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TOPIC: Do you have eye problems as well as Neck Dystonia?

Do you have eye problems as well as Neck Dystonia? 1 year 7 months ago #3957

  • bdavies
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A little survey -
My neck turns to the left and I wondered if there is any link with eyesight. I know quite a number of people with neck Dystonia and many seem to wear glasses as well, although not all. I wear contact lenses and my left eye sees distance, my right eye sees close up. My brain adjusts to seeing generally well, but if I close one of my eyes it makes a big difference to what I can see.

When I go for a walk it is a nightmare - my head turns left. If I walk along a corridor or shopping aisle, things are really bad.

I have also noticed that if I am eating with my left hand (eg. holding a fork/spoon) then my head stays more in the middle. However if I eat with my right hand, my head goes pinging off to the left. I am trying to use my left hand now to see if there is a difference or maybe this is a sensory trick. I notice from the Dystonia website that sensory tricks often work best on the side your head turns to - could there be a particular reason for this - eg. raising the arm on the side of your Dystonia pull?

I also use a shoulder bag that is like a backpack so I don't have all the weight on one side, this seems to help balance things out. If I carry a bag on my right shoulder my head pings off to the left.

My questions therefore for left/right neck Dystonia sufferers is -
Do you have eyesight problems? What are they?
Do you notice that there is a difference if you use the left/right hand in preference to the other?

Look forward to hearing your answers!
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Do you have eye problems as well as Neck Dystonia? 1 year 6 months ago #3966

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Hi bdavies,

I have Cervical Dystonia and wear glasses and I have never heard of any correlation between Dystonia and eyesight problems. But if you look at the age range that most people are first diagnosed with Cervical Dystonia its 30-50 so older people need glasses more than younger people. That may be the answer to your question. A lot of people have better vision in one eye than the other so they wear glasses or contacts having one lens stronger than the other. If holding cutlery with your left hand improves your head position its possible that its a 'gest antagonist' which many people with Dystonia have. It means that by touching your body or face in a certain manner or place it helps to alleviate the Dystonic symptoms. If I place my hand on my left temple and chin lightly it improves my Cervical Dystonia. The problem is that as soon as I take my hand away my neck goes back to the same abnormal position. Your neurologist or doctor could confirm the theory.
All the best,
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Do you have eye problems as well as Neck Dystonia? 1 year 6 months ago #3986

  • Supergran
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Hi I do have an eye problem related to dystonia. It has been diagnosed as there is one muscle in my right eye which spasms and affects my eye sight in that it gives me bouts of double vision which clears by moving my eyes slightly in any direction. I also have a prob lem in that my eye also rolls at times of severe spasms. I have severe end spectrum generalised dystonia.

I liked the tip about holding your fork/spoon etc in the left hand I am going to try this because I can relate to what you are saying with the head pinging in to its chosen position.

Christine x
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Do you have eye problems as well as Neck Dystonia? 1 year 5 months ago #4005

  • youster
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I was born with poor eyesight and wore glasses from the age of 3 and contact lenses for the last 40 years. Two years ago I was diagnosed with blepharospasm and torticollis.

I was blinking a lot and having to shut my eyes often. In addition, my neck kept turning to the left and downwards. It was virtually impossible to hold my head up with my eyes open for any length of time. All tests were clear (blood, MRI, nerve conduction studies etc) but I was offered Botox by my local hospital.

Thorough dental tests showed that the condyle in my lower jaw (especially the right side) was not in the correct position and for the past year I have been wearing a variety of dental appliances.

Whilst I am not 100% back to normal, I can tell you that my neck no longer twists to the left and down and I can hold my head up for as long as I want. Also the blinking has returned to normal and I do not have to close my eyes frequently.

Although it has been available in the USA for a number of years, this treatment is relatively new to the UK and is not available on the NHS.
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