Rebecca McLean, a Research Associate at the University of Leicester, is currently conducting a study looking at quality of life and nystagmus and hopes to develop a nystagmus specific quality of life questionnaire.
As part of the process of developing the questionnaire Rebecca needs people who have nystagmus to score items that may possibly go into the questionnaire. This can be done by post. If you have nystagmus, live in the UK and are over 16 years of age and you would like to help with this research then please contact
I have Nystagmus and it is considered part of my Ataxia. I was also having trouble with my ears (rumbling etc) and so I was referred to an Ear, Nose and Throat specialist who dismissed my symptoms as part of my Ataxia. I wanted a second opinion and was sent to the Ataxia Clinic at the Royal Hallamshire Hospital, Sheffield with Prof. Marios Hadjivassiliou.
He referred me to the Audio Vestibular Dept where a Mr Wattana was very interested in my Nystagmus and diagnosed BPPV with downbeat Nystagmus. I used the Brandt-Daroff home exercise which cleared up my symptoms immediately.
Before this shelves in supermarkets would dance and crossing roads would be dangerous as I couldn't judge distances properly. I still have nystagmus but it doesn't bother me at all.
I no longer have dizziness just the usual Ataxia symptoms of poor balance and fatigue.
I also have downbeat Nystagmus. An Ear Nose and Throat Specialist said I didn't have BPPV after he'd done the Hall-Dixpike Test, but later the same test was done at the Falls & Syncopy Dept and they thought I did. They twice tried the manoeuvre which corrects this, each time I experienced a sharp nerve twinge across my head, so I decided not to pursue it. I still have Nystagmus but have learned to live with it and concentration permitting, remember to take things slowly!
I emailed Rebecca re the questionnaire. I'll google Brand-Daroff.
regards
Beryl
Lockie said:
I have Nystagmus and it is considered part of my Ataxia. I was also having trouble with my ears (rumbling etc) and so I was referred to an Ear, Nose and Throat specialist who dismissed my symptoms as part of my Ataxia. I wanted a second opinion and was sent to the Ataxia Clinic at the Royal Hallamshire Hospital, Sheffield with Prof. Marios Hadjivassiliou.
He referred me to the Audio Vestibular Dept where a Mr Wattana was very interested in my Nystagmus and diagnosed BPPV with downbeat Nystagmus. I used the Brandt-Daroff home exercise which cleared up my symptoms immediately.
Before this shelves in supermarkets would dance and crossing roads would be dangerous as I couldn't judge distances properly. I still have nystagmus but it doesn't bother me at all.
I no longer have dizziness just the usual Ataxia symptoms of poor balance and fatigue.
I have had physio for my BPPV and I was given a long list of exercises and was told not to bother with the ones that did not make me feel dizzy The physiotherapist told me that the reason I felt dizzy was that the brain was getting mixed signals which confused the brain and it was trying to cope. It was essential that the exercise made me feel bad. The brain had to go through it to improve things.
The exercise that completely rid me of that dizzy feeling was not exactly the Brandt-Daroff but similar, I'll outline it.
a) Lie width way across a double bed with your neck and head over the edge (40 seconds)
b) Tuck chin into chest (keep for 40 seconds)
c) Rise to sitting position, (keep for 40 seconds)
d) Repeat the sequence for five times if you can. It may take you a few days to build to five times.
My dizziness and ear rumbling has disappeared and I no longer do this exercise.
Try it. You must remember that it should make you feel poorly for a while.
There must be some good research going on in the US. It's such a big country that specialist Ataxia clinics must be hundreds if not thousands of miles distant to you I am lucky that I have one reasonably near headed by Dr Marios Hadjivassiliou a world authority on Ataxia. Look him up on Google. But I am sure that the USA will have the equivalent.
I am attack ataxia and I am very new to writing comments but after reading all of yours I just have to say the person who wished for more help in the states is perfectly correct I am here in Canada I have been using a walking stick for two and a half years and have only the internet to gather info all of it from England , when I explained to one doctor that I thought I had gluten ataxia he walked out of the waiting room in disgust and didn't come back ,so you are very fortunate to live in Britain they are medically superior and they listen and believe AMAZING thanks
I have had physio for my BPPV and I was given a long list of exercises and was told not to bother with the ones that did not make me feel dizzy The physiotherapist told me that the reason I felt dizzy was that the brain was getting mixed signals which confused the brain and it was trying to cope. It was essential that the exercise made me feel bad. The brain had to go through it to improve things.
The exercise that completely rid me of that dizzy feeling was not exactly the Brandt-Daroff but similar, I'll outline it.
a) Lie width way across a double bed with your neck and head over the edge (40 seconds)
b) Tuck chin into chest (keep for 40 seconds)
c) Rise to sitting position, (keep for 40 seconds)
d) Repeat the sequence for five times if you can. It may take you a few days to build to five times.
My dizziness and ear rumbling has disappeared and I no longer do this exercise.
Try it. You must remember that it should make you feel poorly for a while.
I am sorry to hear that you have had so much trouble getting them to take you seriously. I know that we will all tryout every avenue possible to find out what's causing this thing to happen to us because we want it to stop so we can get on with our lives. My neurologist carried out blood tests to eliminate gluten ataxia. He also checked for Vitamin E levels (as the inability for the body to absorb Vitamin E can be a cause of Ataxia). Try cutting out Gluten in your diet and see how you feel and next time you see a neurologist ask for a blood test to check for Vitamin E. I was not satisfied with my first neurologist and so I asked my GP (Family Doctor) to refer me to the hospital in Sheffield as DR Hadjivassiliou is there and he is a specialist in Gluten Ataxia (check the internet) It's always worth asking for a second opinion.
Lockie, how long did it take for you to get rid of your dizziness by doing the Brandt-Daroff(or similar) exercise ? Days, weeks?. Please don’t say months or even years…
Check the National Ataxia Foundation-Canada. You can find their website on the Internet. Send them an email and ask if there is an ataxia specialist in your area.
I did this through the American website and they replied the same day with the name of the ataxia specialist closest to my town.
Hi Cicina,
I felt the benefit almost immediately. I kept the exercise going for about three weeks but felt that I really didn’t need to do it anymore. I haven’t done it for months and the dizziness hasn’t returned.
Regards
Lockie
