Hi folks,i get a strange sensation when i turn my head far to the left or right,when i turn it back forward is when i notice the sensation the most.I can't explain the sensation but it's like vision is off a bit,it returns to normal after a a few seconds or more.I do have atrophy of the cerebellum,maybe the neck muscles pulling in the neck may be causing this problem,some days it worse than other days.I was wondering if others experienced this problem...thanks :)
Yep, I have that also, but is really only noticeable when I am sick or fatigued. For me, the bottom line is to remember to get rest. I have mild atrophy as well
Hi Dave, I hope you're having a good day! I have the same weird sensations, I expect most of us experience them. It's disconcerting and irritating but par for the course. Unfortunately, the only time everything is perfect for me, is if I keep my head level and focus straight ahead. Obviously this isn't at all practical but I enjoy it when I can! xB
Me too.. first learnt about this when neuro physio demonstrated .. I walked the length of room looking straight ahead and then tried walking same distance but looking from side to side. Couldnt do more than a few steps looking side to side!!
Apparently the shrinkage in cerebellum interferes with the tracking of messages to front brain. We need to remember to stop before looking sideways .. or indeed up and down. For this reason, I find it so much easier using walker [rollator] than sticks.
x
I get the same kind of thing if I turn my head to fast, my vision goes and I compleatly lose my ballance. I haven’t found anything that’ll help with that thou but I think it’s pretty much “normal” with ataxia of any kind
As Patsy describes, for some reason mobility and sight problems are much easier to manage if you hold onto something such as a rollator. I don't have one yet, I just get by with a walking stick but it's not ideal, I'm not really happy using it. The next best thing is a supermarket trolley, what a sense of freedom it gives! xB
One task that is done when trying out the balance vest is looking side to side and up and down, while walking.
the difference in wobbliness is shocking !
you repeat this with the vest on and you can see a positive difference (my personal experience, every persons ataxia may be different)
http://www.motiontherapeutics.com/our-products/bw300-versatile-vest/ (as demonstrated at the National Ataxia Foundation conference)
I do allot and told my Nero in the movement clinic about it last week (I'm always asking questions I always have a list when I go in). He sent me to this site and showed me how I need to do this. Check it out. The first few times he said make it much worse. He said to do it 3x's a day 5 x's each for a few weeks and see if it helps. He said some of the lightheadedness is from degeneration but he believes allot of it can stem from the inter ear. When doing this notice if one side or the other is a little worse. Do more reps on that side. Every once in a while do these after that time.
He gave me this site to do these at home. Hope these help someone here! :0)
Hi
It you eyes reajusting focus, because your eyes and head (And eye sockets and brain) have moved
I notice that when I'm watching television while lying on my side, I see double vision momentarily (the head of the person starts to divide and when I adjust my head, it goes back to normal). Or when I just intensly stare at the grout line of my floor tile, I can see the one line turning into two lines. It goes away if I blink or move my head slightly. I wonder if this is the start of double vision. It happens mostly when I'm tired. I tried to do tracking exercises with my eyes to make the eye muscles stronger and focus better. But it hasn't seemed to work. Before I knew what ataxia was or heard of it, when I looked in the rear view mirror of my car, I saw a set of four eyes and it would go away if I moved my head, but I thought nothing of it. Now knowing what I know I panic everytime an incident happens causing me to see double even if its just momentarily or from rubbing my eye or pushing on my face near my eye so my eyeball moves and goes out of focus causing double vision. At this point, I'm so paniked, I don't know what's normal anymore. Anyone have any input to this?
barb1228 said:
I notice that when I'm watching television while lying on my side, I see double vision momentarily (the head of the person starts to divide and when I adjust my head, it goes back to normal). Or when I just intensly stare at the grout line of my floor tile, I can see the one line turning into two lines. It goes away if I blink or move my head slightly. I wonder if this is the start of double vision. It happens mostly when I'm tired. I tried to do tracking exercises with my eyes to make the eye muscles stronger and focus better. But it hasn't seemed to work. Before I knew what ataxia was or heard of it, when I looked in the rear view mirror of my car, I saw a set of four eyes and it would go away if I moved my head, but I thought nothing of it. Now knowing what I know I panic everytime an incident happens causing me to see double even if its just momentarily or from rubbing my eye or pushing on my face near my eye so my eyeball moves and goes out of focus causing double vision. At this point, I'm so paniked, I don't know what's normal anymore. Anyone have any input to this?
