Speech Problems & Involuntary Vocalisations
My speech problems and involuntary vocalisations have also been taking place since June 2011. Since then, there has been only ONE time that I sounded like my usual self. I was so gladdened by the experience that I immediately called my sister. Just as well as less than ten minutes later, my voice was gone again.
When I try to talk, it feels as though I have a piece of stiff plastic forcibly moulded against the roof of my mouth: meaning that I can’t fully shape my mouth around it to speak. It feels very strange and it takes a lot of thinking and effort to work out how to shape the words I want to say around the restriction that this presents.
My speech becomes very slurred, my mouth becomes very dry and my tongue suddenly seems very large in my mouth. It feels like I can’t control my jaw movements and I have to fight my mouth muscles to form the words. I have to exaggerate pronunciation; but rather than use my lips, I have to use the side of my mouth to say the words right (when I can).
As I try to put my lips together to form the first letter, my lips vibrate; but at the same time, the top of mouth seems frozen in place. There is something very inflexible about the top half of my jaw and the way it causes my muscles to have to almost pull away from it; as though it is sticky and I really have to push the rest of my jaw round in order to form the words.
When this episode starts, I can usually feel my lips getting weaker and feel a lisp building up on the left side of my mouth. My left cheek (from under my eye, up to my ear and down to the corner of my mouth and jaw line) becomes more swollen compared to my right cheek and my lower lip on the left side becomes more pushed out. Speech becomes more difficult until I am no longer physically able to form words at all.
The involuntary vocalisations occur multiple times on a daily basis. The sounds vary between humming sounds, “aah” and “oooh” sounds. They build until they are occurring constantly and can last from a few minutes to two and a half hours continuously. They also increase in volume: to the point where my family have had to stop the film that they were in the middle of watching as they couldn’t hear it over the noise I was making – despite them having increased the volume twice before. My wife regularly has to put subtitles up on programmes she is watching so that she can continue viewing whilst I am in the room for her to monitor.
I have noticed that during this type of episode, my mouth becomes severely dry and I find it difficult to swallow. It feels like the bottom of my tongue (the bit that is connected to the inside of my mouth) has swollen up and is lying across the back of my throat – thereby blocking the hole where food goes down. When I take water at this time, it feels like I have to swallow around my tongue in order to get the water down my throat. We have found that using a straw is difficult as I cannot suck despite concerted effort.
During these episodes, I have taken to listening to music through headphones to give my mind something to focus on; as it feels like my body is making noises without my intervention.
I am sometimes able to use my right index finger to respond to yes or no questions posed to me during my episodes.