Nuerologist now thinks inner-ear virus

So after having my 3rd MRI this year (don’t ask ;/) MRA of brain and neck and everything coming up clear, my Nuerologist is convinced that my brain is fine and that it’s my inner-ear causing this 24/7 dizziness.

I do indeed have MAV and have suffered with this since the age of 10. Since starting Topamax in April, I thankfully have not had an attack! Yippee!

It’s just being rocky, having tinnitus, blurry vision and having a hard time concentrating and feeling anxious at when or if this will end?

After my c-section surgery, 2 days later I woke up with the room spinning SO FAST I could barely sit up followed by vomitting (which I’ve read are symptoms of Vestibular Nueritis.) My world has slowed down, but has not stopped ever since.

VN or labyrnthitis totally makes sense since I was sick when I went into surgery with a cough/cold. I very well could have had a virus.

What’s frusterating is that I’ve gone to 2 inner-ear specialists and they have both said my inner-ear is fine. My ENG test I think was “normal” but I think there was something there that the Dr. wasn’t super concerned about.

I did 6 weeks of VRT and the therapist said I had MAV and MDDS and that I probably wasn’t benefitting from this and didn’t think I had VN.

My nuerologist said that it is so hard to really see the inner ear and that the virus attacked hard and these are the lingering effects and that I need to get back into VRT and do the exercises.

I found this website and it is wonderful I read these girls stories and can totally relate and am wondering if he is right? It has a great coping site that you should read!

labyrinthitis.org.uk/

Does anyone have anyone comments about this? It’s just really frusterating when you have doctors with conflicting opinions with what’s wrong with you and of couse nobody can tell you what is wrong…

Ilovesalem,

I’d get a second opinion from another neurologist. You’ve had dizzy spells since age 10 and your case just sounds so much more like MAV that it an inner ear virus. I suppose it’s possible but doesn’t sound like it to me. I could understand if he thought you had utricle dysfunction or maybe another inner ear abnormalty but an inner ear virus just doesn’t make sound like it.

Greg

Geez. With all those conflicting opinions, it must be tough to be your own doctor, as it were.

Have you gone to a comprehensive dizziness clinic like that of Dr. Hain, or the Mayo, etc.?

I think you need an expert to start ruling things out, narrowing the list of issues. Plus you have the medical history that needs to be examined as well, not to mention whatever happened after the C-section (hormones, anesthesia, etc).

One thing is for sure, you cannot have all those things at once (VN, MAV, MDDS). Time to start getting some things crossed off the list.

To complicate matters further, the ENG is a very unreliable test for inner ear damage. In 70% of the cases, results are normal despite their being inner ear damage. Secondly a migraine can cause inner ear damage, perhaps due to damage to delicate blood vessels as part of the whole cascade of events that take place during a migraine. So you can have both inner ear damage and MAV. If the MAV is under control, and you are still having symptoms, you might benefit from some VRT, but your best bet would be to see a neurotologist, that is an ENT or neurologist that has done extra training and who specializes in balance disorders.

thanks everyone for your advice!

i know this has to be more than mav because up until 1 year ago, i was not dizzy 24/7. i would get dizzy attacks but this is something totally different. after reading those girls stories from the uk, it really does seem similar. for example, when i lay down at night, i feel like i am rolling down a hill. it’s the pits.

or, i’ve felt the worst pressure in my ears like i have an ear infection but the doctor last week said everything looked fine. i also never had tinnitus and am thinking that whatever the signal my ear is giving to my brain- it’s just not communicating.

i would LOVE to go to the mayo clinic, just not sure what that entails. i will be switching my hmo insurance to a ppo this jan.2012 so hopefully that opens up some doors. i’ve been paying out of pocket for some “upscale” doctors here in san diego that can’t seem to tell what’s wrong with me. i’m desperate to know.

this has been wearing and tearing me down like the rest of you. i just wish someone could tell me “this is what’s wrong with you, this is what you need to do and it will stop on this date.” :wink:

what a dream…

Hi ilovesalem,

I’ve got lots to say on this and will chat later. Have to run. I know both girls quite well on the site you mentioned. Great people. One is definitely dealing with MAV … labyrinthitis or VN was her “big bang” event (it just took her years to believe this dx not unlike myself). Haven’t spoken to them in ages but Ilia, last I heard, was symptoms free or managing very well. I’m not sure if she ever had MAV but was dealing with a bad case of VN at the time that went on for over a year.

More soon … S 8)

Hi Salem,

So after having my 3rd MRI this year (don’t ask ;/) MRA of brain and neck and everything coming up clear, my Neurologist is convinced that my brain is fine and that it’s my inner-ear causing this 24/7 dizziness.

What is bizarre here is that an MRI will not show migraine activity unless you are one of the few who might have white spotting on some areas of the brain (migraine related and not MS) or even some thickening of the cerebral cortex for which the evidence is weak (one study to my knowledge). To make the jump then to say “it’s your inner ear” is not correct unless you had a caloric test showing greater than a 30% deficit in one of your ears. In other words, if the caloric is clear, then there is no inner ear pathology. What would make sense, however, is that migraine activity is causing a mismatch in the signals received from your inner ears and conflicting with sensory information from your eyes - i.e. the vestibul-ocular reflex is being hosed by migraine activity.

I do indeed have MAV and have suffered with this since the age of 10. Since starting Topamax in April, I thankfully have not had an attack! Yippee!

