I find when I look up and back or just from side to side, the dizziness gets worse. Is there an exercise for this? In other words, two days ago, I was somewhere and the number screen (meter) was just above my head. When I looked up and behind from a sitting position to see if it was my turn (number), a wave of dizziness came over me. I was better off standing and looking at the meter full face frontally. Also when crossing the street (there are often no traffic lights) checking quickly from side to side, is problematic because I cant come to a full stop to check.. N
I didnt realize this was called nystagmus. My eyes are unaffected by this phenom and are stable.
Strolling in a museum, ditto shopping for clothes-- which requires walking, pausing and looking-- is quite difficult. I forced myself into a p0sh dept store in the summer and just grabbed a few items from the nearest racks. I didn't even know what I bought! Interesting way to shop! Neta
Beryl Park said:
Hi Neta!
I've experienced everything you mention. This particular problem has been with me 15yrs, and I still haven't come to terms
with it! Nystagmus as far as I know, is not controlled by medication, or exercise. One of the most frustrating aspects for me
has been not being able to focus in bookshops and libraries. Tilting my head to the side to read along a shelf of books is a
nightmare. The days when I could dart across a road are long gone!
I used to love to shop! On good days I still manage to browse but nothing like I used to. At one time I
could gaze across a department and instantly pick out what I wanted to look at. Now, a distant memory.
It's frustrating to say the least. Looking at anything requires concentration on focus, distance and angle.
Grocery shopping takes more time because I have to change glasses to read contents. Being in new
surrounding seems to make it worse.
neta said:B
I didnt realize this was called nystagmus. My eyes are unaffected by this phenom and are stable.
Strolling in a museum, ditto shopping for clothes-- which requires walking, pausing and looking-- is quite difficult. I forced myself into a p0sh dept store in the summer and just grabbed a few items from the nearest racks. I didn't even know what I bought! Interesting way to shop! Neta
Beryl Park said:
Hi Neta!
I've experienced everything you mention. This particular problem has been with me 15yrs, and I still haven't come to terms
with it! Nystagmus as far as I know, is not controlled by medication, or exercise. One of the most frustrating aspects for me
has been not being able to focus in bookshops and libraries. Tilting my head to the side to read along a shelf of books is a
nightmare. The days when I could dart across a road are long gone!
I used to love to shop! On good days I still manage to browse but nothing like I used to. At one time I
could gaze across a department and instantly pick out what I wanted to look at. Now, a distant memory.
It's frustrating to say the least. Looking at anything requires concentration on focus, distance and angle.
Grocery shopping takes more time because I have to change glasses to read contents. Being in new
surrounding seems to make it worse.
neta said:B
I didnt realize this was called nystagmus. My eyes are unaffected by this phenom and are stable.
Strolling in a museum, ditto shopping for clothes-- which requires walking, pausing and looking-- is quite difficult. I forced myself into a p0sh dept store in the summer and just grabbed a few items from the nearest racks. I didn't even know what I bought! Interesting way to shop! Neta
Beryl Park said:
Hi Neta!
I've experienced everything you mention. This particular problem has been with me 15yrs, and I still haven't come to terms
with it! Nystagmus as far as I know, is not controlled by medication, or exercise. One of the most frustrating aspects for me
has been not being able to focus in bookshops and libraries. Tilting my head to the side to read along a shelf of books is a
nightmare. The days when I could dart across a road are long gone!
Do you have nystagmus in your eyes? Only someone looking at your eyes can tell . Your neurologist would be a good place to start if they know what it is. My original neuro simply jumped back and said, “oh my gosh” as though he’d seen a ghost. Not good… Didn’t go back to that one!
Nystagmus is a condition in which the eyeball moves, upon gazing, up and down ( vertically
nystagmus), or sideways, (horizontal nystagmus) it is common in ataxia. There is usually a point where the movement is null, doesn’t move or moves less than other positions. Looking in other directions usually results in vertigo to one extent or another. Gazing straight ahead is usually the null point.moving your body so your gaze is level usually works. It takes some practice. To the best of my knowledge, there is no cure. Some doctors (mine) have tried prescribing Diamox or
4-Apy ( Aminopyridine) ask your neuro.
My opthomologist tried putting prisms into my eyeglasses. Didn’t work. Just made me sicker. The prisms are supposed to force your eyes to keep still. This only works if it is an eye problem, not a brain problem.
Like many of the other symptom of Ataxia, you just have to learn to adapt . Turn your body, not your eyes. Drive on quiet roads, no freeways and when this no longer works, quit driving. Shop at stores that have their merchandise no higher than eye level, many do this for security reasons. If it is not your eyes, it might be your neck. Again adaption is the name of the game combined with a good attitude. Hope this helps
Rae… It is not that life has been easy, perfect or exactly as expected. I just choose to be happy and grateful, no matter how it all turns out…
The doctor who identified my Nystagmus was also ecstatic! Ooh, bouncing eyes! Prior to that they were testing for Benign Positional Posterier Vertigo and that was how Nystagmus was confirmed. I've got prisms, it's ok if you remember to look straight ahead, and are in a sitting position. But, when walking around my eyes seem to bounce against the prism, I get disorientated. Fluorescent lights and poor lighting add to the confusion.
Currently, I have an Occlusal Contact Lens to wear in my worst affected eye, in addition to my glasses, it's more helpful than just the prism but off course you have to come to terms with just seeing out of one eye!
