Double vision

Centime Tara

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I’ve been experiencing double vision lately. Each eye seems ok by itself but together it’s like an extreme inability to focus. It lasts for about ten minutes, then goes away. I’ve seen eye doctors and a neurologist—no help This has happened a half dozen times, closer and closer together. If you‘ve had experience with this I’d really appreciate hearing about it. Could it be a symptom of ME? Sorry if this message shows up twice—the first one disappeared.
 

belize44

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I am not a physician, but it sounds like a weakness in the eyes. I can't believe that they don't know what's going on, though; that is discouraging. If you figure ME affects our muscles, it would make sense that the musculature around the eyes could become over tired or weak. Are you seeing someone for the ME itself? They might be familiar with this.
 

belize44

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Thanks, Belize44. I haven’t been able to find a doctor who knows anything about ME, and I’ve seen every kind of specialist out there. Muscular weakness makes sense to me, though. But what to do about it?
I have weakness in my right eye, due to repeated inflammations. I find that eye exercises can be soothing, and may help. Also, applying warm compresses to both eyes before beginning the exercises. They are really easy; just staring at the most distant point, then at one slightly closer, then very close, then repeat. Also moving the closed eyes up, down, sideways, etc. It's a shame our medical condition often becomes DIY!
 

Wishful

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I developed double-vision maybe 15 years into my ME. I'm pretty sure that it'd due to altered neural function. I recently noticed that while I have strong double-vision with my long-distance glasses and with no glasses (the moon is two big fuzzy blobs), it's much less with my reading glasses. There's also a point around twilight when the double-vision is less, so I think it's how the neurons process the visual signals and use that to adjust the eye positioning muscles, and/or how the eye muscles feed back to process images (proprioception). I think it's also stronger when there's a major difference in brightness, such as a bright object against a dark background or a dark object against a bright background.

I've been wondering whether screen time (short focus) is part of the problem, but I haven't come up with a good way to test that without giving up screen time. Screen time with one eye covered didn't show any quick improvements.
 
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I have had similar eye issues all my life. And when I'd go to the eye doctor they would just dx some small amount of astigmatism - to which glasses never helped. When my health is worse the vision problem is worse. Screens and reading are the worst.

Long story short - call around until you find an eye doctor who knows about prism lenses. They need to test for divergence and convergence. I learned about all of this on an Ehlers Danlos Forum. Two years ago, I paid a fortune for glasses that didn't work, told them to fix it, they still didn't work and the woman who does the fitting pulled me aside and said, "I think you should see Dr. Wylie in Spokane. He deals with unique eye issues." He literally did a 10 second test while in his exam chair, said, "Yep, you have a convergence issue. Totally common in EDS." They made me glasses with my astigmatism correction and with a prism lens (you cannot tell) and vioila! First time in my life I can read comfortably. Recently, I asked his staff why all docs don't perform the test and know about divergence and convergence. She replied, "It isn't covered by insurance."

Anyway, I've referred several friends to him and similar story, first time they have glasses that work.

When I am feeling decent, I don't even wear glasses. So, I definitely believe eye strength has to do with other things.

Oh, he also does a test on the computer that tracks how well your eyes are tracking. One of my eyes could hardly track (30%) both were poor. This has to do with either brain function OR optic nerve function. It's an amazing test and called: RightEye Functional Vision EyeQ
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Mary

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Thanks, Belize44. I haven’t been able to find a doctor who knows anything about ME, and I’ve seen every kind of specialist out there. Muscular weakness makes sense to me, though. But what to do about it?
Low phosphorous causes double vision for me. Low phosphorous causes muscle weakness. It also makes swallowing pills more difficult for me because of course it affects throat muscles too - it affects all our muscles, but I think symptoms show up earliest with smaller muscles. Low phosphorous if severe enough causes severe fatigue - I've had it.

