Has anyone suffered. with myclonic jerks either dx or not ? thanking. you in advance for. any help and info
Hi Andy,
I have myoclonic jerks and have done for some time. They started off with what I thought was just restless legs (which I’ve had for years) but they then developed into bodily jerks. My neuro put me on clonazepam which has helped, although it’s not stopped them altogether.
I also have jerks in my hands where I launch whatever I happen to be holding up in the air or across the room. These seem to happen for a few days then disappear until next time…much to my disgust I break a lot of things
I was dx a few years ago and it wasn’t long after that I finally mentioned the jerks to my neuro. There are meds available so please don’t suffer in silence - have a word with your neuro - meds can make all the difference.
Hope that helps
Debbie xx
I developed these in 2010 and still have them if I reduce either my baclofen or pregabalin doses. I get mini ones now which are easily covered up by crossing/uncrossing legs/arms (they’re normally in my wrists or ankles these days rather than whole limbs/torso/whole body). Clonazepam didn’t work for me btw. We’re all different! Karen (dx in 1998) x
I get them but for a different reason. I don’t take any medication for them but mine seem to command go. I get a run of them then nothing for ages. My answer was no help to you whatsoever, sorry, just wanted you to know you’re not the only one. Xxx
Yes, I get these too, I have had quite violent ones in the past with both legs flying into the air. Now they’re less severe and not so often - it can be leg and arm or legs or when I’m lying in bed my head goes. Really not nice and quite embarrassing. How do yours present?
Deb
Hi Andy,
Yes I get myoclonic jerks, to begin with I had what’s called a NO NO nod, my head would go from side to side all on it’s own. then my legs started really badly and then my arms joined in and then my trunk. I am now taking Clonazepam at night and Keppra plus Gabapentin. The jerks have eased off a lot although from time to time my legs and arms will suddenly decide to flare out. I break things constantly. It is more under control but never know when it will happen. Have even hit a friend of mine on her arm and spent the next hour saying sorry it wasn’t me!!! Luckily she understood. Hope this helps.
Janet
x
Yes, they would get so bad my back would arch and I could be thrown out of a chair. Baclofen helped me.
Jacqui xx
Hello all and thanks for all your answers , I was on Gabapentin for nerve pain (legs) and now on lyreca (pregabalin), for tremors I have been prescribed Pramipexole ( anti parkisons) not really working
I have not been prescribed anything as such for the jerks as such , I have to see the neuro on the 29th of the month, I get jerks in my legs and arms , mostly in my shoulder
tonight I am up with acute back pain, yesterday had really bad tight chest, was worried as I have a heart condition, but it was more like a hug , I will post once I have seen the neuro, lots of other problems hey ho another day looms
take care all…Andy with thanks
Hi deb I just notice I didnt answer your question, mine started with what at first seemed like restless legs, now it has developed into my arms shoulders and sometimes ny whole body, frightening when it first happend
I see the Neuro on the 29th will have lots to do any advice on the first meeting would be gratefully accepted on here on by pm
thanks guys…you ahve put my mind at rest
Andy
Just had a thought about the jerks has anyone noticed they get worse when relaxing in bed? although I have them during the day I have found mine are at their severist at nightime when relaxing (or trying to) my muscles
be interesting to see if anyone has similar problems
thanks all
Hi Andy,
My jerks started at night, the moment I got into bed it would start, it got to the point where I was up in the early hours of the morning nye on crying as I couldn’t sleep. Every time I shut my eyes and tried to relax it would start and it went on for ages. I would lay on the settee, no good, I sat on the dining room chair with my head resting on the table, still no good I just could not stop jerking. My poor O/H couldn’t take it so we got seperate beds as every time I jerked he went with me.
Janet
x
Yes, definitely worse when relaxing - laid on sofa or in bed but also commonly in the car. I wonder if mine are affected by the angle of my neck/back but not sure. It’s the weirdest thing ever. Alongside the buzzing it seems we could be used as electricity generators! Debx
[quote=“andymoir”]
Hi deb I just notice I didnt answer your question, mine started with what at first seemed like restless legs, now it has developed into my arms shoulders and sometimes ny whole body, frightening when it first happend
I see the Neuro on the 29th will have lots to do any advice on the first meeting would be gratefully accepted on here on by pm
thanks guys…you ahve put my mind at rest
Andy [/quote]
Hi Andy,
I have pm’d you.
Debbie xx
Yes mine is ten times worse when in bed, my partners saying is she thinks shes either in bed with lindford christie or frank bruno !!
Last night my legs were the worse ever and today I have the burning legs from hell, Debbie I have Pm,d you a short answer for now and I will write more late thank you.
what medication does everyone feel is best for their jerks? I look forward to your comments
All the best Andy
Hi Andy,
I am taking Clonazepam and Keppra for the myoclonic jerks, it does work but hasn’t got rid of them completely but at least now I get a good nights sleep. Everyone is different, so what works for one doesn’t for another. Wish you the best of luck.
Janet
x
Thanks Janet , I will let you know if I am prescribed either drug, I have Neuro appt next week will let you lnow
Andy x