Hi fellow BPVers!

I had a strange appointment with my ENT on Saturday and am really confused so thought I'd ask you guys what you think (if you don't mind.....)

In Sep 05 I woke with vertigo/nystagmus after straightening my head. Vertigo persisted for about 3 weeks but only if I angled my head down to my shoulder (both sides and only needed to angle a few millimetres).
A few days after the vertigo had gone I got stuck with all the other sypmtoms :
feelings of false motion (just sitting perfeclty still and feel like i'm turning or tipping, or being pushed/pulled down to one side)
feeling like I'm rolling over in bed when I'm lying still
spaciness/ brain fog
lightheadedness and headaches
sore neck
anxiety / insomnia
visual probs
motion sickness

ENT/ said come back at 6 months (now) if I was still having problems. While i think I am improving I still have real problems with motion sickness and visual problems - things permanently look strange (colours and perspective are off, and if I watch anything moving I feel like I am moving.)
When I saw the ENT guy he said this is not BPV - everyone he has seen gets better within about 6 months and if there are residual problems they are related to the head or body moving and do not just come on when you are sitting still. He also said the vision problems aren't BPV. Then he started saying that I might have inflamed sheaths round my nerves and said some people get this inflammation periodically through out their lives causing repeated dizziness and vision problems and that it's MS. Becasue he thinks it's MS he said VRT won't help so I still haven't been given any tailored exercises or had an ENG test or anything (which is what I was actually after)

Has anyone else been told this? I was really surprised as I thought all my symptoms were inner ear related and no chance of MS.
I am sposed to have an MRI scan to check for MS but my breast bone is wired together after open heart surgery so probably won't be able to have the scan.....

Hmmmmmm!

Hilley

Oh Hilley,
I'm so sorry to hear this. I'm going to ask the stupid question of what are inflamed sheaths around the nerves and what nerves is he talking about? How did he see the nerves? What type of test did you take? MS was a big fear of mine because after the vertigo hit on this last episode I had tingeling in my hands and feet. It eventually passed and an MRI ruled out the MS. What testing other than the MRI can be done to determine if it is MS?

Hilley, you and I share MANY of the same symptoms and as you know they told me I have something in addition to the BPPV going on. Maybe its the same with you and not necessarily MS. Meniere's symptoms were mentioned but they really dont know. I wish I had some solid advice. Please remember though that there are many folks here who are recovering for much longer than six months. Maybe he is incorrect about the BPPV diagnosis. Maybe it Labs or VN. My first episode took 6 months to resolve and I was at 100% until this second go round.

Let's see what some of the other responses are. I will keep you in my thoughts and send lots of positive vibes your way.

adrienne.

Hello Hilley, first of all get that MS Bull out of your mind. You have the same thing that is affecting most on this board (vestibular neuritis or Labs). It will first cause severe dizzyness and then you'll be left with a bunch of other symptoms(along with dizzyness) that will take about 2 years to get rid of. Their is no connection between an inner ear infection and MS so everybody just live with it. Sorry about being so brunt but I feel people are letting their mind run away with them.

You Go Neddy...give Hilley that tough love!
Hilley, Neddy is so right...your symptoms ARE EXACTLY what the rest of here are experiencing and our minds do race in the worst possible direction sometimes. (Hence the insomnia issues we have all had to conquer because of those marathons of thoughts.) I'm sure almost everyone here has had the fear of MS in their minds at least once during their inner ear ordeal. I'm so curious, how your Dr. came to this conclusion. Please give us the details.

adrienne.

i would get a second opinion...doesn't seem like your ENT who is to be a specialist knows what he/she's talking about and you don't want to hear MS until all things have been confirmed and ruled out. there are other tests to try to rule out MS but as you know, the MRI will truly confirm it.

Keep us posted but i hope you rest assure, more htan likely you're dealing with what we ALL have been! I'd love a cure! Where is the PR on this disease..would love to see more research on this type of issue....maybe if we all write to the Today Show (who tends to profile different health topics regularly) we can get someone to do an article!

Hello Hilley,

First off could you give a more detailed description of your visual problems.

Secondly I think this really outlines why a person with a dizziness disorder shoudln't be primarily under the care of an ENT. An ENT is a specialist in the nose, throat and middle ear. They do very little training in the inner ear and it's hit and miss whether they know anything much about it, although they never tell you this.

It is of course possible for MS to manifest as vertigo and dizziness. Obviously visual problems can also be part of that. BUT it sounds to me like your ENT has run out of suggestions due to his limited knowledge and is now grasping at straws. If you saw someone who was very specialised in this field, they would know dizziness can drag on for years and definitely wouldn't jump to the conclusion that at 6 months of unresolved symptoms it must be MS.

