Hi does anyone have this diagnosis ?

I have read up on all the different inner ear problems and this one decribes my symptoms 100%. Also I have the feeling of being pushed down to one side (pulsion).

My appointment is the 3rd septemember with the audiologist, Iam feeling anxious.

Hi

Oscillopsia is not a diagnosis, it's a symptom, usually related to bilateral vestibular dysfunction, but much more common to unilateral injuries than most people said.

Moving objects from side to side and up(mostly) or "jumping vision" are the most common issues with this.

The pulling down(left, right, front or back) is also common, and both things are part of the typical vestibular symptoms, so don't worry, they're a bummer, pretty upseting, but quite in the harmless and normal range..

Hope your Audiologyst session gives you more info on this.

just found this old post of mine and am surprised because now I have had testing (this week) turns out I do have bilateral vestibular dysfunction !!!

My caloric test confirmed this.

Yesturday the hospital phoned me and asked me to visit my consultant this Tuesday .

What will happen next ? will I get pills to help me ?
I am feeling so alone with all this, please can any one tell me more about
bilateral vestibular ?

just found this old post of mine and am surprised because now I have had testing (this week) turns out I do have bilateral vestibular dysfunction !!!

My caloric test confirmed this.

Yesturday the hospital phoned me and asked me to visit my consultant this Tuesday .

What will happen next ? will I get pills to help me ?
I am feeling so alone with all this, please can any one tell me more about
bilateral vestibular ?

You can do vestibular rehab to strengthen your other sensory systems (vision and proprioception) and maximize your compensation. Bilateral dysfunction can take longer to compensate and does have less improvement with the therapy, but it can help a lot. Good luck to you!

thanks joni , I was thinking it couldnt get better so there is some hope I suppose.Also they said I am low functioning , so I take it I have some function there ? if this is the case (will find out tuesday) can I work on what function i do have ?

many thanks for listening

MSNK...I know of a woman who caught a virus when she was pregnant and has bilateral dysfunction. She is back to work full time! She has been doing vrts for over 1 year...

Don't give up.

thank you for telling me that charlotte, it means alot to me to hear positive stories like this.I am struggling to do any work at the moment( i do 3 hours ).
I dont know how I got like this,I have had loads of antibiotics in the past and viruses. I hope my consultant will know how I got like this because I feel I need to know WHY ?

TAKE CARE

Hey, I totally understand. Heck, I feel the same way...I still don't feel 100% yet...and it has changed my life.

Just know that you can have plenty of colds/virus and they don't hit your ear. Then one day one does...that is what happened to me.

I know it stinks.

msnk....are you still dealing with oscillopsia? if so, how long has it been for you now? i have the horrible vision issues and it is about to drive me insane--along with the funny "off" feeling, imbalance, popping ears..blah blah blah....
hope you are better than the beginning of this?!?:)

Hi Alex , it has been 5 years for me now because my gp kept telling me it was anxiety ! Over them 5 years I would say I am 5 - 10% better than I used to be BUT Its still totally exhausting. When i walk down the street I feel like I am in a fuzzy world with things jumping in my vision, infact things jump so VERY fast that it terrifies me, I also feel like I cant walk straight and I am tired all the time because of the strain on my eyes.
Do you have this same problem Alex ? What diagnosis do you have ?

Hi Alex , it has been 5 years for me now because my gp kept telling me it was anxiety ! Over them 5 years I would say I am 5 - 10% better than I used to be BUT Its still totally exhausting. When i walk down the street I feel like I am in a fuzzy world with things jumping in my vision, infact things jump so VERY fast that it terrifies me, I also feel like I cant walk straight and I am tired all the time because of the strain on my eyes.
Do you have this same problem Alex ? What diagnosis do you have ?

hey, thanks for the reply! sorry to hear you have been dealing with this for so long---it is exhausting for me and i'm at 4 months. i don't really have a set in stone diagnosis as of yet, but the specialist is leaning toward MAV at this point, until the vestibular tests are done on the 25th. Mine is more like jumpy, shaky vision all day 24/7 even sitting still looking at something. I just dont understand how it could all be related to just migraine--uggh. i guess i will have to try my preventatives and see how it goes. Is yours just when you walk or all the time like myself? this is extremely frustrating, and all the other drs thought it was central nervous system related...but got my B12 up to where it needs to be and my brain MRI, EEG, and c/t scans came back fine--so whatever. good luck to you, let me know how things go...i know i just keep hoping to wake up like myself again. Do you have any other symptoms like the "off" feeling, lightheaded, ear stuff/pain/stuffiness?

