I do not know what it is but I have it too. I am not diagnosed but am still working with my doctor to figure out what is wrong with me. What you described is something very similar to what i experience when i go to the grocery store.
Someone else with more knowledge will respond.
I have been dx CIS and experience what you are describing as well.I now have to go to the grocery story several times a week and get less items. Doing a whole weeks shopping is just way too overwhelming and tiring! Too much stimuli of any sort gets to me! BE it visual, auditory or tactile!
I was a teacher for 18 years (first grade) and have been on med leave since last Feb due to issues like this as well. With all the activity in the classroom (noise, movement, etc) I found myself getting dizzy, light headed, and having great difficulty attending. Would get very confused as the day wore on!
I used to be able to know what was going on in my room at all times (kind of like the eyes in the back of the head idea) and was excellent at being proactive in keeping all things running smoothly and knowing needs of all my kids, but over the past couple of years, managing my classroom became more and more difficult.
MY neuro's office has told me that experts in the field are paying more attention to the cognitive issues related to MS and the impact it can have on daily life!
Maybe one of our experts can shed more light on this?
Good luck to you!
In places with bright lights and longs rows of straight shelving I have some issues. I found out that covering my right eye causes it to stop. I'm guessing that it is related to the ON, postive VEP and slight vertical diplopia in my right eye. I have some balance issues that I compensate for by depending on my eyes, and things that messes up the visual data can get me a little disoriented and throw my balance off, so I'd guess that could cause nausea in some folks. Heave you had ON or a positive VEP?
Ladies, thank you for the input--it helps just to know I'm not the only one and this is not my imagination. (I mean, I *knew* it couldn't be, but I sometimes doubt myself anyhow...)
texasgirl, here's wishing both of us some answers ASAP.
Wiggles, I'm so sorry for the interruption to your career. How devastating. I hope you'll experience improvement and perhaps be able to resume teaching someday, if that is something you want to do. Your comment made me think twice about auditory input--yes, I have trouble there to. Two people talking to me at once feels like someone dragging fingernails across a chalkboard. I used to be a decent multitasker; not so much these days!
Hi Bob, I haven't had a VEP test yet. I have had some pain with right eye movement, but only sometimes, and no particular visual changes. The neuro didn't detect anything when he looked at my eyes. So I'm guessing I haven't had ON. But I will ask about the VEP, thank you!
Well, you can't see most optic neuritis by a visual exam of the eye.
Don't have a clear answer on this one in terms of myself, but yes, I did experience that early on with problems with dizziness/vertigo and balance. It is fairly common to experience what you describe with these sx and often times those questions are asked or included in describing overall sx related to vestibular disorders.
The whole balance system is so highly complex and brings into play a lot of other functions. Vision is one and orientation is another, just to name a few.
Bob hit it on the head for me with bright lights, and long rows or shelves...height of shelves also came into play.
I do not have a vestibular disorder, so it is happening somewhere else in my brain.
Bottom line is that what you experienced in not unusual. Just another thing to add to your symptoms list!
I wasn't sure if what I experienced was part of a seizure. I was at the casino with my husband. It was the first time I had gone out in a long time since all of my surgeries.
I had gone into the bathroom, and then actually got lost coming out. LOL LOL
I couldn't find the door, and I walked into a long mirror. I was so embarrassed, I pretended to look in the mirror to fix my hair or something.
When I finally found my way out, I grabbed onto my husband and told him how disoriented I feel in such a large place. I still get that way even in a grocery store. I do not like going into large spaces, and the noise level drives me crazy
I totally relate to what you are feeling, and I am undx'd
I believe this problem to be related to information processing - specifically that information that tells us where we are both in space and in relation to stationary objects and to objects in motion.
I first learned about this problem - and read a lot about it - when I was first felled by severe vertigo. A whole army of systems are required to give us good information to process about the smooth, automatic knowledge of where we are in space, where down is, how fast we are are moving and in which direction. All of this processing goes on automatically behind the scenes in the brainstem, cerebellum, and gray matter.
The back up system for the subconscious balance, movement, position system is the eyes. You can think of this as suddenly a whole group of functions that used to be handled by a computer's CPU is suddenly thrown onto the visual system - the RAM. When the visual system now has to supply a large amount of data about our position, our movement and our balance. It already is feeding info to the brain about the horizon and what vertical is. It alo feeds the data about how objects are moving around us and how fast they approach. Using the eyes is not so automatic. In fact it falls more under the voluntary than the inate. That's why visual overload makes us so fatigued and some people nauseated.
