after tube shunt surgery for glaucoma - one of the muscles in the eye was affected. This was in December, 2018. I had no idea what was going on except that I knew I couldn't see my feet, and everything below about chest level was in double. I had to do extensive research on my own, even though I have a Glaucoma specialist and also a Retinal specialist. I finally found an Optometrist who specializes in low vision - after visiting 3 others. I was finally properly diagnosed and given prism lens in my glasses. MOST important, I started getting Vision Therapy. There really is a process that can retrain the brain/eye interaction resulting in better functioning. The Ophthmologists are not necessarily on board with this; however, it was my decision, and my vision improved, significantly. I still have diplopia, but am fortunate that it is only monocular. With the Vision Exercises, the diopters in my prisms (a measurement for the strength on the prism) has been reduced significantly. I still have to deal with diplopia, but I have some measure of control over it and how I allow it to affect me. So, my advice to any one dealing with diplopia is to find an Optometrist who is associated with Vision Therapy in her practice. You can find help! Good luck - Sue

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@dinoman

Beka, I forgot to ask. Has any of your eye doctors tried 'prism' glasses for your double/poly vision correction?
I was at an MG group, and borrowed a couple of other patients glasses for a moment to try on and they sharpened things up for me.
At the doctors office they tried a couple prism lenses on me, but, they didn't seem to work as well. After my cataract surgery, they
may try some more, assuming the cataract surgery doesn't help with my double/poly vision.

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Hi @dinoman I too have diplopia. The type matters on which nerve is affected. The nerves control the eye muscles and are responsible for the eye movements. Depending on how the eyes are twisted a prism may or may not help. In my case they do not so I have to consider eye surgery. For now I am working on vision therapy which seems to be helping. My only concern is the motion sickness due to the diplopia. Hope this helps. Toni

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@ashby1947

Hello folks with diplopia! I developed diplopia after tube shunt surgery for glaucoma - one of the muscles in the eye was affected. This was in December, 2018. I had no idea what was going on except that I knew I couldn't see my feet, and everything below about chest level was in double. I had to do extensive research on my own, even though I have a Glaucoma specialist and also a Retinal specialist. I finally found an Optometrist who specializes in low vision - after visiting 3 others. I was finally properly diagnosed and given prism lens in my glasses. MOST important, I started getting Vision Therapy. There really is a process that can retrain the brain/eye interaction resulting in better functioning. The Ophthmologists are not necessarily on board with this; however, it was my decision, and my vision improved, significantly. I still have diplopia, but am fortunate that it is only monocular. With the Vision Exercises, the diopters in my prisms (a measurement for the strength on the prism) has been reduced significantly. I still have to deal with diplopia, but I have some measure of control over it and how I allow it to affect me. So, my advice to any one dealing with diplopia is to find an Optometrist who is associated with Vision Therapy in her practice. You can find help! Good luck - Sue

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Hi Sue @ashby1947 Good to know vision therapy has helped your double vision. How long did you do the eye exercises? Toni

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Hi Toni - I worked with a therapist for about 8 months, but the real work was done by me at home between sessions. I should be doing exercises as home (nothing is difficult), but for whatever reason, I've gotten out of the habit. Repetition really is the key, since I'm retraining my brain/eye connection. I hope things are going well for you. Keep us posted! Sue

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Hi Sue, nice to hear from you. Thank you for your help. i am currently doing my own eye exercises since transportation is an issue. The closest vision therapIst is 40 minutes away so this was not an option for me. I chose to use an app for the daily eye exercises I do at home. It has been 4 months now since I started and see improvements. The only thing is dealing with the motion sickness. I have noticed the adjustment time has decreased. Before it took longer for the image of the bad eye to shift closer to the good eye. Because the movement is not instantaneous I get motion sickness and feel dizzy. Did you experience any symptoms of motion sickness? The only remedy for me so far is to not move. What did you feel before your double vision was resolved? Do you need to continue with vision therapy for maintenance? Sorry for all the questions. I am trying to learn more about retraining the brain/eye connection. I find it very interesting. Thanks again. Wish you well, Toni

