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
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
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
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
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.
Thanks Jeff
That's worth a thought. The Neurologist has been asked to look into this.
Warmly
Kevin
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
Hi Bob
Good luck.
This communication thing is dire at this stage isn't it?!
Thanks
And, best to you.
Kevin
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
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.
Thanks Kenh
We might be on the right track then.
Thanks for coming back.
Best
Kevin
Hi Kevin, can't offer any help - just heaps of hugs to you both!
Hugs
Jen XXX XXX
Oh, Jen
Hugs back at you in spades!
Hope the world is treating you right.
Kevin
XXXXXXXXX
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
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
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
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
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
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
Sorry lovely man can’t help either, hope you are ok, hopefully we will see you at out meet up. Big hugs. Yvonne xxxxx
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
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
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
Nice to hear from you,but can offer no advise sadly. Lots of hugs to you both. Jayne xx
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
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. ❤️🙏
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
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.
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
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.
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...
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
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
Advice on Dystonia (Seizures)
CBD and Seizure?