Using the eyes to compensate for missing spatial and velocity data is like having an entire complex program run just in RAM. It bogs down the system and makes everything stand in line to be processed.
When any of these functions is knocked out of whack as in vertigo, numbness, or visual deficits, we may feel dizzy, may feel we are moving when we aren't, which brings feelings of nausea, or like things seem unreal. We misjudge both our own position and movements, but the position and movements of things around us. Our ability to handle things that used to be absolutely automatic is literally overwhelmed.
So conditions like vertigo, loss of visual information, loss of position sense or proprioception, gravity sensors can make us uneasy. The worst situations are those that are "visually busy" like large stores where there is a constant, changing array of bright eye-catching objects along with many other people moving at us in now-unpredictable ways. One situation that I cannot tolerate AT ALL is being on the sidewalk when the light rail rolls by a foot or so from the curb. It will consistently throw me off my feet or make me feel like I am falling into it so that I compensate by throwing myself away.
There is sometimes another factor. Large stores are lit by huge fluorescent lights. These lights often are the cheap ones with a slow refresh or flicker rate and that is perceived subliminally and sometimes consdiously. This adds to the mental confusion, often a sense of fear or unease and nausea, and the ultimate mental fatigue we feel in them. Different stores use different kinds of lighting and it is not unusual to note that we do better in some stores over another. I have a friend with Meniere's disease who can tolerate one grocery store (Albertsons) but gets sick quickly in Safeway.
What you are all describing is well-known and can have many causes. However, I have found that too few docs are aware of the sensation and think your description sounds looney. They will almost always jump to the "anxiety" card.
There are some things we can do to help ourselves in these situations (in the stores - not with the dododocs). One is make sure we have a cart or walker to help steady us in space. We can go to the stores when there will be fewest people moving around there. We can be given permission to shoot any loose children running around. Many people wear billed caps pulled down low to keep the visual input to a minimum, looking upward only when we need to. This also helps if the fluorescent flicker is a problem. We should go when we are least tired. Another technique is to wear slightly colored sunglasses to keep the visual info to a minimum.
Just one thought on this phenomenon.
For those of you with this problem, it might be a good idea to see a vestibular specialist - also known as a neuro-otologist to see of that area is damaged. There is a test, called Computerized Posturography (using a moving floor and independently moving walls) that can analyze our ability to compensate for shortcomings in our perception) A VENG can also give info about how well we cope with moving objects in our line of vision.
ON-AND-ON - I guess that what I am getting to is that we are missing some vital information or we are missing the ability to process all the info that we take in. This is a situation of neurologic deficit, but can be from a variety of problems.
I definately grab a cart to walk with when in a store. My legs have not been the problem, its more of that confused feeling and running things over. I have to wear sunglasses alot, and the glasses I wear for indoors are tinted slightly, to reduce some of the glare.. Flourescent ligts are the worst. TOO BRIGHT!! I feel like a gremlin yelling BRIGHT LIGHT, BRIGHT LIGHT!!
I would love to hear more about this particular subject.
I actually considered it just part of my eye issues or "seizure" problem.. I have too many things to think it is that I am just naive to alot of things it could be!!
If you know what I mean!! LOL
Quix, you are so right. Doctors seem to make us seem like we are looney tunes all to often. I have the same problem, among lots of others, but this one I know from
experience is scarey.
My thoughts are with you, and I pray for an answer that will help you. I use a cane for the balance issue. I feel like the times that I stop the world just keeps on going, and on escalators and such, it is particularly scarey. So, maybe give the cane a try.
It is not the most sexy thing to carry and use, as I felt like a bit of an OLD PERSON, but my hubby said...* I think it is so much better than a cast, or having to visit you in hopsital* so, I use the cane. LOL
Good luck, and best wishes...
I you don't want to feel old, and a cane is not your style, try hiking poles (balance poles.) They are very adjustable and about $30 a pair at your local sporting goods store. They also have stras and collapse down. I have even brought the on the airlines when I travel for work.
I have not needed them much (fingers crossed and knocking on wood.)