This link goes a long way in explaining why some of us are challenged by Vestibular problems, apart from Cerebellar issues. Why we find Compensatory Strategies helpful (using a shopping cart in busy environments). And, how varies devices and technologies may be helpful.
Interesting read. Personally, I have balance problems especially in the dark. Going downhill is tough also.
My basic problems are this type, this is the first comprehensive information that I’ve come across that fully describes the symptoms.
Well that article describes me exactly… most of it anyway. Sloping pavements, low light situations and bumpy surfaces when walking are particular problems for me. Standing or sitting I show no symptoms of my problem but as soon as I walk forward I appear to be tipsy. A few months ago I bought a rollator with large wheels (around 9Inches at the front) this helps smooth out the bumps. When the Covid restrictions ease it will be nice to discuss my problem face to face with my consultant rather than the telephone conversations we have occasionally, but at 83 years of age (me not the consultant ) I’m not expecting any sudden miracle fixes for me.
Thank you greatly for giving me the chance to read the article, I found it quite reassuring.
I think I have it too. My neurologist seems to think my seizures are an epilepsy thing. I told him I thought it was something to do with my ears and he looked at me as if I was crazy, which might be true as well!
My initial symptoms (Deja Vu and a seizure in my sleep) led me to be diagnosed with Epilepsy, but that diagnosis wasn’t linked to my ears, the Vestibular issues I went on to have were unconnected. Epilepsy was dismissed when I started having falls, and an MRI showed Cerebellar Atrophy.
For many years I’ve experienced the Vestibular problems described in the above post, and my Neurologist suspects I may have a type of Episodic Ataxia. As well as Vestibular problems I have general ataxia symptoms, very poor balance - choking - poor memory recall - pain and stiffness - to name a few…
Mmm. Well I’ve read somewhere that inner ear trouble can cause seizures. I’m not convinced at all that I have epilepsy.
Could it be you read something like this…
The effects of hyperacusis can range from a mild sense of unease to a complete loss of balance or upright posture with severe ear pain. In serious cases, it can cause seizure-like activity in the brain.
vestibular.org › diagnosis-treatment
I seem to remember that it was something you referred to about eye trouble. So I looked up whatever you said and it said such eye trouble is connected with the inner ear and it may cause seizures too. I didn’t say anything at the time because we shouldn’t really diagnose ourselves and it didn’t seem likely then - but we can investigate. Your article makes it a bit more likely now.
Thanks for the article Beryl .Here in Auckland New Zealand I went to an ataxia day clinic organized by my Neurologist last year and as part of the clinic had my ears tested and discovered that I
have a vestibular issue. I have balance problems and find downhill slopes and uneven surfaces difficult and have SCA 6 but still mange to get to the gym 2/3 times a week and yoga for 45 minutes once a week. I really appreciate the good work you do Beryl along with the replies from fellow people with ataxia, keep strong and positive friends.
You’re very kind Barry. Sorry to learn you do have Vestibular issues, but I’m glad the info was helpful
yes, I’m 79 this year and concur with what you say. thank you for finding the right words.
A bit confusing as it doesnt actually mention ataxia. I personally dont have symptoms of dizziness, nausea or inner ear problems but they do refer other functions of brain, imbalance and old age. I wonder why all the neurologistsI have seen, have never mentioned vestibular. Patsy x
Patsy, I’ve yet to be seen by a Neurologist who takes every symptom into account…
In my opinion, I have found that most doctors, including specialists, are NOT familiar with Ataxia the illness but only ataxia the symptom.
I have given up but the interest is still therex
Patsy, like Nike used to say, never give up!
I’ve not given up with exercise and walking Chas, just finding a reason for it x
Ummmm… this makes a LOT of sense. I thought it was simply BPPV ( Benign paroxysmal positional vertigo) which I had had previous bouts of… still inner ear stuff but didn’t account for the challenges of walking in the dark or on any non-flat surface (hell, even a crowned road throws me off). I get a spinning head if I sleep on my left side… which is a pain.
I also like that the article promotes exercise - a challenge in the winter (I’m Canadian), only exacerbated by the pandemic. Ah, spring is near!
My name is Tahira I am South African and I have Cerebellar Ataxia for 2 years now, recently I have been treated for BPPV which did not help at all I was told it could be my Vestibular besides being out of balance because of the Cerebellar I find myself constantly unbalanced and tipsy when I’m standing and walking everything moves with me I have had many falls, even head movements make me dizzy. I was doing physiotherapy but am finding it difficult to do all the movements.Does anyone have a similar experience.