It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-04-2008, 10:05 PM   #1
Veteran
(male)
 
Join Date: Feb 2008
Location: USA
Posts: 352
Boslee2008 HB User
Objects moving in my vision, can't take it anymore!!!!

This 24/7 business of the entire world constantly glowing, shimmering, shaking, vibrating, moving, shifting, distorting, everything being slightly hazy,...I can't take it anymore!!! 8 months and that's it!!! I want out!!! Every freak'n day is the same from the second I open my eyes to the moment I go to sleep. Why is it that the doctors don't know what this symptom is??? If it weren't for this symptom, I would be 100%!! This shaking vision (along with some slight light sensitivity) is my ENTIRE problem!! If the world would stop moving, I would be fine!! If it is migraine, why is it that every migraine doctor I have spoken to has never heard of this?? They certainly know about migraine associated vertigo vs typical migraines, but even most people with MAV do NOT complain about the world constantly shifting and moving around. I can't understand it. I go to the eye doctors, neuro-opt, neurologists, and they test my eyes over and over and it's all perfect!! My VOR is perfectly intact. I track objects perfectly. But NOTHING is ever still. I swear to GOD, I am ready to put out a serious of UT videos on the net to try and get the word out about this crazy symptom and to see if any doctors know what the HECK this is!!! I just can't live with it anymore and I need it to stop. The visual distortions are giving me constant daily headaches and are completely distorting my world. What did I do to deserve this?? I just went to sleep one night, and woke up the next day. THAT IS ALL I DID!!!!! Every day, my world gets smaller and smaller because my limitations are getting greater and greater. I am so visually disabled that I can barely get through my morning without wanting to blow my head off!!!! There HAS TO BE AN ANSWER. THERE HAVE TO BE OTHERS SUFFERING WITH THIS WITH A CLEAR CUT DIAGNOSIS OF WHAT IS HAPPENING TO THEM AND THERE HAS TO BE A TREATMENT!!! So far, not a single migraine preventative has EVER touched this for anyone I have spoken to who has this. I am feeling hopeless. The "dizziness" is actually getting better. But with this visual symptom, I have NO HOPE of recovery. I CAN'T spend the rest of my life living like this day to day. I will lose my mind. I am starting today. Mystery Diagnosis, reaching out to TV, Internet, anywhere I can. I am only going to persue this as a symptom. Nobody is interested in hearing about "migraine". And to be honest, I do not believe that this symptom is associated with a migraine. This is something else. it HAS to be. I am starting to doubt this whole 24/7 migraine non-sense. Even people who have been suffering for 20-40 years with near daily migraines, have BREAKS in their symptoms. WE NEVER DO!!! Something is being missed, and with GOD AS MY WITTNESS, I AM GOING TO GET TO THE BOTTOM OF THIS CRAP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Rich

 
Sponsors Lightbulb
   
Old 09-05-2008, 07:31 AM   #2
Veteran
(female)
 
Join Date: Jul 2006
Location: KS USA
Posts: 377
cknmbbl HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Rich,
I so hear you. First I want you to know that I have the visual symptoms 24/7. It is horrible. ALL of my drs have heard of this before and say it is part of migraine. I also met someone about a year ago in PT who had the exact visual symptoms. She later was dx with a stroke. Although I wonder because they could never see it on an MRI. When I went to the neuro-opthomologist he mentioned a drug that he sometimes prescribed for the visual symptoms. He said it was 50/50 if it worked. He said he would send that info to my neuro. I haven't had my follow up, but I can let you know.
Trust me, I understand your frustration. I have said if I could just loose, either the visual issues or the balance issues I could live. I have also thought about those shows on TV. Whenever there is an episode that has any of my symptoms, I'm watching to see if I can gain any insight.
Rich, you have to keep faith. You do not get a choice, you have a family that loves and needs you. We will figure this out.

