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TOPIC: eyes and dystonia

eyes and dystonia 3 years 3 weeks ago #3408

  • Supergran
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Can I ask does anyone get double vision with dystonia? when it happens I can make it go away by blinking but it quickly comes back. This only happens when I am tired I am just wondering if this is part of dystonia
Last Edit: 3 years 3 weeks ago by Supergran.
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eyes and dystonia 3 years 3 weeks ago #3413

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I would like to share the answer to my own question...... I have been examined today by the Optician and then went to see the Neurologist at the hospital. The outcome from both meetings was that double vision is a very rare type of dystonia which affects the muscles attached to the actual eye ball. The double vision behaves like any other spasm in that it comes and goes. It can drive you nuts for a few hours and it can go and not come back for a period of time and because of its intermittent nature there is no treatment or coping strategies other than to be very careful.
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eyes and dystonia 3 years 2 weeks ago #3422

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Hi Supergran.

That sounds awful my heart goes out to you.

I have Dystonia of the eyes only had it for 9 months, having Botox injections but there not working as yet,

It's a nightmare

Rick
Rick
Last Edit: 3 years 2 weeks ago by Rick.
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eyes and dystonia 3 years 2 weeks ago #3426

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Thank you for your kind words I have to say for the first couple of days I was quite panicked by it and then the optician told me that something called a prism can be put in my glasses and that it would not affect driving etc with the prism so I thought good job done etc....then I went to the neurology appointment and he said no I can not have the prism because my eye will get used to this and the eye muscle will then stop working completely and i will be dependent on the prism so home i go quite tired with the emotion of it all. I was also on xmas holidays from work and so was able to get plenty of rest. In the process I calmed down and was able to assess the situation properly. The outcome being that I need to not allow myself to get tired stressed etc...usual stuff for this condition and I do have a situation at work in short I need a chair that supports my spine and no one feels brave enough...and by that I mean the woman who normally does the workplace assessment, occ health, works physio and we are now on to the health and safety department..talking a chair with a high back here not rocket science or made to measure! and we are now talking 11 months down the road and as yet still no chair. so I think this could have something to do with the eye problem and so I have decided I can only do the job with the tools given and so if the chair is not being given then I can not do that part of the job and consequently for the moment my eye appears to have settled I am 3 days back at work so we will see how long this lasts. But on a lighter level this eye thing is quite bizarre if there are 2 people on the tv screen for me that becomes 3 I only have to move my face the slightest bit for the spasm to pass, it comes back but a blink or slightest movement and it goes. The only thing I will say is at its worse my actual eye ball became sore with the spasms and painkiller did not touch it I had to lie down in a dark room with shut eyes to give them a break.

All I can say is thank god for a sense of humor and I did feel happier when I checked with the optician that I was not walking about with one or both my eyes pointing towards my nose....yes I know but one can still have ones vanity even with dystonia!!!...any way thats not the case my eyes go slightly out of alignment and one of them shakes.

All the best and thanks for listening to my ramble

Christine XXX
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eyes and dystonia 2 years 11 months ago #3478

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Wee update and very interesting news following a set of tests with an ophthalmologist. it is dystonia and the muscle spasms have apparently given me a squint due to the imbalance of the working muscles and here is the weird bit....if you look towards your nose you get controlled double vision. However mine is not controllable so as I watched and followed the pen size light I found my eyes went into double vision with anything from a couple of inches to about 6/7 inches between the double vision in different places and the double vision isnt blurry its as clear as a bell but if you look at your nose with both eyes then you get a double/blurry attached double vision. The outcome is that dystonia is damaging the eye muscles and is giving me a squint!!!

Further tests were for a colour being added to my glasses and my reading was tested with this and with a certain colour it improved my vision for reading immensely. I will be going for a 3 month check up once the glasses etc arrive and hopefully this will take the visual stress away from the dystonia. Will keep you posted.
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