wow nice discussion! I’ve had all these experiences with my eyes and didn’t know they were so common with Ataxia. I have a terrible neurologist at OHSU who acts like I’m faking ataxia if Its not affecting my legs on the one day of the year I see her. One day I will fire her. At any rate all of these eye symptoms are the reason I’m disabled and not working. Other things have imptoved (hooray!) but all the eye and vertigo stuff has not. wiil follow any suggestions you all have for improvement.
the only thing I have found to help is rest. Although I am very interested in Cannaibidiol. It is neuro-protective and seems to be promising with lots of neuro diseases including MS, Parkinsons and alzheimers. It may keep things from getting worse. I threw up a webpage on it ( my coding is self taught so be kind). I work with cancer patients, so much is devoted to that area, but Neuro is well represented. I guess it remains to be seen if it can improve things Here it is
maryseas said:
wow nice discussion! I've had all these experiences with my eyes and didn't know they were so common with Ataxia. I have a terrible neurologist at OHSU who acts like I'm faking ataxia if Its not affecting my legs on the one day of the year I see her. One day I will fire her. At any rate all of these eye symptoms are the reason I'm disabled and not working. Other things have imptoved (hooray!) but all the eye and vertigo stuff has not. wiil follow any suggestions you all have for improvement.
Yes, I get an unusual sensation when I turn my head left or right and then turn it back to a normal position. My eyes seem to have a mind of their own. Ataxia has affected my vision. Not sure why, as it's my new "normal"! I seem to notice it more when I'm over-tired. ;o)
Hi barb!
Since you mention the grout lines, I felt bound to respond. Yes, it's the same for me. I've been able to deal with this by wearing glasses with prisms (not ideal as many would probably testify) or wearing an Occlusal contact lens in the eye causing the double vision. I see an Eye Specialist as well as an Optician. xB
barb1228 said:
I notice that when I'm watching television while lying on my side, I see double vision momentarily (the head of the person starts to divide and when I adjust my head, it goes back to normal). Or when I just intensly stare at the grout line of my floor tile, I can see the one line turning into two lines. It goes away if I blink or move my head slightly. I wonder if this is the start of double vision. It happens mostly when I'm tired. I tried to do tracking exercises with my eyes to make the eye muscles stronger and focus better. But it hasn't seemed to work. Before I knew what ataxia was or heard of it, when I looked in the rear view mirror of my car, I saw a set of four eyes and it would go away if I moved my head, but I thought nothing of it. Now knowing what I know I panic everytime an incident happens causing me to see double even if its just momentarily or from rubbing my eye or pushing on my face near my eye so my eyeball moves and goes out of focus causing double vision. At this point, I'm so paniked, I don't know what's normal anymore. Anyone have any input to this?
Brian , your website on cannaibidiol is quite interesting. Let us hope that the research will continue and that many cancers and neurological diseases will be helped if not cured. Thank you for your post.
Brian Kanto said:
the only thing I have found to help is rest. Although I am very interested in Cannaibidiol. It is neuro-protective and seems to be promising with lots of neuro diseases including MS, Parkinsons and alzheimers. It may keep things from getting worse. I threw up a webpage on it ( my coding is self taught so be kind). I work with cancer patients, so much is devoted to that area, but Neuro is well represented. I guess it remains to be seen if it can improve things Here it is
maryseas said:wow nice discussion! I’ve had all these experiences with my eyes and didn’t know they were so common with Ataxia. I have a terrible neurologist at OHSU who acts like I’m faking ataxia if Its not affecting my legs on the one day of the year I see her. One day I will fire her. At any rate all of these eye symptoms are the reason I’m disabled and not working. Other things have imptoved (hooray!) but all the eye and vertigo stuff has not. wiil follow any suggestions you all have for improvement.
Thank you Cicina
Thanks Brian – this looks interesting.
Re Cannaibidiol. If this was available/legal in the UK, I would try it..