CK

 
Old 09-05-2008, 07:56 AM   #3
Senior Veteran
(female)
 
Join Date: Dec 2007
Location: new york, new york usa
Posts: 721
violet6 HB Userviolet6 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Hi, Rich--

I agree with CK...I have also heard others on this board say that the world shifts and moves and/or vibrates on the edges or is fuzzy--all with migraine issues. It makes sense that since migraine involves squeezing and dilating of the blood vessels that the ones going to the eyes could be (and often are!) affected. In fact, visual auras are one of the most common auras in migraine. Alice in Wonderland and all her weird sensations are supposed to be based on the author's migraine experiences. Others on this board, like Alice, have had the feeling of being bigger or smaller. I have felt as if my body were two separate halves--an unusual symptom, but also one of migraine. A relative of mine routinely sees the jagged lines/heiroglyphic type of writing appear before him...he has learned to just ride it out. Light flashes/etc.

I am thinking that if your dizziness is abating that perhaps that means the other symptoms will, too. It may just take time. Many on this board have been dealing with this stuff for years. Many people also take more than one med. You still have lots of options open to you.

What you are describing is suffering. This illness is very, very difficult to endure. But CK is right about that as well...we have families who love us and we have no choice but to try for their sakes, as well as our own.

Keep the faith, Rich! I do believe that the experts have a lot more to learn about what we are experiencing, but I also think that we can get significantly better with treatment and time.

Violet

 
Old 09-05-2008, 10:27 PM   #4
Veteran
(male)
 
Join Date: Feb 2008
Location: USA
Posts: 352
Boslee2008 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Thanks for the responses. I really just can't deal anymore. I keep asking myself why this shifting just won't stop, for even one second!!! I keep thinking something else MUST be wrong. BUT, my tests disprove this, so I say this out of anger. I did not have stroke, I have no other neurological problems, but on top of this, I am getting headaches every single day, and they are also limiting me severely. The dizziness/visual issues are bad enough, but can ALMOST be ignored if I could push through. But I can't push through with the headaches. Not a chance! It's on to more preventatives and more side-effects. This just unreal! But thanks for chimming in on my rant!

Rich

 
Old 09-06-2008, 05:06 PM   #5
Junior Member
(male)
 
Join Date: Mar 2008
Location: SPOKANE, WA, USA
Posts: 35
seigert HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Are you absolutely sure that you do not have a PLF (Perilymph Fistula)?

This is a hole/tear in your inner ear which WOULD cause 24/7 sympoms until it is surgically fixed or seals on it's own........which does not sound like it is happening.

Think back.......just before this started (maybe even a month or so) any flights, altititude changes, snorkeling, etc. which may have damaged your inner ear?

I agree with you .........You would get some kind of break from MAV, not from PLF.

Until it is fixed, you will continue to see these issues. Ask your doctor about exploratory surgery in your inner ear with a graft for repair.

Todd

 
Old 09-06-2008, 07:12 PM   #6
Veteran
(male)
 
Join Date: Feb 2008
Location: USA
Posts: 352
Boslee2008 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Thanks Todd. Had every inner test imaginable and have been checked for fistula more than once. The doctors say no way. They can never induce dizziness with their tests and a temporary mryngotomy did nothing for me. They say this would help a PLF. Also, each doc I saw said that nobody has ever complained about the world shifting 24/7 with PLF although dizziness was certainly a factor. Thanks anyway,

Rich

 
Old 09-06-2008, 08:16 PM   #7
Junior Member
(male)
 
Join Date: Mar 2008
Location: SPOKANE, WA, USA
Posts: 35
seigert HB User
Re: Objects moving in my vision, can't take it anymore!!!!

I (along with another fellow PLF'er) tested absolutely negative for PLF with every test they did.

The only confirmation was (essentially) exploratory surgery through the ear canal.

I had a fracture at the base of the oval window footplate.

The other person had a tiny hole in her oval window.

These will not show up on any test......CT, MRI, MRA, etc.

Also, fistula tests are quite subjective.