This is very solid evidence that you are indeed a migraineur and that the problem is “central” and not “peripheral”. In other words your brain is creating the problems, not the inner ear per se. You have an established migraine history and Topamax worked. Slam-dunk.

It’s just being rocky, having tinnitus, blurry vision and having a hard time concentrating and feeling anxious at when or if this will end?

All very typical MAV symptoms which do go with treatment.

After my c-section surgery, 2 days later I woke up with the room spinning SO FAST I could barely sit up followed by vomiting (which I’ve read are symptoms of Vestibular Nueritis.) My world has slowed down, but has not stopped ever since.

Migraine typically goes nuts after giving birth because of hormonal disturbance, not to mention all that giving birth entails.

VN or labyrnthitis totally makes sense since I was sick when I went into surgery with a cough/cold. I very well could have had a virus.

But VN would not last for a long time. To me this doesn’t not sound like VN or labs though both are capable of kicking of chronic migraine in someone predisposed.

What’s frustrating is that I’ve gone to 2 inner-ear specialists and they have both said my inner-ear is fine. My ENG test I think was “normal” but I think there was something there that the Dr. wasn’t super concerned about.

Again, this is very typical. Normal inner ear which suggests no pathology in the ear itself - and no VN or labs. It’s migraine related vertigo.

I did 6 weeks of VRT and the therapist said I had MAV and MDDS and that I probably wasn’t benefiting from this and didn’t think I had VN.

Sound correct as this is often the case with MAV. But on what basis did they dx MDDS?

My neurologist said that it is so hard to really see the inner ear and that the virus attacked hard and these are the lingering effects and that I need to get back into VRT and do the exercises.

This makes no sense to me. There is no really good evidence for a viral attack (inner ear is fine according to the ENG) and you already know that VRT was not helpful, something that RAuch will say is practically diagnostic for MAV. It may be helpful once the migraine activity is stopped first usually with a migraine med.

I found this website and it is wonderful I read these girls stories and can totally relate and am wondering if he is right? It has a great coping site that you should read!

As I wrote in your PM, one definitely has MAV and the other is well now – not sure if it was just a bad hit of VN in the latter with a migraine complication or not.

Best … Scott 8)

hey scott, thank you so much for answering all of my questions. i am going to print this out and take it to my next doctor appointment!

i just can’t seem to figure out why the last 19 years my migraines would attack 4-6 times a year and only last 30 minutes and this attack has left me rocky 24/7 the last year…it just doesn’t make sense but then again mav doesn’t always make sense.

thank you so much!

Scott: you wrote “MRI will not show migraine activity unless you are one of the few who might have white spotting on some areas of the brain”
Not one the few I would add: the percentage of migraine sufferers with this on MRI is a high as 45% in some studies. (ranges from 10-45%) that i have seen

Hi D,

Please post a reference for this. I’d really like to see the study and see what the latest epidemiology is on this.

This study, for example, found hyperintense lesions in 4% of migraineurs compared with 1% in non-migraineurs.

stroke.ahajournals.org/content/37/4/1109.full

S

I don’t have citations, but Hain thinks white-matter lesions are pretty common among migraineurs:

“PWM [periventricular white-matter lesions] are often an accompaniment of migraine, and occur in roughly 20% of persons with migraine.” (dizziness-and-balance.com/di … al/pvm.htm)

“In fact, between 12-47% of patients with migraine have these white matter lesions, compared to 2-14% of controls (Evans and Olesen, 2003; De Benedittis and Lorenzetti, 1995).” (dizziness-and-balance.com/di … RAIN6.html)

I’ve done so much reading on MS boards, and MANY neuros tell their undiagnosed patients who show nonspecific-looking white-matter lesions that they are likely due to migraine, high blood pressure or cholesterol, smoking, or simply “age.”

Oh–I just looked at the study you posted, Scott–and I may be misinterpreting it, but they were looking for INFRATENTORIAL white-matter lesions in migraineurs, after saying that migraineurs are known to have SUPRATENTORIAL lesions. So they were looking at different parts of the brain. If I’m reading it correctly, they’re saying that infratentorial ones are in 4% of migraineurs, but they don’t mention the percentage of migraineurs who have supratentorial lesions. (That said, I have only the vaguest idea of the difference–don’t know much about brain anatomy.)

(Scott, that is a fascinating study, anyway–plus their reference #1, to a previous study on migraine lesions–showing higher chance of lesions in the pontine and cerebellar regions, I think–anyway, it’s clear that migraine affects the brainstem and balance center. I have always wondered if migraine accounts for the highly abnormal brainstem evoked potentials that I had.)

Re ENG: I’m not an expert, by any means, but I’ve also done a ton of reading on a dizziness forum… and the head of a balance-testing center who posts there ALWAYS warns us that ENG (the caloric part, which yields those percentages) is a very rough measure and a fairly poor way of finding inner-ear disease. It can be normal and yet the person can still have a vestibular disorder. As he puts it, “If you’re looking for your keys and you don’t find them on the kitchen table, that doesn’t mean they’re not in the house.” He always says, if ENG is normal, go on to further vestibular testing (rotary chair, etc.). Of course this depends on which tests would be appropriate, determined by the neurotologist or otoneurologist. Thus, normal ENG by itself does NOT, by any means, rule out inner-ear disease.

Nancy