Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Blepharospasm

Blepharospasm is a type of Dystonia that affects the eyes. These spasms are often rather painful and can involve the eyelids as well as the muscles behind and around the eyes. As with all types of Dystonia people experience different types of spasms, some people have increased sensitivity to light and rapid blinking, whilst others find their eyes spasm shut, and in some cases the muscles behind the eyes pull the eyes up into the head making the person functionally blind. I experience several of these spasms and find that the sensitivity to light often triggers the other spasms.

Generally speaking symptoms usually appear in people around the ages of 50 to 70. However it does affect younger people, Blepharospasm can appear on its own or in conjunction with or part of other Dystonias such as Meige Syndrome or Generalized Dystonia. Blepharospasm is thought to affect around 7,000 adults in the UK.

There is currently no known cure for Dystonia. Treatment for Blepharospasm normally involves regular Botox injections. I find that six weekly injections around my eyes helps with symptoms such as spasming shut and rapid blinking, but the muscles behind the eyes cannot be injected. By wearing dark sunglasses in the sunlight or in brightly lit area, I can reduce the chances of going blind but it still happens. The longest this has ever happened for is 15 hours. Some people find that pressure points around the temples, and nose area can help relieve the spasms. Obviously these pressure points differ from person to person.

In the picture below you can see my eyes pulled back in a spasm leaving me functionally blind.

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The Dystonia Society’s website has some great tips on how to cope with the condition so head on over to it to find out more http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/eye-dystonia-

Comments on: "Blepharospasm" (3)

  1. Franz Krämer said:

    Rebecca, an informative description of the dystonia form Blepharospasmus.
    I admire your energy.

  2. You inspired me to blog today about my experiences with blepharospasm… thanks for giving me the courage to do it!

  3. p mccullough said:

    I have experienced bhlepharospasm and cervical dystonia for the past year. There are hospitals who treat this in Northern Ireland but I wasn’t happy with the treatment having been given little information about how chronic this condition is etc., It was a case of just go in have the injections and go home. I have had to go to London to get the right treatment privately. I was treated at home but the injections just weren’t working. Very expensive travelling every couple of months to London but will continue as I may now get back to normality and be on the pathway to having some relief and maybe even get back to driving and normality.No dystonia organisation in NI. Is there anyone out there in Northern Ireland who has this disabling condition?

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