Good Vibrations?

[neta]

Second time I am writing about this,, I find the vibrations from my electric toothbrush are helpful with my visual disturbance. NOT A CURE!!! But it occurred to me that perhaps a helmet with a powerful vibration can provide some overall relief. Thoughts??? N

[wobblybee]

I googled 'can vibrations help nystagmus'. There are links which explain how Nystagmus can be provoked and diagnosed by vibration techniques but, I couldn't see any reference confirming there was any benefit to vibration. Speak to your Neurologist 🙂xB

[neta in reply to wobblybee]

Thanx for answering. On frontal view, I do not look like have nystagmus but I guess I must My neurologist doesmt t give me the time of day xxxxxN

[wobblybee in reply to neta]

🙂 I have 'downbeat nystagmus' so it's likely only obvious to me (or a Neurologist), it usually kicks in if I flick my eyes to either side. Unfortunately there doesn't appear to be anything by way of therapy for Nystagmus. Although you could see a NeuroOpthalmologist, to confirm it isn't actually a different eye condition 🤔

And, everyone with Ataxia should have their condition reviewed at least yearly. Unfortunately, for one reason or another, many of us have experienced 'indifference' from a medical professional. But it does help to have a good rapore, it makes communication better for both the patient and the doctor. This is especially important when trying to explain symptoms of Ataxia, which can be confusing at the best of times. Those of us in the NHS system have little to no choice but, for anyone consulting a Neurologist privately, it should be possible to choose someone else 🤔xB

[neta in reply to wobblybee]

Hi B'

I thought nystagmus was the shaky eye thing I guess I must be wrong. zone can have it w/o shaky eyes. Is there any treatment for the blurriness?

[neta in reply to neta]

I meant "one can have it"

[ladyntramp]

Hi wobblybee, seems like neurologists are all the same, no matter what country you are in (I'm in Australia). I use private health insurance so therefore you would think I would be able to pick and choose, but no, I saw a neurologist privately then she said she didn't want to see me for 5 years. I went back to see her in 5 years only for her to be rude to me. So of course she is no longer my neurologist. My GP couldn't find another neurologist this side of 'woop woop' (near me) so I decided to go public. Guess what? He was nice, listened to me and actually sent me for genetic testing. Unfortunately he hasn't made another appointment for me but after seeing him twice he has said I can go back to see him whenever. Couldn't believe the much better treatment by going public, and the total disregard by the private sector, not to mention the scarcity of the breed of neurologists. I agree with you about being reviewed on a yearly basis, even every two years would be better than hardly ever. My cousin lives in the UK and I believe she gets to see her neurologist every year or two. Just because there is no cure for our ataxia they seem to think we don't need their service - I know I would appreciate being seen each year by an understanding neurologist. How are you? I do like reading your comments because you always seem to have something sensible to say. Stay well. Best wishes Barbara.

[suzie44na]

Hi neta, my electric toothbrush bothers me it makes me much more of balance. So I think you may be right on it affecting people, it does

Suzie

[neta in reply to suzie44na]

Interesting....thanx