Spasm advice

Everyday living
1

Hi All,
I have had SPMS for some 15 years, with the main problem being mobility, with occasional (usually) night-time spasms (big toes bending upwards, nearly always right foot) whilst this used to be more annoying than anything else, it has got worse over the last few weeks and can last for over 3 hours at a time. It is now having a devastating impact on my routine, and I would love to hear any tips or advice from members on coping techniques.

Curiously, the spasms only seem to start when I am relaxing- after work or when in bed; am I missing something?- could there be a practical solution ?

I currently take up to 8 Baclofen daily, which no longer seem to be effective , and am currently on a trial for Sativex- but this does not seem to touch an aggressive episode like last night, even a Diazepam on top didnā€™t help

I have tried Gabapentin but had a bad reaction, and although usually effective, I donā€™t want to become reliant on Diazepam.

Any help massively appreciated.
Regards
Mark

2

Hi Mark,

Iā€™m not being facetious, but what would be so awful about being ā€œreliantā€ on diazepam?

Do you worry about being ā€œreliantā€ on anything else that works? You have a serious illness - you are going to be ā€œreliantā€ on some things to help you cope, because there are times when ā€œthinking happy thoughtsā€ just wonā€™t hack it.

I take diazepam every night, and at other times on an ad hoc basis - but not often. I happen to have just taken half a pill now, as Iā€™ve unaccountably woken up in a rather bad state this morning. :frowning:

My doctor has said in the past (before I was diagnosed) that there was no evidence it would be seriously detrimental to health if I were to take it for life. Now Iā€™m diagnosed with something I know wonā€™t get better, Iā€™m virtually certain Iā€™ll be taking it for life - unless something twice as good comes along, naturally.

A symptom thatā€™s having ā€œa devastating impactā€ needs to be effectively managed, and that may involve casting aside some preconceptions about whether it is or is not OK to take a certain drug for it. Which is worse - take the thing that works (but which youā€™ve been conditioned to regard as ā€œundesirableā€), or continue to live with the ā€œdevastating impactā€?

Tina

2 Likes
3

Thanks Tina,

Sometimes I sort of ā€˜forgetā€™ I have the illness (if only!) your reply makes a lot of sense; maybe a type of common sense that has been missing from the advice received from my consultant and GP.

Thanks for taking the time to reply, and I am sure your day will improve.

Best wishes

Mark

4

Hi Mark

Have you tried Clonazepam for the spasms? I was taking 80mg of Baclofen a day for spasms, and they do seem to come often when the muscles are theoretically relaxed. It was awful for a good long while, almost every night Iā€™d wake up because one of my legs would be spasming. I had developed a pattern of always taking an extra Baclofen automatically when I woke up to go to the loo in the night, in the hope that it would stop spasms from starting. And once the spasms began, that would be it for a long time, the only way to stop them was to completely move (ie. get out of bed and sit in the lounge for a while!)

My rehab neurologist suggested I try Clonazepam about 6 months ago and theyā€™ve been wonderful. I take 2mg per day, split into 500mcg at about 3pm, 1mg at around 8pm and another 500mcg when I go to bed. Generally, theyā€™ve been brilliant at stopping the spasms from starting. Generally I done wake up with my legs in spasm any more. Iā€™ve now reduced the Baclofen to 60mg per day. Not a massive reduction but after years of 80, any reduction is good.

My stupid legs still occasionally start spasming in the day, and itā€™s often in the afternoon or evening, never in the morning. Sometimes thatā€™s what reminds me to take drugs! And once the spasms start, theyā€™re still buggers to stop, even with the drugs. But itā€™s a lot better than it was.

(I just thought, I doubt that you can take diazepam together with clonazepam as they are both benzo-diazepines. But I think you can maybe take more clonazepam without there being such a tolerance problem.)

Sue

5

Hello Sue,

Thank you for your most helpful reply. I can mirror your experiences- the spasms seem to come from nowhere, of which I dread- but tend to hang around for ages.

