Hi,
I was wondering if anyone else has Dystonia. I’m sure that there is. It’s really beginning to bug me. I’ve had it for 14 years.
It’s been getting quite bad recently. My head shakes. I know tha it gets worse when I am stressed.
I was just wondering what people have had and what they would recommend.
I was thinking trying for bottox. Has anyone had this?
Thanks,
Adrian
Hi Adrian
I’m not sure what the difference is between dystonia and spasm. Can you explain?
Is it that one is characterised by tremor and the other isn’t? Or is it more related to the length of time a dystonic type of spasm lasts?
If you can have Botox to help a head shaking type of dystonia then I can’t see any reason why not try it. It must be quite a distressing symptom.
Sue
Hi Sue,
Thanks for getting back to me. I used to get it really badly when I got stressed wmy head would shake quite badly.
Since I have stopped drinking and smoking it has got a lot better. I saw a neurologist and he said it has nothing to do with the MS. My muscle on my shoulder is in permanent spasm and as such causes my head to shake. I went to see the doctor about it and she said I could go on Baclofen. I don’t really like taking medication, if I don’t have to. My friend was on Amitriptyline for pain and he was away with the fairies for a year and half. I don’t really see the point of that.
I think I’ll see if I can get it bottoxed, if they will let me.
Thanks. 
Oh I see.
By the way, Baclofen doesn’t tend to cause bad side effects in small doses. In larger doses it can cause weakness but if the head shaking is really getting you down it might be worth trying.
Meanwhile, go for the Botox if it’s possible.
I’m all for Botox now that I’m waiting to have my bladder done!!
Sue
I had my worst relapse a number of years ago causing me various problems one of which was Dystonic Spasms. This caused my legs, feet, arms, hands and head to contract and contort in painful positions, these only lasted about a minute but I found them very distressing as it was difficult to breathe while they lasted. They were happening every couple of hours at first then every time I moved, my whole body was becoming stiff between times but I found I could move freely just after they occurred. At first I was given Baclofen to try to control them when this didn’t work after a couple of days I was given Diazipam which brought them under control. I still take Baclofen but came off Diazipam after a few months. I haven’t had this happen since but I live in dread of them starting again, for this reason I will take Baclofen for as long as my GP will prescribe it.
Give Baclofen a try if you don’t like it you can come off it we all react differently to medication. Of course if your Dystonia is caused be a neck problem not your MS then Botox to release the muscle spasm may well work instead of resorting to medication. I just don’t like the sound of injecting Botox but I do know lots of people use it to help with bladder problems caused by MS so why not your neck.
Best wishes
Jan x
Hi Jan, Sue,
Thanks for your replies. Haven’t been on here for a while. Started Tecfidera today, so trying to cope with that at the moment.
Look like a beet root at the moment. So will see how that goes before I tackle the dystonia. I must admit, I don’t like taking medication as they always have horrible side effects. That’s why I want to try botox. I’ve been pretty good on my supplement regime for the last three years. Only having one relapse a year, when I get a cold. Haven’t had one for nearly a year now.
That sounds really awful Jan. I hope it has sorted itself out.
Thanks, once again.
Adrian.