Does anyone else get bothered by things like aisles at the supermarkets or an event at a church or arena where there are lines of chairs and people moving about? I've noticed recently that those type of situations make me feel very off balance even though I can tell nothing is really moving. (sorry if this is a repeat question...I can't find this referenced in other threads)

YES! I thought I was the only one! I was at the supermarket looking in the aisles and I started feeling off balanced after I had felt completely fine the entire day. Once I left the store I still felt a little off for a few minutes, but it slowly went away.

i cannot stand supermarkets, and almost always get dizzy and lightheaded while there. i have been looking for answers as to why this is; i thought up until now it was part of my fibromyalgia. it must be the meniere's.

Yes! I do completely... another one which I experienced was a couple of weeks ago, I was sitting on a train & looked down the train and could see both windows (obviously we were moving) and it feld VERY VERY strange, like I was still & the world was moving or something. However if I sit on a train & look out of the one window as we are wizzing by it's fine. Stange eh!?

Weird. I wonder why that happens. I guess it's all part of this inner ear junk.

Yep get all that too...horrible. Cant stand anything moving...Hugs to all xxx

Im the same way. I think someone on an earlier post said something like the aisles and products are even more for our brains to process so it adds or makes us dizzy.

I wonder if that is something that time and or VRT can help get rid of or if it's more like something that will stick around.

Hi,

Just add me to the list here, I get the same in super markets, I dont like it much and do my best to ignore it. I think the reason its worse in there is the lighting (very dazy and flueorescent) and the fact that we are moving our head all about looking through the aisles combined with walking. No wonder to me we feel rough. I think that this does improve with time, thats my hope any ways. Now a days that some times I feel okay and others a little off. But in the beginning (2 years ago) I would be really bad, in fact during decomp last year shopping was a no no. I was mega spaced out, fainty and weird and majorly bouncing under feet. Now I go shopping and dont really think/worry about it.

Ilia xx

Does anyone else get bothered by things like aisles at the supermarkets or an event at a church or arena where there are lines of chairs and people moving about? I've noticed recently that those type of situations make me feel very off balance even though I can tell nothing is really moving. (sorry if this is a repeat question...I can't find this referenced in other threads)

Hi

If you go here:

(preapproved by Mod1)

"SENSORY CONFLICT AND OTHER CAUSES OF DIZZINESS: ETIOLOGY, DIFFERENTIAL DIAGNOSIS, AND MANAGEMENT"

Pacific University College of Optometry

http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html

And if you scroll down to:

..."Visual System Problems"....

It is very well laid out----basically---during evolution---a peripheral vision capability developed(along with the others, i.e.,central, etc.---it was developed so that---bad things---could not sneak up on you and eat you up---it a capability in both your eyes---and it is always active---feeding info to the brain--even with your eyes focused on an object directly ahead, etc---it is controlled by the vestibular system---when that is on the "blink"---right or left---a different peripheral visual scene is seen by each eye---and that is bad!----but like I said---it is all there---and worth the "read"

:cool:

Subs, I don't know what we'd do without you here. Will this symptom improve with VRT? My second neurotologist is still not sure of my diagnosis, but I suggested VRT and he said that would be fine. I start on Wednesday and am a bit worried it will make me worse, especially since no one's still quite sure what is really wrong.

Subs, I don't know what we'd do without you here. Will this symptom improve with VRT? My second neurotologist is still not sure of my diagnosis, but I suggested VRT and he said that would be fine. I start on Wednesday and am a bit worried it will make me worse, especially since no one's still quite sure what is really wrong.

What does he/she think it is??...and why?...and why are they not sure??

And what test have been done?

:cool:

I have 2 he's that I have seen. 1 is actually on the list of Medical and Scientific Advisors to VEDA here in the U.S. He was the first one I saw back in March. I had Audiogram, ENG, ECoG(I just found that out today) and a tympanogram (I believe...the one where they messure the pressure in the inner ear). These all tested normal. I also had an MRI done and a CT scan of the ear area. The neurotologist said he wasn't sure what was going on, but something was definitely wrong because I was showing nastygmus in my left eye with lateral head movements.

He gave me Diamox at 500mg a day and said it would take about a month to notice the effects. I noticed some slight improvements, but the side effects were causing me to lose more weight. Then I started to get changes in symptoms (quick bursts of vertigo with head movements). This worried me because my inital symptoms were a feeling of falling to the left that progressed into a rocking. I tried to go off the Diamox, but the rocking got real severe. I went back to see him at the end of April and he tested to see if it was ear crytals (he put my head in varying positions and then applied vibrations to the side of my head). That produced no changes he could see. His diagnosis was that I had enlarged cochlear aqueducts. He said the only thing that could be done would be to increase the Diamox to reduce the perilymph flow. He sent me to a second Neurotologist at Ohio State for a second opinion.

