Neurologist says MAV, Vestibular Therapist says in need of brain habituation

Hi there,

I recently wrote on this forum explaining a list of symptoms I have.

To summarize, seven years ago, after going through an extremely stressful time and having a lot of anxiety, I woke up one night to a pendulum sensation in my head. It was very intense. If I could compare it to anything, I would say it was like an excruciating headache without the pain. When I went to the hospital, they diagnosed me with labyrinthitis and with two weeks of rest, I went back to “normal.” After that episode, however, I was never the same. It felt like my proprioception was off and rooms had a tilting feeling to them. I also had an internal off balance feeling and rocking sensation.

I was never diagnosed with MAV at that time as my primary care physician was aware of the pre-existing anxiety condition I had (panic attacks and GAD) and so, I went on with life thinking that all of these terrible internal movement sensations were a result of my anxiety.

After my second child, which was a year ago, I started to have panic attacks for the first time in 10 years. I felt that it was weird I couldn’t control them since I knew what panic was all about and was able to keep them under raps them since I was a teenager. I was also working full time, self-employed - with up to 12 hours a day on my laptop. My four year had just started school, and I was responsible for getting her there with the baby. For some people, this may not seem stressful, but for me, with a million things to do even for my own business, it just seemed overwhelming.

I started then complaining of headaches, and I thought they were tension headaches because I was constantly carrying around the baby. I also wasn’t sleeping at night. Some mornings I would feel like I got hit in the head by a bus. I developed total brain fog during this time with bouts of sadness but not full blown depression. The anxiety was the worst part.

Then, I started complaining of extreme light sensitivity. I thought I had “pink eye” because I would wake up with so much water in my eyes. I went to the optometrist who said I just had dry eyes.

Then started the dizzy spells. While at my office, if I leaned my head to the right to take a phone call or look down on a piece of paper, I would feel a spinning/adrenaline sensation come over me. I quickly would change position and wait for the dizziness/panic to subside. This was obviously not helping my panic attacks, either.

I went on 2.5 months thinking this was panic disorder until a visit to the chiropractor made it a lot worse. The dizzy episodes were becoming so close together.

I was finally diagnosed with BPPV at the ER. I went home and did the Epley maneuver, and the spinning went away, but I have this constant off balance, panic sensation. My eyes are super sensitive, and even though BPPV is gone (because I keep testing the Epley), I get these spinning episodes that are positional.

Tennis courts, grocery stores, just about anything seems super bright and surreal. And even though the “BPPV” was in my right ear, I have fullness in my left ear when I wake up in the morning with slight ringing. I also cannot take noise. It makes me so confused - even my children yelling and crying makes me cringe.

I have been to an ENT twice who says he can’t see anything wrong - my hearing test was normal on both occasions. The neurologist says it seems like Migraine. My only hesitation is the ear fullness and the fact that even after long periods of headached (pain) free periods, I feel totally off balance and out of sorts.

I have developed Agoraphobia because i am scared to be dizzy and be out in a public place even though this has been going on 5 months and I have managed.

The naturopath seems to think its my neck and the SCM trigger points can cause ear fullness but not BPPV.

Keep in mind, no one ever performed the Dx Hallpike. They just went on description alone. I had the classic symptoms of BPPV before, spinning would start within 10 seconds of lying down and go away within a minute.

Any suggestions? My VT says that it could just be that my brain still thinks I am dizzy but sound sensitivity does not come with BPPV to my knowledge. And, also, I did have an upper respitory illness before all of this but that wouldn’t explain the panic attacks and my ENT says not really a cause if BPPV.

Based on my symptoms it can be so many things:

SCM trigger point

I am so lost.

Like me I was full of questions and not satisfied and distrustful of the answers I received.

I did a LOT of reading on the net, so many medical journals. Whilst that lead me towards understanding that also made me very anxious at times.

Unfortunately there is a lot of uncertainty in ear medicine. It’s a dreadful state of affairs.

What I would focus on, instead of this uncertainty, is find things that make you feel better.

Feeling better will settle the anxiety and give you hope. Hope is absolutely critical!

So, accept the diagnosis, explore the therapies available and see what works for you.

