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

Posts tagged ‘Generalized Dystonia’

Oromandibular Dystonia

Oromandibular Dystonia affects the mouth area, this includes the tongue, jaw and lips. It is part of my Generalised Dystonia and I find it affects both my jaw and my tongue. I have often found myself in situations where I have found myself sounding like I am drunk because I am unable to pronounce my words due to the spasm going on in my tongue.

Oromandibular Dystonia often affects the sufferers ability to chew and speak. When my spasms are bad I find that I can only consume liquified foods and yoghurts, as the spasms that are taking place leave me unable to chew. Some people may just have Oromandibular Dystonia or they may have it with Blepharospasm (Eye Dystonia), or as part of Generalised Dystonia like myself. If it is a focal Dystonia (just on its own) then it normal appears between the ages of 40 and 70.

Oromandibular Dystonia was one of my first symptoms. I was at university, and to be honest I didn’t really think too much of it at first, but then when the spasms became extreme and caused my jaw to dislocate I began to realise just how much pain they could inflict. As there is no cure for Dystonia a combination of Botox injections and medications are used to manage it. I find Botox injections to be particularly effective at managing it. Botox seems to only work for around 5/6 weeks for me, luckily I have a very lovely neurologist who is willing to administer the injections every 6 weeks. This works fantastically well for me, as without this my jaw spasms are extreme. Some people find pressure points or chewing gum helpful in managing their symptoms.

I would highly recommend for anyone wanting to know more on the condition checking either out The Dystonia Society website http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/mouth-or-tongue-dystonia or The Dystonia Research Foundation http://dystonia-foundation.org/what-is-dystonia/forms-of-dystonia/focal-dystonias/more-on-oromandibular-dystonia .

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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-

Acrobatics

The ability my Dystonia has to twist my body into any position it desires never ceases to amaze me. Having hypermobility syndrome aids it somewhat. The two conditions are both painful and amusing. Over the last year my body has got itself into positions that are simply not natural. I always knew my hands moved in ways that were not normal, but never realised that the rest of me could.

Some of the positions Dystonia has put me in has reduced me to tears of both pain and laughter. Take for example last October, I ended up on the floor doing the splits, something that I had never done before. A month or so ago, the spasm in my leg caused my leg to turn back to front, a movement that shocked those around me and triggered a non epileptic seizure.  At other times it has caused slight embarrassment, but this is something I accepted as part of the Dystonia parcel a long time ago.

This evening I was crawling to the next room as I did not want to use the wheelchair, my right leg quickly spasmed sideways, I ignored it as it was not preventing me from moving. However whilst I was crawling through the doorway my hip went into a spasm causing my spasming leg to shoot up and my foot to become caught under the door handle. Both my mother and step dad came to help me. My mum supported me incase I had a seizure and my step dad wrestled with my spasming foot to free it. I was on my hands laughing. The situation was ridiculous. At 20 years old I am crawling around trying to have some sort independence yet even this simple act is not alway possible. It is so ridiculous that I did not feel cross or upset, all I could do was laugh it all.

Throughout the last year my spasms have shown me just what my body can do, and it amazes me. I often joke that I would make a fantastic acrobat or ballerina. Though the spasms cause pain and pull my muscles, I refuse to let it get me down. Instead I see it as a strange talent that provides entertainment for all.

After all why cry when you can laugh?!

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