I saw this second doctor in early June and he said he disagreed with the first doc. He said that enlarged cochlear aqueducts would have been with me all my life and he couldn't see how they would suddenly start producing symptoms one night at the age of 30. He viewed the CT and said he could see what the first doc was looking at, but he didn't think they were outside the range of normality. Upon viewing my MRI, he said it looked like I had a vascular loop (blood vessel) around my vestibular nerve that was probably causing my rocking and off balance sensation. He wanted me to increase the diamox to decrease cranial pressure on the nerve to see if it worked.

After a month I noticed some improvement in the rocking and then all of the sudden the spinning started. I had an attack last weekend that lasted 2 hours. Icalled the doc immediately and spoke to him for about a half hour about what could be going on cause I didn't think the vascualr loop would be causing this. He agreed and thought it may be Meniere's, but he told me there's no way to prove it unless I come into his office during an attack.

That's pretty much where I am now. He thinks I may have a couple of things going on, but can't confirm any of them. I suggested VRT because I get real off balance when I look around and in brightly lit or dark places. I have no idea what's going on, but I'm anxious to do anything to get back on the right track. Unfortunately, since I don't no what's wrong I'm afraid I may be making the wrong moves. I'm not sure what other tests I can have done, but all signs seem to point to something more like what Emsy and Ilia have than anything related to a vascular loop.

Sorry for the long posts, but that's my history. :rolleyes:

I have 2 he's that I have seen. 1 is actually on the list of Medical and Scientific Advisors to VEDA here in the U.S. He was the first one I saw back in March. I had Audiogram, ENG, ECoG(I just found that out today) and a tympanogram (I believe...the one where they messure the pressure in the inner ear). These all tested normal. I also had an MRI done and a CT scan of the ear area. The neurotologist said he wasn't sure what was going on, but something was definitely wrong because I was showing nastygmus in my left eye with lateral head movements.

He gave me Diamox at 500mg a day and said it would take about a month to notice the effects. I noticed some slight improvements, but the side effects were causing me to lose more weight. Then I started to get changes in symptoms (quick bursts of vertigo with head movements). This worried me because my inital symptoms were a feeling of falling to the left that progressed into a rocking. I tried to go off the Diamox, but the rocking got real severe. I went back to see him at the end of April and he tested to see if it was ear crytals (he put my head in varying positions and then applied vibrations to the side of my head). That produced no changes he could see. His diagnosis was that I had enlarged cochlear aqueducts. He said the only thing that could be done would be to increase the Diamox to reduce the perilymph flow. He sent me to a second Neurotologist at Ohio State for a second opinion.

I saw this second doctor in early June and he said he disagreed with the first doc. He said that enlarged cochlear aqueducts would have been with me all my life and he couldn't see how they would suddenly start producing symptoms one night at the age of 30. He viewed the CT and said he could see what the first doc was looking at, but he didn't think they were outside the range of normality. Upon viewing my MRI, he said it looked like I had a vascular loop (blood vessel) around my vestibular nerve that was probably causing my rocking and off balance sensation. He wanted me to increase the diamox to decrease cranial pressure on the nerve to see if it worked.

After a month I noticed some improvement in the rocking and then all of the sudden the spinning started. I had an attack last weekend that lasted 2 hours. Icalled the doc immediately and spoke to him for about a half hour about what could be going on cause I didn't think the vascualr loop would be causing this. He agreed and thought it may be Meniere's, but he told me there's no way to prove it unless I come into his office during an attack.

That's pretty much where I am now. He thinks I may have a couple of things going on, but can't confirm any of them. I suggested VRT because I get real off balance when I look around and in brightly lit or dark places. I have no idea what's going on, but I'm anxious to do anything to get back on the right track. Unfortunately, since I don't no what's wrong I'm afraid I may be making the wrong moves. I'm not sure what other tests I can have done, but all signs seem to point to something more like what Emsy and Ilia have than anything related to a vascular loop.

Sorry for the long posts, but that's my history. :rolleyes:

Ok---got it---remember now---when you first posted---thought the "vascular loop" was kind unusual---I suspect the probability of that is kind of remote---and why now---at 30----think the:

...."something was definitely wrong because I was showing nastygmus in my left eye with lateral head movements".....

comment prob true---they just don't know or have the clinical experience to figure out what---most of the Dx in this area---because of the indirect testing---is highest probability Dx's----for the long lasting/tough cases---takes---a unique combo of involved research/clinical/interest kind of Neuro-oto to figure it out---one who sees a lot of people does a lot of research and has an intense interest in this area---those are usually found at the Center of Excellence.....Northwestern, Univ of Penn, etc...as I said in respect to your first post...wayback when......