A condition that comes to mind immediately that can cause positional vertigo akin to BPPV and also cause visual problems of many descriptions, and every type of dizziness is atypical migraine -(MAV.) BPPV can also leave people with residual vertigo/dizziness months and months after the initial 'typical' BPPV style symptoms are gone.

It's true that most people do have an MRI to rule out MS as a possibility. It's a shame you can't have one. But from what you have said (6 months of unresolved symptoms) I don't see that you are any more likely a candidate for this minor possibility than the next long term dizzy person.

In your shoes I would run not walk very fast away from this turkey ENT - he simply isn't specialised enough and find yourself a neurotologist. They will run all the tests for you, will be up on all the dizzy disorders - BPPV, MAV, VN, lab etc etc... Without an MRI I can't say for sure (as I couldn't to anyone dizzy) that it isn't MS, but I would say that with a good neurotologist and the right tests, even without an MRI they would be able to shed much more light on the situation and are unlikely to jump to this rather strange and knee jerk conclusion.

I saw 2 ENT's - one of them told me there was nothing wrong with me bar anxiety, the other thought it had to be menieres, but when my hearing test came back normal, he washed his hands of me and concluded there was nothing wrong with me either. I was then seen in an excellent neurotology department, they were familiar with all my symptoms, completely unfazed by how long I'd been ill - (a year at that point) and diagnosed me with vestibular neuritis which is complicated by silent/atypical migraine. Neither of the ENT's would ever have got this - they didn't have a clue.

By the way I asked about the visual symptoms as I'm curious if they sound like visual stuff people get with migraine.

I just checked out another thread and saw that you are in the UK as am I. Get a referral to the neurotology department in the National Hospital of neurology and neurosurgery - I am seen under Rosalyn Davies - she is the consultant your GP would refer you too. She is fantastic. Although if you go NHS you will probably get to see a registrar who are also often excellent. I have seen various docs there but saw RD herself recently and was blown away by how good she was and how incredibly knowledgeable. This comes, I think, from having seen hundreds of dizzy people in her career and the vast knowledge she has built up therefore.

best,

i had a mri of my brain and sinus....would that cancel out ms? where do you have an mri to cancel that out?

Hey ComeandRelax,

An MRI of the brain is the test they would run for MS. If yours didn't show anything then chances are you don't have MS.

best,

Hi Hilley

..."I had a strange appointment with my ENT on Saturday".....

U sure did!

Prob the all time winner on this board---for understatements!!

Hbep---is right---when she says:

...."find yourself a neurotologist"....

ENT's have no clue---when it comes to MS---which is why they refer u---to a Neurotologist--or a Neurologist---if an "Oto" is not available.

From the Northwestern Univ (Dr/Prof Hain) web site--that is in the "sticky"

..."While many persons with dizziness are very anxious about having MS, practically it is very uncommon to diagnose MS in a person with vertigo or unsteadiness. The reason for this is that MS is an uncommon disease, far less common than inner ear conditions such as BPPV, or common neurological disorders such as migraine."...."Patients with MS generally do NOT present with vertigo or hearing loss"......

Does not seem very likely---Hilley---as for the MRI---with the wired breast bone---if an MRI can not be done---a CT is the second best alternative---not as good as the MRI---but---coupled with a "spinal tap"---good

I'm kind of surprised---he would even venture--to say such a thing---before he consulted with a Neurologist----when the ENT I saw---thought that was poss with me---all he said---was---ENG could not preclude a "Central" problem(brain)---and I was to see a Neurologist---turned out to be a vision problem

:cool:

hbep.........


were you cured and if so....by what method? any pills?

I have all the symptoms you described. I've had these for almost 3 years now. I get all the horrible visual symptoms. The floor looks off kilter, patterned carpets make me woozy, florestant lights bother me, grocery store shelves etc. When I tell this to the doctors they act like they never heard of such a thing. I think the medical community doesn't know squat about dizziness. Anyway, I just want to let you know that I did have both a CT scan and an MRI scan and both came out normal. I am quite convinced my visual problems and dizziness are caused by inner ear damage of some sort. Or maybe migraine.

It is worth reading an article Scott posted recently that describes the various oculomotor abnormalities that peripheral (ie. inner ear) damage can trigger. Note that I said oculomotor, not 'visual' since the inner ear has nothing to do with visual processing.

Some of those abnormalities include ocular torsion and skew deviation which can cause those odd feelings of looking through strong prescription glasses.

Patterned carpet, flourescent light intolerance are more likely to be migraine than anything else.