No matter what your issue, a conservative approach is best. Let the body do the healing and take some medication and therapy to help you feel better.

In the meantime if you still have questions and are not satisfied with the answers you have, SEEK MORE ANSWERS - read online, get another opinion. Iterate until you are satisfied you have the answers.

I get different diagnoses depending on where I go. Naturopath seems to think it’s my neck tension triggering migraines and I know BPPV goes along with a migraine, too. Thank you for your input.

There is a lot of politics in ear medicine and there are conflicting theories and positions AND expertise, levels of education, experience, and yes, it really depends on who you see to what answer you get. That can’t be right?! It should be a SCIENCE! The sad fact is its not particularly well developed and there are still a lot of quacks about.

I listened to my body. Over time I developed a mental model for the problem I was having. I developed this model over months and months from reading and experiencing my symptoms. I had to modify this model regularly when symptoms didn’t fit my model or didn’t respond to things I thought might make things better. I’m very satisfied now with the conclusions I came to because I saw a very senior ENT surgeon eventually and he backed up everything I’d thought. Whilst it did not cure my condition, I felt vindicated and satisfied I knew what was going on and that gave me strength.

My suspicion is that whilst neurological symptoms are prominent, MAV comes on after a physical injury/trauma to the ear, and because there can be a very large time delay between the original incident and the appearance of these dreadful symptoms I suspect it is hard for people to make the connection. I also wonder if BPPV symptoms can be explained by a spontaneous leak (which leads to movement of fluid in the canals, excitement of the movement sense giving you a feeling of spinning, and a deficit of fluid afterwards we leads to a trailing period of imbalance that can last days whilst the fluid is ‘refilled’). The ear is far more delicate that people give it credit, and it is much easier to injure the inner ear than some people believe. But its all connected with air and the bones of the stapes set up - you can eaily transfer enough pressure from the outside to damage the little windows of the inner ear.

There is no doubt I had some positional vertigo going on because the Epley also triggered intense spinning. But there was also a psychological component because I was under a lot of stress before this all transpired. My gut tells me the two are interconnected and in times of intense stress, my brain becomes hypervigilant to the point where it’s “on” all the time. I think stress causes a type of inflammation, particularly in my brain and I get this wonky symptom.

The last time I had this much stress something similar occurred, and it took years to go away. Now, the spinning is gone, but I feel off all day, and sometimes, I feel like I am about to spin.

Oh, stress is involved. I’m not so sure it is the main reason for these symptoms to come on in the first place, but it definitely exacerbates them. Anxiety is DEFINITELY one of the symptoms.

I thought I had ‘positional’ vertigo, but it turns out your head pressure goes up when in bed which can bring on a leak, especially in some positions.

I can agree with that theory except how come the spinning stops within 1 minute when lying back doing the Epley? Does the pressure settle?

It can seem unlimited at times … as in you spin whenever you put yourself in that position

This rings true to me and maybe it was just a coincidence that the Epley worked. I am started to think it is coming from my neck. What else I find odd is before all of this I had an upper respiratory infection and now, my ears constantly feel like they are equalizing. Like a big pop, then a “Fade out” but no hearing loss at all. My hearing tests were normal both times, so ENT said it’s not Menieres.

Could MAV also cause ears to pop – or does it make more sense with the neck, particularly the SCM muscle?

Ears only pop when something is up with pressure regulation. That’s a sudden equalisation of some kind. The eustachian tube is involved with that and any blockage can clear when you move neck or jaw as move or stretch the tube on each side

Both pop?

I get occasional dried leak which cracks open episodically when moving jaw.

Separately neck muscles get very stiff when you have a vestibular upset as your brain tries to lock your head and eye position more firmly to make up for it. This is not a direct connection to the ear, rather its your brain shifting reliance to eyes for balance info. Amitriptyline helps eliminate that.

What’s bazaar is the tinnitus and ear fullness comes from my left ear with headaches/migraines that feel like they are in that ear. The bppv or whatever that was only happened in my right ear.

This all happened after my upper respiratory cold that I had for months. I did suffer from the occasional headache migraine before that but my gut tells me is not a migraine disorder. I remember listening to music loudly with kids and my ear started ringing momentarily. I would then get constant ringing that would last a couple of seconds with these equalization pops that still occur.