..."may be Meniere's, but he told me there's no way to prove it unless I come into his office during an attack. "....

Don't think that is accurate---plus----it is kind of an over Dx'd condition---that sort of comes out of the "I don't have a clue bin"---guess the bottom line would be/is---they have run a lot of tests but---don't know/can't figure it out---unfortunately not unusual---lot of people get well on their own---never get rid of it---or eventually make their way to one of the Center of Excellence---who can usually---figure it out---with a high probability---but even there---they can guess wrong---this thing is a real piece of work!

..."signs seem to point to something more like what Emsy and Ilia have than anything related to a vascular loop.".....

Tend to agree with that as the most likely---but it would be nice if you get to someone like Ilia saw to get a conformation---and a get well/back on track plan......


:cool:

Subs, would Dr. Hain fall into that category at Northwestern? Chicago is about a 6 hour drive. How would I do follow up from such a distance from home?

The thing that has me worried about Meniere's is the 2 hour spell I had last weekend. I can't think of another condition that would cause such a case.

Subs, would Dr. Hain fall into that category at Northwestern? Chicago is about a 6 hour drive. How would I do follow up from such a distance from home?

The thing that has me worried about Meniere's is the 2 hour spell I had last weekend. I can't think of another condition that would cause such a case.

Yep Meniere's can happen---but (NIH/Univ of Penn web sites)


...."Studies have shown that Meniere's disease affects about 200 out of 100,000 people (or in other words, 2/1000). This is roughly the same prevalence as multiple sclerosis (MS). The majority of people with Ménière's disease are over 40 years of age, with equal distribution between males and females.

Interestingly, the Framingham study found that 2/100 people believe they have Meniere's disease in the US, suggesting that there is considerable chance of misdiagnosis."........

Usually accompanied by low freq hearing loss/tinnitus in between attacks of vertigo---which can be separated by years...."2 hour spell"..
would make more sense if you had the first two....

...."6 hour drive. How would I do follow up"...

Why not contact them and ask??

:cool:

Subs,
By the way, what exactly is a Center of Exceelence? How did you find them? Is there a list of them? Do they offer different services than most doctors offices?

Subs,
By the way, what exactly is a Center of Exceelence? How did you find them? Is there a list of them? Do they offer different services than most doctors offices?

If you mean for vestibular/hearing they are those that are acknowledged by the medical community/peers in a specialized medical area as the "best of the breed"----they normally make significant contributions of knowledge(research/clinical) in these specialized medical areas---in many respects,i.e., training,research,etc---they are the locations where other Dr's go for training,refresher,etc.---if you search the web on the Dr's names that you see in research articles--in this medical area---that you can find on the NIH(govt) web sites---you will see where the are located---usually at Univ Balance Centers.

If you had to pick a hallmark that sets them apart---it is---their medical team approach---to---in this case vestibular problems---which is---Based on the hard-earned lessons of experience---so when you go---you go and/to see the entire team---here is the Univ of Penn team/center:

http://pennhealth.com/hup/balance/

Then click on "About our Team"

Note that you would have to see all the medical disciplines listed(Psychiatry,Neurology,Neurotology, etc.)---as well as---completing an extensive questionnaire a copy of which is posted(PDF Format) under "Appointments and Procedures"(click on it)---the last person you see is Dr Shepard---the Director--who designed many of the VRT exercises in use today----it takes about two to three days---to get through the tests/process---but when it is over---you will have an answer---might not like it--but you will get it---they are expensive---but medical insurance---covers it in most cases---depending on your/the type.

Something to think about!

:cool:

That sounds like exactly what I am looking for...especially if I don't get any further answers from here. So basically I just would call them to set up a visit and then plan on spending a few days in Philly. I want them to run as many tests as possible because I need an answer...otherwise, how can I fight what I don't know. Any further info you can provide on Penn please let me know. Thanks for all the help and info Subs!

That sounds like exactly what I am looking for...especially if I don't get any further answers from here. So basically I just would call them to set up a visit and then plan on spending a few days in Philly. I want them to run as many tests as possible because I need an answer...otherwise, how can I fight what I don't know. Any further info you can provide on Penn please let me know. Thanks for all the help and info Subs!

Ok--no prob---but Thought Northwestern Univ--was closer---they use the same team/test approach---as Phila******a---between them---its a toss up---they are thought of---as just about equal---with Northwestern--because of Dr/Prof Hain---little ahead of Univ of Penn---some say---might want to talk to them both---see who you think---could help you---the most.

:cool:

I see. I assume all Centers of Excellence use the team approach. Northwestern would be slightly closer and if they offer the same type of total evaluation then I would consider going there. I've communicated with Dr. Hain via email before. I'll see what I can do. Thanks again Subs.