I am willing to accept migraine as a cause of my dizziness....although I resist. I just don't get how it could be so persistant. I always have the visual problems to some degree every single day.
If what I have is migraine related, what do you think is the BEST migraine preventative meds I should take? I am currently trying beta blockers. Maybe an anti-seziure med would work better? Any inputs?

Hi everyone,
Thanks for all your responses. First off, can I just say that I am not in the least worried about having MS - as NF said I think it's BULL too! (your post made me laugh!) I was just exasperated at having to wait for 6 months to be able to see the ENT again and then STILL not having a ENG test or any VRT prescribed..... - in fact being told emphatically that there are no excercises I can do

I was also a bit non plussed when the ENT said so categorically that my problems were not in my inner ear. I know everyone on these boards experiences the same things and have said it's inner ear related, but having a specialist say this is not so did make me doubt things - sorry everyone.
I guess because of my open heart suregry and ongoing care (25 years now) I have always totally trusted and believed all my specialists , and only had good experiences which solved the problems, so it's very strange now to have to discount what is being said to me!
I did ask him point blank if he had much experience of treating BPV and he said he saw multiple patients evey week. In his years of experience he said it takes between 6 weeks and 6 months to recover from BPV with 15 years olds at the short end and 80 year olds at the long end and everyone else somewhere in between....


Anyway, I'll try and answer some of the questions in the replies now - if I forget anyone sorry!


Hi Adrienne,
How are you feeling now ??? - I have everything crossed for you that the vertigo monster doesn't come back. ....
The ENT was talking about the nerves between the ear and the eye and the optical nerve. There wasn't any diagnosis or tests, he just "determined" this from what I told him my symptoms were.
I was only in there 15 mins and he then said I needed the MRI or an appointment with a neurologist if i couldn't have the MRI - still waiting to hear which. I asked him if I should come back to see him after the MRI and he said I had to wait and see. I guess I can ask the neurologist about MAV too ?

Hi HBep,
Thanks for the advice about Rosalyn Davies - I shall ask my GP about the referral.
My vision problems are present evey day to varying degrees. The worst is if I watch TV and something is moving it makes me feel like I am moving. This feeling is very strong and precludes me watching most modern TV as it has so much busy camera work. I also spend most of the evening watching the floor and listening to the TV! If i start to feel like I am moving I have to fix my gaze on a stationary object to get it to stop. I also have problems in cars and trains with the scenery moving past the windows.
Busy places like coffee shops and shopping malls are bad too. Generally my vision feels off - like the whole picture is slightly out of focus or the contrast is wrong. Perspective can also look wrong so everything looks bent or flat - a bit like the effect you get when looking sideways into a fish tank, or a funny glasses prescription....
Occasionally things I look at seem to jump or sway too. I don't have lights or sparkles in my vision which I thought was more migraine, though very bright lights can be uncomfortable
Patterns can jump around a bit as can large areas of fallen leaves or water with ripples on it....

Anyway, I think that's it ! Adam - I'll try and find that post you mentioned now as it seems relevant.

By the way - does anyone suffer from motion sickness with this? If so, any recommendations for meds to prevent it?

Thanks for all your comments
NonMS-Hilley ;)

P.S Subs - in case you haven't seen and are interested, I posted the full BPV recurrence article Scott mentioned a while ago under my thread of "BPV questions...."

I had 1 ENT say nothing was wrong with me b/c my ENG was normal and hearing normal. Neurotologist said nothing wrong either, after looking at me for 2 minutes (dummy)...he mentioned MS. It's really scary when you hear that word! I have had dizziness (mainly imbalance and nausea for 16 months). Been to 2 neurologists who did MRI of brain and spinal cord. I had spots on brain with they say is migraine related. Even though you don't have headaches you can have migraine. Spots can be MS too, but mine were not in a certain area of the brain where it is for MS. I know what all of you are going through...I have insomia and anxiety over all of this. I pretty much was convinced I had MS and the Dr's were wrong. It sucks. You just have to keep pressing Drs and go get 2nd and 3rd opinions. I agree and think that ENT's don't know anything about this. I was told by one neurologist it could be possible MAV. But I really still don't have a definite dx. I heard this thing is really hard to pinpoint. Getting an MRI is really important however... There is a really good board that talks about dizzy disorders, it's http://p081.*******.com/bdizzylounge. Check it out.

SUZY-

I'm in the exact same boat as you..you described it perfectly.....if i go into a darker store, it's not as bad, but the grocery stores, shelving passing me by, wallking out in traffic and having the cars whizz by, and bright colors do the same to me....even the computer screen.

so......we're in the same boat but what type we don't seem to know!