Ent says he has no idea because hearing test was normal.

Do you think my cold could have cause this? Maybe the migraines are in that ear because there is built up fluid? And the bppv also happened in the other year because of the constant blowing of my nose for months?

So does mine. I think its a myth. I’m sure MAV is NOT cause by migraine, just a class of ear trouble that includes neurological symptoms (why wouldn’t it, ear upset is going to confuse the hell out of the brain!). Migraine simply doesn’t explain the sudden onset and 24/7 symptoms. Unfortunately its nebulous nature makes it easy for people to use it as a scapegoat.

If you had minor trauma to the ear I’m sure it will heal in time. The issue with the ear is we are so sensitised to it. And because its a pressurised fluid container (which doesn’t carry blood which clots) it takes much longer to heal a breach.

Have faith that your body will heal in time, its just you may have totally accidentally injured a part of you that is very sensitive. Its just bad luck, like mine was, although I was more to blame.

Focus on finding ways to may yourself feel better and have hope this will fade in time.

I injured my ear and I’m now about 2.5 years in and it has started to get loads better but I know I have got a long way to go. You may be luckier. Hang in there. Explore the things on this board which help people feel better.

Exactly. I believe my headaches only got worse and more localized (in left ear only) because something was going on in that ear. Like a blockage of excess fluid and blood couldn’t flow properly. I told the neurologist that the headache feels like it is coming from right within my ear ALL the time.

He didn’t really flinch or sound surprised. Perhaps the constant nose blowing damaged the ear. The bppv in the other year started in April and even though it’s gone, I’m still dizzy 5 months later.

Just be patient. And be (I’m sure you are) gentle with that ear … minimise loud noise, I’ve cut headphone use for example. Double pillow. Patience! :slight_smile:


You can have (and people often do have) co-mobidities, i.e. more than one thing wrong. so somebody could have BPPV by itself or with MAV or with Meniere’s or other ENT problems; and you can have (and most people do) some level of anxiety on top of this, usually caused by (not causing) the balance disorders.

firstly, treat the anxiety - you can deal with that. no point being anxious on top of the other problems. try CBT for starters.

secondly - If the specialist thinks it’s MAV, esp with the photosensitivity and headaches, i think it would be wise to treat as though it is MAV. you can still explore other tests or treatments. if you don’t trust that diagnosis, get a second opinion.

‘habituation’ can work to some extent with MAV but because it’s a variable condition, it doesn’t fix it. all it can do is make you more able to tolerate ‘changes in balance/dizziness’. VRT does work well for fixed problems (e.g. if you left ear is completely dysfunctional, you can relearn to use your right).

Because of the way MAV works, you can basically get any sysmptoms to do with the vestibular system, because it is the system that is malfunctioning (brainstem) not the inputs (eyes, ears, musculo-skeletal reflex).

photosensitivity is a significant pointer towards MAV though.

hope this helps?

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You have a lot of confidence in the state of ear medicine? (I have far less!)

MAV is a name given to a set of symptoms. Thats it. I believe they were careful to name it this way btw as ‘Migraine ASSOCIATED vertigo’. That doesn’t suggest it is CAUSED by migraine just that it is ASSOCIATED with it. There is no science that proves it’s caused by migraine. Unfortunately part of the medical community and some patients have got carried away. Like a religion. Pure hypothesis and a very weak one at that.

The co morbidities simply occur when the symptoms don’t fit the ‘categories’. This is simply because the categories aren’t perfectly chosen and the science isnt up to snuff.

I’ve done a lot of reading and along the way noticed how politics and dogma fills the space that’s not occupied by science.

It seems to me that MAV is exactly like Menieres except for the lack of profound hearing loss. I suspect that is because in both cases movement of fluid is occuring in attacks which stimulate the movement senses so you feel like you are spinning. The difference is the cause of the movement: in Menieres this is because structures in the inner ear are collapsing, probably due to pressure from hydrops. In MAV it’s because there is probably a leak from a wound in one of the inner ear windows to the middle ear (a ‘fistula’)

How MAV probably arose is because of an era in ear medicine that was beset with controversy about how many operations people were having for fistulas and some doctors were unhappy with the efficacy of these operations but instead of blaming the surgical procedure some started to refuse to believe in the concept of a fistula

If you look at the symptoms of MAV it’s identical to those with a fistula. Thats because I believe it’s the very same thing. However the renaming side steps the politics around the fistula treatment.

