Disoriented, queasy in stores/busy places--is this a cognitive symptom?

[violetopia]

Since my "neurological event" I've had some problems with confusion, and yesterday I realized this often occurs at the grocery store or other places where there's a great deal of visual information to process. If I'm moving through the store and trying to find things at the same time--like glancing down the aisles--I quickly feel sort of seasick and overwhelmed. It's hard to read the labels and discern what's where. Then I get rather panicky, which probably makes it worse.

I'm finding that to navigate a store I need to keep my eyes down while moving, and look up at things only after I've stopped. Otherwise this unsteadiness sets in and I feel as if I'm going to lose my balance or freak out or both.

This strikes me as a cognitive problem, maybe, related to visual information processing? Or maybe it's something else. Can anyone tell me if there's a name for this and if others have experienced it? I don't have a dx yet, so I don't know whether or how this fits in with my other symptoms. Thanks for any input. Wishing all of you wellness and peace.

Violet

[Apass001]

If you take gabapentin /neurotin it May be causing this.

[iasku]

I've had this syndrome for over 40 years.  It is some type of information processing syndrome.   Without getting too much into an incredibly long story, what helped me medication-wise was desipramine.  I think it works as a norepinephrine promoter in this case, not as an antidepressant.  It didn't make me groggy, rather it is activating, sort of speedy.

[Mrswag58]

I have been suffering from vertigo/dizzyness for 2 and half years mine first came on as brain fog then led to migrines in my body (vestiublar migrine) I'm on epilim 500 1500mg a day also 10mg amytripline & just started a calcium channel blocker at night. I have had success with migrines being less frequently but the off balance sensation is everyday I suffer looking at items on shelfs and feel asif sinking into floors in some stores. Flurocesent lighting is a problem. But nightclub lighting I seem to be fine with. I regularly go the gym and have cases of the dizziness and off balance feeling even when the gmy lights are off. I've had mri scans for brain which clear tested for mini stroke clear and clear all tests cognitive. I went to have my ears checked all clear though ido suffer from tinnitus in the left the ent did think because of the redness I had glomus tumour which wasn't the case. I'm booked in to go the liecester balance centre on London Road this month. I'm hoping they have answers or help. Hope everyone stays strong.

[ronruns]

Correction:
Patients with multiple sclerosis, infection or trauma recovered about 60-70% of the time. Recovery was less likely if the lesion causing the INO was visible (my case).
Ref.: Canadian Neuro-ophtalmology Group
http://www.neuroophthalmology.ca/textbook/disorders-of-eye-movements/v-prenuclear-disorders-brainstem/ii-internuclear-ophthalmoplegia-ino

[HVAC]

Do you have any damage to your brain stem? That could account for it or double vision.
Alex

[ronruns]

Forgot to mention that my MS first appeared as a vision problem: blurry/double vision. This is a very common symptom of MS caused by Internuclear ophthalmoplegia (INO).

My MRIs show several lesions, but my neurologist tells me that a central part of the brain he pointed to is responsible for keeping both left and right eyes aligned and had suffered demyelenation. He noticed some residual INO at my last visit. I also read that 70% of people that have INO because of MS have some of their symptoms remain when in remission.

[ronruns]

Hi,

Was diagnosed with MS a bit over two years ago. I get exactly the symptoms you described: dizziness, blurry/tunnel vision, nausea, etc, when I walk in grocery stores or any department store (e.g. Ikea). It's interesting that some seem to trigger the effect more than others. For example, if I go to the warehouse store nearby, Costco, it's milder. I'm thinking the lighting might have to do with it (no fluorescent lights) and the isles are not designed as in supermarkets. The articles usually are at ground level so there's less noise at laterally at eye level.

Another things that triggers it is walking trails with trees all around, roots and rocks to avoid on the ground. Not very practical in that situation. If I get to a wider and more even path, things get better. So it's not uniquely fluorescent lighting but how visually busy the surroundings are.

Now, for tricks that help avoid the blurry vision, nausea, etc, I haven't found any. If anyone has found something that works, please let me know.

[Debz5]

You most likely have a semi-permanent disorder called Vestibular Neuritis. It is a disorder that affects the nerve of the inner ear called the vestibulocochlear nerve. This nerve sends balance and head position information from the inner ear to the brain.

If you notice that your symptoms worsen after a common cold or the flu, it's most likely due to the varicella virus (related to the chickenpox you had as a child) lying dormant deep in your your inner ear. When you get a virus such as a cold or the flu, the varicella in your inner ear WAKES UP within a couple of weeks AFTER your cold or flu is gone. This wreaks havoc with your BALANCE system and causes numerous problems some of which include dizziness, confusion, panic/fear, sensitivity to SOUND, BRIGHT LIGHTS (especially FLUORESCENT LIGHTS), HIGH PITCHED SOUNDS, CROWDS of PEOPLE, A LOT of MOVEMENT (e.g. heavy traffic wizzing by), etc.

There is no cure, and your symptoms will come and go for the rest of your life. You can control your symptoms with MECLIZINE HCI 25 mg daily, and VALTREX (valaciclovir) 500 mg daily to control the varicella in your inner ear when you have a severe bout or feel it coming on. TRUST ME, NO OTHER DRUGS WILL WORK AS WELL AS THESE TWO! I have been dealing with this for more than 25 years, and these two drugs are the only ones (as of January 2016) which will help you tremendously!

[Debz5]

You most likely have a semi-permanent disorder called Vestibular Neuritis. It is a disorder that affects the nerve of the inner ear called the vestibulocochlear nerve. This nerve sends balance and head position information from the inner ear to the brain.

