Last reply 2 months ago
Myoclonic Jerking

Hello all,

First off, my name is Mike and I am new here to the site. I have already had very warm welcomes from others since I joined two days ago!

I’d like to talk about a new symptom of mine that can be best described as “Myoclonus”, a jerking or slight twitching of a group of muscles.

It seems to occur only when lying down on my back with my eyes closed, getting ready for sleep or just relaxing.

When so doing, I will feel a slight shock sensation somewhere in my body, and then there will be a hard jerk or just a twitch in the same area.

I have talked to doctors about this, and they’ve all recommended anti-anxiety medications or muscle relaxers.

I’d like to avoid that kind of treatment if possible. If anybody has any recommendations about non-medical things to do for this symptom, it’d be great to hear them.

I find that there are many non-medical solutions to our problems, that when found can limit the amount of medication needed to be taken.

For example, I have been wearing compression garments for spasticity issues in my knees and numbness in my feet.

The socks and sleeves I wear have helped me far greater than any medication I have ever been prescribed, and they have allowed me to reduce or discontinue certain medications altogether. I have been able to reduce my Gabbapentin and stop Diclofenac completely.

The sleeves are made by Ultraflex. They are amazing, and I recommend them to anybody who has tightness in their legs or ankles

The compression socks are knee-highs, and because of them, I have been able to wear any kind of footwear I want.

For years, I had to wear these special sandals made by Sketchers, pretty much all the time.

They were expensive and wore down after 2 months or so, requiring me to buy them often.

Now, I can walk around in these socks and feel just fine. They have been a life saver for me, and I recommend them to anybody who has trouble walking due to nerve damage caused by MS.

So just to recap, I am looking for pointers about this strange issue of having intense muscle jerks (followed by shocks) at night when getting ready for bed.

It has effected my sleep and I’m worried that if it continues to happen and the jerks get harder, it may cause permanent ticks.

Hope everybody is having a good, pain free day 🙂

-Mike

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stumbler
1 year ago

@wnyeratheart , it’s surprising how many of these symptoms occur when we are trying to sleep at night. It’s probably because we no longer have any distractions, so these symptoms are our only focus.

You might find this article useful:-

https://www.mstrust.org.uk/news/views-and-comments/dealing-ataxia-and-tremor


wnyeratheart
1 year ago

@stumbler, great article…thanks for sharing!


wnyeratheart
1 year ago

It’s a strange symptom because it can occur even when I’m just trying to relax with my eyes closed. I think my body interprets that as trying to sleep, and it’s getting signals crossed between the brain and the rest of my body, causing jerks and twitches. Sometimes there is like a surge of electrical energy that can start in my chest or in my brain, and literally throw me out of bed. It def causes concern and has me nervous to even go to sleep at times. I have to make sure there’s nothing near me that can be harmful or painful should I be forced to collide with it. I just hope it’s one of those things that will go away on its own like some other symptoms have, because I don’t want it to progress to daytime ticks or balance issues.


purl2
1 year ago

@wnyeratheart – hi – I have no idea if this might apply to you, but since you’re open to
suggestions… I’m under the care of a chiropractor. I have been for over 20 years on and off – the
same doctor only because I think he’s the best I’ve ever found. Early on in my life with Primary Progressive MS I went through spinal ‘surges’ for want of a better word, up my spine that were pretty nasty. I
also lived through periods of the MS ‘hug’ that had me convinced I was having a heart attack! Also
early on my neurologist at the time told me in no uncertain terms to stay away from chiropractors. So
I did. But I was also having a lot more pain than I liked – and chiropractic had helped me in the past after
a nasty fall (prior to MS diagnosis). So I ignored them and went back for spinal adjustments.

Well – I haven’t had even a tingle up my spine in all these years. I also don’t experience the MS hug any
longer. Is this all coincidental? I have no clue. I also do yoga – as best I can – I’m fairly limited, but it still helps.
A chiropractor will look at your cervical spine and adjust it.

If you can’t find a good one (on good recommendation … try to ask around a yoga studio!!) – I’d
try ROLFING. Do you know that technique? It hurst like heck in the process but puts a lot
of things back together!

I’m in the U.S. and these things cost a bunch of $$$ so I now keep my yoga front and center which I can do by myself at home.
Take it or leave it – but I hope this helps a bit!!
Barbara


wnyeratheart
1 year ago

@purl2 – Yes Barbara, this certainly helps! I am open to all non-medical, holistic suggestions.

Just don’t want to get to the point my mom is at, where she takes over 10 medications.

I’m at 2 now, with an occasional pain reliever, and that’s where I want to stay.

I’m just not sure that a chiropractor can fix this issue, but I will certainly look into it.

It seems to be messages getting lost between my brain, spine and other parts of my body when it’s relaxed and in the sleep position. That whole process seems to go awry, causing a quick shock sensation and then either a slight twitch or a really hard jerk.

My biggest concern is that it’s going to develop into a daytime tick or something like that.

I can’t imagine driving or operating a machine and then having a sudden jerk. I’d prob hurt myself.


purl2
1 year ago

@wnyeratheart – do check out body work. I’ve always responded very well to these things. And
since a chiropractor will ‘open’ the space between vertebrae – nerve signals will flow more smoothly.
You may not think there’s a connection -but everything IS connected ;))
Worth a look see maybe!


cameron
1 year ago

Are you on a DMT?


mijen
1 year ago

Mike, I have had the same jerks! Unfortunately I don’t have any good advice for you. Mine started like yours, only occurring when I was going to sleep. Then last September I had a bad night where they kept me up most of the night and they were really strong, now I have them throughout the day. I told my Dr. about them and he calls it spasticity but I think they are myoclonic jerks. I feel like my stomach muscles contract and it forces air out of my diaphragm causing me to make a “huh” noise. Sometimes my head goes back and my eyes shut and my arms go up. The Dr. first prescribed baclofen which didn’t help then depakote which didn’t help either. I find they are worse if I’m tired but they just seem to come and go. I hate them but I guess it could be worse. Let me know if you find something that works.


wnyeratheart
1 year ago

The fast and violent jerking reactions when closing my eyes and lying down have strangely stopped! I hope they don’t come back too. I did nothing to make them stop, they just did.


maya
2 months ago

Mijen , you just 99% describe me I’ve been having all of these since March after a bad back pain and it never stopped since just wondering if you find out the cause or find something that help or anything ?


mlgilber1
2 months ago

I had the jerking and twitching at night as well really bad. It would freak me out when it happened. I’m super grateful that mine just went away on their own. It’s only been a little over a week though. I hope they have stopped for good for you!


grandma
2 months ago

Mike, we should realise how lucky we are living in the UK and don’t have to take cost into account, we might have to fight for treatments, we seem to have, as we call it, ‘a postcode lottery’ sometimes, one hospital in one area will give a certain treatment and one in the neighbouring county won’t, but that’s a very small prolem compared to yours, we have occupational therapists who give us equipment that think might help us for free, we have local councils who give us grants to install big equipment and make alterations to our houses(at no cost most of the time)
I have just has a lift put in the house do I can go upstairs to bed, and a huge ramp in my drive so I can get my electric wheelchair (free from the local NHS) so we are very lucky, thought of moving here?😍


lightning87
2 months ago

I suffered from slight muscle twitches for weeks. But it was whilst I was in limbo land and wonder if it was mostly caused by anxiety.

I did mention to my neuro and he asked if I drunk lots of coffee. I always have and always will but never experienced twitches all over my body like that before.

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