yep , i get a pressure in my ears sometimes and buzzing,i will let u know what the consultant tells me on tuesday.
He was thinking i have mav but now i have bilateral vest dysfunction , im not sure ?
I have it all the time just like you do but walking is very difficult.
Your symptoms do sound vey much like mine, we must keep in touch!


xxx

looking forward to what your consulant has to say....and i will update you with the vestibular tests after the 25th or if i go ahead and start on the preventative for mav sooner. good luck to us!:D

please let me know what preventative you try and if it helps.
Good luck.

please let me know what preventative you try and if it helps.
Good luck.

hey! i was prescribed neurontin or gabapentin. adamw on here is using that or had used it and is successful in treatment of MAV....however, i am unsure if this will help with our oscillopsia??
i will let you know!

I really hope and pray it works for you and will take a note of it to my consultant if he says I do still have mav, although I just cant get my head around the fact that Mav could cause Bilateral vestibular loss?

Here I have listed the questions I have written down to ask my consultant....
please can you tell me if I have missed anything .......

1) Why do I have low function in both ears ?
2) How much function do I have left ?
3) Is it true that I will never regain 100% ?
4) How much improvement can I gain from VRTS ?
5) can I have therapy here at the hospital ?
6) Because its been 5 years can I still improve ?
7) Do you still think I have MAV ?

Then discuss some more about my history ....

ie:when I was 19 years old I used to hear my own voice and breathing in my head and my ears were both blocked for 3 months, think it was eustation tube dysfunction so could that of damaged me ? And do I still have it ?

why do I hear my own pulse in my left ear ?


thanks for reading xxx

Yes MAV can most definitely cause bilateral vestibular dysfunction. If your hearing is still intact it is a likely cause.

Many of the syndromes that cause bilateral vestibular dysfunction also cause bilateral deafness.

You can still benefit greatly from preventatives if migraine is the cause regardless of whether you have no peripheral dysfunction, unilateral dysfunction or bilateral dysfunction.

Thanks for that Adam , my hearing is stil intact so I suppose it must be MAV ( i read its rare) but obviously reading these boards its not so rare after all.

I have the symptoms all the time , it really is crippling .
I hardly get headaches , just sometimes.
what are preventatives exactly ?
I read somewhere about propranalol but It makes me feel like my head hurts .

feeling very tearfull today ,any info much appreciated.

xxx

I have also read that gentamicin drugs can cause Bilateral vestibular dysfunction,could this be a cause for me ?

I have all my hearing but have taken lots of antibiotics in the past.

I am out of my mind with worry.

mnsk....i feel your worry...especially for you not having an answer after 5 years-- i was upset yesterday, i was not feeling well at all (which isn't unusual) but it sucks especially when you dont feel well on top of all the other junk. i have also read that that particular antibiotic can cause some problems, but i've never taken that specific family...but i did notice all this has gotten worse since i took some cephlacor and had an allergic reaction to it (however, i was already feeling weird when i took it...but it escalated the issue).

i would also ask your doctor if it is MAV and what type of preventative he would suggest. Preventatives are not the same as abortives (such as immatrex--those are just to treat it when it happens). Preventatives are supposed to nip this thing in the butt, from what i understand--or at least help once you find the right one for you. i still just dont understand how it is every single day, and the vision issues especially. but i am going for the preventative he gave me and see what happens.

i wish you the best of luck with all this, and i will definitely keep you updated with how things go...but i am still waiting to see if i have loss from the vestibular testing on the 25th...i am very anxious to see what comes of that.

hang in there....i know it is soooo hard...but i think with the right treatment, you can be back to where you should be!!!

mnsk....i feel your worry...especially for you not having an answer after 5 years-- i was upset yesterday, i was not feeling well at all (which isn't unusual) but it sucks especially when you dont feel well on top of all the other junk. i have also read that that particular antibiotic can cause some problems, but i've never taken that specific family...but i did notice all this has gotten worse since i took some cephlacor and had an allergic reaction to it (however, i was already feeling weird when i took it...but it escalated the issue).