I first learned about this when I started taking thiamine 4 or 5 years ago. The thiamine gave me a really good boost of energy, followed a day or 2 later by severe fatigue. This reminded me of what happened when I started taking methylfolate - it caused my potassium to tank due to refeeding syndrome (a good article on refeeding syndrome: Refeeding syndrome: what it is, and how to prevent and treat it - PMC (nih.gov) )

But potassium didn't do anything for this fatigue. Then I speculated that maybe the thiamine caused my phosphorous to tank as hypophosphatemia is the hallmark of refeeding syndrome. I read that dairy is high in phosphorous, drank several glasses of kefir, and bingo! That horrible fatigue went away and I was able lto continue with the phosphorous which I badly wanted to do.

Here are symptoms of hypophosphatemia from Wikipedia:

Signs and symptoms
Muscle dysfunction and weakness – This occurs in major muscles, but also may manifest as: diplopia, low cardiac output, dysphagia, and respiratory depression due to respiratory muscle weakness.

Mental status changes – This may range from irritability to gross confusion, delirium, and coma.

White blood cell dysfunction, causing worsening of infections.

Instability of cell membranes due to low adenosine triphosphate (ATP) levels – This may cause rhabdomyolysis with increased serum levels of creatine phosphokinase, and also hemolytic anemia.

Increased affinity for oxygen in the blood caused by decreased production of 2,3-bisphosphoglyceric acid.
 

Mary

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I actually can tell my phosphorous is getting low when I start getting double vision (usually at night) or have trouble swallowing my pills. I have to take a phosphorous supplement 3 times a week or so.
 
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I have developed double vision after driving. It has happened twice now, firstly in July 2021 and then again in December 2021. In between these 2 episodes I didn’t do much driving.

I have a motorhome (RV) which I potter around Au in, usually driving about 2 hours a day. On both occasions the double vision was noticeable after I stopped driving on the third day. On the first trip I had a rest day in between each driving day, on the second trip I drove 3 consecutive days.

Although there is nothing to indicate my eyes are getting tired, my feeling is that it is CFS related and that the muscles just get tired and decide to stop working.

After the first lot of double vision I was given prism spectacles (3 strength) by an optometrist and the problem was corrected.

I saw an optometrist after the second lot of double vision and was prescribed stronger prism glasses (5 strength). He suggested that I wait and see if the double vision corrected itself, but I went ahead and asked for new spectacles to be made up, which took 3 weeks.

Great news … my double vision has corrected itself after 3 weeks and I am now able to go back to the non prism spectacles I had before the first lot of double vision. As my vision was so bad, I spent a lot of the first 10 days lying down listening to audio books with my eyes shut .. and I’m wondering if this helped with the recovery.

I‘m posting this for interest and to see if anyone has had a similar experience of double vision after driving. If it happens again, I’ll try Mary’s suggestion of the phosphorus supplement.
 

valentinelynx

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I've had some degree of double vision my entire life, thanks to being born cross-eyed. I had eye muscle surgery when I was 2 years old, but never developed good binocular vision and when tired, I'd see double. In more recent years, the double vision got worse and interfered with my reading. It was especially bad with reading newspapers, as two adjacent columns would get mixed up, making for some bizarre sentences!

When I was diagnosed with craniocervical instability, I also discovered that my double vision was made worse by it. Traction improved my ability to read without double vision issues. I underwent craniocervical fusion last March and the double vision is much improved. It's not 100% gone, because I still have poor eye muscle coordination, but it's back to the baseline where it was before it got worse.

Bottom line: double vision can be a sign of craniocervical instability.
 

Centime Tara

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I was having incidences of double vision after reading or working on the computer. Someone on this thread suggested the prism solution, so I found a doctor that was knowledgable about it and got a new prescription. So far, it’s worked. But interesting to know about the craniocervical possibility. Thanks for posting this.
 

Wishful

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My DV seems to correlate with my proline intake. If I have more proline than usual, my DV is high. If I'm careful to minimize my proline intake for a day or two, my DV is significantly less. Part of my morning and evening routines is to look at some distant solitary spruce trees and see how far apart the two images are.