I've been offered Botox to help with the double vision, it's done regularly at my local hospital, with positive results.
Rae said:
Do you have nystagmus in your eyes? Only someone looking at your eyes can tell . Your neurologist would be a good place to start if they know what it is. My original neuro simply jumped back and said, "oh my gosh" as though he'd seen a ghost. Not good.. Didn't go back to that one! Nystagmus is a condition in which the eyeball moves, upon gazing, up and down ( vertically nystagmus), or sideways, (horizontal nystagmus) it is common in ataxia. There is usually a point where the movement is null, doesn't move or moves less than other positions. Looking in other directions usually results in vertigo to one extent or another. Gazing straight ahead is usually the null point.moving your body so your gaze is level usually works. It takes some practice. To the best of my knowledge, there is no cure. Some doctors (mine) have tried prescribing Diamox or 4-Apy ( Aminopyridine) ask your neuro.
My opthomologist tried putting prisms into my eyeglasses. Didn't work. Just made me sicker. The prisms are supposed to force your eyes to keep still. This only works if it is an eye problem, not a brain problem.
Like many of the other symptom of Ataxia, you just have to learn to adapt . Turn your body, not your eyes. Drive on quiet roads, no freeways and when this no longer works, quit driving. Shop at stores that have their merchandise no higher than eye level, many do this for security reasons. If it is not your eyes, it might be your neck. Again adaption is the name of the game combined with a good attitude. Hope this helps
Rae... It is not that life has been easy, perfect or exactly as expected. I just choose to be happy and grateful, no matter how it all turns out...
I did Vestibular rehabilitation (8-12 week intense program!), and I saw a Neuroptometrist and did the prism glasses route. I also did interactive metronome at the rehabilitation hospital. I found all three helped. My first pair of prisms seemed to help much more than the second. I want to go back and get swapped back to the first prescription. I think doing the visual rehab with the vestibular rehab is really important as both systems work together. It's so hard though because some of my coping strategies (like looking away or down) are probably not the best techniques, rehab changes that and breaks you out of bad habits, but it also leaves you a bit vulnerable in that doing things the "right way" is not always the "easiest way". I need to keep working at it!!!
I am interested in why u say it could be your neck. Can u please explain.
donneybluewayne
For me too not so much dizziness more loss of balance. This also happens when I stop walking or if I walk slowly. I have one speed for walking, fast, otherwise I have a lot of involuntary movement, marionette movements.
Can I add this, I don't know but it might be helpful to somebody.
In 2000 I was complaining of pain on the left side of my head, had balance problems and had Iritis.
I had an MRI and it showed there was mild Posterior Fossa Atrophy and a tortuous Right Vertebral Artery somewhat distorting the Medulla on the right. A Neurologist simply told me just to live with, there was nothing he could do, and he didn't give it a name!
By 2011 I felt I'd lost the plot with the condition, I had another MRI. This time a different Neurologist told me I had Cerebellar Atrophy and he diagnosed SCA, cause unknown. He seemed surprised I didn't already know this.
I've had several whiplash incidents, I often wonder if these severe jerks to my neck played any part in this.
Spinocerebellar lAaxia often starts years before we realize or a doctor links all the symptoms together. In my family we seem to have over stepped the odds as 775%of s have it. Our own support group! No two people have the exact same symptoms, but many symptoms are commonly experienced. In my case, every one of the discs in my back are desiccated. This causes a grating of one vertebrae on the other as the cushion between them is destroyed. My sister had adult onset scoliosis. The message to the muscles on one part of the back pulled stronger than the other, creating the curvature. You end up walking around and sitting, standings or sleeping all hunched over. The curvature of the spine can press on vital organs. In my case, I only feel the grating and attending symptoms in my neck. While the inabilities of this disease can be maddening, the flip side is that you sometimes don’t experience pain the same as you once did. Exercise exercise and more exercise can help with the curvature but in my case the only thing they can do is to put a rod in my back. Your neck is of course part if your spine and the grating of the discs in you neck can create a host of symptoms.
I have no problems relating to this, yes I am aware that having ataxia, I cannot take to many shortcuts, otherwise most times I pay for it, does that stop me from trying some times-No (slow learner). Have a good day, all the best.
that reason is why i had to quit my job! i ran a machine shop for 30 yrs. my brain stoped but my body didnt! it was very frustating ( i became a expert on falling down) going to the store to buy my food is a chalange , i have to go in the we hours in the morning before everybody else gets there. sucks because if i drop money or anything i have to just leave it or fall down trying to pick it up .
that reason is why i had to quit my job! i ran a machine shop for 30 yrs. my brain stoped but my body didnt! it was very frustating ( i became a expert on falling down) going to the store to buy my food is a chalange , i have to go in the we hours in the morning before everybody else gets there. sucks because if i drop money or anything i have to just leave it or fall down trying to pick it up .
Right, As I said, I think it's party of the general condition. I, too, have no disc issue. Best N
Roscoe said:
I have no problems relating to this, yes I am aware that having ataxia, I cannot take to many shortcuts, otherwise most times I pay for it, does that stop me from trying some times-No (slow learner). Have a good day, all the best.
I find this site very confusing, I may have answered you, The point is no one in my family has this. I suspect my pang of dizzinessas part of the dizziness that is a symptom of CA. I hope that you and your family are better.