Does this sound like MAV for all those with experience


I am 10 months post partum but currently experiencing the third episode of vertigo over the last 7 years. I am 32 years old and have suffered actual migraine headaches since I was in grade school.

Over the years, I never noticed any dizziness or vertigo but 7 years ago, I was studying in University while also working full time plus had the stress of living alone plus was diagnosed with GAD at that time.

Anyways, one night I woke up with a rocking type vertigo that shook my world. I didn’t have the “spinning” but had a sense of motion when I wasn’t moving.

I calmed my life right down, started to eat right and within two weeks it was gone.

I still got migraines and for as long as I can remember (since my first panic attack at 16) I had visual aura. I constantly have visual snow, grocery store isles feel almost psychedelic to me and when I get a migraine I gave blurry vision. Also, if I look at a black computer screen with white writing I see lines after in my vision.

Anyways, three years after the first attack I developed an unsteadiness feeling that went away in a month. It caused me a lot of stress because I didn’t want to feel like the first episode. I went to an ENT who said no menieres, or fluid and my GP said BPPV but said also no nystagmus. He chalked it up to GAD again.

4 years later (now) I am 10 months post partum self employed and basically have been working full steam ahead since 2 weeks postpartum.

I knew I was stressing myself out between baby, work and four year old but I kept going. I got a lot of migraines that came and went but one night I woke up and my head was spinning. I was supposed to give the baby Advil and couldn’t even read the box - I was so disoriented.

I went back to bed and figured I was just way overtired.

Then over the next few days I got a migraine so bad I thought I was going blind. I was dizzy, migraneous and had aura issues.

When that subsided I kept getting positional vertigo. I would be holding my cellphone while on the phone with a client and get the spins or looking down to change a diaper followed by the spins…

The spins were happening more frequently to the point where I ended up ER. I had nystagmus and was told to do the eply maneuver.

So I tried the Epley at home which has only made things worse, I am more off balance. So I’ve tried the half summersault which has made me feel a little better but according to ER doctor that means there are indeed crystals moving around.

Anyways, a part of me doesn’t buy it. Yes I get positional vertigo lying down especially on right side with nystagmus but the dizziness is there all the time (it’s been 2 months now).

It seems every time I experience extreme stress I get throw type of flare up. I am currently waiting to see an ear nose and throat specialist but feel that won’t give me much answers.

Firstly do you think this is MAV and secondly who should I consult or how can I make this dreadful feeling stop?

Sounds like MAV. MAV is defined by a set of symptoms. I don’t believe migraine is the cause but others disagree. This is an area of controversy. I think a minor injury to the inner ear windows is much more likely the cause of MAV. These can cause a leak and better explains the MAV symptoms imho. A small leak causing a feeling of motion whilst still and larger leaks giving you full on vertigo. It may give you migraines. These are supposed to heal spontaneously but take time (months/years!) as they are under pressure. In meantime you may get symptoms. Yes it is worth visiting an oto-neuro to get some meds for symptom management. You can also explore the diet to reduce migraine threshold. Unless you are experiencing spells of hearing loss it won’t be menieres, don’t worry. Menieres is also very rare indeed.

Thank you for your response. I will be asked to be referred some place else as you have suggested.

Does the vertigo once you get the spinning ever subside with MAV and is it normal to last 2 months?

I could have received treatment sooner but for the last month I thought those dizzy spells were just anxiety attacks.

My vertigo is currently in remission but I had attacks for 1.5 years! I have no idea if they will come back. My theory is that when you get a leak the pressure in your ear goes up to compensate. Sometimes the wound will hold up to a point then give way. It will heal again very quickly once the pressure drops. Then the pressure rises again and so on. Once the wound is sufficiently strongly healed the vertigo stops. There isn’t much you can do to speed this process up imho just let nature take its course. To get your life back consider meds. They can be really helpful.

No, its not anxiety, anxiety is caused by the sensations you get. You are not going mad! :slight_smile:

Sacolucci I am not sure what country you are in, but if you can choose your specialist I would ask to be referred to an oto-neurologist as they specialise in our disorders. Otherwise you will be sent to see several different specialists starting with ENT who will rule out BPPV etc but are unable to help with MAV/VM. That was my experience anyway and it was very frustrating.

