Spasm in legs: Hi has anyone’s loved one... - PSP Association

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Spasm in legs

Helen119 profile image
20 Replies

Hi has anyone’s loved one suffered with legs shaking quite violently sometimes and then being calm again.

This happens to Colin, he smokes and it seems every time he has a cigarette this happens, sometimes without, but I was wondering could it be a lack of oxygen, could that cause it? Otherwise just another symptom.

Love and hugs xxx

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Helen119 profile image
Helen119
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20 Replies
Brenive profile image
Brenive

Helen 119 sorry not able to give you any help with this one , might be part smoking and part psp. Thinking back Ivor did have a few weeks of one leg shaking sometimes , in his sleep. This has stopped now..good luck with your search...Brenda xxx

Helen119 profile image
Helen119 in reply toBrenive

Thank you xxxx

gypsywoman1947 profile image
gypsywoman1947

My husband has this, it goes on day and night, even when asleep. All different mixtures of drugs were given , lately it has lessened a bit with the introduction of extra Lorazapan tabs. He takes a total of 3 mg spaced through the day. . Our consultant is familiar with it happening in some psp patients.

G W x

Helen119 profile image
Helen119 in reply togypsywoman1947

Thank you. Xx

raincitygirl profile image
raincitygirl

Hi Helen;

my CBD hubby gets spasms in arms & legs at night just before falling asleep (and sometimes in middle of sleep) They are very rapid shudders. Far as I can see, they don't happen during the day.

I don't ask the docs anything unless it's an emergency as they do care but don't know anything about CBD. The only one who understands CBD is our tertiary neurologist at the University, and it now takes 15-16 months to see him: we can't even get an annual appointment. (PS: I'm in Canada's 2nd largest city!) Guess there's a shortage while our Baby Boom generation is piling up on their doorstep! (Sigh...)

Good luck Helen - I'm rooting for you!

Anne G.

Helen119 profile image
Helen119 in reply toraincitygirl

Thank you xx

laroux profile image
laroux

Yes, I remember Bob being that way,they said at one point it was "restless leg syndrome " I believe it was just part of the neurological symptoms of PSP.

Helen119 profile image
Helen119

I too think that

Thank you xx

nayook profile image
nayook

My Robert has the same issue. Sometimes there is no shaking at all. At other times his legs (often just one leg) shake quite violently. Robert is a non smoker. There is no apparent cause. We just think of it as one of the many unwelcome

symptoms of PSP.

Helen119 profile image
Helen119 in reply tonayook

Thank you xx

Cwolpe profile image
Cwolpe in reply tonayook

Mom had those leg shakes. I tried everything and as we all know nothing worked. I have her on cbd oil now and the sativa low dose. It has stopped the shaking Me brought her focus back as well as her speach. It's still hard to understand her especially when her meds start to wear off. Something you might want to check into. I wouldn't say it worked if it didnt. She has been on it since around the 8th of June. And all I can do.is sing praise for it finally being available.

Helen119 profile image
Helen119 in reply toCwolpe

Thank you xx

Kevin_1 profile image
Kevin_1

Hi Helen

Liz too had that. We found exercise and physio lessened it. CBD oil might help. People with Parkinson's take it for this sort of thing.

LostinHeadSpace profile image
LostinHeadSpace

Helen, Someone on the regular Parkinson's board had results for restless leg twitching with some sort of supplement, it was a few weeks back, if I see it, I'll come back and post.

Lost

daddyt profile image
daddyt

I'm experiencing this as I reply to your post. I don't smoke, so I think it's fair to hang the blame on PSP.

Helen119 profile image
Helen119 in reply todaddyt

Yes I think I will blame PSP as well,

Makes Colin feel very unstable in his bed even though there is no way he can fall out. Awful isn’t it.

Love to you xxxx

Rowan8831 profile image
Rowan8831

Yes my husband has this in his legs. It is called myoclonus and is part of the disease. He has cbd. Although the shudders are continuous and rapid he hasn’t fallen out of bed yet.

I find cbd oil helps and Kevin has posted a really good supplier.

Thoughts with you

X

Helen119 profile image
Helen119 in reply toRowan8831

Thank you xx

Caro2132 profile image
Caro2132

Hi Helen, what an interesting thread, so much input and information. Just want to chime in and say that Mike sometimes ‘runs’ in his sleep. I noticed it’s more in the early morning. I haven’t done anything about it except ask him when he wakes up, but he never remembers his dreams.

Caroline

Helen119 profile image
Helen119 in reply toCaro2132

Love and hugs xx

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