Cervical dystonia episodes/attacks? - Dystonia Society

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Cervical dystonia episodes/attacks?


Hello, I'm new here to this community. My name is Shy and I've been experiencing dystonia/myoclonus for about 3 years now,since I was 17. It isn't as bad as it used to be when it first started out but I do have my bad days. My question is, what tends to trigger your spasms?

I've been trying to pinpoint what gets my goat, and I've found that when I'm really fatigued (due to another health condition I have) they tend to be bad and when I'm faced with flashing lights and loud noises (such as at a movie or maybe a concert). For my shoulder dystonia, when I'm anxious and tired it tends to be worse...I think. XD

5 Replies

Hi there,I started experiencing pain in my left shoulder when I was 17.Not one professional could diagnose my condition.Eventually my neck and shoulder went into spasm and a neurologist diagnosed my condition as cervical dystonia.My dystonia is more painful when I'm tired or I'm put in a stressful situation,pretty much the same as you.Hope this helps.

Krsnasmile in reply to JJJ160

Hello Shy and JJJ , am new here and i can tell you it helps so much to know others understand this rare , painful and frustrating condition. I was diagnosed in 2005 after the brutal surgery(double mastectomy ) it really triggered it big time, I was at work and while lifting books and my head and hands started to violently shake, i rushed to a neurologist and was diagnosed. Since then it has calmed down because i no longer work and am now able to rest more often. My triggers are using my arms too much, stress, tiredness, worries even if I am real excited about going some place, I just need to stay calm...not easy because I am active, stubborn( and i pay for it later). We need to take care of ourselves with healthy foods and good association with positive people. Nature is a real friend for me. Spasms hurt like heck, it floored me recently and I cold not get up or even move, i panicked(naturally) and begged others NOT to call 911...i laid there until it passed while complaining the whole time but one thing i could do is talk!! I could not move, Well i try to keep a sense of humor, after surviving cancer, i say this will not kill me..and life must go on.

Get so fed up with my shaking! I'm definitely worse when anxious. But I'm also really bad for shaking now when I'm trying to talk to anyone, it might sound crazy but I feel that I have to have my hand up to my head to control it. So hard in social situations where you just want to chat but are kind of put off from doing so because of it!

Upsman in reply to EveLM

Did spend some time with one hand on my head and the other out for balance . After Botox it does only seem to take an occasional finger in the side of my head , although that spot is now a bit sore !🤣 As for social situations , I’m a service engineer which means I work in a diffent place every day . Some people ask , some don’t , and some state a bit , but it’s a wonky neck not a whellchair , so they do get over it quite quickly . I’m in an hotel in Cologne at the minute , after walking around the town , and my lack of german is the bigger concern .


My triggers r no sleep,stress,anxiety, pain.I've been trying to pinpoint my episodes for years n still try..I've heard people say to watch for full moons because it affects humans n animals with epilepsy !? Dystonia makes me nuts trying to figure it out but I'm not giving up seeking for new clues to it.hope I helped!?

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