hello i was just reading through the posts and found someone with sypmtoms described exactly as mine alexiwildchild or anyone else that feel as thought they share the same symptoms please post back

i have had it 24/7 for 31 months

Tests/diagnoses: I have had every blood test done two mris been to ent neroulogist no diagnoses doctors either stunned or put it off to anxiety or depression i am so tired of wasting money to get that same diagnoses when i know that not the truth if any thing the dizziness causes the anxiety and depression

Symptoms: They are constant 24/7 whether my head is still or not
bouncy shaky wobbly vision not eyes just vision, objects in my vision move they jump etc. It is worse when my head is completely still that is when i notice it the most. I have it when i am walking too but not as bad as when i am just starring at something. It is like looking through the lense of a home made video camera 24/7 some days are better than others but it is always there not even a minute of relief

things make it better/worse : waking up and just staring at ceiling in morning is always the worse in mornings. anxiety lack of sleep makes it worse also.
when i am watching something that is in motion or when i am motion or in a vehicle i dont notice it as much maybe because that is because i know that things or supposed to moving i dont know any feedback would be help ful:confused:

Hi there. I had that same problem from the beginning when I got hit with the vestibular neuritis. That was definitely my biggest complaint throughout my entire illness and it was 24/7. Have you had an ENG done? Have you seen a neuro-otologist? These are specialists in this field and know much more about this stuff and its variations than most ENTs/neuros. I was able to recover through a combo of vestibular rehab and vision therapy. Have you tried any bouts of vestibular rehab to see if it would be helpful? I hope you find some relief soon.
Joni

whoa.....and i was just beginning to think i was making this all up in my head for some crazy reason,hah. i am glad and sad that you are having to post about this. i feel for you, as i have only been dealing with this for 7 months now. can you please share with me how your bout with this started...like initial symptoms, etc.???? i would absolutely LOVE to compare!!!!! and maybe get some underlying issues pointed out for a resolution to this junk!

i don't know if you read most of my earlier posts, but it didn't start out like that for me...the vision. it was weird spacy feeling, doc thought it was INNER ear infection and prescribed antibiotics--which i had an allergic reaction to---and then this snowballed out of control. i had weird vision...not vertigo fast spinning, but slow swirling motion of like the ceiling for example. then it turned into for example a picture moving away from the wall or coming at me. now it is the constant back and forth FAST motion of objects in my view. it seems like it is the corners of objects that are even worse, like the outlining of a picture. sometimes other than back and forth--it will jerk too though.... it is worse when looking at things far away, UP, and in peripherals. MY EYES DON"T Feel like they are moving....JUST THE VISION, as you stated....it seems they think it's the eyes....NO!!! CAN YOU STILL SEE IT WHEN YOU CLOSE YOUR EYES??? i can, but it's not constant like with my eyes open....strange. it almost sometimes looks like a mirage too...weird.


i have also had:
MRI of brain
C/t scan
EEG
basic thyroid/diabetes tests--
ENG-- showed 35% less function in left ear--but thinks it is MAV
rotary chair test
3 hearing tests-normal
allergy and asthma testing (due to chest pains)--they say i have asthma, but i'm not buying that--i don't have trouble breathing. just sharp random pains
B-12 test---showed i was low and i had shots and am doing sublinguals under the tongue--and it has been back in normal range for a few months now....have you also had this checked???


as of now....i have had a diagnosis of labs, two diagnosis of MAV, (which i am currently in my 5th week of nortriptyline with no changes).

did you have any other symptoms??? or do you have any others now? any imbalance??

you have now made me feel as if i'm not losing my sanity---as much :D
please keep in touch on here:)

yeah i dont remember if i realy noticed it was bouncy shaky vision at first it was more of a lightheaded not my self feeling. whatever and whenever it frist happed i had my first anxiety attack. and since then been stuck with anxiety and the shaky bouncy vision is always there 24/7. i know what you mean about eyes being closed it feel like a teater totter going on pulsating through each eye when it is closed if you understand what i mean. like a up and down in and out feeling when your eyes are closed. about like it started out as slight swirling of the cieling yeah mine to it was like it would want to do a full circle then only go half way and then turn and the oppisite way and do another half circle. i dont know it is hard for me to describe if you understand what i mean. Now its like looking throgh a poorly shot home video 24/7 is yours better when your watching something in motion or in motion mine is and the funny part it seems to be worse when i am completely still. you are the only one i have ever heard of having it 24/7 constant like me not just when your walking

that is so strange that you mentioned you had you're first panic attack with this...so did i! of course, mine was the next day after my E.R. visit and i tried to take some meds the doc gave me, and i guess i had a panic attack after taking them---after the whole horrible reaction--and had to go back to the E.R.....as i had no idea what was going on and thought i was having like a relapse reaction or something :( well....i had to be on xanax for a little over a month after i was about 3-4 weeks into this. it helped so much, but was hard to get off. i don't have anymore panic attacks, but i do have and have had a ton of depression over this stuff. luckily, the nortriptyline is also an anti-depressant HAHAH~ i have been back to work for quite a while and even did a whole semester at college through the worst part of this__AHHHH!! so things seem somewhat more normal than back in June.

have you ever had those weird "off feeling" times before???? reason i ask, i had them back in 2000 and the doc gave me the same kind of antibiotics to treat an "ear infection" and it did the trick everytime getting rid of my "dizzy" stuff. do you know if you had tubes in your ears as a child? i am trying to find any kind of similarity with this junk!!!! AHHH! i am so sorry you are still dealing with this---it is truly horrible and makes me think i'm going nuts...when your whole world just can't look like it used to....and better yet...supposed to.

do you have any balance problems? did you have any nausea? i know exactly what you mean about the swirling ceiling too....like back and forth.
as far as motion...definitely....i can drive now without any problem and it seems better. walking, it gets annoying, but i noticed when i'm in motion...i don't hardly notice it either. i have searched high and low for someone else with these vision problems....and have just now found you on here. tell ya what...if this thing goes...we need a well deserved vacation like all the rest of these people on here:D
Please keep in touch!!!!!!! i have a follow up in feb and am going to see about getting a referral to a neuro-opthamologist instead...have you thought about that as well?
thanks so much

to tell you the truth i am so tired of going to doctors and them putting it off as anxiety or depression i think that i have given up for a while on going to the doctors,,, man if only i could figure this out and get rid of it. sometimes i question on whether this is something serious or not like it is going to be the end of me but evry doctor i have been to have assured me its not but sometimes i waunder.... i cant believe that i have had this for 2 and half years constantly my whole world instantly change in a secound literally i was at work and them wam got this off feeling and now shaky vision. i just wish that i could be normal agian i took for granted my normal life........i have never had any other problems with my ears...although since i got this i notice my ears crackle now when i swallow more than normal at least once every day. i dont know why it is worse when i am completely still this is where i question if it is an inner ear disorder or not. i dont know the firstdiagnosis i had when i had the spacy lightheaded feeling was labs that was 2 and half years ago and since then no one can tell me what is wrong with me you know i dont know if this has any correlation but i was taking diet pills from gnc for 3 days when this all happened maybe you too. i dont know i think my family is getting tired of me saying over and over i am dizzy they and like doctors dont understand cause i look normal. are you always tired i am ... i could literally sleep all day... other than the fatigue if i could just get rid of this constant 24/7 bouncy wobbly jerky shaky jumpy vision i would be just find.... you know an other thing when i am just sitting really still i notice that my body will actually rock back and forth some times and when i look and the mirror my pupils pulsate in and out like when my vision jerks this is what made the neroulogist get me and mri and when that came out normal he said i just ahad hypersensitive pupil reflexes and there was nothing to worry about since the did react to light if you look in the mirror do your pupils kind of pulsate with the vision problem?????

oh yeah does it feel as though you are constantly in a home video with all lines moving just not as severe???

i get the jumpy jerky vision most of the time. have got used to over the years but reading is still difficult and filling in forms is a nightmare because i miss out important instructions where my vision has jumped to another line or paragraph

i completely understand not wanting to go to another doc--it seems they are putting me off, i even had one "neurotologist" laugh and just kinda shake his head and said he thought it was meniere's---he had listened to NOTHING i had said. it is extremely frustrating.

i am always tired it seems too. it isn't as bad as when i first got this junk...but it definitely is still some fatigue. i think it was partly due to my low b-12. since i am treating that...it seems my energy has gotten somewhat bettter. however, these pills are definitley making me tired though-ughh.

i wasnt taking any diet pills, however, i have been taking birth control for many years and have recently switched, thinking maybe it had somethig to do with hormones or whatever. nothing so far, but it's only been a month and 1/2 since i switched.

i remember right before this got bad--like a few days before the "off feeling". i had moments where i would touch my forehead to scratch and i couldn't really feel it??? does that make sense? did you have any of those weird sensations? i was EXTREMELy stressed out when all this started---were you---i mean BEFORE all this. i was having a lump in my breast checked out, i had 2 pre-melanoma moles removed, and my grandfather dear to me was dying of cancer.......could this all have been triggered by STRESS?????? if so, why hasn't it gone away??? also, did you feel like you had some sort of head cold through the first few months of this???? i felt really ill just up to about 2 months ago and thank god that lifted.

i think they are diagnosing me with MAV due to the fact that i have had pretty bad headaches since this all hit. never really before. i've only had 1 migraine with aura years back before this. and one during this. do you have headaches or migraines???

it's like you were writing exactly my thoughts. i am so worried that there is soemthing really severe going on here, and they won't find it before it's too late. that's what makes this worse. and with the moving back and forth....i am EXACTLY the same way. it seems like my heartbeat is moving my body when i'm just sitting there--it is very apparent. as far as the home video thing, it does seem like things are like that...it's really hard to read papers or take tests now..cuz it's like the words or sentences are jerking away.

i haven't looked in the mirror yet to see my pupils, but i will now lol. do you have a my space? i would love to be able to blab on forever about this haha


Robzel....how long has this been going on with you?? have the docs had any kind of idea with what's going on with you? has it gotten any better over time? sorry you are dealing with this too

i dont think that i was really stressed out at the time but who knows??? I dont really get any headaches just the pms ones and once in a great while i will get them but i think that is normal since i got them before i ever got this dizzy thing. i dont it is so sad this dizzy thing i think i let it consume my thoughts so much that i probably make it worse if you know what i mean but it is so hard not to when you open your eyes and wam there it is always there. ive tried everything to get rid out it exercising eating right cutting out caffene and lots of salty food. nothing helps at all. I am totally stressed out by this thing if only i could get a definate diagnoses then i would probably be able to put my mind at ease. it is the not knowing part that really scares me btw how old are you me i am 20 it started when i just turned 18 you? Is your jumpy shaky vision seriously constant no secounds of relief??

about the home video thing yep it looks almost exactly like that just not as severe and sometimes i waunder is this caused by anxiety and stress because honostly i think i could live with the shaky vision or at least cope with if i knew i wasnt going to die because it. never in my life have i known what anxiety was untill this all happened what about you??

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i dont think that i was really stressed out at the time but who knows??? I dont really get any headaches just the pms ones and once in a great while i will get them but i think that is normal since i got them before i ever got this dizzy thing. i dont it is so sad this dizzy thing i think i let it consume my thoughts so much that i probably make it worse if you know what i mean but it is so hard not to when you open your eyes and wam there it is always there. ive tried everything to get rid out it exercising eating right cutting out caffene and lots of salty food. nothing helps at all. I am totally stressed out by this thing if only i could get a definate diagnoses then i would probably be able to put my mind at ease. it is the not knowing part that really scares me btw how old are you me i am 20 it started when i just turned 18 you? Is your jumpy shaky vision seriously constant no secounds of relief??

about the home video thing yep it looks almost exactly like that just not as severe and sometimes i waunder is this caused by anxiety and stress because honostly i think i could live with the shaky vision or at least cope with if i knew i wasnt going to die because it. never in my life have i known what anxiety was untill this all happened what about you??


well, i am 26 about to turn 27 in a few months...sorry this hit us so young ya know!! and yes, mine is seriously CONSTANT without any seconds of relief. the only time i notice "relief" is when i am really distracted at my job and moving around so much that i don't notice it until i'm still or look at something far away. or like riding in a car for example. but other than that---the beast still is here. it is especially bad in my classes trying to concentrate, read, or take notes/tests....it is really apparent.
i know what you mean...i could cope better knowing why this is like this. it is so life altering...makes me so spiteful. i NEVER had any issues with anxiety before this, nor even knew what a panic attack was like. i was care-free individual and handled my stress accordingly. now, i am not filled with anxiety so much, just more anger lol. i'm just pissed about the whole situation and that there isn't a resolution as of yet.but i'll tell you what, i'm determined to have SOMEONE give me an answer that isn't filled with doubt.

about eyes...do you wear contacts or glasses? i am supposed to wear glasses for being nearsighted, but usually only at night when driving, because otherwise it's not too much to disturb me. i do have quite an astigmatism, or so the optometrist always told me. i am definitely going to see a neuro-opthamologist to get some more testing done, as i have read they have many more tests to do on the eyes and movements, etc. i don't know if i will be able to have a referral though. do you have any chest pains? on birth control??ughhh, there's gotta be some connection. did you have any exposure to indoor molds??????

thanks so much---you are quite the lifesaver right now:angel:

i did have exposure to indoor molds it wasnt the bad kind though. and the only reason why i know that i had exposure was that my mother was remodling and there was some mold under some of drywall. i dont take b/c i did for a little bit when i 16 but it made me have my period very light though all the time

i did have exposure to indoor molds it wasnt the bad kind though. and the only reason why i know that i had exposure was that my mother was remodling and there was some mold under some of drywall. i dont take b/c i did for a little bit when i 16 but it made me have my period very light though all the time

reason i asked about that was because all this started coincidentally when my apt had a minor "flood" and wasn't cleaned properly and the a/c was constantly leaking. there was a huge patch of black mold, and it was like that next week all this happened to me. how soon after did this happen to you? i have been wondering if this all isn't some type of toxic mold poisoning, because it can have all kinds of neurological effects...but docs are clueless bout these things...and how to test the blood etc.

i was just thinking of other weird symptoms through and at the beginning of all this. my toes on both feet seem to get really bright red and hot after only standing for a very short time...or sometimes just sitting on the couch. they kinda get shiny and swollen looking too. any similar symptoms to that?

hope you have a good weekend despite this junk!

did you ever look in the mirror to see if your pupils pulsate cause i often waunder if that has something to do with it?? I will try and have a good weekened and you too ok /

i completely understand not wanting to go to another doc--it seems they are putting me off, i even had one "neurotologist" laugh and just kinda shake his head and said he thought it was meniere's---he had listened to NOTHING i had said. it is extremely frustrating.

i am always tired it seems too. it isn't as bad as when i first got this junk...but it definitely is still some fatigue. i think it was partly due to my low b-12. since i am treating that...it seems my energy has gotten somewhat bettter. however, these pills are definitley making me tired though-ughh.

i wasnt taking any diet pills, however, i have been taking birth control for many years and have recently switched, thinking maybe it had somethig to do with hormones or whatever. nothing so far, but it's only been a month and 1/2 since i switched.

i remember right before this got bad--like a few days before the "off feeling". i had moments where i would touch my forehead to scratch and i couldn't really feel it??? does that make sense? did you have any of those weird sensations? i was EXTREMELy stressed out when all this started---were you---i mean BEFORE all this. i was having a lump in my breast checked out, i had 2 pre-melanoma moles removed, and my grandfather dear to me was dying of cancer.......could this all have been triggered by STRESS?????? if so, why hasn't it gone away??? also, did you feel like you had some sort of head cold through the first few months of this???? i felt really ill just up to about 2 months ago and thank god that lifted.

i think they are diagnosing me with MAV due to the fact that i have had pretty bad headaches since this all hit. never really before. i've only had 1 migraine with aura years back before this. and one during this. do you have headaches or migraines???

it's like you were writing exactly my thoughts. i am so worried that there is soemthing really severe going on here, and they won't find it before it's too late. that's what makes this worse. and with the moving back and forth....i am EXACTLY the same way. it seems like my heartbeat is moving my body when i'm just sitting there--it is very apparent. as far as the home video thing, it does seem like things are like that...it's really hard to read papers or take tests now..cuz it's like the words or sentences are jerking away.

i haven't looked in the mirror yet to see my pupils, but i will now lol. do you have a my space? i would love to be able to blab on forever about this haha


Robzel....how long has this been going on with you?? have the docs had any kind of idea with what's going on with you? has it gotten any better over time? sorry you are dealing with this too


I have this exact feeling as well. I thought I was the only person feeling this way, until I read a few posts. It's like I was reading my own thoughts. I even have the feeling with the heartbeat moving my whole body. Sometimes I can hear my heartbeat if it's quiet. I can read pretty well, but when I am sitting still it feels as if my eyes are slightly shifting back and forth as if they can't center on what I'm looking at. This of course makes me fear the worst(tumor, MS, and even death) I had it 3 years ago for about 3 months, then it went away, well, it has returned... 3 weeks before Christmas. Some days are better than others, yesterday for example was AWFUL. I had such a bad headache, I felt tired, lightheaded... I wanted to crawl under a rock and you know what...:(

When I had this before doctors never said what it was after bloodwork, etc. I was given antibiotics, vertigo meds, darvocet for migranes.... But it was always there.... I just would like to know what it is, and if I will live to retire(I'm only 37), and be with my family... It is very disturbing...

I have this exact feeling as well. I thought I was the only person feeling this way, until I read a few posts. It's like I was reading my own thoughts. I even have the feeling with the heartbeat moving my whole body. Sometimes I can hear my heartbeat if it's quiet. I can read pretty well, but when I am sitting still it feels as if my eyes are slightly shifting back and forth as if they can't center on what I'm looking at. This of course makes me fear the worst(tumor, MS, and even death) I had it 3 years ago for about 3 months, then it went away, well, it has returned... 3 weeks before Christmas. Some days are better than others, yesterday for example was AWFUL. I had such a bad headache, I felt tired, lightheaded... I wanted to crawl under a rock and you know what...:(

When I had this before doctors never said what it was after bloodwork, etc. I was given antibiotics, vertigo meds, darvocet for migranes.... But it was always there.... I just would like to know what it is, and if I will live to retire(I'm only 37), and be with my family... It is very disturbing...


wow---too weird! i am sorry you are dealing with this again. can i ask you how did yours start the first time and this time??? weird, spacy feeling?? all mine happened in such a blur with my allergic reaction, that i can't recall when it turned into the constant jumpy vision. however, it wasnt from the beginning. also....how did it go away for you??? slowly gradual--could you tell it was improving? i can imagine it must be hard having the junk again. do you think you have any similar trigger from the first time???

what symptoms do you have now? is your vision constant like this? i do hope it goes quickly again for you!:) and for the rest of us lol...whatever IT is. it is so scary though not knowing what the cause is. i am taking the nortriptyline and hoping for a savior out of it. we'll see...

wow---too weird! i am sorry you are dealing with this again. can i ask you how did yours start the first time and this time??? weird, spacy feeling?? all mine happened in such a blur with my allergic reaction, that i can't recall when it turned into the constant jumpy vision. however, it wasnt from the beginning. also....how did it go away for you??? slowly gradual--could you tell it was improving? i can imagine it must be hard having the junk again. do you think you have any similar trigger from the first time???

what symptoms do you have now? is your vision constant like this? i do hope it goes quickly again for you!:) and for the rest of us lol...whatever IT is. it is so scary though not knowing what the cause is. i am taking the nortriptyline and hoping for a savior out of it. we'll see...

Mine started the first time when I was shopping in Walmart... I was pushing the cart and as I was walking along ready to turn a corner I just out of nowhere felt very dizzy/lightheaded. At first I was just thinking I was having a vertigo thing because a couple years before I had one vertigo episode in a Lowes store. It was the same thing where I all of a sudden felt very dizzy, and had to sit on an endcap in an isle. One of the customer service people ran down there to see if I was ok. That was scary. And it went away at that time with no residual effects at all. Where as this thing now just stays... It's relentless. So in the 3 year ago thing it was there for the rest of that day, I felt tired, nauseaous, headache... downright like, well...crap. The next day it was still there, I was getting scared. I thought I was getting a cold? stress? But then it was a week, 2 weeks, 3 weeks... I started thinking it was the end and I had a tumor, menengitis, stroke, I was going to have a annurism(sp) I was looking everywhere online for answers. So I went to a walk in clinic, they dismissed it as an inner ear infection, sinus infection, they gave me antibiotics, and they were useless, I wasted $200... I went to a regular doctor, she did a balance test, said I was a little off, ummmm, NO KIDDING! Well I then got Allegra D, and Antivert. Allegra did nothing, Antivert helped but made me sleepy, all it is is behind the counter Dramamine. Dramamine does help this I must say, but not a permanenet cure. She also said I may need a ct scan, but I was never given one.

Well after I think 2-3 months, and I really don't remember, because I tried to forget about it, it just gradually went away. As wierd as this may sound. I moved to another part of the state(FL) and that is when it went away. I think I dismissed it as stress, or an allergy on the other coast. I felt good, and I was relieved. I didn't think I was dying anymore.

Now I don't think it was what I thought it was. I know I had some stress with the new job I started here in October, but this has started almost 2 months later??? And I think the symptoms are worse at times now, but then again I remember feeling REALLY AWFUL back then, and now I am remembering.

I have taken about 15 breaks to type this out since this is just aggrivating it, but it makes me feel a tiny bit more at ease knowing I am not the only person out there feeling this.

As for my current symptoms...

I have the jumpy vision, some days and times are worse than others. It feels like when I look at something and try to fix on it, that my eyes are having a hard time fixing on it, they make it feel like my eyes are back and forth without me doing it. or twitching??? I am sure you can relate. Flourescent lighting makes it WORSE.

I also have a very very slight pain in my right ear, sometimes it's not there, then it comes back... Also when I chew sometimes it sounds like a tiny crackling in my right ear too. Makes you wonder if it is an inner ear problem, OR A TUMOR!

I can be feeling half way decent then out of nowhere on the top of my head slightly off center towards my right ear I get a tingling feeling, like a cold(how do I explain this?) it's like a cold piece of string is in there and it is wiggling for only 3 or 4 seconds. It is probably a nerve? Or a TUMOR! It's hard not to think the worst feeling this way... Well after the tingling stops I feel the lightheadedness come one a lot worse then I get a headache which the one I had yesterday was pretty bad... It made me irritable, tired, my eyes were hating light, lightheaded, and a tiny bit nauseous. Migrane??? I know when I get the tingling, I am about to feel cruddy, and a headache is on the way. i take Excedrin for migranes every day before work to get through.

This constantly feeling like I am on a heavy duty antihistmine and like I have a permanent head cold, jumpy vision is really aggrivating me. I actually get mad at this and talk to myself about how bad I feel at times, saying how "this is not cool, why do I have this?" I ask the big guy up there to either let me feel better, or just get it over with and take me, but I want to be better. It's not healthy to want to just ask to be taken away by God as not to feel like this, but it's tough going on day after day like this, AGAIN. Know what I mean. I just want to know what it is... I sit at work thinking about what to do for my family if it's something bad. How will they be or what they will do, if I were to, you know:angel:... I don't like this.

My only savior is last time it went away, I hope it does again, and NOT come back. What really stinks is I am moving back to Florida next month and I have to drive my moving truck there, I don't want to feel like this all the way!

I have never been very religous, but I sure do find myself asking for help in this...

I hope you get better too, this is a terrible ordeal.:)

Mine started the first time when I was shopping in Walmart... I was pushing the cart and as I was walking along ready to turn a corner I just out of nowhere felt very dizzy/lightheaded. At first I was just thinking I was having a vertigo thing because a couple years before I had one vertigo episode in a Lowes store. It was the same thing where I all of a sudden felt very dizzy, and had to sit on an endcap in an isle. One of the customer service people ran down there to see if I was ok. That was scary. And it went away at that time with no residual effects at all. Where as this thing now just stays... It's relentless. So in the 3 year ago thing it was there for the rest of that day, I felt tired, nauseaous, headache... downright like, well...crap. The next day it was still there, I was getting scared. I thought I was getting a cold? stress? But then it was a week, 2 weeks, 3 weeks... I started thinking it was the end and I had a tumor, menengitis, stroke, I was going to have a annurism(sp) I was looking everywhere online for answers. So I went to a walk in clinic, they dismissed it as an inner ear infection, sinus infection, they gave me antibiotics, and they were useless, I wasted $200... I went to a regular doctor, she did a balance test, said I was a little off, ummmm, NO KIDDING! Well I then got Allegra D, and Antivert. Allegra did nothing, Antivert helped but made me sleepy, all it is is behind the counter Dramamine. Dramamine does help this I must say, but not a permanenet cure. She also said I may need a ct scan, but I was never given one.

Well after I think 2-3 months, and I really don't remember, because I tried to forget about it, it just gradually went away. As wierd as this may sound. I moved to another part of the state(FL) and that is when it went away. I think I dismissed it as stress, or an allergy on the other coast. I felt good, and I was relieved. I didn't think I was dying anymore.

Now I don't think it was what I thought it was. I know I had some stress with the new job I started here in October, but this has started almost 2 months later??? And I think the symptoms are worse at times now, but then again I remember feeling REALLY AWFUL back then, and now I am remembering.

I have taken about 15 breaks to type this out since this is just aggrivating it, but it makes me feel a tiny bit more at ease knowing I am not the only person out there feeling this.

As for my current symptoms...

I have the jumpy vision, some days and times are worse than others. It feels like when I look at something and try to fix on it, that my eyes are having a hard time fixing on it, they make it feel like my eyes are back and forth without me doing it. or twitching??? I am sure you can relate. Flourescent lighting makes it WORSE.

I also have a very very slight pain in my right ear, sometimes it's not there, then it comes back... Also when I chew sometimes it sounds like a tiny crackling in my right ear too. Makes you wonder if it is an inner ear problem, OR A TUMOR!

I can be feeling half way decent then out of nowhere on the top of my head slightly off center towards my right ear I get a tingling feeling, like a cold(how do I explain this?) it's like a cold piece of string is in there and it is wiggling for only 3 or 4 seconds. It is probably a nerve? Or a TUMOR! It's hard not to think the worst feeling this way... Well after the tingling stops I feel the lightheadedness come one a lot worse then I get a headache which the one I had yesterday was pretty bad... It made me irritable, tired, my eyes were hating light, lightheaded, and a tiny bit nauseous. Migrane??? I know when I get the tingling, I am about to feel cruddy, and a headache is on the way. i take Excedrin for migranes every day before work to get through.

This constantly feeling like I am on a heavy duty antihistmine and like I have a permanent head cold, jumpy vision is really aggrivating me. I actually get mad at this and talk to myself about how bad I feel at times, saying how "this is not cool, why do I have this?" I ask the big guy up there to either let me feel better, or just get it over with and take me, but I want to be better. It's not healthy to want to just ask to be taken away by God as not to feel like this, but it's tough going on day after day like this, AGAIN. Know what I mean. I just want to know what it is... I sit at work thinking about what to do for my family if it's something bad. How will they be or what they will do, if I were to, you know:angel:... I don't like this.

My only savior is last time it went away, I hope it does again, and NOT come back. What really stinks is I am moving back to Florida next month and I have to drive my moving truck there, I don't want to feel like this all the way!

I have never been very religous, but I sure do find myself asking for help in this...

I hope you get better too, this is a terrible ordeal.:)

wow....that is so crazy! thanks for replying about all this. i would definitely suggest seeing a neurotologist or neurologist about that if you're having to take the excedrin everyday. you may be better off starting on a migraine preventative like i am trying....let me tell you, it may not be doing much for the visual symptoms, but my headaches are definitely less and when they hit, they are way less severe....not one migraine with aura yet on this med. however, that makes me wonder...if it is treating my migraines or headaches....and that is the underlying CAUSE of my visual symptoms, WHY havent the visual symptoms gone away????? it just makes me wonder.

well...as far as tumors go....i have had both an MRI and CT scan of my brain, and nothing there--all normal. in a horrible way, i was hoping they would find something to ease my mind on what is truly causing all this. but in other hands, i am so glad that it isn't anything like that--ya know? i would definitely have "faith" that if it went away for you before, that surely it will go away again...just when always sucks. as for myself, i am desperately awaiting that day. maybe it is all triggered by stress??? migraine??who knows. i know if it does get "cured" i will be going on mystery diagnosis for all of us who have this crap will know how to get rid of it lol!

does it seem worse for you when you are looking at something UP or from the corner of your eyes? it does me.

well....as far as crackling in my ears, yeah, i have that alot too...but it has definitely gotten better since the beginning of this. i remember putting vicks vapor rub all around them to soothe or "unplug" whatever it was. now it seems just to be vision issues. as i said in one of my other responses, i am going to seek out a neuro-opthamologist to get another opinion as well....and to have them look into my eyes for more of an idea...but for some reason, i think they will come up with no answers.

wishing you all the best...please keep in touch on here:) it is great---horrible to say---to know that i am not alone in this

alexi that is funny how you say i will be going on mystery diagnosis when you figure this out, ijoke and tell my mother that all the time as for caback i totally understand how you feel about asking god just to get it over with and take you that is such a scary feeling. I have lots of hope for you that you will not be like me and stuck in this mess for almost 3 years since you have had it before and it went away. Alexi what if it is stress? you got when you where stressed out caback you got it from moving. I was probably stressed out now that i think of it i had a horrible roomate situation. i waunder if we psyched ourselves out and have huyperactive systems now. for instance with the whole pupil thing with me and sometimes i waunder if the jumpy vision correletes with my heartbeat like each time it beats vision sway and jumps to one side and then it beats agian and sways and jumps to other side when i first had this it wasnt jumpy vision it was like 24/7 lightheadedness and like pulsating vision things would jump at me and back agian kinda. I dont know i am begining to think i will be stuck like this i mean serously 3 years with out even a secound of relief. maybe i trained my brain to be this way since i cant focus on nothing else. Alexi did you ever look in the mirror to see if your pupils do the same thing??? I think this really has something to do with it.

Have you guys tried any vestibular rehab? It certainly depends on the cause, but that stopped my jumpy vision problems.

what exactly is it is it all home exercises if so can you give me a few to do?

I'm beginning to think my problem is inner ear right now, I have had a dull earache now for a few days. I don't remember if I had ear pain 3 years ago with this? I also have a head cold going on too. BUT the head cold just started in the last 2 days. So I don't think it has anything to do with this whole thing, it's just an added BONUS!!!! Makes it worse though.

When you are standing up and fix your eyes on something, can you feel your body sway? I can at times. And if I close my eyes forget it. Yet when I'm driving i fell decent. I have at times felt bad enough to pull over though.

Last night I woke up about 6 times and felt diziness...

I hate this!!!!!!!!!:mad:

what exactly is it is it all home exercises if so can you give me a few to do?

If you go to a physical therapist who specializes in vestibular rehab they can individualize a program for you. If you look in the sticky section under Charlotte's VRTs you will see all of them listed.

alexi that is funny how you say i will be going on mystery diagnosis when you figure this out, ijoke and tell my mother that all the time as for caback i totally understand how you feel about asking god just to get it over with and take you that is such a scary feeling. I have lots of hope for you that you will not be like me and stuck in this mess for almost 3 years since you have had it before and it went away. Alexi what if it is stress? you got when you where stressed out caback you got it from moving. I was probably stressed out now that i think of it i had a horrible roomate situation. i waunder if we psyched ourselves out and have huyperactive systems now. for instance with the whole pupil thing with me and sometimes i waunder if the jumpy vision correletes with my heartbeat like each time it beats vision sway and jumps to one side and then it beats agian and sways and jumps to other side when i first had this it wasnt jumpy vision it was like 24/7 lightheadedness and like pulsating vision things would jump at me and back agian kinda. I dont know i am begining to think i will be stuck like this i mean serously 3 years with out even a secound of relief. maybe i trained my brain to be this way since i cant focus on nothing else. Alexi did you ever look in the mirror to see if your pupils do the same thing??? I think this really has something to do with it.

well...i did look to see if they dialate with my heartbeat, and it doesn't seem to do that with me--or i haven't seen it yet. HOWEVER, strange enough that you mention that, it almost feels under and around my eyes like my pulse is super strong and that it sometimes beats with each shake or jump...but it isn't always the case. i try really hard to see if that's it...and it always jerks around after a few seconds to where it isn't so much going with my pulse anymore. tonight, it seems to be really out of control....i think because i may be getting a cold....:( i also think the pulse thing has some sort of correlation with all this...but what, i wonder????

as far as the vestib rehab, i quit doing any of those for eyes, because i thought that if you have MAV---which is my supposed diagnosis--that it can make it worse...so i don't do them. my balance really isn't a big issue too much at this point, as it was very much so even a few months back....so i will discuss the eye ones on my follow up with the specialist next month.

bumping this....

have either of you been diagnosed with MAV----am i the only one?? is this just a total b.s. guess???

Okay, here I am. I actually joined one of these things. I've spent much time reading different entries and not been brave enough to actually write. I'm thinking if I can get some of this off of my chest, I might feel a little better. I have the jumpy/shaky vision. I have many other weird things happening with my vision along with that.

I'd say the last time I can remember feeling "normal" (oh to have that day back) was about 10 or 11 years ago. WOW I didn't realize it had been that long. I just turned 26. Anyhow, I was at Church camp and sitting outside looking a white building. I go inside and next thing I know my eyes are going crazy. It was my first episode with a migraine. I was freaking out but my Mom and Dad assured me I was fine because my sister also had migraines. She had started having them around the same age as me. It seemed like after that, I kept having visual problems. I didn't know if it was partly in my mind because I had gotten scared or what. Kind of like that migraine had ruined me. Like it had given me some type of hypersensitivity to everything.

You must know that I've always been a worrier. As a child after watching Madeline I was scared to death for years convincing myself I would get appendicitis. I never got it and got over it. Things just always scare me and I convince myself I could have them.

However, these visual disturbances are quite real. I have noticed that my anxiety has gotten much worse within the past 8 months or so. I think I was having a panic attack while getting a pedicure and since then I've been worse. It was a really bright room and it made me feel "strange". Since then I have such weird spacey feelings. I've almost become a hermit. I just try to stay at home in my environment. Sad huh?

My eyes in the dark are horrible. I've slept with a T.V. on for years and years because I can't stand the complete dark. My eyes do such weird things. But I've noticed I can be asleep, and waking up with my eyes closed and they do a vibration thing. Once I'm up and going, looking at things, they look like they're moving. Right now, this computer screen looks like it's moving back and forth towards me. I was so glad to know that someone else sees this. Also, the feeling like your swaying thing. Gosh I thought it was just me.

I've always worn glasses since 18 months old. I had a lazy eye and had surgery to correct the muscle. I can't really see out of that eye. I see but it's like a static type vision.

I got myself so worked up about 5 years ago and went to the eye doc...which I'm scared to death of now. And I was real panicked and didn't tell her all my symptoms but she did some tests. They found I had some retinal scarring on my good eye but said it was perfectly fine and could be from my skin pigmentation or just born with it. I didn't like that explanation.

Anyway, my problem is I don't tell anyone. I sort of tell my family sometimes but they shake it off as me being a worrier. I do have several migraines a year. And they are the aura migraines. Let me tell you, those can be something quite scary. I've gotten a little better about not freaking out with them. But I sure hate getting them.

I've gotten now where I avoid going most places. I like to be in a darker room because I feel my eyes don't do as many freaky things. I'm scared to get away from the house. I don't like to drive anywhere because the road is always jumpy and fuzzy. The days when my vision feels really jumpy and shaky, I sometimes get really nautious headaches.

Well I could go on and on and on but I'll leave for now. I have many many other visual symptoms. I'm just so scared to go to a doc. I fear losing my sight or having a tumor. But I feel like each day it gets so much worse and I feel like I can't take it and need to go the doc but am scared!

I feel that if I were to go to the doc and ruled out tumor or any major problem, that I might get better. Sometimes I think that maybe stress and anxiety over it may make it worse. I don't know..I just know I've GOT to do something.

Okay, here I am. I actually joined one of these things. I've spent much time reading different entries and not been brave enough to actually write. I'm thinking if I can get some of this off of my chest, I might feel a little better. I have the jumpy/shaky vision. I have many other weird things happening with my vision along with that.

I'd say the last time I can remember feeling "normal" (oh to have that day back) was about 10 or 11 years ago. WOW I didn't realize it had been that long. I just turned 26. Anyhow, I was at Church camp and sitting outside looking a white building. I go inside and next thing I know my eyes are going crazy. It was my first episode with a migraine. I was freaking out but my Mom and Dad assured me I was fine because my sister also had migraines. She had started having them around the same age as me. It seemed like after that, I kept having visual problems. I didn't know if it was partly in my mind because I had gotten scared or what. Kind of like that migraine had ruined me. Like it had given me some type of hypersensitivity to everything.

You must know that I've always been a worrier. As a child after watching Madeline I was scared to death for years convincing myself I would get appendicitis. I never got it and got over it. Things just always scare me and I convince myself I could have them.

However, these visual disturbances are quite real. I have noticed that my anxiety has gotten much worse within the past 8 months or so. I think I was having a panic attack while getting a pedicure and since then I've been worse. It was a really bright room and it made me feel "strange". Since then I have such weird spacey feelings. I've almost become a hermit. I just try to stay at home in my environment. Sad huh?

My eyes in the dark are horrible. I've slept with a T.V. on for years and years because I can't stand the complete dark. My eyes do such weird things. But I've noticed I can be asleep, and waking up with my eyes closed and they do a vibration thing. Once I'm up and going, looking at things, they look like they're moving. Right now, this computer screen looks like it's moving back and forth towards me. I was so glad to know that someone else sees this. Also, the feeling like your swaying thing. Gosh I thought it was just me.

I've always worn glasses since 18 months old. I had a lazy eye and had surgery to correct the muscle. I can't really see out of that eye. I see but it's like a static type vision.

I got myself so worked up about 5 years ago and went to the eye doc...which I'm scared to death of now. And I was real panicked and didn't tell her all my symptoms but she did some tests. They found I had some retinal scarring on my good eye but said it was perfectly fine and could be from my skin pigmentation or just born with it. I didn't like that explanation.

Anyway, my problem is I don't tell anyone. I sort of tell my family sometimes but they shake it off as me being a worrier. I do have several migraines a year. And they are the aura migraines. Let me tell you, those can be something quite scary. I've gotten a little better about not freaking out with them. But I sure hate getting them.

I've gotten now where I avoid going most places. I like to be in a darker room because I feel my eyes don't do as many freaky things. I'm scared to get away from the house. I don't like to drive anywhere because the road is always jumpy and fuzzy. The days when my vision feels really jumpy and shaky, I sometimes get really nautious headaches.

Well I could go on and on and on but I'll leave for now. I have many many other visual symptoms. I'm just so scared to go to a doc. I fear losing my sight or having a tumor. But I feel like each day it gets so much worse and I feel like I can't take it and need to go the doc but am scared!

I feel that if I were to go to the doc and ruled out tumor or any major problem, that I might get better. Sometimes I think that maybe stress and anxiety over it may make it worse. I don't know..I just know I've GOT to do something.


i would have to agree with you...you do need to pursue some sort of treatment and go back to the docs. if your problem (as you stated it may have started when you had a migraine a long time ago) is as simple asMAV, you can be treated with medications. don't be scared! i have been to seems like evey kind of doc out there, and i'm still going and pursuing more opinions and researching all the time it seems.i am not going to stop until this goes away completely!! do you still have migraines? have any of the docs gave you any diagnosis? been to a neurologist??? you definitely should go and give it a shot to get your life back. it is scary though, but its worth it if you can be back to normal again. are your symptoms CONSTANT? have they ever gone away at all? i feel for you, i know how htis can make you feel crazy and anxious. it makes life so much more difficult. the only thing i can do is just go about life as if it doesnt affect me...i still go to college, work, go to stores, out to eat with pals, etc. (now that the worst dizziness is over). i think that is what has helped me improve to where i am at least a little better than the beginning 8 months ago...even though im still not me. please go see another specialist--ya never know!!

Hi. I am so thankful to have found you. I have had these vision disturbances for 2 1/2 weeks straight now. I was hit with the following:

1. Altered Vision - things look slightly grainy, bright lights, especially flourescent lights, make everything look very "dreamy" and slightly "unclear" even though I can see and have 20/20 vision. An Eye doctor could only find slightly buldging optic nerves but thought it could be a normal variant. Objects appear to be slightly swaying. No particular pattern. It just depends on the moment. No rotational vertigo. The symptoms are WORSE when I lie down still, stand or sit still, or try to focus on an object. These symptoms are exasberated in bright lights or flourescent lights. If I try to focus on one object, I can do it pretty well, but my peripheral vision appears very "dreamy" during this. It becomes almost impossible, however, to focus on multiple objects at once, especially under bright lights or flourescent lights. Going to a supermarket, blockbuster video, a doctors office is the WORST. I do best on cloudy days, and very low lighting conditions. Even though I have 20/20 vision, I can't see anyone walking in the road while I drive as the bright lights completely consume me and my eyes can't adjust anymore. As far as the motion is concerned, I do best while actually moving in a vehicle or driving, and I am worst when I am sitting still.

2. Slight dizziness - this could be the vision thing, mascarading as "dizziness". Tough to say. Regardless, this general unsteadiness is felt, so I call it dizziness

3. Constipation/slight nausea - has gotten better, somewhat subsided over the 2 weeks.

All 3 of those symptoms came at once. since then, I'm getting pain just above my eyebrows, some moderate headaches that go away with rest, and some slight discomfort in my left ear.

This non-stop episode came after 1 month of non-stop anxiety/stressful situations. I had a A LOT going on. And the last straw, was the day before the episode hit. I got a flat tire in the doctors office where I was taking my son (who is disabled), and my jack was broken. It took my 2 hours to get the tire fixed and it was very cold and windy out. The next day, WHAM!!! And it's been this way ever since. My diet has also been horrible for the past year or so, eating Burger King/Wendy's every day, sometimes for 2 out of my 3 meals for the day.

I personally believe that the anxiety/stress brought on this episode. I'm not saying it CAUSED it, but it definitely triggered it. There was nothing else besides stress and diet that could have done this. All testing has been normal, and I've been to the same doctors as most of you. I have a balance test on Monday, which I'm sure will be mostly normal, or will have some sort of obscure diagnosis but I would imagine will not bring much light to this.

I would love to hear from those of you who are only having the vision disturbance (slight dizziness, bright/flourescent lights make vision "dreamy", slight to moderate motion of objects, improvements while driving, but worse while staying still. Better in open spaces, but worse in enclosed spaces) and maybe some nausea or digestive problem. If you are having rotational vertigo with vomiting, you most likely have something else. I would also like to know if those of you who are experiencing this, even if it has been a few years now, are natural born worriers/anxious people. I believe there is SOME sort of connection there. Even if you have not had "anxiety or panic attacks", but you are very worried all the time, consumed by anxiety, maybe depression too, please say so. I think there is a correlation here. Maybe not the cause, but certainly a trigger. And if it IS a trigger, what is the mechanism doing this? Perhaps THEN we will have our answer. The brain is very very powerful. How we think can absolutely affect our health. This is proven. This is why the "placebo effect" works. People believe they are getting better, and in turn, either get better, or at least FEEL better. Perhaps the constant worry/anxiety causes changes in brain composition/hormones that ultimately lead to this visual disorientation "syndrome". since diet can also impact the brain/chemicals, as well as environmental factors, there HAS to be a common mechanisms. The doctors either don't want to or can't help us figure it out. so WE have to. I read that some of you have had remissions of this visiual disturbance only to come back again. That's still a VERY good sign. It means that this CAN go away, or be reversed. But if the underlying cause is not fixed, it would most certainly come back. I would love to hear from those of you suffering with this so we can look for common triggers/causes.

For me, here is what I have uncovered thus far:

1. Anxiety/Panic/Worry/Stress/Depression - seems to trigger the actual event
2. Dietary considerations - mine was horrible. I was having low blood sugar episodes, anxiety caused by high carb/sugar eating.
3. Environmental - I haven't identified any for me personally but I'm looking to see if anything can be found there.
4. Structural - I have osteoporosis, neck/back pain, and was found to have degenerative arthritis in my neck.

Thanks very much for reading my lengthy post. I'm glad to have found you. I thought I was the only one!
Rich

Hi. I am so thankful to have found you. I have had these vision disturbances for 2 1/2 weeks straight now. I was hit with the following:

1. Altered Vision - things look slightly grainy, bright lights, especially flourescent lights, make everything look very "dreamy" and slightly "unclear" even though I can see and have 20/20 vision. An Eye doctor could only find slightly buldging optic nerves but thought it could be a normal variant. Objects appear to be slightly swaying. No particular pattern. It just depends on the moment. No rotational vertigo. The symptoms are WORSE when I lie down still, stand or sit still, or try to focus on an object. These symptoms are exasberated in bright lights or flourescent lights. If I try to focus on one object, I can do it pretty well, but my peripheral vision appears very "dreamy" during this. It becomes almost impossible, however, to focus on multiple objects at once, especially under bright lights or flourescent lights. Going to a supermarket, blockbuster video, a doctors office is the WORST. I do best on cloudy days, and very low lighting conditions. Even though I have 20/20 vision, I can't see anyone walking in the road while I drive as the bright lights completely consume me and my eyes can't adjust anymore. As far as the motion is concerned, I do best while actually moving in a vehicle or driving, and I am worst when I am sitting still.

2. Slight dizziness - this could be the vision thing, mascarading as "dizziness". Tough to say. Regardless, this general unsteadiness is felt, so I call it dizziness

3. Constipation/slight nausea - has gotten better, somewhat subsided over the 2 weeks.

All 3 of those symptoms came at once. since then, I'm getting pain just above my eyebrows, some moderate headaches that go away with rest, and some slight discomfort in my left ear.

This non-stop episode came after 1 month of non-stop anxiety/stressful situations. I had a A LOT going on. And the last straw, was the day before the episode hit. I got a flat tire in the doctors office where I was taking my son (who is disabled), and my jack was broken. It took my 2 hours to get the tire fixed and it was very cold and windy out. The next day, WHAM!!! And it's been this way ever since. My diet has also been horrible for the past year or so, eating Burger King/Wendy's every day, sometimes for 2 out of my 3 meals for the day.

I personally believe that the anxiety/stress brought on this episode. I'm not saying it CAUSED it, but it definitely triggered it. There was nothing else besides stress and diet that could have done this. All testing has been normal, and I've been to the same doctors as most of you. I have a balance test on Monday, which I'm sure will be mostly normal, or will have some sort of obscure diagnosis but I would imagine will not bring much light to this.

I would love to hear from those of you who are only having the vision disturbance (slight dizziness, bright/flourescent lights make vision "dreamy", slight to moderate motion of objects, improvements while driving, but worse while staying still. Better in open spaces, but worse in enclosed spaces) and maybe some nausea or digestive problem. If you are having rotational vertigo with vomiting, you most likely have something else. I would also like to know if those of you who are experiencing this, even if it has been a few years now, are natural born worriers/anxious people. I believe there is SOME sort of connection there. Even if you have not had "anxiety or panic attacks", but you are very worried all the time, consumed by anxiety, maybe depression too, please say so. I think there is a correlation here. Maybe not the cause, but certainly a trigger. And if it IS a trigger, what is the mechanism doing this? Perhaps THEN we will have our answer. The brain is very very powerful. How we think can absolutely affect our health. This is proven. This is why the "placebo effect" works. People believe they are getting better, and in turn, either get better, or at least FEEL better. Perhaps the constant worry/anxiety causes changes in brain composition/hormones that ultimately lead to this visual disorientation "syndrome". since diet can also impact the brain/chemicals, as well as environmental factors, there HAS to be a common mechanisms. The doctors either don't want to or can't help us figure it out. so WE have to. I read that some of you have had remissions of this visiual disturbance only to come back again. That's still a VERY good sign. It means that this CAN go away, or be reversed. But if the underlying cause is not fixed, it would most certainly come back. I would love to hear from those of you suffering with this so we can look for common triggers/causes.

For me, here is what I have uncovered thus far:

1. Anxiety/Panic/Worry/Stress/Depression - seems to trigger the actual event
2. Dietary considerations - mine was horrible. I was having low blood sugar episodes, anxiety caused by high carb/sugar eating.
3. Environmental - I haven't identified any for me personally but I'm looking to see if anything can be found there.
4. Structural - I have osteoporosis, neck/back pain, and was found to have degenerative arthritis in my neck.

Thanks very much for reading my lengthy post. I'm glad to have found you. I thought I was the only one!
Rich


hi rich! glad you found this board, but sorry you have to use it. have you seen to a neurologist or a neuro-otologist? honestly, everything kinda sounds like it may be migraine related "vertigo"--MAV or vestibular migraine. this can be treated, as many board members can attest to, by migraine PREVENTATIVE medications. do you have a history of migraine in yourself or family? it can be induced by stress, migraines can be induced by environmental changes, etc...as well as problems with flourescent lights are a HUGE factor.
question....are you visual issues CONSTANT---never ending?? mine have been constant 24/7 for the past 8 months now and it's worse in peripheral vision or focusing on an object. it almost seems like---for example--if i'm at work and i stare at a can of hairspray in the distance on a shelf, the border or edges of it shake or wave. it's weird though, i can be looking at an object kinda close and it won't be doing it, but i can see the distance or the corner of my eye willhave the shaking vision....I DON"T UNDERSTAND IT!!!

honestly though, you should probably see a good headache specialist, neurologist or neuro-oto. please keep in touch. i have a follow up on monday with my specialist, i will post then. i have been on meds for around 3 months now, with unfortunately, no real progress with my visuals.

hang in there!

Good to hear from you. I never really get headaches to be honest. But as you mentioned, you don't have to have these to have the MAV. However, now, with the sensitivity to light, I now get a small headache here and there. When I wake up in the morning, it's gone. But from the light and movement all day, I start to get a bit of a headache. But I wouldn't say that the headache is bed enough to ruin my life. At least right now. I just started wearing sunglasses which has helped tremendously for the "sensitivity" part of things.

I actually made a mistake. My balance test isn't until the 20th of this month!! I'm going to see if I can get it moved up to sooner. This particular doctor specializes in otology, neurotology, skull base surgery, and ENT. Hopefully he can at least figure out where the problem is coming from. I'm beginning to think it's not in my ears at all. Perhaps in the brain. With the vision motion, the mind still perceives it as "dizziness". A good test is for someone normal to make their eyes very wide, then go back to normal, over and over again very fast as well as dart their eyes left and right very fast. I guarantee that person will feel "dizzy" as a result. So perhaps the ears are not affected, which would be great. Inner ear disorders are the most dibiliating because doctors don't know anything about them. They really need to do some research into examination proceedures for the inner ear.

I'm not having the violent spinning either. When this first hit me, the motion was MUCH worse, and it would wake me up out of a sound sleep. I was also decently nauseous. Worst in the morning. Thankfully, those symptoms resolved after 2 weeks. Now I'm just left with the vision problem/motion problem. Miniere's usually comes in spells and they are horrible vertigo attacks with vomiting and nystagmus (eyes literally move in your head, which can be seen by anyone looking at you). I think it's easier for most ENT's who don't have specific knowledge about these conditions to simply say "ear infection" "Miniere's" because they are trained to give you an answer, no matter how far-fetched.

My vision situation is 24/7, and for me, I'm not having those types of waves you are talking about, but to me, objects don't appear to have a solid edge. There's a very light glow or "aura", as I've heard it called, that all objects I look at seem to have. It's very "dreamy" like. And as mentioned, the motion is worse when I sit still or lay down, or when I'm in small rooms. It's better when I'm driving, moderately better when walking or moving, and in large open places. And in general, I may even have gotten slightly better with the vision thing since this all started 2 weeks ago. I'm still doing the low-sodium thing and I'm on the diuretic. Not sure if it's helping or if time just helped me instead. But honestly, I'm afraid to go off it because I don't want the symptoms to return worse like they were before.

I gotta tell you, this is the oddest thing that has EVER happened to me. But I'm convinced that a brain chemical imbalance has at least SOMETHING to do with it. And worry, fear, anxiety, and stress seems to bring it out. Most of us APPEAR to have anxiety or at least a lot of stress and worry as a trait, and sometimes a very traumatic or stressful event triggers the first symptoms it seems. I really want to get to the bottom of this. I think that if we compare notes, especially those of us who have the EXACT same symptoms with nothing additional, I think we may be able to find some common ground on this (if you are having rotational vertigo or hearing that comes and goes, I would imagine it's something different).

I would say that those of us having the following symptoms should really compare and stick together on this:

1. Vision alteration - sensitivity to light, especially flourescence. The appearance of waves, or "aura" in or surrounding objects.
2. An inability to focus on any one particular object. Doing so causes the sensation of motion and the eyes simply can't "lock" on the object. In the early stages, the eyes may feel like they are darting around in your head as you try to look at something or when you close your eyes (but not actually moving when witnessed by a doctor)
3. The motion is better when driving or in a moving vehicle, better in wide open spaces and worse (or at least more noticeable) when sitting or standing still, and in closed spaces
4. Perhaps some stomach discomfort like nausea/constipation
5. Headaches could be present or not.
6. A history of anxiety or stressful event just prior to the attack.

We might even find more common ground than this,...including allergies, poor diet, or general feelings of lethargy, depression, anxiety,.... Anyway. just looking to see how much common ground we actually have here. I would exclude the following symptoms:

1. Rotation vertigo with vomiting
2. Nystagmus (eyes daring back and forth which can be witnessed by an outside person, and not just a sensation felt by the individual)
3. Ear pressure or ear pain. (That doesn't seem to be associated with this from what I can gather
4. Fluid in the ears (must be diagnosed by a specialist ENT. Would indicate possible Miniere's.

I suppose a person having a combination of all of these symptoms could be suffering actually from both conditions but it's just a guess. Anyway, just trying to get the information flowing here to help us. If there is anything that anyone with this problem disagrees with or has additional symptoms I'm not listing, please let us know. I'd be curious as to what they are

Rich

Good to hear from you. I never really get headaches to be honest. However, now, with the sensitivity to light, I now get a small headache here and there. When I wake up, it's gone. But from the light and movement all day, I start to get a bit of a headache. But I wouldn't say that the headache is bed enough to ruin my life. At least right now.

I'm going to have the balance test on monday. This particular doctor is a combination of ENT, neurologist, and a few others. Apparently an emerging field of some kind. Hopefully he can at least figure out where the problem is coming from.

Even though you were diagnosed with this MAV thing, you're not actually having severe "vertigo" right? I know for me, I'm not having any spinning sensations like the bout of labrynthitis I had last year. It's just a generalized unsteadiness either coming from my eyes, giving the ILLUSION that I'm dizzy, OR, I'm having this vision problem, and dizziness coming from my ears/brain as well. Very hard to say if it's one factor or multiple factors. The one thing I'm noticing major now, is pressure just above my eyebrows. However, I squint a lot now because of the light, and I've been crying a lot so lol.....Anyway, I'm trying to keep a good outlook because I am STILL functioning here, it's just uncomfortable. I'm on a low-sodium diet and a diuretic as the first ENT suspected Miniere's which it doesn't seem to be, especially considering it is 24/7 with the vision/unsteadiness. Miniere's usually comes in spells and they are horrible vertigo attacks with vomiting and nystagmus (eyes literally move in your head, which can be seen by anyone looking at you).

My vision situation is 24/7, and for me, I'm not having those types of waves you are talking about, but to me, objects don't appear to have a solid edge. There's a very light glow or "aura" as I've heard it called that all objects I look at have. It's very "dreamy" like. And as mentioned, the motion is worse when I sit still or lay down, or when I'm in small rooms. It's better when I'm driving, moderately better when walking or moving, and in large open places.

I gotta tell you, this is the oddest thing that has EVER happened to me. But I'm convinced that a brain chemical imbalance has at least SOMETHING to do with it. Most of us APPEAR to have anxiety or at least a lot of stress and worry as a trait, and sometimes a very traumatic or stressful event triggers the first symptoms it seems. I really want to get to the bottom of this.

Rich


hey rich! well, with MAV, you don't have to have actual "painful" headaches for migraine to exist but the fact about the light seems to be a huge lightbulb to me in your case. i do not have vertigo or any spinning sensation like that...and i highly doubt you have any form of menieres. the first idiot i went to gave me a diuretic and sent me on my way. i too don'thave spells of vertigo and not one bit of hearing loss...two main points of menieres. at the beginning of this, i did have some swirling sensation, but it was never true "vertigo" violent spinning. i did have a lot of nausea due to the fact my environment was moving around me, my vision has changed qutie a bit from the beginning til now. it was more like a moving in and out, now its the aura as you said, or shaky vision all the time instead. i honestly don't know what to do anymore, other than keep trying. i am soooo much better than the beginning of this 8 months ago, but still not normal. i too had an overload of stress when this all came about, and i am honestly wondering if that caused it all. i have never been an anxious person or had panic attacks til all of this happened...(mine really from the allergic reaction that sent me to the ER). then it really snowballed from there with having attacks and all sorts of horrible living. i do hope your appt monday goes well...keep in touch monday, for both our appts are the same day HA! i am def going to let my doc know about the other few people on here iwth the similar symptoms such as yourself. i am wishing you, as well as everyone else on here, all the best!! there has to be some way out!!!! :angel:

I actually just edited my post just below yours thinking that your post on top was a follow-up to my post below lol. I'm not used to new posts being shown on TOP. I usually see them on the BOTTOM on other message forums lol. Anyway, see below your post for an updated post from me lol. Thanks!

Rich

P.S I actually identified one other symptom. I didn't understand it but now I've pinpointed it. If I look at my computer screen, or anything that has a decent amount of light shining at my eyes, when I leave the screen to look at another object, that light seemingly STAYS in my eyes and I can't see the next object I am trying to view. The pattern of light I saw is super-imposed over the object. Can't believe it took me this long to figure out, but that's the reality of it. No wonder I can see things more clearly in very dim rooms with not a lot of light. When I go out in the day light, light is super-imposed on top of EVERYTHING becase the light is constant from the sun. Well, at least I pin-pointed it. Have you experienced anything like this now that I mention it? it's so strange. Sure, it's normal to probably get that once in a while, especially if looking at a very bright light for a period of time, then trying to look away at another object. The light will stay super-imposed on the object. But usually it's just for a few moments and the light then fades. Same thing here but it takes much longer for this to happen, and it doesn't happen AT ALL when I'm out in the day-light. I always tried to figure out why I could see people, things, and words, but I felt there was a light super-imposed on top of them. Now I know!

well...got back from the specialist 3 month follow-up since i started the nortriptyline. he did as i thought he would, and suggested i go up slowly again every 2 weeks to 40, 50 and to 60 if i don't see anything, we're going to switch. this sucks. i'm already tired as it is with this med, i can't wait to see how 60mg will make me feel:( he said he has seen this in many patients, but i am still discouraged, because he makes it sound like i won't get to 100%, that it will come with age, hormone changes,etc what a crock of $%#@

anyway, i guess i'll start 40 this weekend and go up from there to see if i notice anythnig different.BLAH!!!!

yes richard, i have the weird "after visions" as i call them of objects, and it doesn't even have to be from lights, just objects. i did however, at the beginning of this, have the full pressure in the ears--CONSTANTLy cracking and as if i could't pop them at all to relieve the pain. it was horrible and i felt like i had a head cold for MONTHS. but thankfully, that part is gone most days. i also have some ringing in my ears that come and go very quickly. but have NEVER had it before this. do you have cryptic tonsils?? i do, just trying to make some sort of connection. how about bad astigmatism??? i'm wondering if that can help it be worse???
dunno, figured i'd share to continued "gameplan" for this junk....is it ever going to end??? today's my 8 month "anniversary" of this HAHAHAH what a cruel joke!

I have a bunch of questions for ya if you don't mind.

Isn't that drug just an anti-depressant?? Why did he prescribe that?? Has it done anything for your symptoms?? If so, What effects have you felt from it that you could contribute to "feeling better"? And how did he come to the diagnosis of MAV to begin with?? Just curious how he arrived at that and why he felt it was this as opposed to anything else. It's obviously brain/chemical related to at least SOME degree but I guess doctors don't know why. That's the one thing we all seem to have in common.

I don't have any eye problems or tonsil problems. I AM having slight pressure in the ears, very slight, but just enough that I notice it. I try to "pop" them all the time, to no avail. The ear thing is where I thought it might be "Miniere's" but I'm not having "spells" or "hearing loss" or any new ringing. The ringing that comes and goes as well as the fullness in the ears are symptoms of "Miniere's" but I guess they ruled that out with you for whatever reason. I'd be very curious to know how and why they ruled that out in favor of THIS diagnosis instead.

Today, something very scary happened, but perhaps revealing. I didn't sleep well last night, because my daughter was crying ALL NIGHT, but when I DID finally get to sleep, I slept a little "funny" and woke up with a stiff neck. The EXACT same thing happened to me the day I woke up with all the symptoms to begin with. I had a stiff neck, and I noticed my vision was off and I was slightly "dizzy". Anyway, today, when I got up, I had the same problem with my neck, and when I went to try and "adjust" myself, I became VERY dizzy and my vision changed patterns for the first time since this thing hit me. Instead of having a slight unsteady vision where objects just appear to shift on me in wierd ways, my vision changed to an "up-down" pattern instead. It was VERY VERY VERY uncomfortable. It was like trying to walk while you constantly duck and stand up, duck and stand up, over and over again. That's about the best way I could describe it. Anyway, all I could do was lay down for a few hours because I just couldn't function. After 2-3 hours in bed, I woke back up again and the usual symptoms were back to normal. However, I still felt sort of "light-headed" to a degree, so I went to my chiropractor for an adjustment. Right after, I did feel much better, and objects did not appear to move AS much. It was definitely an approvement. Chiro adjustments usually DO make my symptoms better for a few hours so I have to assume there is something there in the brain, brain stem, or cervical spine that is affected through adjustments. And the fact that when my neck is screwed up it makes my symptoms worse and when it's in alignment, I feel better, definitely puts on a lightbulb in my mind that some of this may actually be "structural". Structure can also affect brain chemicals so it could all be related.

I thought I'd share that with you to see if there was anything there that you experienced as well or to see if maybe there was something you could try that you haven't. Have you tried to do anything dietary wise, supplement wise, or chiropractic wise to help yourself?? Or have you just done the medication? I'd be very curious to know. I check the board several times daily lol since I can't function very well so I'll look for your response and will respond soon after. Next wed is my ENG test so we'll what happens. This is the toughest thing I've dealt with in my entire life. I'm too young for this lol

Rich

hey there! well, they 2 docs ruled out meniere's...im guessing because i've had no hearing loss whatsoever, and i don't have spells. one doc tried to give me the diuretics, and it made things worse...so i quit them, and of course, i thought he was completely wrong in the first place. they are thinking MAV because i've had migraines since the beginning of this--esp with aura and 3-4 headaches. so i guess that's the main reason, and a lack of any other diagnosis. the nortriptyline can be used for anti-depressant, chronic pain reliever, and is also used as a migraine preventative...and it usually one of the first meds they try to use. the only real thing it's done for me is make me have LESS headaches, but not rid them completely. it's done nothing for my eyes YET...

as far as neck stuff, never been to a chiropractor, i've never had neck issues. i've been to a accupuncturist, done herbs, and seen almost every kind of doc under the sun, except an opthamologist...which will be happening soon. i've cut caffiene out of my diet for the most part-abs NO soda at all, and limit chocolate to very small bits...and it's done nothing. seems like i get a stabbing pain shoot down the back of my eye still, even on the meds. i agree being too young to be falling apart, i'm only 26 and trying desperately to finish college with this crap. i can imagine how hard it is for everyone with children on here. we just gotta keep going. i notice my symptoms are WAY worse when i first wake up, i mean the room jerks back and forth or is way more jumpy than normal "aura" of the dreamy kind. i def know what kind of day it'll be just by opening my eyes. i am awaiting the day when i wake up and it doensn't do it anymore...and hope for it to stay that way.

I have a link for you to look at. I think it's VERY close to the kind of movement I am experiencing with motion. This might be slightly exaggerated but not by much. Does this ring any bells??

http://www.migraine-aura.org/content/e27891/e27265/e26585/e48971/e48990/index_en.html

Check out the .gif photo on this page. This is similar to what I see when looking at stationary objects. It's quite annoying.

Looks like we both could perhaps have different mechanisms for creating this as we both seem to have different issues that could have led to this.

It appears that anxiety/stress is a trigger, but INFLAMMATION could be at the root of the problem, depending on where it is. For example, if you have chronic inflammation in your inner ear, that could cause fluid to accumilate there, and WHAM!!, you now have "Miniere's Disease". But using that term does NOTHING to get to the underlying cause, which may be inflammation. And if there IS inflammation, then the TRUE CAUSE is what is CAUSING the inflammation. If I'm right, and that's a factor, finding out what is causing inflammation in us could make this go away. Or, at the very least, if efforts are made to quelch the inflammation with diet, supplements, and stress reduction. Stress increases cortisol levels, which increases inflammation. It dawned on me that if anxiety/stress seems to at least TRIGGER the condition, which it seems to do in a lot of people, I think it would be very reasonable to assume that inflammation is at least playing a role because Cortisol, a hormone in the body which is produced in response to stress, is GROSSLY increased during anxiety/stressful situations. And if one is a compulsive worrier/stresser, cortisol is high all the time, which completely turns the body into an inflammation city!

Are you doing ANYTHING specific in your diet other than eliminate the obvious offenders like caffiene, sugar, alcohol, salt, etc? Do you take any nutritional supplements?

I am now experimenting with what I refer to as an "anti-inflammatory diet" as well as adding supplements known for very powerful anti-oxidant and anti-inflammatory actions. At one time, in my early 20's, I studied nutrition and applied it to treat chronic pain in my neck and back. I succedded to a very large degree just with diet, exercise, chiropractic and supplements. But, after a while, I felt so good, I started eating anything I wanted. And that "anything" turned out to be Burgerking and Wendy's every day. I believe I set the stage for more problems. So I'm re-adjusting my diet.

I'm only eating home-cooked meals, cooked fresh at each meal. No microwaves. The meat/chicken I am eating is organic/grass-fed. The Grass-fed varieties are lower in saturated fats, Omega 6 and 9 fats (pro-inflammatory) and higher in Omega 3 fats (anti-inflammatory). I'm staying low on the sugary carbs, even if considered "healthy", as increased blood sugar leads to increased insulin levels which increases inflammation. So essentially, my diet is low salt, low carb, low omega 6 and 9. I'm supplementing with Green Tea, Grape Seed Extract, high doses of fish oil, a very powerful but balanced multi-vitamin/mineral, probiotics (70% of the immune system is located in and around the digestive tract so the ecology there HAS to be good in order to be healthy), and 2 whole-food supplements (meaning they are not isolated vitamins but supplements made from concentrated whole foods). One Vegetable and one fruit.

I just started all this recently and I'm increasing my supplements slowly to the appropriate dosages. At the same time, every day I am trying to improve my diet towards anti-inflammatory and high anti-oxidant. I believe that if I don't do something pro-active, I just don't see the doctors doing it for me. Anyway, I thought I would mention that. Perhaps if you tried something similar, you might get faster results? It would be interesting to see if you got any improvements from this. I would also recommend seeing a "complimentary doctor" who can test for vitamin deficiencies, heavy metals, food allergies, hormone levels and so on. These all affect our body/brain chemistries. My results showed high aluminum, VERY low vitamin D, which could explain why I have such fragile bones at only 32, and it also showed high anxiety on a stress test so no doubt that inflammation is sucking away at me. Anyway, this is a long post but I thought these were worth mentioning. Talk to you real soon. I hope you continue to correspond with me. :-)

Rich

P.S I should also add that it's the same for me as well. First thing in the morning is worst, and by night-time, I am the most functionable. But unfortunately, by the time I can handle the symptoms, I'm ready for bed again. I think it's because during the night with the body lying still, our eyes closed, and completely relaxed, the nervous system gets "lazy". so when we wake up, we're not as accustomed to our surroundings. But as time goes by during the day, our brains learn to handle the symptoms and we can deal better. That's my theory anyway lol

Is yall's peripheral vision jumpy. I am looking at the computer right now and the base of my lamp to the left is jumpy or going in and out of a blindspot...something of the sort. It's so stressful. Checkered curtains, blinds, the vertical lines of keys on my laptop are all jumpy. Is this for anyone else too?

Is yall's peripheral vision jumpy. I am looking at the computer right now and the base of my lamp to the left is jumpy or going in and out of a blindspot...something of the sort. It's so stressful. Checkered curtains, blinds, the vertical lines of keys on my laptop are all jumpy. Is this for anyone else too?

yes, it's in my peripheral vision as well...seems to be worse there...?dunno why though.

Peripheral and kinda at the bottom sometimes..And in the dark there is so much shakiness...or when I'm sleeping or right when I'm waking up, with my eyes closed...everything's shaking sometimes. I've never went to the doctor..too scared. Well my eye doc said I had some retinal scarring with no explanation. But no other doctor. I have bad blindspots too. I have a history of migraines with aura.

It seems that all of our "visual" components here are similar yet somewhat different too. For example, I do best in the dark and with my eyes closed as the shakiness is not so bad. And i don't think I have a true "shake" but instead a mild "shift". All objects in my vision simply shift in oblong ways so nothing ever appears to stand still for me.

Tweet, would you consider yourself a worrisome, stressful person as well? Of course just HAVING our problems would make ANYONE stressed but I'm just talking about in geneal. I really think the problem is brain/chemical related.

Rich

p.s I have no problems with peripheral vision. ALL objects appear to move to me, although far less if I am moving myself.

Richard....Yes I am very much so a worrier. I always have been. As I child I just knew I'd get appendicitis. I was scared to death a tornado would come. I have always been obsessed over a particular fear. And just fearful in general. This really did all start after the first time I got a migraine. I don't know if I was so worried and now I am just overly sensitive to everything.

Of course I always worry it may be a tumor or that I'll lose my sight. I was born with a lazy eye so my right eye doesn't really "see" anyway. It's just fuzzy vision.

I really think some of it is worry/anxiety related. Like my blindspots that I know are larger than the normal blindspot, I notice more if I'm thinking about it that day. I don't know, everyday is just such a challenge.

I don't tell anyone because I'm so scared to go to the doctor but sometimes I'll mention a thing or two about my vision, but I think everyone just shrugs it off as anxiety. But these visual problems are so real to me. They can't completely be from worrying.

I do get several aura migraines a year. So I'd say a common factor for us all is anxiety and migraines. But heck, how could a migraine NOT worry you? Although my sister's had them for years. And hers are way more often than mine and she just goes on about her day. Even works with one. Not me! I spend the time trying to calm myself down.

Anyhow, I've tried to not worry myself so much. And it's like when I'm outside and see all the bright fast swirling squiggles in the sky. I'm not worrying. Those are just always there.

I'm glad you told me. I think the anxiety/worry is at the root of it. It's the ONLY common factor we all seem to have. I don't believe I would have been hit with this senerio if I had done something about my anxiety years ago. I also don't believe I'll get better unless I do something about the anxiety. If that means medication for a while, then so be it.

There are very few things out there that are natural that are strong enough to change your brain chemistry. I have often been convinced by naturalists (chiropractors, nutritionists, etc,..) NEVER to take an anti-anxiety medication when I was on the verge of taking the plunge and trying it. That it will just cause more problems than good. They recommend things like yoga, meditation, etc, but for people with brain chemistries like ours, those are not often good enough on their own. I know, because I tried. I think that in the short run, a course of anti-anxiety meds might help take the edge off while we work on our emotional factors that are causing us to worry all the time. I ordered Lucinda Bassett's "stress and anxiety" program which supposedly helps with dealing with the way our minds process information. But at the same time, I plan on taking the anti-anxiety med prescribed by my doctor (as soon as I'm done with the ENG test next week) while I study the course and work on my emotional factors. My diet is pristine now, and even though I sometimes wake up in the middle of the night with panic attacks (like I did last night), I think the anxiety med will help quelch that so I can get a good nights sleep. Our symptoms are easier to deal with after 10 hours of good sleep. I honestly believe now that if I don't do something about the anxiety, the symptoms will never fully go away. That's why I'm not surprised to hear that people have this even after years.

<<removed>>>

NCR is a technique of improving the structure of the skull through manipulation of the sphenoid bones in the skull (the main balance plates in the head). When structure is improved, EVERYTHING is improved including blood flow, brain chemicals as they become more even, pain problems, and even migranes. I have actually done a course of treatment several years ago, which helped the stiffness in my neck and back like you wouldn't believe, and as a side-effect, it acted like an anti-anxiety drug for about 2 weeks after the treatment. It really calmed me down for some reason. It is so powerful, it actually changes the structure of your skull, face, and posture over time. There are photos you can look at on-line that are pretty unbelievable. Anyway, I thought I'd mention it, in case any of you wanted to give it a try. I plan on going for the full set of 8 treatments, as I just found a doctor near me. First I want to make sure that there is nothing going on that would be contraindicated to do it, but so far, nothing can be found. So I might take the plunge.

Over the course of the past week or so, the motion has slowed down somewhat which is a relief. Objects still appear to move, but it is far less than it was. Perhaps what I am doing is working. I have no intention on suffering with this for years. I'm sharing my experiences because maybe you can take something from this to try yourself, and vice versa. Maybe there's something YOU guys are doing that is working that I may try. Nobody else understands us, so we need to stick together.

Rich

Hi all,

Just wondering if anyone found out anything more on this subject, as I've had constantly flickering, vibrating vision as described here for five months now. I've seen an ophthalmologist and a neurologist, and had an MRI scan, but nothing appears to be 'wrong'. The phenomenon is very real, though, with me absolutely 24/7, and very distressing. It's like the edges of things are being 'plucked' and vibrating like guitar strings, and it gets worse looking at parallel lines (radiators racks of CDs, etc), although I do get it on single edges too.

I've also had tinnitus for about 20 years, and it's got much worse in my right ear over the last month or so, but I guess I'm putting that down to the anxiety caused by the visual thing. Worrying nonetheless...

So, anyone got any progress to report?

Thanks,

D0gstar

Well, I finally got the right diagnosis after a month of this nonsense. Migraines!! There are different forms. The doctor didn't say it, but I believe I have what is called "migraine with aura". One does not have to have the headaches in order to get this. I personally don't have the headaches, THANK GOD!! But the jumpy and shaky vision is CLASSIC of migraines. I suspected this myself after finding an article on Migraine Variant Vertigo. Dizziness can also be a symptom as can tinnitus, fullness in the ears, headaches, and sensitivity to light and noise. I had a VNG test done (better version of the ENG test for balance) and passed it with flying colors so it is NOT in my inner ear. But the balance mechanisms in the ear/brain are very closely related. I am starting on an anti-migraine medicine tomorrow.

I think the way to beat this thing is to identify the triggers. For most people, something triggers the attacks to happen. Stress/anxiety are big ones, as is a lack of uniform sleep, and nutritional factors. I personally am attacking every single one of these. My symptoms were 75% better until the past 2 days, when I didn't sleep well because my kids kept me up all night. now the motion is worse again. But I'm not panicking. I know WHY it's happening now. Migraines and Migraines with Aura (like I suspect others with vision problems here could have, that is, if MRI's are negative and the eye doctors can't find anything as well as ENT's) are actually VERY common. Some people get only the headache, while others get only the aura, and others get both. I have only the aura (vision, dizziness, motion problems). I hope this info helps some of you to start looking into you own personal causes.

I still believe inflammation is a huge factor, but other things could be present. Anyway, that's the update!

Rich

Hi Rich,

Great to hear that you've got some kind of conclusion! Unfortunately, my specific problem doesn't come in attacks - my vision is 'on the move' 24/7, so unless I've been having a migraine constantly since October last year, I guess that would rule it out as a possible cause. Ah well, the quest for answers (and to get doctors to take me seriously) continues, I guess... ;-)

Thanks,

D0gstar

Yeah same here..it would have to be a constant 24/7 for the past 10 years migraine for me. haha

Oh no, don't get me wrong. My vision impairment (objects appearing to move, sensitivity to light, etc,) is 24/7, absolutely! No question. My doctor believes this is "migraine with aura". Look it up. The symptoms are DEAD on to what we are experiencing. AND, we don't have to have the headache pain to have this. I'm going to take the plunge and try the migraine medication that he prescribed. The side-effects might be a little intolerable considering it's an anti-seizure medication but if the "aura" goes away, then I think it's safe to say that it is "silent migraine" or "migraine with aura" (same thing really).

People suffer migraines in either attacks, or can have them consistently. Whatever we have, it's in the brain. Unless anyone is experiencing "ear" symptoms, I would bet that this is probably true to some extent in all of us. Anyone here have pressure in the ears at the same time or any kind of hearing problems? I passed my ENG test (actually had the VNG test which is better than the ENG) and it showed normal inner ear function. There's not a whole lot of other places a problem like this could come from. The VNG test, neurologist, ENT doctor, AND eye doctor confirmed I do not have "nystamus", which is rapid eye movement. And the eye doctor found absolutely nothing wrong. If it's not in the eyes and not in the ears, it's in the brain. Anyway, I'll be sure to let you know if the drug helps.

Rich

p.s What are ALL your symptoms? And for those of you who have had this for more than a year, what have you done about it? have your gotten a proper diagnosis? Have you tried various drug therapies to at least see if you respond? My guess is that the longer you let your brain stay in this state, the longer it will take or the harder it will be to break the cycle

DOgstar, your symptoms appear to be that of "visual migraine". Look it up. I think you will be agree that this sounds very much like what you, and the rest of us, are going through. It comes from the brain. It's caused by a disruption of the neurotransmitter serotonin. If your neurotransmitters are out of whack, you will have the symptoms 24/7 like I do as well lol. You might find that certain things make you worse, or trigger worse attacks, but triggers are not the CAUSE of the problem. It's a brain/chemical imbalance. Find a neurotologist that is qualified to know the symptoms of visiual migraine and if he doesn't find any inner ear connection or something else in your brain (tumor or the alike), then it is a strong possibility that this is what you are dealing with. Just a thought.

There is only ONE therapy that I know of, that NATURALLY restores the balance of neurotransmitters in the brain by optimizing the shape of your skull, and allowing your brain to balance itself. It's called Neurocranial Restructuring. The photo results are amazing. I have had the treatment done once many years ago for neck/back pain, and as a side-effect, it chilled out my anxiety for almost a month straight without any drugs. It was powerful. The results are accumalitive so it takes sometimes 4-8 four-day sessions to get the results. I plan on doing a complete 8 series to see if it will finally balance out my brain chemistry. But before I do, I will give the Topamx a try. If it gets better, at LEAST it will indicate that this is indeed a migraine

Rich

Is this 100% visual for you or do you feel a sense of "dizziness" or "unsteadiness" along with it?

Rich

I would like to know if there is ANYONE out there that has successfully gotten rid of these CONSTANT jumpy vision symptoms with meds?!?!? i am at 40mg of the nortriptyline and nothing has changed yet....pissin me off. anyone get a proper diagnosis with proper treatment????? I'm just getting very frustrated. I have my opthamologist appt in 2 weeks, and hopefully can be referred to a neuro-opthamologist for another opinion.

any thoughts?

hi everyone i havent posted in a while. richard the the website you showed me is exactly what i see but not as severe. every thing moves shifts and jiumps. I have had this for almost 3 years constant 24/7 yes mine is better with motion best in the car ok when walking etc. staying absolutly still and trying to focus is the worst. also like the picture everything with defintive line will sway one way while the the thing next to it will sway another way i have been to many doctors about this including neurologist many test done. no answers. I think anxiety has something to do with this too mine all started with an anxiety attack very first one even though i have always been a worry wort

hi,hope you get better soon,im new on here and cant beleive all these people who have these symptoms,i thought i was the only one,i have had test after test done,blood,urine diabetes tests,scans the lot,im frustrated because doctors are just scratching their head and telling me its anxiety or depression,i get shaky vision,when walking or running,i get lots of light headedness,dizziness and my vision is like watching an old western film,as a specialist said to me 8 yr ago,i have not felt right in 15 yr,it ruins my life,i cant or wont be able to enjoy the nice things in life until this goes away,i get lots of visual triggers which make lightness or dizzieness worse,ie, not enough sleep,bright lights,computer screens,my balance is terrible at times,i havent even been on a plane yet,im nearly 40 and havnt enjoyed the please of going abroad because i worry about dizziness lightness every day,i think now i suffer from slight depression and anxiety due to all this worry every day,is anyone else familiar with these symptons,they really are ruining my life,thanks to all:(

I would like to know if there is ANYONE out there that has successfully gotten rid of these CONSTANT jumpy vision symptoms with meds?!?!? i am at 40mg of the nortriptyline and nothing has changed yet....pissin me off. anyone get a proper diagnosis with proper treatment????? I'm just getting very frustrated. I have my opthamologist appt in 2 weeks, and hopefully can be referred to a neuro-opthamologist for another opinion.

any thoughts?

You may also want to see a neuro-optometrist or an optometrist that does vision therapy. They look much more at eye function vs. the opthomologists look more at eye health and sight.

You may also want to see a neuro-optometrist or an optometrist that does vision therapy. They look much more at eye function vs. the opthomologists look more at eye health and sight.

thanks so much for your reply:) hope all is great with you! you still doin well? i will definitely keep that in mind when i go for my appt with the initial opthamologist. i went to the optometrist at the beginning of this and they thought neuro-opthamologist...this is the first mention of a neuro-optometrist i've heard of...who knew lol! is that the doc that got you straightened out for the most part? i know your issues started before the dizzy junk, but i just hope something will straighten me out soon...headin toward the 9 month mark here in aobut 12 days...UGH!!!

thanks so much for your reply:) hope all is great with you! you still doin well? i will definitely keep that in mind when i go for my appt with the initial opthamologist. i went to the optometrist at the beginning of this and they thought neuro-opthamologist...this is the first mention of a neuro-optometrist i've heard of...who knew lol! is that the doc that got you straightened out for the most part? i know your issues started before the dizzy junk, but i just hope something will straighten me out soon...headin toward the 9 month mark here in aobut 12 days...UGH!!!

I'm still 100% and holding strong! Its been several months now. The vision therapy allowed my eyes to work together and get stronger in order to do the VRTs properly and let them work. So it was the combo for me. Yeah, there are WAY too many specialists in this medical world!!!!!

I've heard "landsickness" (as in "motion sickness") being finally diagnosed for some with the symptoms you are describing. It's the neuro-visual experience as if just getting off a carnival ride or being motion sick or seasick, but it doesn't go away. Worse when lying down, looking at a screen and better when walking. There's an OT (Occupational Therapist or Physical Therapist at UCSF who specializes in "landsickness." It sometimes starts after a boat ride or some other dysregulyating activity, but never resolves. Anxiety is one of the symptoms, rather than the cause.

wow this is amazing, i won't be the fisrt in saying that i thought i was the only one!!! in a way its a relief that there are people experiencing what i see too, however it is slightly depressing that there is no real answer.....yet!

my symptoms are almost exactly the same as those that have been described previously
1. my vision seems to be constantly shifting 24/7. it is like watching an old western film, when i see things in motion it is like every second frame is missing which gives a kind of flashing affect. This makes driving a complete nightmare as things in my periferals seem to be jumping all over the place and it is hard for me to tell how far away i am fom a car (the motorway is hell!!). My vision looks a lot like stop-motion animation films eg. the nightmare before christmas.
2. i cannot concentrate on more than one object at a time, if i try to it seems like all the objects are fighting for focus and none of them getting it
3. my vision seems to be vibrating as though there is something behind my eyes (at first i thought this was my heart beat from the attery behind my eyes however the vibrations are not always in sync with my eyes)
4. the vitreos gel in my eyes beat sometimes with the beat of my heart. and the beat of my heart is very present always, it seems to make my whole body shake or vibrate.
5. i feel tired all the time
6. my vision is worse when i am laying down but it is at its worst when i am driving (this is in fact how it first appeared to me)
7. i also have a lot of floaters in my eyes, these are like small strings of shadow in my eyes. no one has described this yet so im not sure if its related. apparently everyone has some and can not always notice them but an opthomologist told me i had a lot for my young age and even worse they will stay with me for life.

i first got this problem about 5 weeks ago, my doctor diagnosed me with an inner ear infection or migrane and then anxiety when i had to go back for another answer. i stopped going to her because she would talk to me as if i was making it all up. i went to a homeopathic doctor 5 days after the onset, (the first 5 days were by far the worst) i was givin these pills called OCUCLEAR (developed by doctors) which almost totally restored my vision for 3 weeks, i was over the moon. however in the past 2 weeks it has started to come back, it is as if i have built an immunity to the ocuclear. I still take these pills everyday in the hope that they will stop it again. my homeopathic doctor also said that the eyes and the skin are the first thing to be affected when you have an unhealthy liver, apparently your eyes and liver figh