Cervical Dystonia/inner ear links - Dystonia Society

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Cervical Dystonia/inner ear links

smilingjane
smilingjane

Hello all

My sister was diagnosed with cervical dystonia 10 years ag and has 3 monthly botox injections.

She has recently started to get dizzy spells and sometimes has difficulty with walking properly at normal pace She feels as if the ground is slightly moving and also when looking ahead feels unsteady. This is helped with medication, which she dosnt want to take because of side effects.

The ENT consultant says it is an inner ear problem perhaps caused by an an inner ear infection in the past. And that there isn't much can be done except physio and meds and that it will probably reoccur.

My query is, does anyone out there have a similar problem? Importantly does anyone have any experience and or evidence, scientific papers perhaps? of a link between Cervical Dystonia and debilitating dizziness when walking.

Thank you for reading and in anticipation for feedback.

Jane 😊

4 Replies
oldestnewest

Hello Jane.... I can fully understand how unsettling and scary it must feel. I too have CD..diagnosed in 2012. Last November I suddenly experienced balance problems which was a horrible feeling...it unnerved me and confidence sank low. Eventually I was referred to an ENT consultant who said similar to your sister. It could well relate to inner ear. I was due to have various tests which included creating ores balance feelings so that I could learn how to react when loss of balance happened again. I have yet to have these (being cancelled due to Covid-19)

The consultant did say that often the sensations can happen from time to time rather than continue long term

I realise this is not quite the same as your sister but may have some elements in common.

I wish you both well.

Rkai

smilingjane
smilingjane in reply to Rkai

Hi Rkai

Thank you so much for responding.

Do you think that this may be related to your CD?

Did your consultant mention a possibility?

I do hope you are not suffering too much and that your consultants recommendations help you.

Also, do you have Botox injections? snd do you find they illiminate any pain and symptoms?

Very kind regards

Jane 😊

Hi, I have had the same feelings, nothing wrong with my ears though it’s because my head isn’t in the right position and it affects peripheral vision so that makes me feel unsteady and even sick sometimes. Still get the ears checked as we are not all the same. I have botox now and it has greatly improved the pain and movement x

smilingjane
smilingjane in reply to Adaboo

Thanks for that Adaboo, Iwill tell my sister 😊

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