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INVOLUNTARY TONGUE MOVEMENTS 3 years 4 months ago #3262

  • allison
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Hi Everyone

My name is Allison and I am waiting for a referral from my Dr. He is away on his annual Hols at the moment. Has anyone else ever heard or seen anyone with this problem. My tongue likes to press on my lower back centre teeth all the time 24/7. I collect a lot of saliva and have to swallow very frequently. This can be a second or two or I may be able to go 5-10 mins. In order to speak I have to keep swallowing all the time. Eating is a nightmare as my movements go so fast I often choke. I cannot chew meat or hard things. Sleeping is difficult as I have no OFF button so to speak. Most nights I am lucky if I can get 2-3 hours before I start the whole procedure all over again. My teeth hurt and so do my gums. I have lost 4 stone in weight as eating is so difficult.

Has anyone else come across anything like this?

I would love to have a natter on the forum if anyone has any suggestions.

My GP has done blood tests which are clear. He has put me on Clonazepam tablets but they don't do anything and I have been on them for 2 months now.

I have been like this for nearly 3yrs - and I do get very depressed. I am married with a son and they are my rocks.

This problem started when I was under a huge amount of stress - this stress has been removed but now I am left like this.

Any input at this stage would be gladly appreciated.

Everyday is such a struggle.

Just to get up and do it all over again.

Take Care everyone
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INVOLUNTARY TONGUE MOVEMENTS 3 years 1 month ago #3397

  • DnAs
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Hi Alison,
You seem to be suffering a GREAT deal and I hope you can be referred as soon as possible. Can your doctor raise your loss of weight as a reason to gain some priority ?
We would strongly urge you to Obtain a video if possible of your tongue troubles. To show a specialist and your GP.
In the meantime is there someone with speech therapy expertise who can help you with swallowing and eating, or has your GP thought to do this.
Best Wishes
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INVOLUNTARY TONGUE MOVEMENTS 1 year 4 months ago #4033

  • Supergran
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I want to thank you for sharing your story you are an inspiration to me right now. I have generalised dystonia...severe end spectrum. I have randomly had strange things happening with my tongue in that I have a mouthful of food and suddenly my tongue stops working and its like my mouth does not know what to do. The first time this happened was pretty scary as I have swallow problems and was worried about were this food was going to go as I had no control over what was going on in my mouth but I did learn to handle it. I dont weigh myself but I have dropped 4 dress sizes with the swallow problems and my GP referred me to a dietician and speech specialist. The outcome of that was that I was put on ensure drinks and a pureed C diet...basically soups, yoghurt, custard type consistency of food. I learned to get on with that and a certain piece of equipment that makes smoothies has worked wonders for me and allowed me to taste proper food again. I have more recently discovered that the grinder that comes with this equipment has become a good friend to me in that I grind porridge oats and muesli together until it is powder form almost and it makes the lost delicious breakfast.

The jaw thing has given me problems for a while in that when I am at the dentist and the work is complete and comes the'lets test your bite' thing. I found that I have to physically realign my jaw joint to be able to close my mouth. This is the same if I yawn, laugh too much, shout or anything that involves the mouth being open for a length of time. I have regular ear ache that has no apparent medical cause but will clear up with pain killers and I have been at the GP a number of times were I have done the...I am telling you! thing because I am so miserable with this and then it has cleared up in its own time with painkillers?

Now for the last 4/5 days to bring the story up to date! I have the most awful pain in my teeth, jawbone and face. I was sure that I had toothache but then the pain moved to another tooth and then played musical toothache and my brain is telling me that it is not possible to have toothache in every tooth? surely? as the days have gone on I recognise that the pain is in my jawbone and moves up to my facial bones around my cheeks but I can alleviate the pain by massaging my face so now am thinking this could be related to dystonia. I also am having a problem in my jaw in that my mouth is locking in the almost shut position and I cant get any food into my mouth, I can not chew, my tongue is not working and the worse part I can only sleep around 2/3 hours at a time and one problem with that is hunger! my stomach is hurting with hunger pains.

I am waiting for another appointment for the dietician as I need a full nights sleep and I can feel quite unwell with hunger. I am sucking boiled sweets to help with the light headed feeling and the shakes which are clearly low sugar levels. I crave breakfast time since I discovered the grinded down porridge and after another night of hunger pains am now thinking that I am going to have to have porridge before I go to bed to try and solve this but life on porridge is not something I feel I can cope with but not sure what else I can do. I have made it with different flavoured milk but even to say am having a pity party for one just now! which brings me back to my first statement which is are an inspiration and I would love to blether!

Sorry if this is a bit of a ramble but thank you for taking the time to read it.

God Bless

Christine xxx
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