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PSP Association
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Have A Question About Facial Tremors.

Okay. Before I was diagnosed with PSP, I was accustomed to mild or moderate tremors in my hands. Decided to be sneaky and tried to hide it.

Over time, my tremors have evolved into whole body tremors that can last for hours and leave me exhausted. I've been told these are A-typical; These do not happen everyday but seem to come in waves. If that start one day, seem to stick around for 3 or longer.

I'm also accustomed to tremors in both my upper and lower eyelids. That's a daily thing. Have a Botox consultation coming up.

But a new? or a new area? of tremors started one day this week w/o warning and never had happened before. I lost all control over my facial muscles; it's went on for 3 hour straight. My girls were sitting with me and thought I was joking at first...but it soon became clear to them, my facial contortions were involuntary and I had no control over it. It was constant and a bit extreme. I finally took a muscle relaxer and it quieted it a bit.

Have any other persons with PSP experienced this and/or the Caretakers of persons with PSP observe this?

Really caught me off-guard. Would appreciate feedback. Don't know what to make of it except I wouldn't go outside with this type of tremor; seriously.

Thanks.

Judy

MN

USA

6 Replies
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hi judy hows it going well you talking about facial tremors iot just jogged my memory I was doing a show and I was finishing off with a song called '' you are so beautiful to me '' sung by Michael Boulton normaly but anyway when I got to the high notes on it my face started fluttering and moving around uncontrolaby\\\\around my cheek area on my face\\\\ at the time I was singing to a lady as I used to move around a bit I was a bit frightened at the time but I could not stop what I was doing either I just said to myself its nerves and kept on going then I completely forgot about it until I saw your post and then I thought I had that but I have had it only one other time \\ now I don't sing anymore not even in the shower mate and I have'nt had a problem with that since so either I was a lousy singer or psp has got something else to answer for or maybe both\\

well how are you after all that matey good I hope peter jones queensland Australia psp sufferer the lady never said anything either mate so perhaps because I done comedy she thought it was part of the act I do not know but i was glad to finish believe me

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Dear Judy, that sounds really awful. This disease never gives up finding new ways to torment, dammit. I'm very sorry you have this to contend with. It's wrong wrong wrong!! My guy had a significant hand tremor for about a year early on, then it went away. I hope with all my heart your tremors pass, too. You are contending with so much, I wish I could help. Love Easterncedar

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Hi Judy,

My husband also has facial tremors or jerking. It's usually only on the one side of his face, and it's the whole side, eyes to his mouth. His usually don't last very long and don't come on too often. The thing that triggers them the most seems to be stress, or anxiety. I hope this passes quickly for you.

Lynn

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Hi Judy, my husband Tom started with slight tremor in hand in 2003 and was diagnosed with Parkinsons. in 2007 finally diagnosed with PSP and found that Sinemet was causing more problems and no relief, so put onto Amantadine. after about a year he went into whole body tremor so badly that I took him to A&E on a Sunday morning and in my panic didn't take his medication with me. It was evening before they finally admitted him and they would not give him Amantadine until the consultant had seen him. Consultant finally arrived Monday afternoon, by which time the tremors had gone. About 3 months later the tremors happened again just as vicious as before, late one evening. We stopped the amantadine and within 24 hours they had stopped. No amantadine since and must say that Tom is much better since he stopped taking the prescribed medications, and did it abruptly rather than gradually which is against all medical advice. The improvement has been over years rather than days, and we have found exercise and attitude to be the most important. Keeps doing as much as possible himself! I just clean up afterwards.

Thinking of you,

Ann

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Judy, My wife didn't have any tremors from beginning to end. Just shows how PSP is not a one-size-fits-all disease. Perhaps someone else can help with an answer. Hugs, Jimbo

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I realize that everyone's PSP is different, so I am not sure what we do will be helpful. My husband had facial tremors when first diagnosed in 2012. As mentioned before on this site, I started him on a rigorous supplement program similar to the one Sharon Comden has posted on the Yahoo cbgd site plus additional things I thought might help. He has not had any tremors since. His only issue right now is hip bursitis, unrelated to PSP, which limits his movement. And none of what I am giving him seems to help that.

Christine

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