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 .
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.
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-
I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.
The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.
Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!
I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.