Visual & proprioceptive disturbances

I sometimes have visual disturbances such as a slight dizzy feeling when I move my eyes and a strange feeling almost like my vision is actually lagging a bit behind my actual eye movement. I also have a problem riding elevators. When I get out I immediately have to sit because it feels as if the floor is jumping underneath me! Does anyone have either of these two issues? If so, have you been given a physiological explanation?

oh yes and i thought it was only in my head or i was exagerating or i just ignored it as much as possible. Sometimes i felt as though i was getting off of a roller coaster..nope surgery took care of that

check out my post from the over day surgery nov 22 feel great

Hi Wadams,

Yes! Mine started off this way (and then went to full vertigo as time went on) I have told this to so many doctors. They looked at me like I was crazy..... :(

I would say...... it was like as if my eyes weren't working together.

I am sorry you are experiencing this too :(

It was worse in elevators. (especially if there is mirrors or any reflective surface). Wasn't sure if it was the motion, vibration, lighting, or what. I sat and closed my eyes in the elevator when I had to ride on them and had the same feeling ... like it does in the elevator when it comes to a stop.

Saw 2 eye drs, ENT, and a Neurologist.

I had 2 MRI's with and with out contrast 1 year apart.

No lesions, no tumors, no MS.

Had VNG and hearing tests.....only hit positive on the "head shake" test. They had to do it for me (I knew movement of my head side to side always triggered my dizzy spells and avoided it at all costs). Eyes were bouncing all over the place.

I got the most info from my physical therapist. She said the muscles and nerves on my left side were weaker than the right. My left eye doesn't always track properly but doesn't stay to the one side. Did eye patch, vestibular, neuro therapy for 8 months and it helped some but continued to lag (worse when tired) She was just as frustrated as I was.

I also have blurred and double vision and a few instances where the right side went up on a angle.

Fast forward to my ES diagnosis.

I don't now how it relates exactly.

I did ask Dr. Samji about the issue with the me being in the car and only able to tolerate it for 10 to 15 mins at a time and then needing to get out. (I had to have my eyes closed)

He said that the bone (styloid) is pressing on the nerve (didn't say which one) and the motion is rubbing it...... aggravating it.

I had the let side removed. (10/28/13). Vision/ motion sensitivity was even worse during the first week. Second week vision got even sharper then before surgery. Felt like I got new glasses or contacts took nearly two weeks for me to adjust and not feel nauseous.

Still waiting for the swelling to go down all the way and the nerves to heal and hoping it will resolve.

Sorry so long but I have the same questions.

Take care,

Sheila

So jealous and still hopeful! If mine doesn't resolve once the swelling goes down all the way and the nerves heal. I am going for the other side. Thanks for posting :)


neckpainC said:

oh yes and i thought it was only in my head or i was exagerating or i just ignored it as much as possible. Sometimes i felt as though i was getting off of a roller coaster..nope surgery took care of that

check out my post from the over day surgery nov 22 feel great

your visits to the eye doctors didn't show any problems? even with blurred vision? were your vision tests normal?

Lailei (Sheila) said:

Hi Wadams,

Yes! Mine started off this way (and then went to full vertigo as time went on) I have told this to so many doctors. They looked at me like I was crazy..... :(

I would say...... it was like as if my eyes weren't working together.

I am sorry you are experiencing this too :(

It was worse in elevators. (especially if there is mirrors or any reflective surface). Wasn't sure if it was the motion, vibration, lighting, or what. I sat and closed my eyes in the elevator when I had to ride on them and had the same feeling ... like it does in the elevator when it comes to a stop.

Saw 2 eye drs, ENT, and a Neurologist.

I had 2 MRI's with and with out contrast 1 year apart.

No lesions, no tumors, no MS.

Had VNG and hearing tests.....only hit positive on the "head shake" test. They had to do it for me (I knew movement of my head side to side always triggered my dizzy spells and avoided it at all costs). Eyes were bouncing all over the place.

I got the most info from my physical therapist. She said the muscles and nerves on my left side were weaker than the right. My left eye doesn't always track properly but doesn't stay to the one side. Did eye patch, vestibular, neuro therapy for 8 months and it helped some but continued to lag (worse when tired) She was just as frustrated as I was.

I also have blurred and double vision and a few instances where the right side went up on a angle.

