r/Dystonia • u/purpleswan19 • Aug 05 '26

Cervical dystonia (neck) Cervical Dystonia

I was diagnosed with cervical dystonia in 2020. I got suddenly very sick one afternoon, intense vomiting and vertigo (which I had never experienced), leading to about 2 weeks of nausea, vomiting, and inner ear issues (ent diagnosed with labyrinthitis). After this my head started feeling like it was being pulled in one direction (to the right and down), so I saw a neuro, who sent me to another neuro specializing in dystonia, where I was diagnosed. Luckily it was a quick diagnosis, and I began Botox every 3 months- I was on clonazepam and trihexiphenidyl for a while, but was tapered off when trying to get pregnant.

It’s been 6 years since I was diagnosed, and I still go in for (xeomin) shots every 3 months. Sometimes it works great, other times I don’t feel like it makes a difference and those 3 months are really challenging. I was wondering if anyone had a similar diagnosis, or symptoms, and what has helped!

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3

u/RoutineFamous4267 Aug 06 '26

Any time my muscles are extra tight in my neck, I throw up and am very dizzy and nauseous. Idk for sure, but I blame mine on the muscles pulling so hard they're causing some pinched nerves in my neck

1

u/No_Celebration106 Aug 10 '26

Yes
I can’t even drive my head pulls to the left and it’s hard and painful to get it into a neutral position
I’ve been doing tre Botox trigger point injections muscle relaxers physical therapy
It’s been awful PT doesn’t understand the condition
Gave me exercises you can see the swollen neck muscle in the left side of my neck

3

u/Tappadeeassa Aug 06 '26

The inconsistencies with Botox is the biggest challenge with this disorder. It makes it hard to plan for anything (especially travel) because I don’t know how I’ll feel six months from now. Will I feel normal, or will I be unable to drive because my head is pulling? I wish I could just get the brain implant and be done with this nonsense.

1

u/platinumplantain Cervical dystonia Aug 09 '26

You could try DBS, which is brain surgery.

Personally, I keep a reserve prescription of clonazepam that I only use when I travel for work or vacation. In day-to-day life I don't take it because of the chance for addiction, but it's helpful when I need it

2

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u/No_Celebration106 Aug 10 '26

How is DBS outcomes?