I feel silly for asking but does anyone else here suffer with neck cramps?

I wondered because for as long as I can remember I've had these god awful random spasms of neck cramps even as young as 6 I can remember standing in middle of a road with my neck locked in a muscle spasm of cramp and pain fighting to to get it to pass or keep moving across the road till it suddenly released.

To this day I still have issues and by god they bloody hurt worse than tooth pain, the release after muscle clicks the pain is worse than the cramp itself which no matter what I do to get it to pass hurt's like nothing on this earth.. I guess on release it's close to a burning feeling in back of skull and neck.. I've tried different pillows, muscle cream rubs, neck rubs, warm things cold things. Had a massage once and masseuse said to me was way I slept on a pillow I had to fight to not say I have a physical disability you pillock and my necks been this way since I was a child. No one else in family seems to have these neck spasms/cramps. He did back tthen say my shoulder on the same side was being affected by neck issues.

It's a constant tightness there which builds up till it spasms out. As i've got older it's spread down into my shoulder causing stiffness and pain at it's worse.

Dread to think of the faces I pull as know starts of with me scrunching face up trying to relax the neck muscles to prevent the *click burning muscle pain* Thankfully my family know by face I pull why i'm pulling it but it involuntary pulls my head towards my right shoulder when this happens. Is this part of the ataxia and any ideas I'm at a loss what to do about itas hate the pain far worse than my stiff shakey hands and wrists days. Doesn't matter if I excercise or chill but seems if do alot with arms like today *gardening* it's so tense it feels like it could ping any second and i'm fighting it now.

Is this part of the ataxia? It's never been mentioned before and what should I do next? Bit at a loss on this one I look forward to any new ideas


Thanks the reply michael. Love the misfire explation. You made me smile,kind of assumed may have been i’ve gotten used to stiffness in muscles, shakes, random small muscle twitches and drunken mode as i call it. Wish theyd misfire in another body part for me though only place i’ve had it hit that way was knee twice an for period of time hip in early twenties. Though nowhere near as painful!

Ow at breaking leg! No broken bones for me unless count toes? Havn’t seen much on spasms either. Saw post elsewere on cramps with ataxia shall google tomorrow as bedtime for me and read a book night hope had good day!

Hi, Evil Emmy, and welcome to LWA. I'm still fairly new here too. Hi everyone else.

No, you really don't need to feel silly for asking. As you've seen, it's not mentioned much, but it can be a real problem.

And yes, is the answer. I have terrible, painful neck spasms. Part of them is permanent neck muscle spasm since the late 1990's, and the rest comes and goes in certain other neck and shoulder muscles through the day.

It sounds like the neck condition I have. If so, it has a name. It's called "Spasmodic Torticollis" (ST). It is actually the most common subtype of "Dystonia", so is also called "Cervical Dystonia" or just "Neck Dystonia". It's a neurological condition, as an involuntary muscle spasm disorder, and yes, it can often come with Ataxia.

Yes, it pulls on the neck, with involuntary muscle spasms. It can tilt the head sideways, pull it forward or back, or rotate the neck, and any mixture of these. It can also come with head tremors. And yes, it can be unbelievably painful. And that can lead to "chronic pain syndrome", and in some, panic attacks and depression, as reactions to such severe non-stop pain acting as a major stress in life. Irritability and even personality changes can occur.

Here is a video about ST, a little "dramatic" maybe, but has some good pictures:


Here is another good one, which covers treatments too (NB: it's alittle flickery a few times at the beginning, for those affected by flashing lights):


The Dystonia Society have a leaflet about it:


There is even a Rating Scale by which you can measure the relative severity of it.


In my case, I have muscles spasms almost anywhere in my body, from head to toe ("Generalised Dystonia"). So, for anyone getting similar things showing up elsewhere, try the Dystonia Society's Information Sheets as above. You can also score it on this Dystonia Scale for all parts of the body. The scoring method is "Provoking X Severity X Weighting", so maybe "Neck" is "2 X 2 X 0.5 = 2":


And here is the website devoted to ST, with lots of stuff in the Patient's Resource Centre:


Temporary relief can be sometimes be achieved by "sensory tricks", which involves simple touching of certain parts of the neck, face or head. Everyone is different, so try putting your hand on the affected muscle, or the muscles above or below them, the side of the face (try both sides), the chin, or the back of the head.

Like any Dystonia, it can be made worse by stress, strong emotions, cold weather, coffee, tiredness, and other triggers, so avoid them where possible. It might also be relieved by resting still, and sleeping.

It is usually thought to be caused by the "basal ganglia" in the middle-bottom of our brain, and which works with the cerebellum (involved in ataxia) to remove tremor and provide fine muscle control and coordination. It is now thought that the cerebellum and the basal ganglia share a nerve pathway in such a way that a fault in the cerebellum (ataxia) lowers the levels of the chemical messenger dopamine in the basal ganglia. This stop it working properly, and can cause muscle spasms, and tremors.

Research has also shown that the reason why "sensory tricks" might work, is because people with Dystonia have a problem where the sense of touch interacts with motor functions in a certain part of the brain. It's like a feedback cycle. Imagine we reach for something and want to touch it lightly and delicately. We see and sense our hand approaching it, and then make the first lighest of touches. That touch interacts in a part of the brain which then halts the movement (motor function) where we are - a light touch. It is this cycle of sensation-motor interaction which can also be affected, and so the motor function which moves muscles doesn't stop when it should - the muscles tense when they don't need to, for no apparent reason. If we then provide a sense of touch, it can help bridge the "missing link" in the cycle and stop the muscle spasm.

