PSP Association
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PROTRUSION OF THE TONGUE

Hi, my mum has another problem. Her speech is very difficulty from two or three months, but now, from 15 days, she has another disorder. The involuntary protrusion of her tongue ( she can't control the movement of her tongue and put it out of her mouth).

This new problem, and the excess of saliva, and the continuos blepharospasm and having closed eyes during all the day, all together make her life worse, if it's possible.

Someone tell me that is not a PSP symptom but it can be caused by psychiatric medicine she takes to sleep.

Did anyone experienced with this other trouble?

Any suggestion?

Thank to all of you.

I try to be positive but not every day is possible.

18 Replies
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Hi Jo

Mum has been PSP sufferer for about 4 years. Her speech slowly deteriorated over this time to virtually non existent. I noticed 12 months ago that she was losing the ability to control her tongue. I'm sorry but this does seem to be another awful PSP symptom.

Being positive is very difficult but it's all we have. Look after yourself as well as your Mum.

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My dad just started with rolling his tongue. I think the psp makes it hard to control. Dad was diagnosed 4 years ago. Struggles to talk at all. Wish I could give you better advice but its new to me also.

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My mom used to have her mouth open all the time and her mouth was often flopped out. We used to try and get her to close her mouth; she was embarrassed about it and all the saliva from the open mouth but she said she was unable to move her muscles. It does seem to be a PSP symptom and I wouldn't say it was psychiatric. Before her diagnosis of PSP we endured 6 years with GP's telling mom her symptoms were in her mind .........

Jane xx

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Mum went through patches of sticking her tongue out when I was trying to feed her. At first I worried that she didnt want the food but then realised she couldn't control it and I had to try and get the spoon/sandwich etc above her tongue for things to work. It didn't happen all the time, seemed to be the more mum tried the harder it was. When she was relaxed everything worked better.

Dx

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HI Jo, Botox does help with eye closure, injections above the eyebrows every three months. I don't know if there is anything like botox to help with the tongue. Can the neurologist help? Only people specifically dealing with or have knowledge of PSP/CBD seen to be able to help. Dark glasses might be worth a try, because suffers do not like light. It is a soul destroying disease and so difficult to deal with the unknown. Regards

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Jo, My wife has issues with speech and tongue movements. It's all part of PSP. PSP seems to affect the muscles (even the smallest) in the mouth/eye/head area. Hang in there and cope as best you can.

Jimbo

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Hi Jo

I can tell you that my dad sometimes appears not to move his tongue. Makes speaking that much more difficult, as well as swallowing, eating etc....

So, I would have to say it is a symptom of PSP.

Sorry...

MJ

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Yes, it's the PSP. My MIL struggles with anything related to the mouth. I have related how I use the EFT on her to help her relax and cope with emotional issues. I have noticed that when I tap very gently on the spot in the little dip just below her nose and above her top lip she closes her mouth. It seems to release the spasm in someway that keeps her mouth open.

Good luck and hang on.

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Hi guys,

yes i was wondering why my dad has started sticking out his tongue and he sucks on it. I asked him what he was doing and said he couldnt help it. Now i understand,just another one of this cruel diseases symptoms.

RC xx

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Two years back, I got the same problem- tongue started rolling out. I mean protruding. I got panic, as I never have had heard of a thing like that. I couldn't take it in. In a while it came in, then again started pushing out. As it continually started pushing out it gave me pain. Before that happened , it seemed my face suddenly started to move the muscles around on its own. It was like my face getting distortion. We seeked medical help after 2, 3 hours. And, I was given lot of injections, hospitalized. They told me, I suffer from Schizophrenia.

It's what I'm treated, for the past 2 years. I'm taking medicines regularly.

I'm always searching on the net to get the knowledge what I'm suffering from. But, my other usual symptoms tells me it's a panic attack. But, may be it went to it's extreme.

It took many hours to stop even after hospitalization.

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Hi Extha

I used to be a community mental health practitioner.