Think back. One month, two months or so before you felt rotten.......did ANYTHING happen that might have led to your inner ear damage?

Flight, air pressure changes, altitude changes, barometic pressure changes, blunt trauma.......anything?

Todd

 
Old 09-07-2008, 06:50 AM   #8
Senior Veteran
(female)
 
Join Date: Dec 2007
Location: new york, new york usa
Posts: 721
violet6 HB Userviolet6 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Hi, Todd--

Do you think a root canal could cause that? Would one feel better over time, if so? My dizziness started the day after a root canal, although there may be no connection of course. Just curious!

Thanks so much!

Violet

 
Old 09-07-2008, 08:09 AM   #9
Junior Member
(male)
 
Join Date: Mar 2008
Location: SPOKANE, WA, USA
Posts: 35
seigert HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Hi Violet,

Never heard of that connection.........but it certainly does not mean that it does not exist.

Your brain (in theory) will eventually compensate for these dizzies , even if there is some sort of damage done. It just figure it out and re-adjusts itself to accomodate the "new" wiring.

However, if there is something that surgically needs to be repaired, your brain never gets a chance to compensate.........as your "norm" is never staying normal......it is constantly fluctuating based on severity of symptoms. ie. severity of leak from inner ear fractures/holes.

I do not see how a root canal connects to the inner ear at all.......maybe I am wrong though.

However, flights, pressure changes, driving over mountains, snorkeling, all of these can cause a slight fracture in the inner ear.

Mine actually was from a flight from about 2 weeks earlier!

Todd

 
Old 09-07-2008, 10:41 AM   #10
Senior Veteran
(female)
 
Join Date: Dec 2007
Location: new york, new york usa
Posts: 721
violet6 HB Userviolet6 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Thank you for the info, Todd! I never had considered the PLF idea, but suddenly I thought, who knows? I seem to be getting better, it's just taking awhile. I might ask my doc, just in case. Makes one a bit wary of being adventurous after you've experienced the dizzies!

Take care!
Violet

 
Old 09-07-2008, 11:15 PM   #11
Veteran
(male)
 
Join Date: Feb 2008
Location: USA
Posts: 352
Boslee2008 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Thanks for the info Todd. But I already having hearing loss in my right ear, and my GOOD ear is the one that feels "full" now, so there is no way in hell that i am allowing exploritory surgery and risking hearing loss, facial paralysis, and all sorts of problems when the likelyhood is, there is nothing there, but I appreciate the thought.

I have been to some of the best ENT's, neuro-otologists in the country, and nobody suspects a PLF. I see no reason to slice my skull open at this point. I'm functioning at this point, granted, very poorly, but in a few years, they will most likley have better imaging techniques. Maybe then, they will have a better way of seeing inside the inner ear, and will be able to spot something for sure. Until then, I am not risking it.

And no, there was no accident, no travel, no fall, no pressure changes,...NOTHING before this incident. I went to sleep, and woke up like this one day. Spontaneously. And why is that nobody with PLF complains of this symptom?? PLF is fairly common in the scheme of things but this symptom seems to be relatively unheard of. I have spent time with Neuros who tell me they have operated on many cases of PLF, none who have complained of symptoms like mine. I honestly do not believe there is anything wrong with my ears. But thanks for the heads up.

Rich

 
Old 09-09-2008, 01:38 PM   #12
Junior Member
(male)
 
Join Date: Sep 2008
Location: boston, ma
Posts: 28
krahon HB Userkrahon HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Sorry David, yea, MAV, thats finally (after 16 years) what a doctor has said is probably the cause

But I am in the same boat as you, everyday, allday, 24/7, never a rest, I have aura, visual snow, the green fuzzy stuff, pressure headaches, i feel like i am on drugs, mental fog, and every thing moves slightly and randomly, mostly when I move my eyes everything moves in the opposite direction making objects appearing closure to one another. When iIlook at the right end of a table and then look at the left end, the left end scrolls as I move my eyes, I know the length of the table because I can still see it in my periph vision.