i would also ask your doctor if it is MAV and what type of preventative he would suggest. Preventatives are not the same as abortives (such as immatrex--those are just to treat it when it happens). Preventatives are supposed to nip this thing in the butt, from what i understand--or at least help once you find the right one for you. i still just dont understand how it is every single day, and the vision issues especially. but i am going for the preventative he gave me and see what happens.

i wish you the best of luck with all this, and i will definitely keep you updated with how things go...but i am still waiting to see if i have loss from the vestibular testing on the 25th...i am very anxious to see what comes of that.

hang in there....i know it is soooo hard...but i think with the right treatment, you can be back to where you should be!!!:angel:

what antibiotics have you taken?

most of them are fine.. very few of them are ototoxic.. gentamicin is the major one that causes ototoxicity but that antibiotic is only usually used for very severe infections after back surgery etc.

what antibiotics have you taken?

most of them are fine.. very few of them are ototoxic.. gentamicin is the major one that causes ototoxicity but that antibiotic is only usually used for very severe infections after back surgery etc.

well, at the beginning week of all this...i was feeling "off" and a tad dizzy as i had before with ear infections. well, went to my pcp who is not that bright, and thought it was an inner ear infection (which from what everything says, can't be treated with antibiotics). anyway, he prescribed me cephlacor, an that is when i had a severe reaction and landed me in the ER. from then, things escalated--i had bad dizziness for a while...and now i have the constant vision issues with imbalance--and sudden moments of dizziness or lightheadedness (all with irritating ear issues-popping, ETD, ringing, etc). i have never had a reaction to cephalosporins before, but i guess i just built an immunity to it--an my family is allergic to penicillin--so who knew:( i am just wondering too...all this started with mold in my apt....and i haven't been able to move yet....hmmmm????

alex that is horrible being allergic to an antibiotic and ending up in hospital !
poor you, sounded terrible.

I am allergic to penacillin because it makes my breathing tube close up.
I am prone to infections alots it seems, I have taken pills for

urinary infection. (4 times)
saliva gland infection. (3 times)
h.plyori infection. (once using 3 different types of antibiotics))
chest infection. (5 times)
eye infection. (once)
ear infection. ( 5 times)
tooth infection. (twice)

Adam , I have never taken gentamicin ,I read that it is only used intravanously , which I have never had , or no back surgery.
I havent found any info online about Mav causing bilateral damage,yet I am thinking I cant have meniers because I have symptoms most of the time and my hearing is ok. If it was a virus that caused it , wouldnt that damage my hearing ?

sorry so many questions,
takecare
xxx

phoned the hosptial today because i have been so distressed.

Ive been told they are thinking of a autoimmune disorder as well as all the other one.

feel even worse now,cant stop crying.

phoned the hosptial today because i have been so distressed.

Ive been told they are thinking of a autoimmune disorder as well as all the other one.

feel even worse now,cant stop crying.

oh no! don't let them get you down and fill your head with all that other mess. granted autoimmune diseases can mimick the same symptoms as inner ear issues, but at least they are attempting to help you--or i hope. they filled me full of that mess too at the beginning of all this...and for nothing. let me know how it goes....good luck...and try to keep positive---even though it's hard. doctors just want to cover all bases, but that is good, right?

alex, I am so pleased you replied,Ive stopped crying and have kept myself busy this afternoon.
My husband made me go for a walk with him to the local library and it was tough, I was so off balance, it made me want to collaps on the floor in a heap and and cry and cry ....."how did I get like this" ?
I have had a horrible head pressure and slight nausea with it , I suppose this could be MAV ,but tomorrows my appointment and I keep thinking something is seriously wrong with me,cos it sure feels serious to me.

Hope you are feeling well today Alex ?

alex, I am so pleased you replied,Ive stopped crying and have kept myself busy this afternoon.
My husband made me go for a walk with him to the local library and it was tough, I was so off balance, it made me want to collaps on the floor in a heap and and cry and cry ....."how did I get like this" ?
I have had a horrible head pressure and slight nausea with it , I suppose this could be MAV ,but tomorrows my appointment and I keep thinking something is seriously wrong with me,cos it sure feels serious to me.