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Hi Toni - It is so good to talk with people who are experiencing some of the same issues as you are. I know I have found it helpful. My diplopia was the result of having tube shunt surgery to relieve glaucoma. The surgery was successful; however, in the process one of the eye muscles got "caught" (my word) and resulted in the diplopia. Mine is only in one eye and affects my vision from about shoulder level down. For example, when I look at my feet or a dinner plate, I see double. My distance vision is perfectly fine, and I no longer need glasses for far vision..... perhaps a silver lining?!! My prism glasses are for working on the computer and reading (which is difficult to do for long). I have no motion sickness. I do feel very disoriented when I am walking, and if I'm going up/down a step or curb, I drop my chin to my chest and look through the top part of the eyes which is not affected. Quite the little cutie, I am! My double vision is not resolved, nor will it ever be. I am 74 and will not consider any more eye surgeries. I have adapted to the diplopia; however, I feel extremely insecure and find that this has limited my confidence in how I go about daily activities. I can still drive, but do not trust my peripheral vision in the affected eye. Vision Therapy definitely works, but it has to be consistent. You may want to consult with an Optometrist who specializes in low vision, including diplopia. Not many Optometrists or Ophthalmologists deal with it. Another thought would be for you to arrange a visit with a vision therapist and see her just once for an evaluation, assessment, and to check whether you are doing the best exercises for your vision problems. I know you said it was not an option, but perhaps you could make the trip just once. And keep talking on Mayo Connect. I find a wealth of information and kind and caring people. Hope this is a good day for you! Sue

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Hi Sue @ashby1947 Yes, I agree. I find it very helpful talking with people who have similar experiences. Since your diplopia was not resolved how did the eye exercises help you? Sounds like your muscle controlling eye movement downwards was affected. I have a similar situation where my eye movement of downward and inward is affected. The second image is tilted at an angle as well. I find myself compensating without realizing it. I often tilt my head and have my chin to my chest. Because my second image is so twisted a prism does not offer any help. I see a neuro ophthalmologist where I have tried the different prisms. He gave me an explanation of why a prism cannot work. I discussed the details of the operation he would perform. It would be outpatient and only take a few minutes. He would adjust the eye muscles so one muscle does not pull more than the other to cause a second image. I researched the information after the visit. The successful rate of the first time surgeries is over 80%. Some take a second surgery to become successful. My neuro ophthalmologist had said I would need a slight adjustment. If an over adjustment occurs then the prism would help correct the diplopia.

I have a friend who lives in Pennsylvania. She had diplopia as a result of a concussion from a fall. About a year after her fall she told me I should try seeing a vision therapist. She did. I researched but could not find anyone near me in central Florida so I dropped it. After approximately 6 months she called me to report her double vision had come back. She had found out because of her vision therapy her eyes got better and no longer needed a prism to help her.

Since finding out about the eye surgery to correct my double vision I called a couple offices that provide vision therapy here in Tampa as another option to surgery. I was not happy with their responses. I was told an evaluation would be needed to determine if exercises would help. The cost would be just under $400 and take 3 hours. I was warned medical insurances do not cover it. Besides the transportation being an issue, I thought that is an awful lot of money and time to spend finding out IF vision therapy can help. That is when I researched and began my own eye exercises and slowly saw improvements. Due to my medical insurance the eye surgery will be 100% covered in January of 2022. I thought to try eye exercises until I see my neuro ophthalmologist next in June 2021. I can discuss eye surgery in further detail then with him.

Thank you SO much for your advice. I will consider it. I am 17 years younger and feel that motion sickness stops me from activities. My eye physician agrees my diplopia is causing motion sickness. Since the eye surgery poses very little threat in my ability to see( only in rare cases of infection) I am thinking to give it a try. In the meantime I will see how effective the eye exercises will become by the time I am ready. Thanks again. I am so glad you have found relief for your diplopia with a prism. I can certainly understand how the diplopia affects your life and why you choose no surgery. If a prism offered me help then I would probably not do the surgery either. Toni

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I've found out that one of the side effects of a blood pressure medication that I was taking causes double vision.
especially for males over 60. I'm over 60 and male .. and I have a weird muscle disease that is calcium-channel related
(the BP med is a calcium channel blocker) .. The timing of the start of the BP medication and my double vision seems to match up.
here's a link to some of the FDA reports
https://www.ehealthme.com/ds/amlodipine-besylate/diplopia/

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