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
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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.
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.
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.
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
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.
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
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.
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.
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.
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.
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.
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.
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...
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.
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