 
Old 09-09-2008, 02:18 PM   #13
Veteran
(male)
 
Join Date: Feb 2008
Location: USA
Posts: 352
Boslee2008 HB User
Re: Objects moving in my vision, can't take it anymore!!!!

To me, that is RIDICULOUS that this crap can last that long!!! 16 years??? I can GUARANTEE you that I will not have this for 16 years!!! Want to know why??? I will not be alive to have it!! Something has to be done!! Personally, I am starting to doubt this whole migraine theory. Sure, it may be related to migraine, like a cousin, but in my personal opinion, it is NOT a migraine. Migraines do not last 24 hours a day, 7 days a week for decades. Not a SINGLE person, ever, in the history of recorded history, has had a decade long painful migraine without SOME sort of break with complete resolution of ALL symptoms between attacks. Therefore, it only seems logical that a "silent migraine" would follow similar suit. I am going to dedicate my LIFE to finding the cause for this, and finding a cure, because people are suffering needlessly. I will be putting out a series of videos on-line to try and reel in doctors who may be on the forefront of research into the TRUE cause of these symptoms (I can't say where but there are very limited resources for on-line videos so they shouldn't be hard to find), I will be trying to put together and fund research studies so that new medications can be developed for this condition, but it takes years for this to be accomplished. I think the medications currently available are miserable failures for the most part. They have WAY too many side-effects, and not nearly enough power. The evidence is in the fact that we often have to combine two or three of these things in order to get any kind of relief at all. I don't know about any of you, but I have it REAL BAD, and I can barely function on a daily basis with all this ridiculous 24/7 visual snow, everything in my world glowing, moving, the fatigue, the heart palpitations and fatigue, and all the other crap. I am not going to take this lying down and I am not going to subject myself to any more medications that aren't nearly good enough and do not get to the root cause of the problem. NOBODY has a vested interest in a cure. Think about it. All these doctors love to have their patients constantly come back to them month after month, pay their bills, and simply switch from one medication to another over and over again. This thing does NOT go away with the current list of medications for most people that I can see. Well, these doctors may not have a vested interest in a cure, but I do, and I will persuing it, even if it costs me everything I ever make in my life. I will not be spending the next 10-20 years doing NOTHING. No doctor will ever present a cure. They will lose a LOT of business!! Remember, doctors still run a buisness, and without clients, they don't make money. It's a terrible thought but it's the truth. I will not continue to pay for their big houses, vacations, and their kid's college while I continue to suffer. I am going to WORK my way out of this!! This condition downright SUCKS!!!!

Rich

 
Old 09-09-2008, 02:29 PM   #14
Junior Member
(male)
 
Join Date: Sep 2008
Location: boston, ma
Posts: 28
krahon HB Userkrahon HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Yea this constant moving world is not fun. I have VS, tons of AURA, it never ever ends, ENT at MEEI in boston says he thinks I have MAV too.

But just like you point out, why is it constant?

I did look up constant VS and such, its common with taking acid etc. but I never have. And its mostly is just visual issues from the forums I read not much of other symptoms we both have, things moving, dizzyness, head preassure, etc.

I am getting test for a ton of stuff plus I have an MRI in four weeks, but I don't have much faith in the medical community, after all I diagnosed the only thing wgich has ever helped me...klonopin 1mg 3 times a day, without it everything gets 10X worse!

Dave keep me posted on ANYTHING you find...

ANYONE else have these visual things 24/7 that NEVER stop in addition to full head, dizzyness, ears popping etc?

 
Old 09-09-2008, 04:34 PM   #15
Veteran
(female)
 
Join Date: Jul 2006
Location: KS USA
Posts: 377
cknmbbl HB User
Re: Objects moving in my vision, can't take it anymore!!!!

Rich,
AMEN!!!!!!!!!! 24/7 for almost 3 years.

CK

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:23 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!