Cervical Dystonia aka Spasmodic Torticollis - Personal Perspective

I'm a 47 year old man living with severe Cervical Dystonia. This is the first of a series of videos where I'll share my experience of what it's like to live with this neurological disorder.
It causes me significant disability and severe pain which has meant I'm unable to work and am significantly limited in what I can do on a day to day basis.
Despite a background as a health professional for 25 years I was unfamiliar with this condition Cervical Dystonia (CD) also known as Spasmodic Torticollis - until I developed it myself.
I hope sharing my journey including the symptoms, the treatment and the impact it has on my life can be helpful to others. This is a journey which is very much still in progress so I'm going to share along the way.
I also hope to be able to interview some other people with lived experience or professional experience and bring that to this channel.

[@tklinedancing]

you nailed it the worst is trying to talk to a person and keeping my head from turning!!!!!!!!!!

[@Dystoniac1]

Sure is. Stressful & painful

[@christianewray7175]

Thank you Anton for sharing your thoughts & experiences. I was diagnosed with CD 18 years ago & have learned to live as gracefully as I can with the pain.

[@Dystoniac1]

It sounds like sometimes that's the best you can do

[@ashbeware2145]

Good on you Anton

[@Dystoniac1]

Thank you

[@sherryhaynes6188]

Thank you for sharing. I was diagnosed 22 years ago. Looking forward to watching more of your videos.

[@Dystoniac1]

Very early days for me compared to you!

[@tklinedancing]

I've had it for over 20 years God bless you

[@Dystoniac1]

You’ve lived with this much longer than I have and that gives hope to beginners like me!

[@KarenMagno]

Thanks for sharing. I have a family member that has this and was diagnosed in January 2023. I am looking forward to your future videos and hear about any treatments you have tried.

[@Dystoniac1]

Will definitely keep you posted

[@NoraCallahan1997]

Thank you. My DX came in 2015, but the symptoms started about five years before proper DX.

[@Dystoniac1]

That's a long time to wait for a diagnosis. I hope you're doing better now

[@HigginsDog09]

Anton, thanks for this video. I first had this in 1984, and had a very rare remission (after taking two drugs designed to help people with Parkinson’s). Remission lasted until 2013. Came back with a vengeance, drugs didn’t work, Botox helped a bit. Finally had DBS (Deep Brain Stimulation) surgery and it gave me back my life. I resisted the idea for a few years, but I am 95% better now, with a few xeomin injections every 3 months.

[@Dystoniac1]

Great to hear a positive outcome - thank you

[@joannschmidt6995]

I was diagnosed 9 months ago with mild spasmodic torticollis; I'm sure I had it a lot longer than that. I was Dx with an EMG/NCS. At time of Dx, I was given Gabapentin and Meloxicam which helps. I have a slight tilt to the left. I have pain and spasms but it's tolerable. I'm hoping it doesn't get any worse. I have not tried Botox, not sure if I should get into that right now.

[@Dystoniac1]

Best of luck

[@Drummin3eleven]

I'm in the same boat with you brother. It's tough. Alot of things in life I miss doing because of this condition. Botox doesn't work, can't take the pills. Recently had DBS implanted, haven't seen any improvement yet.

[@Dystoniac1]

That's a shame about the DBS. What next?

[@Drummin3eleven]

DBS takes several months of different programming sessions till I start to experience relief.

[@HOZZYWOOD]

I have had dystonia since 93 still employed,it's been getting worse lately, is it possible to get disability with this?

[@Dystonia101]

Thank you for sharing!

[@Dystoniac1]

No worries!