Hope you are feeling well today Alex ?

good! keeping busy is part of the battle--at least for me ;) that is so hard to get out when you aren't feeling well, but i think mentally, i does help at least some to not "play" the role of being sick and shut-in...despite how difficult it may be. today? well, it's the same as usual for me...don't feel good, crappy vision all the time...had some headache come and go...didn't get but about 3 hours of sleep last night, so when i got off of work..took a 3 hour nap:D i know the feeling of "how idd i get like this"....i think that to myself every day....it is so frustrating, and it is so hard for people who have no clue about this to understand. i am glad you have an appointment tomorrow...it will help your nerves...or i hope so :angel: i know, every day i think i will just drop dead in the store or something because this is actually something more serious that they didn't find...:( but don't let them scare you more. i had the mri's, ct scans, ekgs, EEG's, blah blah blah...ruling out MS and trying to rule out other disorders. i think it boils down to something simpler than all that...and i am sure it will for you as well.....even though by no means does it feel simple. hang in there and i am sure something good will come your way....:D as well as for the rest of us battling this crap. i think it really is a survival of the fittest with this stuff...and patience is a blessing :jester: my thoughts are with you tomorrow--do something relaxing tonight if ya can...or just cry and let it out..whatever makes ya feel a lil better!

AlexI always feel I will drop dead with this, I remember before my tests my consultant said "I dont think anything serious is wrong" , so with the bilateral damage, now I picture him saying "yes there is something wrong".

Last night I played with my juggling balls ,lol.....I thought it might work like VRTS ? It did help me relax.Then I lay awake alot last night, with my mind going over and over(arghhhhh).

Sitting here with a cup of Tea and its just gone 7am ,,,4 hours to go!

I even read thru the autoimmune disorders and got a shock , one of them called aka spondalitis jumpedout the page at me , 21 years ago when I was 18 year old I had inflamation of my ribs and spine and was told it was spondalitis .....I have had a few flare ups through my life but nothing to bad.
No one ever told me it was a autoimmune dysorder ,so maybe this is what my consultant is looking at ? To be honest I would rather it was MAV because I could try and take pills for that.

anyway have a better day today and I will catch up with you later today ,,, and thanks for listening xxx

oh what a day , the consultant made me sit on a stool that turned round and round and span me round and round on it super fast, so much so i thought i was gonna fall off . Then he told me I slightly hyperventalated !

what the hell does he expect when I am so afraid of having vertigo and dizziness ? Then he said even tho my caloric test showed low functioning on both ears he feels that anxiety probally made it that low.
(I was so calm when they did that test ).

Then he said I may have MAV and anxiety together causing a visious circle.He said i do have MAV symptoms and anxiety.
he gave me a preventor to try and that was that.



somehow I felt very misunderstood and judged on one thing only (the spinning stool).
what the hell are these tests for if they are going to ignor the results ?

somehow I felt very misunderstood and judged on one thing only (the spinning stool).
what the hell are these tests for if they are going to ignor the results ?

Tell me about it. It seems like they latch on to a possible diagnosis and that's it!

Do you have more appointments or is that it?

oh what a day , the consultant made me sit on a stool that turned round and round and span me round and round on it super fast, so much so i thought i was gonna fall off . Then he told me I slightly hyperventalated !

what the hell does he expect when I am so afraid of having vertigo and dizziness ? Then he said even tho my caloric test showed low functioning on both ears he feels that anxiety probally made it that low.
(I was so calm when they did that test ).

Then he said I may have MAV and anxiety together causing a visious circle.He said i do have MAV symptoms and anxiety.
he gave me a preventor to try and that was that.


somehow I felt very misunderstood and judged on one thing only (the spinning stool).
what the hell are these tests for if they are going to ignor the results ?

hope you are feeling better today, despite sometimes having the docs irritate you...i know exactly how you feel about them just sticking to one possibility and ignoring other symptoms. what preventative did they prescribe you, if you don't mind my asking? i do hope it is one to do the trick for you! in my thoughts---hope it goes excellent for you very soon!:D

he asked me do I want to see him again or let my gp manage it,
I was so annoyed I asked for my gp , then he said I have a sos card so I can see him anytime in the next 12 months.
forgot to say , he is booking me in for balance excersizes and he said my gait is slightly wrong ????

Its like on one hand he was beliving I had a problem and on the other he was be littling it.

I have to take a very low dose of a antidepressant called ........

Amitriptyline (think thats the correct spelling) , starting off with 10mg and in 2 weeks time upping it to 20mg if its not helping. For depression its used at about 200mg.