The Clonazepam option has been mentioned, but I would avoid taking regular medication, if possible opting for an ā€˜occasionalā€™ Diazepam, but taking on board the feedback I donā€™t think I can afford this choice at present.

I will probably end up swapping my occasional Diazepam for a regular Clonazepam, and hopefully see the same improvement that you have.

Kind regards and best wishes

Mark

6

Funny how this should crop up today - Iā€™ve got evil, uncontrollable cramp. Iā€™ve taken everything Iā€™ve got, and I still canā€™t control it.

Two Baclofen - early (wouldnā€™t normally be due 'til teatime - took them at three), one quinine - early, the other half of the diazepam I took this morning, one magnesium - early. Still nothing has stopped it.

Have done nothing out of the ordinary today - not even eaten the dreaded chips, which Sue knows start me off.

Had a fairly healthy lunch of bread, cheese, and salad. In fact, much the same lunch I had yesterday, which didnā€™t do this.

At a loss what else to try.

Iā€™m yawning for England, so all the drugs Iā€™m taking are taking effect in other ways, but every time I lie down to succumb to the drowsiness, off we go again!

It started in just one leg and foot, and has quickly spread to both.

Iā€™ve put the heating on, even though I wasnā€™t consciously cold, as sometimes that triggers it.

Donā€™t know what to do. Oh yes, tried topical magnesium oil as well as the tablet. Still nothing.

Itā€™s impossible to read a book, listen to the radio, do anything.

Iā€™ll be alright for the few minutes it takes to type this, then Iā€™ll kid myself it has passed, and try to return to my nice warm bed, and itā€™ll be off again within minutes,

7

Hi Mark

I get spasms in my legs most nights. They are very painful.

Mine are always when I am in bed. As if the messages are still trickling through to them when I want to sleep.

I take Baclofen and Gabapentin but the thing that seems to work is Magnesium. Give Magnesium a try.

Hope this helps.

Shazzie xx

8

Cannabis has been shown to be useful in reducing spasmodic pain.

Unlike Sativex, it is available now.

1 Like
9

I was recently given the option of having a referral to the National Hospital for Neurology in Queens Square, London in order to be prescribed Sativex. I had already told my neurologist that I wasnā€™t that convinced about Sativex but that Iā€™d give it a go if I could get a referral (I thought I was quite clear in that I would take the drug if it could be obtained reasonably locally). There followed a series of referrals, my #1 neuro referred me to my rehab neuro, (I suspect neuro #1 thought neuro #2 could prescribe Sativex, he was wrong). Then my neurologist #1 wrote to my GP and asked her to refer me to the National Hospital. This would entail a 6 hour ish round trip if I were prepared to get the train to London, then tube across London etc which as a wheelchair user and someone who suffers badly with fatigue, I am not prepared to do. It would be likely to involve a much longer car journey and parking at Queens Square is rather difficult. If I believed in the drug I might consider it before deciding ultimately not to do it. As Iā€™m unconvinced, thereā€™s no way. I spoke to my GP, who was in any case unable to refer me to a neurologist outside of the area so she had emailed him to explain this and subsequently I had to contact my neuro #1 to tell him I didnā€™t want the referral.

Thatā€™s how hard it can be to get a Sativex prescription when you live in a village in Sussex. And if youā€™re a person who is unconvinced about the benefits of Sativex, then itā€™s insurmountable.

And I am not in a position to buy/grow/take illegal cannabis, nor am I totally convinced by the argument for it (donā€™t get me wrong Paulo, I understand that for some people it appears to be medicinally effective, and I have heard and read many of the opinions about it), so for me at least, itā€™s not something that I will be in a position to test out.

I believe Iā€™ve found a drug regimen that works for me, at least for now. Hopefully it will continue to work. I hope everyone else manages to find their own solution.

Sue