Alas, with Dystonia, only 5% - 10% get better on their own, and then, it's often only after many years. To get ST diagnosed and treated, you'd need to see a Neurologist (preferably one who specialises in "Movement Disorders"). It can sometimes be a bit tricky to find the best treatment or combination as you've seen: different people might have slightly different problems affecting the different parts of the brain as above, so no one thing works for everyone, and it may take a few tries to get the best effect. Some respond to various muscle relaxants, so they're worth a try. The top treatment though, is BOTOX Injections* and works for the most people. A small amount of Botox is injected into the nerve bundle which leads into the muscles which spasm. This knocks out the nerve, and the muscle spasms can stop. It lasts for about three or so months before it might have be done again. In more severe cases, if the Botox is working all the time but keeps wearing off, they can permanently disable the nerve in the muscles causing problems by surgery. This can be a more permanent solution.

(*Of course, this is actually the original reason they invented BOTOX: to treat Dystonia and muscle spasms. It has also been used for spasticity in Cerebral Palsy and other conditions too. It was only later that it got used for Beauty Treatments, as it relaxes the muscles which pull facial skin into wrinkles. The effect is that it reduces the appearance of wrinkles, and so works like a temporary "face-lift").

Hoping this helps :-)

With the offer of a hug,


Just another few thoughts. Yes, I get the shoulder thing. My left shoulder is usually 2 inches higher than the right these days. ST and the rest of it has caused curvature of my spine, as I also get it in the hip, and it's pulled up on the same side. Sometimes, my right shoulder moves on it's own, and does "internal shoulder rotation".

Do try the TWSTRS Scale as it covers everything including neck and shoulder stuff, activities, pain and disability, as well as the BFM Scale. It occurs to me that you could also then try taking it with you to see the GP if you ask to see a Neurologist again, and use that to explain why you need to see either an Ataxia UK Clinic (ring or email their helpline for a Specialist near you), or a Neurologist who specialises in "Movement Disorders".

Apart from that, hope this isn't overwhelming you with info - I guess that's nearly a weekend's worth of reading, and then time to let it all "sink in"..... :-)


Thanks abigail wow on the info ive been slowly reading! As far as i know i wasn’t diagnosed with dystonia weekends are busy for me igh so slow reading an responding hugss n thanks again prolly post better reply on monday as thats my sunday lol

Try a contoured memory foam pillow. I had a cycling accident about 5yrs ago(one of many) where i dislodged my shoulder from my body, for yrs i used to get stiff and painful neck and shoulder and pillow has really helped. From the ataxia point of few i get pain,cramps and really bad throbbing legs, especally at the moment, they feel like i've just run a marathon and all i can do when they're like this is rest

I'm also intersested in the connection between ataxia and dystonia...And yes, finally: http://www.dystonia-foundation.org/pages/additional_disorders_and_conditions/35.php.

I have late onset cereballer ataxia. As a child I had an operation for torticollis. It was first noticed at a school medical. I had not connected the two , so now I am wondering if the ataxia has always been there waiting to come out. It seems like it is a big jigsaw and I am slowly putting all the pieces together. I have learnt so much from this forum.

I have had various problems through my life but nothing has ever been diagnosed - even the ataxia is idiopathic.

thanks all for the replys god ive lost my post 5 times and loosing patience with myself! Stupid key clicks

Abby I've ead all links posted and it left me going HMN it's possible i've been undiagnosed but refraining from GP locally LONG LONG story and if start I will rant and go off on a different topic.

Jason thank you for the suggestion but i've already got a memory foam pillow and it made no difference, been using it since 2006 for the same reason hoping might correct the spasms if caused by night time posture. Alas no luck there yuk..

Wow coco, nothing ever been mentioned for torticollis but i WILL add a but whenever people cut my hair they always moaning and straigtening my head to the left. Seems my head slightly tilts to the right only no one picks it up till doing my hair?

Wish I could write more but it's late and having opnee of those days

Thanks all

Hello Emmy

That is horrible! I too get it. We are all very different but I have discovered that taking organic turmeric really works for me.

I take one tablet in the morning and one at night and if I am having a bad day one at midday

I get them online from here


If you take any other medicine, you obviously need to be careful.

This is a good website for checking if things interact badly


Hope it helps.

Love Lit

Thank you Lit never heard of those! I will look into it. Luckily i’m not on any medication and well the one otc migrane med i usually use for my once a month has been out of stock due to manufacturing issues so far its 3 months ugh

I really hope it helps


evil emmy said:

Thank you Lit never heard of those! I will look into it. Luckily i'm not on any medication and well the one otc migrane med i usually use for my once a month has been out of stock due to manufacturing issues so far its 3 months ugh

Just a quick "How are you doing?" Emmy?

Thinking of you :-)

Sorry abby i havnt been online here as much due to busy schedual in life hating the rainy weather and dealing wih family things! Hopefully its eased up hugss hope you are well

Got it now.Thought at first it was the computer.Difficult to look left.Can just look straight ahead.Hoped it would go away n the night but I still woke up with it.Very painful..Painkillers don;t work.Only had it once before and that was years before I had ataxia.I think that one was caused by the way i slept.This just came on me in the evening.Didn't connect it with Ataxia though but it could be connected


Yesterday I was in such pain. I'm kinda glad to know it wasn't just me.

Woken up with it again.Thinking of seeing an osteopath if it doesn't go away.Cynical though.