I have in recent years become more and more bothered by double vision when I am tired/fatiged. Of course, it is worse during flare-up periods. Now it can be seen in photos of me, and my family has commented that I am becoming cross-eyed in the evening.
I mentioned it to the ophthalmologist at my last checkup, and she examined me and said that it must be the eye muscles getting tired. She also asked if I had Myasthenia Gravis. But I have been tested for that - so no. She said that it could not be GCA, as would have pain.
I have now discovered that the double vision is in both eyes. That is, even when I cover one eye! I was looking for the northern lights in the night sky and there were 2 moons. I then covered one eye and there were still two...
Does anyone else have this problem?
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krillemy
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Might want to get that checked by a rheumatologist.
"If you have GCA you may have a headache on one side of your head. This may be different from other headaches. Some people have painful headaches when they chew. The most serious symptom is a change in your vision. You may have blurry vision, double vision, or blindness." (aafp.org)
Thank you - however I have a Rheumatologist who is not alarmed, and I have previously had blurred vision, but the Rheumies at the hospital do not think that I have GCA (never had raised CRP) and will not scan or take other action....
Wonder how we get them to understand it simply isn't true? I know Snazzy says her markers including CRP were stubbornly normal even as she sat in the ED with her vision shutting down!!!
Oh yes, until they gave me 60mg Pred my scalp felt like it had been dipped in acid. I was also getting jaw claudication when on chewing that day. There was tenderness if one pressed the temple on the right and less so on the left but my scalp was so uncomfortable that that wasn’t the main issue. 2 days before I noticed a slightly raised vein at the end of my eyebrow. During that week I was getting building, intermittent discomfort behind my ear which I put down to over use of a cordless phone and my usual neck tension. My pillow irritated my head, the March wind was extra cold on my right cheek and my glasses felt uncomfortable. Morning pain in the base of my skull like a tension headache was more persistent but gone by the time I had cycled 8 miles to work during which I got fleeting black spots when I was puffing over a rise. I never got double vision but others do. In the night for some months if I woke for the loo I had my right eye only seeing grey not black of the room and I got little sparks in my vision. These both cleared up in minutes. None of the symptoms were bad enough to see a doctor. On the evening before A&E my husband was watching the rugby and I couldn’t bear the sound of the crowd and felt a bit odd. I woke that night with my scalp really sore and a foggy head and sparkles after a dream where a voice said go and look at your garden because you won’t see it soon. Finally my brain kicked in and I remembered what I’d learned about red flag headaches in patients.
The point of that ramble is that that is my story and of a slow creep but others will have different ones and that is the confounding issue with GCA. People work from the list in guidelines but actually timescales and individual’s symptom patterns vary. My question to any doctor who dismisses GCA is if it’s not that then what is it? Double vision can be a sign of something else that warrants intervention sooner rather than later. I wouldn’t feel happy unless they made their decision based on proper investigations or gave me a solid rationale. The trouble is they are unlikely to have experienced it themselves.
I have had double vision with one eye affected and it was horrible! The hospital opthalmologist diagnosed sixth nerve palsy and an orthoptist recommended a prism to be attached to the lens of my glasses to correct the problem. Every so often the prism strength was reduced until I no longer needed it.
I cannot understand why your rheumatologist isn’t recommending investigations into what is causing your double vision- a condition that I found distressing mentally and physically. Have you seen an optician for an OCT scan (optical coherence test) to check the back of your eye?
Thank you so much. It sounds like I need to see a different optician. I do find it scary. I do not think she did a OTC scan. Checked mostly for cataracts.
I would definitely try a different optician. When you make the appointment tell the person on the phone that you have double vision so that staff are aware.
Hello ! I was diagnosed with PMR feb 2023 and about April ‘23 noticed double vision particularly when reading. I eventually went to my high street opticians ( convinced I had GCA because of jaw/ head pain as well ) and was referrrd promptly to hospital eye clinic. Cutting a long story short and after dentist input as well I was diagnosed with temporomandibular jaw disorder and diplopia- hospital corrected the problem with prisms and said it was muscles…. I do still get double vision when I’m tired but nothing like I had before. All the best .
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