Fast forward to my ES diagnosis.

I don't now how it relates exactly.

I did ask Dr. Samji about the issue with the me being in the car and only able to tolerate it for 10 to 15 mins at a time and then needing to get out. (I had to have my eyes closed)

He said that the bone (styloid) is pressing on the nerve (didn't say which one) and the motion is rubbing it...... aggravating it.

I had the let side removed. (10/28/13). Vision/ motion sensitivity was even worse during the first week. Second week vision got even sharper then before surgery. Felt like I got new glasses or contacts took nearly two weeks for me to adjust and not feel nauseous.

Still waiting for the swelling to go down all the way and the nerves to heal and hoping it will resolve.

Sorry so long but I have the same questions.

Take care,

Sheila

Nope no problems. And yes normal for my usual glasses and contacts and with dilated.

The blurred and double vision would come and go. Sometimes in only the one eye. Wish I could have made it to the eye dr. when it was in full force.

That has also been so crazy making with this whole thing. My regular doctor saw the nystagmus too but not on every visit. She checks it every time she sees me. The times she has picked it up doing the side to side and then down to the right real fast. Same office as physical therapy and they would go and get her if they triggered it

The surgeon also that my carotid was being compressed. I would feel like I was going to pass out when turning my head to either side. Came on faster going to the right. He said it was tethered more on the left.


wadams said:

your visits to the eye doctors didn't show any problems? even with blurred vision? were your vision tests normal?

Lailei (Sheila) said:

Hi Wadams,

Yes! Mine started off this way (and then went to full vertigo as time went on) I have told this to so many doctors. They looked at me like I was crazy..... :(

I would say...... it was like as if my eyes weren't working together.

I am sorry you are experiencing this too :(

It was worse in elevators. (especially if there is mirrors or any reflective surface). Wasn't sure if it was the motion, vibration, lighting, or what. I sat and closed my eyes in the elevator when I had to ride on them and had the same feeling ... like it does in the elevator when it comes to a stop.

Saw 2 eye drs, ENT, and a Neurologist.

I had 2 MRI's with and with out contrast 1 year apart.

No lesions, no tumors, no MS.

Had VNG and hearing tests.....only hit positive on the "head shake" test. They had to do it for me (I knew movement of my head side to side always triggered my dizzy spells and avoided it at all costs). Eyes were bouncing all over the place.

I got the most info from my physical therapist. She said the muscles and nerves on my left side were weaker than the right. My left eye doesn't always track properly but doesn't stay to the one side. Did eye patch, vestibular, neuro therapy for 8 months and it helped some but continued to lag (worse when tired) She was just as frustrated as I was.

I also have blurred and double vision and a few instances where the right side went up on a angle.

Fast forward to my ES diagnosis.

I don't now how it relates exactly.

I did ask Dr. Samji about the issue with the me being in the car and only able to tolerate it for 10 to 15 mins at a time and then needing to get out. (I had to have my eyes closed)

He said that the bone (styloid) is pressing on the nerve (didn't say which one) and the motion is rubbing it...... aggravating it.

I had the let side removed. (10/28/13). Vision/ motion sensitivity was even worse during the first week. Second week vision got even sharper then before surgery. Felt like I got new glasses or contacts took nearly two weeks for me to adjust and not feel nauseous.

Still waiting for the swelling to go down all the way and the nerves to heal and hoping it will resolve.

Sorry so long but I have the same questions.

Take care,

Sheila

http://www.npr.org/templates/story/story.php?storyId=103463398

About ten years ago, I was having vertigo or room was spinning. I went to an ENT that told me everyone has crystals in their inner ear. He put my head and different positions and triggered the vertigo. The ENT was able to put back the crystals in place. I never heard of such a thing, crystals? I think the styloid might of been aggravating the crystals at the time.

That was one of many (BPPV, Meniere's, Migraine associated vertigo) that I was told I had. The crystals one was the weirdest. When they did that test to me it triggered on the right side. I nearly threw up. I still do the Epley exercises although I am not sure they help.