Conservative treatment of a fistula is IDENTICAL to treatment given for MAV. Penny dropped yet?

BPPV is another classic ‘category’ of condition that is probably also explained by leakage but has gained some alternative very popular but completely unproved hypotheses.

The inner ear is so very well protected in solid bone deep in the skull. The only exposed points are the oval and round windows into the middle ear. It doesn’t take a genius to suggest the patency of these windows are most at risk of injury than anything else about the inner ear.

Once one of these windows gets a leak you get a smorgasbord of symptoms as it messes up the pressure regulation in the ear and this model also explains all the relapses and phases of the condition much better. It also explains why most people eventually get better as the leak finally holds despite higher ear pressure, leaving the pressure a chance to drop.

Ear medicine is frustratingly lacking in development. Listen to your body and use logic. You don’t suddenly get a vicious migraine complaint from nowhere. It’s obvious to it must have started from some trauma or upset to the ear. And it wouldn’t slowly go away unless something was actually healing.

Turn itaround - Thanks for your response.

At the risk of sidetracking this post: The medical community knows it doesn’t fully understand the condition, or even migraine itself. However, it’s the best diagnosis and treatment we’ve got at the moment.

Thousands of people benefit from ‘treating to prevent migraine’ although not all do. It’s not pure hypothesis, it is scientific testing of a medical hypothesis to examine results - which are on the whole shown to be positiveThat’s how science works. It’s pure science. There’s a reasonable amount of peer reviewed research you can look up. That’s exactly how science works.

It’s the same way they tested penecillin or test any new treatment! Come up with a working hypothesis and test it!

Religion requires blind faith - not something western science or medicine, for all its faults, ever indulges in.

That’s fair comment. That’s scientific process true. And at this point those who believe it’s migraine are WAY off. Migraine was always considered to be an episodic event and now it’s being bent into shapes to fit a far fetched hypothesis about 24/7 symptoms. When explaining any hearing loss with ‘MAV’ they then invoke another hypothesis suggesting migraine can cause strokes! Ridiculous! All this was explained years ago when fistulas were shown to cause Hydrops. Migraine is a terrible explanation for sudden spontaneous onset and in those lucky enough to recover, spontaneous resolution! What is wrong with the concept of injury and healing?!

Agree with you that treatment protocols are reasonable. But giving credence to a hypothesis just because people have positive response to neurological symptoms with brain meds is also a bit myopic. OF COURSE ear trouble gives you very significant neurological fall out!! So why wouldnt an ear condition respond well? There are plenty of ear conditions where patients are given amitriptyline. That doesn’t prove anything.

Root cause has gone up the completely wrong alley and that’s blindingly obvious to me especially someone who’s read a lot of the papers AND suffered. Listening to your body gives you insight no healthy scientist ever has.

When I once challenged my neurologist about sudden onset (despite my OBVIOUS history of ear trauma) she told me I have probably had a genetic mutation !!! Coooome oooon!!! Is that the best explanation you can come up with? Yet another BS hypothesis. Pull the other leg!!

I look forward to consensus returning to sanity.

Thank you for your input. When the vertigo finally calms down for me, I get dizzy talking. It’s like I feel the rush of dizziness coming if I am in a conversation. It feelsl like there is a lot of pressure.

I’ve read that Migraine does not happen 24/7 and I haven’t heard of these symptoms with Migraine. I have suffered from GAD panic disorder before all of this started, so I am wondering if I have developed like a psychogenic form of dizziness.

I can’t seem to shake this constant dizzy feeling. Do you think a positional type vertigo can stem in the neck?

No, its most likely not all in your mind, don’t let any doctor tell you its ‘psychological’. That’s their speak for ‘I don’t know what’s wrong with you so I’m going to blame it on you being weak of mind’

Pah! BS :slight_smile: