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,