You have two little people and a business which are huge stressors and will contribute towards and exacerbate your actual migraines so I don’t know if you can get help with some of that? Stress really needs to be kept under control for our super sensitive brains to be happy. If you get the chance to read The Migraine Brain available on Amazon it will help you to understand what is going on.

Life must be incredibly difficult for you just now so the sooner you see someone who understands MAV/VM the better.

There are also dietary changes which help some people, namely no caffeine, msg, citrus, yeast or dairy. It is trial and error what works for you but as your life is so stressful already I would try to eliminate maybe just the caffeine for now as that is the main culprit. Unfortunately it is found in chocolate! Sorry.

I hope this is of some help to you. I wish you all the best.

Do you think stress causes flare ups? Like just increased pressure altogether? Every time in the past I de stress I find I go back to normal.

Oh and also I can’t be in a movie theatre I feel like I have no sense of balance or notion of space.

I get the feeling this is part of migraine

Yes I can imagine stress would increase ear pressure, that’s why it’s really important to do everything you can to calm down. Stress would also make a migraine more likely. So all in all if you lower your stress levels you will feel better. The meds also help in this department, because even if they don’t work directly on the stress, you will feel calmer with less symptoms.

Thank you so much. It’s just so confusing when they look you in the eye and say it’s BPPV.

I would just be writing on a piece of a paper and then all of a sudden get the spins I would have to look up and deep breathe and wait for it to pass

I would have never thought it was associated with migraine without a migraine

I do wake up with tinnitus though

The tinnitus is a sign of having ‘ear trouble’ imho (aka MAV). It is a sign in some cases of increased ear pressure.

Some of the medical community have got it into their heads this is all caused by migraine, I think that’s total baloney, personally. The physical explanation is much more compelling.

And FYI, i’ve have been diagnosed by several ENTs/neuro’s, with everything from MAV, Hydrops to a fistula.

That is exactly what they think it is! People who had headache migraine are susceptible to vestibular migraine because the neurons in the brain are misfiring. The medication controls this and calms the brain so it can get back to firing in a more normal less haywire pattern. That is how it was explained to me. I am on a small dose of anticonvulsant topiramate to control the misfiring neurons and antidepressant nortriptyline to calm the nausea. Together they have given me my life back whereas before I couldn’t move without feeling nauseous and spinning.

So then I guess the epley is pointless? They said when I lie on my right I have nystagmus (it’s my right ear that bothering me) and that confirmed lose calcium crystals?

Totally pointless imho. Not sure it would do any harm though if they are sure.

I did the epley and when I got up omg I thought I was flying on a roller coaster … according to ER doctor there are lose crystals… but if it’s MAV would I have the same outcome?

the loose crystals thing is just a hypothesis - no one has ever imaged these!

Its also a very stupid hypothesis - loose crystals in your canal are NOT connected to neurons, so how is that going to work?? Sometimes doctors lack common sense!

Another theory they have of BPPV is it is caused by a clot moving in the fluid, one that would brush against the movement sense, but the sensation you get would be very positional. Also how would this sensation differ from a normal motion of the fluid in which it is suspended? Perhaps there could be some interference with the normal sensation and the difference causes the confused messages.

there are cells on the wall of the canal known as dark cells. Apparently they are thought to be sticky, so any garbage/loose debris in your inner ear is supposed to stick to them out of harms way.

Leaks can also be positional - if you lie a certain way you can put more pressure on the injured ear and cause the leak to increase/start again. This may be a better explanation for BPPV.

I was told the two conditions can exist together and the crystals are actually easy to get rid of doing the epley manoeuvre. I did it and it worked for me getting rid of the nystagmus. It was then clear that I had VM.

I know that they’ve never found crystals but why when I got up did I have intense and I mean intense spinning

And also when I went for a message it was agony being head down dizzy when I got up it felt like so much pressure in my head like my eyes were going to pop out!!

Are floaters also a symptom?

I’ve found through experience that keeping head about waist is important. Even lying down I have to keep my head on two pillows. Try and avoid moving head too quickly or too low for time being.

Eye floaters? They are a completely natural phenomenon once you reach a certain age. It’s just down to light refracting in the less than perfect gel in your eye . As we age the gel breaks up more.