New to cervical dystonia: Diagnosed with... - Dystonia Society

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New to cervical dystonia

Dennis2019
Dennis2019

Diagnosed with this condition 9 months ago, struggling with accepting it. I have become very anxious and stressed over the last few months as I am so self conscious of the head shaking in social situations, my muscles are so tense which doesn't help.

How do other people cope in similar situations.

I have had 1course of botox 5 months ago which did help with the head shakes. I have another appointment for botox later this month , not sure if it will go ahead because of Covid.

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Hi Dennis,I have Botox for my eye and jaw. Usually every 3 months but long over due now due to covid-19. I also have had 2 injections for my head shaking which I felt did not help. I have had 3 appts cancelled from the consultant because of the virus. I am a shaking wreck, Very stressed and do not want to go anywhere as i panic. . I just hope our appointments re start soon. Take care

Hello

Totally understand how you feel.....I too struggle with accepting it as there is so much vagueness around Dystonia. My tremors happen as soon as I relax muscles so they tense up to fight the tremor....I am always told I have an unusual type of Dystonia which doesn’t help me understand at all.

I think with the awkwardness around people looking at your shaking, I think now with face masks and distancing, we are all having to learn to accept odd looks and behaviour....East to say but try and hold on to your confidence when out and about...look at them and smile.....that will break the stare and often they will smile back.

Hope you get your Botox back soon.

Hi Dennis,

You are obviously trying to come to terms with dystonia during this current pandemic.

It won't be easy so don't be too hard on yourself.

It seems good that you have another appointment for botox. Perhaps contact the hospital regarding attending sessions during Covid-19.

I have had 2 botox sessions cancelled since the lockdown and this may have contributed to a deteoriation in my dystonia.

Yes, it can be challenging to go out and about with the head shaking/jerky movements.

Perhaps choose a quieter time to go out during the day. I have done this when walking my dog and found sometimes the shaking seems to calm down if I visit a new "walking patch".

Anyway, remember despite all this you are a person who deserves respect.

Take care now.

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