Schizophrenia is a serious diagnosis. In the UK it is prohibited to make that diagnosis before six months of observations and then it must be a psychiatrist who makes it. There are so many different causes for brief psychotic presentations. Some of them transient hormone imbalances.

Even if it was made by a psychiatrist I would certainly recommend you get a second opinion.

I hope this is helpful to you.

Best to you

Kevin

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Thank you very much. I very much appreciate your concern.

My husband's name is also Kevin.

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Thank you for not taking offence.

I was unsure as to whether or not to post.

Do you have PSP as well?

Best

Kevin

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Psp- I really thought this was tongue protrusion problem. When I searched for tongue coming out causes, this site got opened. So, I came in to read. Signed up. Is it wrong?

But, I understand that I have a few other complications. Last year when I tried to stop the medicine, I got severe chest pain, choking, breathing problems along with giddiness and standing probs. I fell down whenever I stand.

I stopped medicines for about 2,3 months. Doc shouted at me. But, he doesn't seem gentle. He tells me I have gone mad at times. It hurts me.

He has diagnosed me as paranoid schizophrenia. But, I tell him that I'm never suspicious. It's true. I never suspect my husband. Doc never agrees with me and uses harsh words. But, the other docs seems to be his students, and charges a lot.

Yes, I'm having hallucinations. But, it seems a bit different. I don't hear voices, whereas I my own lips are producing voices which are very hostile to me.

It started after I converted to Pentecost from Catholic. At first it was very Godly. Singing etc... After sometime it changed it's course.{ I still have involuntary movements in me(it was severe for the 1st year) it gets worse when I pray. My family shouts at me when they see} It told me weird things which were very confusing, I have done weird things too, which I'm embarrassed to tell. For the past 2 years I believed it was the Holy Spirit. Telling bad about me and asking me to kill myself very smoothly.

I was confused for I strongly believed , we should not commit suicide. It was like ignoring my spirit. It made me guilty.

Now I'm slowly accepting, that it is not real. (Only last week I came to realize this)

My post is only to warn other people with hallucinations.

I'm not good with words. Pls tell me if this is not the correct site to come.

And, I thank you for taking your time to reply me.

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Hi Extha

You have had a very difficult time, but you clearly are not giving in. Bravo!

Don't worry about writing well. What you write is very clear and you express yourself so very well.

I'm so glad you found our community, but no, we are focussed on two closely related neurological degenerative diseases called PSP and CBD... Think of it as atypical Alzheimer's if you like. But no matter. There's always a little more room for someone struggling the same as we are!

It's just that few of us here have dealt with issues like yours and so we aren't able to help much.

Forgive me writing this post. I don't know how much you know about schizophrenia and understanding what it is is crucial if you are going to navigate it as an illness and avoid confusion and break downs.

If you would accept these words from an old man who has had many years trying to help and support folk with schizophrenia and has spent years listening to their experiences and trying to help them, staying close when they were well and closer when they had a break down.

Schizophrenia sucks!!! But there is a smart way to work through it and to manage it.

It's just a nasty biochemical dysfunction of the brain. No different from many illnesses when organs go wrong.

First there are a number of closely related forms of schizophrenia. The paranoid form does indeed require there to be paranoia during a break down. But, no matter, I am so pleased you are spared that. Let's just talk 'simple' schizophrenia. That is another form of Schizophrenia without the paranoia. The medication is the same the issues in the illness and the risks can be too. However it is less severe in many ways.

The problem you are faced with is that with this family of illness folk can experience things around them very deeply. I'm sure you have been places and wondered, "Why can't they get it? It's so obvious." The fact of the matter is that we effectively have a volume control for awareness built into our brains. If we are in a dangerous situation our brains turn the 'sensitivity' volume up. However if we keep the volume too high we exhaust ourselves and more importantly we screw up our brain. So our brains turn it down again in routine situations.

With schizophrenia the volume, or more precisely the chemicals bombarding our neuroreceptors stay too high. So, such folk have too much incoming information which they have to make sense of. So it is that the brain then has to make sense of this by developing explanations. We all have this trait of having to find explanations for what our brains discern. But most of us are doing it with much lower levels of signal.