If you notice that your symptoms worsen after a common cold or the flu, it's most likely due to the varicella virus (related to the chickenpox you had as a child) lying dormant deep in your your inner ear. When you get a virus such as a cold or the flu, the varicella in your inner ear WAKES UP within a couple of weeks AFTER your cold or flu is gone. This wreaks havoc with your BALANCE system and causes numerous problems some of which include dizziness, confusion, panic/fear, sensitivity to SOUND, BRIGHT LIGHTS (especially FLUORESCENT LIGHTS), HIGH PITCHED SOUNDS, CROWDS of PEOPLE, A LOT of MOVEMENT (e.g. heavy traffic wizzing by), etc.

There is no cure, and your symptoms will come and go for the rest of your life. You can control your symptoms with MECLIZINE HCI 25 mg daily, and VALTREX (valaciclovir) 500 mg daily to control the varicella in your inner ear when you have a severe bout or feel it coming on. TRUST ME, NO OTHER DRUGS WILL WORK AS WELL AS THESE TWO! I have been dealing with this for more than 25 years, and these two drugs are the only ones (as of January 2016) which will help you tremendously!

[Debz5]

You most likely have a semi-permanent disorder called Vestibular Neuritis. It is a disorder that affects the nerve of the inner ear called the vestibulocochlear nerve. This nerve sends balance and head position information from the inner ear to the brain.

If you notice that your symptoms worsen after a common cold or the flu, it's most likely due to the varicella virus (related to the chickenpox you had as a child) lying dormant deep in your your inner ear. When you get a virus such as a cold or the flu, the varicella in your inner ear WAKES UP within a couple of weeks AFTER your cold or flu is gone. This wreaks havoc with your BALANCE system and causes numerous problems some of which include dizziness, confusion, panic/fear, sensitivity to SOUND, BRIGHT LIGHTS (especially FLUORESCENT LIGHTS), HIGH PITCHED SOUNDS, CROWDS of PEOPLE, A LOT of MOVEMENT (e.g. heavy traffic wizzing by), etc.

There is no cure, and your symptoms will come and go for the rest of your life. You can control your symptoms with MECLIZINE HCI 25 mg daily, and VALTREX (valaciclovir) 500 mg daily to control the varicella in your inner ear when you have a severe bout or feel it coming on. TRUST ME, NO OTHER DRUGS WILL WORK AS WELL AS THESE TWO! I have been dealing with this for more than 25 years, and these two drugs are the only ones (as of January 2016) which will help you tremendously!

[violetopia]

Wow! I'm grateful to all of you for giving precious energy and time to this thread. It's been very enlightening.

Quix, I know you get this a lot, but your generosity with your expertise is extraordinary, as is your wry humor.

AnonnyMouse, your description of too much noise is sooooo familiar to me. No children in my home, but that explosion thing is just what I feel even for something as minor as the TV being turned up too loud. I have to work hard to keep from getting snarly--the situation doesn't merit snarls, it's just that the discomfort is so intense!

Thanks again, everyone. Be well.

Violet

[ANonnyMouse73]

I get something quite similar when surrounded by either too much activity (lights, motion, visual clutter) or too many different noises. In shops with lots of overhead lights I feel nauseas and mentally off-balance.

When faced with a lot of noise at once I get very agitated and feel like I'm under attack, which is awful for me because I have a new baby and a toddler and I have a lot of trouble staying calm and rational if both of them are making noise and the phone rings or someone tries to ask me something at the same time. My brain just totally shuts down and I feel like I need to hide in a quiet dark corner somewhere or I'll explode. As soon as the noises goes away, I calm down instantly and can think again.

I'm not sure if this is related to MS or just a weird thing I get that is unrelated, but either way it's awful!

[JemmAus]

I've got a couple of sexy canes (as sexy as a cane could be)

Two from here: Poppies, and I've ordered Walkabout.

http://www.stickandcaneshop.co.uk/acatalog/Switch_Sticks_.html

They are not at all "old" in design and colour!

[JemmAus]

I'm wondering how many have been told this is "migraine associated vertigo". I know they told me that by neurologists in the past. . Now I am so confused - I DO get atypical migraines, but I also have a lesion on the cerebellum which my current neuro says gives me this disequilibrium problem.

My problem is, I never know if it's my MS causing the issue, or a migraine, or both!

Either way, it's b l o o d y annoying.

[frowngirl]

Thanks Quix,
This makes a great deal of sense. I can no longer do any shopping...just looking at the colored clothes hanging on the racks make me very disoriented, lightheaded, nauseated, unstable feeling of needing to lay down on the floor. So I dont go shopping for food or clothing. My darling husband does it all. Also if I do go I get on one of those motorized scooters and get in and get out fast.
Also when there is a football game on TV I have to leave the room because its so over stimulating for me. My brain can not break it down and will actually make me feel confused and give a sense of being ill.

Well just my two cents as well...we are all in the same boat it seems.

Dawn

[wiggles94]

Thanks so much Quix.  I find your posts so informative and helpful.  The time you take to post the info is greatly appreciated!  Knowledge is power.
Best to all!

[COBOB]

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.)

Bob

[candy158]

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...

Candy

[drsdonthelp]

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

Pamela

[Quixotic1]

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.

Quix

[drsdonthelp]

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

Pamela

[Audrey_M]

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!

Be well,

Audrey

[suspiciouscombo]

Bent to COBOB's answer---this is the best one yet and something I can relate entirely!

[COBOB]

Well, you can't see most optic neuritis by a visual exam of the eye.

Bob

[violetopia]

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!

[violetopia]

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!