Not Seizures, cramps.: Hi Sorry not to have... - PSP Association

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Not Seizures, cramps.

Kevin_1 profile image
42 Replies

Hi

Sorry not to have been around for a while. Life is just too busy at the moment. It's been a poor spring and I am so far behind with the sowing.

Some time ago I posted about Liz having some sort of seizures. It has become a little clearer. It appears that what they are is severe cramps. Medazolan I.M. works for both epileptic type fits and muscular 'cramps'. It is beginning to appear that Liz is suffering the latter.

Has anyone else got experience on this please?

Waiving

Kevin

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Kevin_1 profile image
Kevin_1
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42 Replies
Helen119 profile image
Helen119

Hi Kevin. Ice to hear from you, yes Colin has serverr muscular cramps, makes his body go rigid and shake uncontrollably, then causes pain, mainly in his neck shoulders and ankles. He has been taking baclofen and sinimet, but I have just slowly taken away the sinimet as I suspected it was doing nothing and I was right hasn’t made a scrap of difference to him. Hospice doctor has just prescribed Tizanidine, awaiting the tablets so will let you know how we get on.

Again lovely to hear from you, hope you are doing ok.

Love and hugs Helen xxx

Kevin_1 profile image
Kevin_1 in reply toHelen119

Hi Helen

That's a perfect description of what Liz experiences. Sinemet should have helped if the 'cramps' were of Parkinson's origin. So that's one course of action off our list.

They are very painful for Liz.

Do let me know how it goes with the Tizanidine.

Lovely to hear from you too. :)

And, thanks.

Hugs

Kevin

xxx

Spiralsparkle profile image
Spiralsparkle

Hi Kevin & Liz

Mum had seizures not cramps so can't advise for Liz. Of course Mum may now be having cramps too but I'm in the dark still on that score sadly.

Massive hugs to you both. Think of you often

Sam x

Kevin_1 profile image
Kevin_1 in reply toSpiralsparkle

Hi Sam

I am so sorry to hear that.

Liz's communication is a bit inconsistent. That's why we have been uncertain.

Thanks for coming back. That info helps. :)

Hugs and smiles

Kevin

x

I thought something was up when you went silent. Sorry to hear about Liz. I had a friend who got muscle cramps in his legs. He didn’t have PSP. He was prescribed quinine. No idea if that would help Liz. It’s a thought.

Kevin_1 profile image
Kevin_1 in reply to

Thanks Jeff

That's worth a thought. The Neurologist has been asked to look into this.

Warmly

Kevin

Willow_rob profile image
Willow_rob

Hi Kevin, nice to hear from you again. Mary has similar symptoms and, prompted by your post I will ask her directly whether it is cramp. She can respond by moving her foot. If this has been her problem then I hope to get medication rather than dose her with Oromorph which has been the go to answer from the Doctor. Regards Rob

Kevin_1 profile image
Kevin_1 in reply toWillow_rob

Hi Bob

Good luck.

This communication thing is dire at this stage isn't it?!

Thanks

And, best to you.

Kevin

Willow_rob profile image
Willow_rob in reply toKevin_1

I think she has confirmed it's cramp so more gin and (quinine tonic for her). Actually will talk to the doctor tomorrow. Cheers mate. Rob

kenh1 profile image
kenh1

Hi Kevin my wife (CBD) is on midazolam injection 5mg via syringe driver over 24 hours for muscle contractions.

She has been receiving these for two years now with no problems.

Kevin_1 profile image
Kevin_1 in reply tokenh1

Thanks Kenh

We might be on the right track then.

Thanks for coming back.

Best

Kevin

kenh1 profile image
kenh1 in reply toKevin_1

This was prescribed in 2017 by the Palliative team at our local hospice. She was admitted to the hospice for two weeks for them to assess her medication.

Two District Nurses come each day to load the syringe driver and check she is ok.

Hope it works as well for you.

Ken.

honjen43 profile image
honjen43

Hi Kevin, can't offer any help - just heaps of hugs to you both!

Hugs

Jen XXX XXX

Kevin_1 profile image
Kevin_1 in reply tohonjen43

Oh, Jen

Hugs back at you in spades!

Hope the world is treating you right.

Kevin

XXXXXXXXX

honjen43 profile image
honjen43 in reply toKevin_1

Been covering me in plaster dust for past 10 days!! Soon be over and I will have a new kitchen. No more deposits until the next project! All ongoing!

Hugs

Jen xxx

Satt2015 profile image
Satt2015

Hi darling

I’m sorry to hear this and don’t have an answer for you, hoping others do

Much love to you both

Speak soon x

Kevin_1 profile image
Kevin_1 in reply toSatt2015

Hugs to you :)

XXX

Cuttercat profile image
Cuttercat

Charles has both cramps and one seizure. Baclofen was helpful but eventually too hard for him. We had to cut back.

Good to hear from you.

Cuttercat

Kevin_1 profile image
Kevin_1 in reply toCuttercat

Thanks Cuttercat

This is far more common that I realised. The Midazolam sedates her for 36 hours.

Waiving warmly

XX

Thanks for checking in... you & Liz have been in my thoughts.

Sorry l have nothing to share about seizures or cramps... as far as l know Mom did not have these issues. Hope the new medicine helps. Sendin Hugs to you both. Granni B

Kevin_1 profile image
Kevin_1 in reply to

Hi Granni B

Waiving at you and sending Hugs :)

Kevin

x

Dadshelper profile image
Dadshelper

Dad would get leg cramps occasionally and I'd just use a heating pad plus massage to help. I don't think his were nearly as severe as you describe though.