Schizophrenia is not 'madness'. (Whatever that is!) You know you can reason and like all folk you are compelled to make sense of the world around you.

But what can you do when so much extra information bombards your brain? You have to make sense of it and so you have to find explanations which are beyond those others have to find to make their world make sense.

So if you review your post in that light the Pentecostal spirit was perhaps the only explanation which made sense for the horrible messages your brain was sending you about taking your own life. The truth of the matter is that when the neuroreceptors get overloaded there is a kind of short circuiting that occurs in the brain and stray thoughts get re-routed, as it were, and those sorts of horrible thoughts occur. They are not real, they are mis-communications within the brain. Microsoft on a bad day.

Asking someone to accept this is asking them to accept my words over the information their own brain is giving them. Tall order for any of us to accept! Only you can decide on this one. I could go on a lot about brain imaging etc and Blah, Blah... But it's your call.

However you do know what is normal and if you are having too many of these unusual thoughts its time to get help. If you can find a 'buddy', just like a diving buddy, who you trust and can talk to, then its a great idea to have a system that when you get too many of these thoughts then, by previous agreement, they make you go and get help. Agree between you at what point they should step in and talk to them every couple of days. It's a superb safety net to prevent you slipping into a breakdown with all of those horrible thoughts and the trauma of hospital.

So looking at medication. Yes, it's not very nice stuff! Risperidone is probably the best one for most folk with regard to less weight gain and less lethargy and less of the bloody numbness of daily being. (Can I swear here?). I've been out of the loop, so there might be new ones out there. The atypical antipsychotics, like risperidone, simply block some of the neuroreceptor sites so that the 'volume' is turned down to a level where you can function without being overloaded.

Now here is the big deal with meds. After a year most folk think they are OK and risk stopping them. I have supported folk through this process. I also tell them that a lot of research has found that typically after a year on meds. they can expect about a year without a breakdown when they stop... but the breakdown always comes. We would write it out on paper and both of us would sign to say we understand and agree at what stage I should step in. Then when they recovered I would hand it to them, before we made a plans for how to continue. (I would also try to intervene early on the breakdown so it wasn't too severe.)

So stopping meds is very high risk.

Moving on to breakdowns: Breakdowns cause damage to the brain. They must be avoided! Most often they get deeper and more severe each time and so the risks get higher.

So back to meds. try to work with this 'shouting' doctor and tell him about how the meds. make you feel, side effects and everything. Then ask him what he can do to lessen them so that you can keep taking them. Ask him to try and get you onto the minimum effective dose. This will take him a little time and monitoring, but it is do-able and a good doctor will do that.

Please forgive this post. I have had to make guesses and assume you know little. I expect you know rather a lot.

Lastly, the dizziness and falling. Neither the illness nor atypical antipsychotic medication should cause that. Please get that investigated.

Please feel free to write to me through the private chat at the top of the page.

My heart goes out to you in this struggle. It is do-able. In fact some of my patients were high flyers, but they did that by managing the illness.

I do so hope there is a little in here which is of use to you.

Wishing you the best.

Kevin

P.S. Is there a group near you? They can be very supportive.

Do come back and give me your thoughts. :)

PPS - BTW - I am a fan of Risperidone... Some folk get on better with Quetiapine or Olanzapine... Everyone is a little different. :)

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Bravo, Kevin XXXXX

A.G.

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Thank you so very much. You have gone through so much time trying to help me understand my illness. I'm struggling, but definitely I will try to stick to the norms. As I have started to talk, it is now clear that all those voices are unreal. I will definitely work it out with the doctor, even though I'm not happy about seeing him. Don't worry. I will not stop seeing him.

I don't know anybody who has same illness as mine. I see patients outside the doctors -Home for schizophrenia. I Will come back later.

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Hi Extha

Good luck.

Do come back and let us know how your doing.

Best to you.

Kevin

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