Cervical Dystonia/inner ear links

[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 😊

[Rkai]

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 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 😊

[Adaboo]

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 in reply to Adaboo]

Thanks for that Adaboo, Iwill tell my sister 😊

[basalganglia]

Hello Jane, there may be a few things that link the dizziness and walking issues with dystonia. These may just be contributors but not the whole reason:

A. Inadequate conversion rate of dopamine into norepinephrine

B. Oxidative stress, e.g. due to inhalation of air pollution

Of course, it's important to check the middle ear for proper operation.

There's more info here: dystoniahelp.org

I hope your sister is doing better that 10 months ago.

[smilingjane in reply to basalganglia]

Wow, thank you so much for responding. I will pass this on to my sister for future reference. She is much better now 😊 And thank you for the link x

[JADE61]

Hi I have very similar problems from time to time and Ive always put it down to CD.

I do find it improves after Botox injection.

[smilingjane in reply to JADE61]

Thank you Jade.I wish you well x