Help with spasms/shakiness in legs

[Lynne11013]

My husband was diagnosed in July. He is now on 300mg of gabapentin 3 x day. He has spasms/shaking in his legs which is affecting his balance and the little walking he can do. We have discussed this with the MND nurse and what the benefits are of gabapentin but so far nothing is resolved. Can someone with experience suggest an alternative that will help. I know everyone is different but it is now affecting his sleep and general wellbeing. Thanks in advance

[Onein300]

This is such a difficult subject. I would strongly advise that you liase with your consultant or GP rather than us.

On a personal opinion I would just add that these drugs prescribed are almost

’oh he/she has mnd I will give a prescription for anything’

Gabapentin is a really nasty drug as are most muscle relaxant drugs. They are rather indiscriminate and hit the whole body etc.

i avoid like the plague.

But that is just my opinion.

Please discuss with your husbands doctor for his specific indications etc.

Lee

[Christopher]

Lynne11013

I have been on co-codamol 30/500 x2 (four times a day for about 18 months), so that was meant to deal with pain, along side that for muscle spasm I have been taking 5mg of diazepam at night.

These were working until about four months ago when I kept being woken up in the night by an arm shaking or buttock vibrating. I was then put on amitriptyline 10mg in the evening as well. This immediately stopped the night time tremors.

I have to say though I don't sleep much now. So for example last night I did not sleep at all and decided to have breakfast at four this morning for something to do.

I hope that you get a resolution that works for you and your husband.

Big hugs and loves to you both.

[Lynne11013]

I think the word suggest was not what I should have used. Your personal experience or opinions are useful. We have had several conversations with our gp (who has been brilliant) but like you say it’s not something they deal with on a regular basis, similarly we have had the same conversations with our MND nurse but she is yet to come back with an alternative. When Craig wa first prescribed gabapentin they said it would stop the spasm & spasticity but just kept increasing it when we advised it wasn’t doing anything.

[Christopher]

Quote from NICE (National Institute for Health and Care Excellence)

"In adults:


Gabapentin is used for muscular symptoms in motor neurone disease, but is not licensed for this indication."

[Onein300]

I think the word suggest was not what I should have used. Your personal experience or opinions are useful. We have had several conversations with our gp (who has been brilliant) but like you say it’s not something they deal with on a regular basis, similarly we have had the same conversations with our MND nurse but she is yet to come back with an alternative. When Craig wa first prescribed gabapentin they said it would stop the spasm & spasticity but just kept increasing it when we advised it wasn’t doing anything.

Hey Lynne,

No problems at all. It's always worth bashing around these things.

All I can comment on is my 9 years since diagnosis.

I have come to the conclusion that all of these nasty muscular drugs bring more issues than solve! Some severe. And sleep problems could very well be attributed to these drugs,

Often our symptoms suddenly change anyway. So what might appear to clash with the start of a drug is sheer coincidence. In the meantime you have loaded your body with quite nasty stuff.

For stiffness/spasms keep hydrated, perhaps get basic quinine prescribed (or drink tonic water), and perhaps try massage.

Gabapentin is a controlled drug now it has such nasty effects.

Lee

[Ellie]

Lynne11013 Does Craig have access to a physiotherapist for an assessment, Lynne?

I'd start by confirming just how high his muscle tone is or is it more a case of localised spasms when muscles are asked to do 'too much', then he can decide, in conjunction with a relevant medic, the most appropriate couse of action.

Perhaps magnesium supplements, massage, CBD oil or targeted acupuncture will help, or perhaps an antispasmodic medication, such as Baclofen, is what's needed.

Yes, every med has side effects, but that doesn't mean we shouldn't take paracetamol to stop that woodpecker banging a headache in our skull - it's a quality of life choice, to be made by the person experiencing the often debilitating symptoms. xx

[shelly21]

Definitely baclofen. My neuro prescribed it. Works wonders. X

[Christopher]

Echo Ellie

Lynne11013

[JamesW]

I don’t want to sound flippant but a gin and tonic really does help with cramps and spasms 👍

[Lynne11013]

Thanks all. Will definitely discuss baclofen with the dr/MND nurse. Craig is having physio in a hydro pool but will ask about muscle tone. And a gin & tonic is definitely not flippant 😜 in fact he is going to give one ago tonight!!

[Onein300]

Guys, Err yes add gin if you want, but the amount of tonic I drink would need litres of gin! I can't take that!

[Christopher]

I don't drink apart from a couple of celebration days in the year. I have to say our local Tinwood sparkling wine certainly takes the aches away.

[Cinderella]

When I was experiencing the very worst of cramps and spasms I was of course offered nothing as I would have to wait another 4 years or so for diagnosis. Eventually at some point of going backwards and forwards to the doctors, I was offered quinine tablets and took the first one that night hoping at last for a night's sleep, reading the leaflet lying in bed afterwards it said not to be used if you have glaucoma - what! I was being treated for pre-glaucoma (laser treatment) so went back to see the doctor to ask can they see my ophthalmic notes and wondering why I had been prescribed it? So that was the end of that, no more tablets. Just thought I should mention in case anyone is similar.

From experience since, I would consider CBD as it has really helped me, especially with getting a night's sleep.

I hesitate to write this, but 3 months ago I was again experiencing persistent spasms and twitches (but not the awful cramps) and after checking with the neuro (as they offered no treatment) began self supplementing with ALCAR (as per the reported trial), I think it has made a difference, but it is not instant - the spasms are much less and overall my wellbeing has improved - yes, I know I am not supposed to use that word about myself - but I have improved and it is not just me saying this. It may be coincidental and the placebo effect - who knows? It may be going to disability swim sessions twice a week and the fortnightly acupuncture sessions also?

I have just been weighed and have put on 6kg in 2 months, the dietitian said to keep on doing what I was doing...

[Christopher]

Without downplaying the seriousness of the issue, I think everyone is saying, you have to find what works best for you.

We are all here with hugs at the ready.