Amy said:

http://www.npr.org/templates/story/story.php?storyId=103463398

About ten years ago, I was having vertigo or room was spinning. I went to an ENT that told me everyone has crystals in their inner ear. He put my head and different positions and triggered the vertigo. The ENT was able to put back the crystals in place. I never heard of such a thing, crystals? I think the styloid might of been aggravating the crystals at the time.

i had vision issues whenever I get an incident - its like i get image ghosting like lights and certain objects that I see on the right side of my eye will mask or ghost over on my left side. this usually only comes when I have the severe throbbing pain or pinching.

Hi. I am an occupational therapist with ES. When I didn’t know what was wrong I went back to the books and even went to a conference on Vestibular Rehabilitaiton(Therapy for equilibrium problems).

Anyways, there is a reflex between the inner ear to the muscles of the eyes, the vestibular ocular reflex. It allows us to stabilize an image on our retina when we are moving. Either pressure on the typmanic nerve or inflammation in the area of the nerve or inner ear probably messes this reflex up. When it is out of whack, there is nystagmus which is a quick back and forth movement of the eyes. It can be a little or full blown which causes vertigo, the horrible spinning sensation. I had both. It is no fun and I would never wish it on anyone. I am sorry you are experiencing this. I hope that this helps.



Polly.

This is SO helpful for me to read. My worst symptom is poor balance/disequilibrium. Did Vestibular Therapy 2x to no avail.

My prior misdiagnoses were Meneire's Disease and Migraine Associated Vertigo. Now I know it is from my Intracranial Hypertension, which is caused by the styloid compressing my internal jugular veins.

Yes, I also have the elevator thing.It is awful. Any motion in my surroundings can set me off. At PT, when he adjusts the height of the table, it is just like being on an elevator or escalator.

I have Intracranial hypertension from the styloid compressing my jugulars. I blame part of it on that.

There also seems to be a connection b/n ES and superior semicircular canal dehiscense. This would slso make a person susceptible to dizziness from loud sounds. Worth checking out if you have this symptom

I just wanted to update everyone and let you know a small thing im trying to do to ease the Eye issues is wear these computer glasses called Gunnar Optiks. I found that wearing them has defiantly cut back on my Eye fatigue and eye stress. I am on the computer all day and it makes a difference. No it has not eliminated the Visual double ghosting all together but it has help my eyes since they are Now a lot more susceptible to visual distortion..

Hi Wadams,

Again....... I am sorry you are experiencing this too!

So much of this information that was shared in this thread was very helpful. I shared the info with my Dr.

What Polly mentioned about the VOR is what my Dr. believes is going on in my case. Fingers crossed that the vestibular rehab exercises will help now that the left styloid has been removed.

I hope and pray that you find relief.

Take care,

Sheila

How are you feeling now? Have your symptoms subsided after you were styloid removal? I have all the same symptoms as you and I’m not sure what it’s from because I have multiple conditions. I also have nystagmus but it’s only really if I move my head fastz

@Casey52787,

@Lailei_Sheila may not answer because so many years have passed since she was here. I hope she does though.

Have you found a doctor to help you w/ ES yet? If not, there was a post yesterday that mentioned a doctor in your state who is on our list, but we don’t have any other posts about him. Apparently he is very experienced w/ ES & willing to help people who have it. Here’s a link to the post & below is the doctor’s contact info.

*Dr. Nathan Hales, 3903 Wiseman Blvd Ste 302, San Antonio, TX 78251, (210) 615-8332, https://sahealth.com/physicians/profile/Dr-Nathan-Hales-MD

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Isaiah, please note that the address you furnished for Dr. Hales is not correct. It should be:

5715 Rogers Rd Suite 128
San Antonio, TX 78251
210-249-4840

Their web site is sanantonioent.com .
Always be careful when using those “online directories” such as sahealth.com. They are frequently out of date. Best to use the doctor’s actual web site for that information. I posted a message on the forum about it, maybe you can edit the doctor’s list.

Thanks so much for all you do.
Ron

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I have updated it to the info you provided @Larisam. Thx so much for the correction!

Some doctors have more than one office but can be reached by contacting any of their offices, so I randomly chose one of the two. Obviously, I made the wrong choice. :crazy_face:

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I don’t know know if that’s his other office or not, it’s just a block away from his “main” office. Oh well, main thing is, we were able to help some people. Wish there were some way to increase awareness of this condition. There are SO MANY things that can cause most of the ES symptoms, most doctors, even well-meaning ones, are just clueless.
Ron

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