Ron

Kevin_1 profile image
Kevin_1 in reply toDadshelper

Thanks Ron

The problem with these is they are shoulders, arms and back and sometimes the legs too.

Heating pads sounds a great way to go otherwise.

Best to you

Kevin

NannaB profile image
NannaB

I can help you with your post but it is so good to hear from you.

XxxX

raincitygirl profile image
raincitygirl

Best of luck with this Kevin 🤞. Please keep us posted. Big hugs ❤️❤️❤️

Anne

Kevin_1 profile image
Kevin_1

Hi Ron

No these are pretty severe. Shoulders arms and back, sometimes the legs too. All at once. They looked like epileptic seizures. But Liz now says they are muscular. Reading the replies they are not as uncommon as I thought.

I hope things are going OK for you.

Best to you

Kevin

Hi Kevin!

I'm sorry for Liz and you.

I have not experience on muscular "cramps".

A big hug.

Luis

Yvonneandgeorge profile image
Yvonneandgeorge

Sorry lovely man can’t help either, hope you are ok, hopefully we will see you at out meet up. Big hugs. Yvonne xxxxx

Tippyleaf profile image
Tippyleaf

Dear KevinSorry to hear about these awful

cramps this must be so painful. I have no experience of this but really hope you can find something to alleviate or treat this .

Sending you and Liz lots of love

Tippy

Katiebow profile image
Katiebow

Sorry I can't help on this one Kevin, Ben was on baclafen for rigidity but can't say it was much help for him. He didn't complain too much of pain but I can't imagine it's wasn't painful to have your body so contorted, morphine patches helped with the pain I hope! So difficult when they can't communicate in order to tell you exactly how they are feeling. You and Liz are having a torrid time, hope they can find some sort of relief for her and ease the pain and discomfort. How we all hate PSP and the related diseases.

Love and a big hug

Kate xxx

AnneandChris profile image
AnneandChris

Dear Kevin

So sorry to hear your latest news of Liz. Just to let you know we have missed your posts and are thinking of you both. Take care and keep on keeping on.

Hugs

Anne

Aprilfool20 profile image
Aprilfool20

Nice to hear from you,but can offer no advise sadly. Lots of hugs to you both. Jayne xx

Northstar1 profile image
Northstar1

Hello Kevin I too think about you and Liz when you don't post for a while. Sorry can't help but good to hear from you Joy xx

georgeg25 profile image
georgeg25

Hi Kevin & Liz. Have missed your posts but completely understand. No advice on the situation but loads of love, hugs and prayers for you both. Stay in touch. ❤️🙏

JantheNana profile image
JantheNana

Kevin it is good to hear from you but am sorry to hear about these cramps because I know that has to be very painful. I do hope her team will be able to solve that now that they know what it is.

In the meantime I hope you are well! Janet

MWLE profile image
MWLE

Anyone tried B6? I was reading yesterday that C/L depletes B6. Low B6 has lead to seizures, possibly dementia/other mental issues, skin issues, nerve issues, others.

This could explain why in part that people with PSP, Parkinson, etc always ends up w/ dementia or quick cognitive decline.

B6 should not be taken w/ C/L since they bind to each other making C/L ineffective. If taken w/ C/L, some say take after 2 hrs of the C/L. Talk to your nero first before taking.

Kevin_1 profile image
Kevin_1 in reply toMWLE

Hi MWLE

Thanks for coming back.

Well, PSP is a dementia and the decline is caused by parts of the brain being 'smothered' by a protein plaque.

C/L? Carbo Levodopa?

That's very interesting.

Do you have a link please?

Thanks

Kevin

SewBears profile image
SewBears in reply toMWLE

I was never a big fan of vitamins but having read posts about Thiamine B-1 I asked the doctor about it. His reply was to take a Super B Complex. Super B includes B-6 along with a lot of other stuff. I started giving my guy Super B. I have no idea if it’s helping with spasms or not because we also increased Clonazepam from 1/4 mg to 1/2 mg. I suppose the combination of both is helping? It seems like he’s in less pain, but sometimes it’s hard to tell.

Christine47 profile image
Christine47

Kevin, like everyone here, you have been missed. As for cramps, we use magnesium either as a supplement or and oil as a massage oil. I am extremely reluctant to give my husband any pharmaceuticals due to side effects, so I look for supplement options. I started giving him D-ribose to increase his energy. I noticed that it is good for cramps also. Perhaps it is worth a try for Liz. Here is some information on it. bioenergyribose.com/the-sci...

Kevin_1 profile image
Kevin_1 in reply toChristine47

Thanks Christine

That is so helpful.

Warmly

Kevin

PSomani profile image
PSomani

Hi Kevin,

Using magnesium oil for my mother. Has shown some relief. However , when these oils are used , it is said that other cream etc should not be used in that area.

You may want to try using 50-100 grams of magnesium sulphate in say half a bucket of water and get her to dip her legs for 15-20 mins ... if it helps and there is a relief - good. Also then get magnesium levels checked.

Take care

Anshuman

Kevin_1 profile image
Kevin_1

Hi Anshuman

Thanks for that.

I'll read up a bit and see what I can do with this. My wife is in a nursing home so choices can be restricted.

Best to you

Kevin

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