Attacks or a constant feeling

I went to a neurologist about the dizziness I have been having. She said it’s probably not migraine vertigo because I don’t have spinning and mine is not episodic.

On most days I feel a huge sense of imbalance, especially when moving my head. Sometimes, it feels like I’ve been pushed or my shoulder/arm has weakness.
Every once and a while it flairs up. For example, I can’t type on the computer a lot because I get a dizzy/electrical jolt that feels like it’s running up the back of my head. If I am still I can feel a pulsing through my face, into my ears. I also can’t move my head because I get really dizzy… it feels like my head will pop off but there is no pain. I can just feel it through my ears - the pulsing.

I have also developed tinnitus, hyperacusis, a vibrating tinnitus, aural fullness. My tests are normal but I know something else is wrong.

What does your migraine feel like? I feel like I have been misdiagnosed. James had mentioned a fistula and I am in the process of visiting a specialist for that. What does your MAV feel like?

Don’t be fooled by the name ‘Migraine Associated Vertigo’ or ‘Vestibular Migraine’ there is no scientific proof that migraine is the cause of these conditions, they are simply ‘bucket’ diagnoses you are given if you fail to be diagnosed with something else and fit the criteria. The underlying etiology of these conditions has not been determined by medicine. Anyone who tells you migraine is the cause is simply following dogma. At most it’s a popular hypothesis that conveniently allows a neurologist to prescribe some pills and send you our the door!!

I have had both ‘episodic’ and constant symptoms and the ‘episodic’ ones fall into two categories. Definitely I used to get scary 14 or so hours long migraines where I would have huge motion intolerance that meant I would become extremely nauseous if I moved my gaze even an inch from one spot on the wall. Extremely scary. Then I’ve had other attacks where I simply feel like I’m being pulled down to the floor by a magnet in my head or I begin to spin and feel a rush in my head. These latter attacks bear no resemblance to any description of migraine.

I’ve also had company constant or long lasting symptoms , motion intolerance, dizziness, marshmallow floor where the ground constantly feels soft beneath you, nausea, fluctuating severe to mild imbalance, hallucination of rocking side to side which when at its worst was visual. Add fluctuating persistent tinnitus on top of all that and it’s quite a lovely condition!!

There definitely feels like there is fluid in my left ear. It rings more predominantly, if pops on its own and sometimes when it pops, it feels wet.

I thought it could be a CFS leak but my neurologist said that the MRI was normal and my headaches would be worse.

But it definitely feels like there’s something in there . I also have TMJ though and my bite is worse on my left side/puts pressure on my left side, too.

But yesterday was the worst, cannot even focus on the computer and my eyes jump. And I get a dizzy rush sensation up the back of my head - like there is too much pressure or something. It’s very odd.

I know I started off with BPPV or similar symptoms but now it’s spiralled into something else. Did you have nystagmus at all? All the research I am studying says that with Migraneous vertigo there is nystagmus

Yes I did. But nystagmus happens whenever there is inner ear dysfunction. It’s the head movement eye reflex firing inappropriately. More proof MAV is inner ear trouble.

They did everything with me and there’s never any nystagmus

If it’s episodic they may not catch it.

This feeling is 24/7 when I did the tests I felt the same I feel every day. I even felt dizzy when she laid me back.


episodic vs constant feeling: interesting.

mine started off as episodic, feeling normal in between, with only occasional episodes

the progressed to 24/7 really bad all the time, roaring in my head, visual disturbances, sense i was going to fall through the floor, room spinning around me, all that good stuff.

then 24/7 with noticeably better/worse days

now getting back to episodic - bad days with ‘nearly normal’ days in between.

so - you can have an episodic condition that feels 24/7 because if an attack affects you for 2-3 days and you have an attack every day, then the ‘episodes’ overlap so you are always symptomatic.

i got this a lot when my symptoms were bad. at their worst, there were times i’d get sick just from trying to look at my hone or a screen.

i have also had some very very strange head sensations over the last months, from a painful crawling up the back of my head, to a weird sense like there’s a metal ball bouncing round in my head, to flashing lights when i close my eyes. sometimes if felt like my head was full of dark matter, being dragged down to the ground. and sometimes just a weird light floaty sensation like i was in space. take your pick

i also had some inner ear weird noises/sense of cold fluid moving, at some point.

i’m being treated for Migraine Variant Balance Disorder. the drugs (pizotifen) definitely help, but it hasn’t gone away completely yet.

whether i have migraine (or something similar) due to allostatic overload, or due to an inner ear problem, or due to a gut infection/antibiotics, i just don’t know.

i figure that if i had a pure inner ear problem, the drugs (pizotifen) wouldn’t have cured my dizziness (it 90% went within a few weeks on the drugs).

what the Drs try to do is work out whether it’s a peripheral (i.e. ears/inner ears not working for whatever reason) or central problem (brain/brainstem/central nervous system not processing the data from ears/eyes properly). If they think it’s a central problem, they call it Migraine, but that’s just a broad definition.

i think by ‘migraine’ the medical establishment means ‘a functional neurological episodic condition’ i.e. they mean there’s no structural deficit or damage, no tumour, but something is misfiring or going haywire from time to time (or every day in bad cases). if you read Oliver Sachs on Migraine, you’ll see the symptoms are as wild and varied as alice in wonderland for different people.

this lady on youtube does a good job of describing some whacky symptoms that i have had as well:

good luck!

Was your vestibular testing normal? Was your hearing normal?

first ENT i saw tested everything - all balance and hearing tests normal and the same in both ears, but he suspected secondary hydrops and a viral infection. the meds had no effect and made me worse.
second ENT said either a virus or migraine, there’s no way to tell from the symptoms except to see if the treatments work.
a neurologist and opthamologist i saw said migraine.
my GP said menieres or anxiety.
third ENT (neuro-otologist) said no way it’s a virus, a virus couldn’t have given me mild episodes of dizziness over a few months before the big dizziness hit me. and the anti-migraine meds worked straight away. after 1-2 days on pizotifen, the weird sense of constant motion just started to calm down, and after 2 weeks i could drive and walk again. so - whatever it is, it is significantly helped by pizotifen. therefore it is very likely to be a central problem not a peripheral problem in my case.

any vestibular disorder can give you a lot of the same symptoms. it’s like when you get sick - if the symptom is vomiting, the cause could be bacteria, virus, allergy, motion intolerance, anxiety, parasite, migraine, poisoning etc.
so when the symptom is dizziness (or something similar), it could be one of very many causes, and it’s quite hard to work out the cause. unlike stomach problems, they can’t pump out your ear or shove a camera inside or take samples for lab tests. so it’s really hard to pinpoint causes, and the Drs kind of have to make a best guess and see if the treatment works.

which means it can take a long time in getting an accurate diagnosis.

persist! you will get there eventually, and then get on the road to recovery!

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The only diagnosis I’ve received is vestibular migraine by one neurologist. The other one said it’s anxiety.

I didn’t have a week where I had severe rotational vertigo. Only episodes of BPPv. I eventually treated the positional vertigo but I was left with chronic imbalance… but I don’t fall I just have anxiety constantly with the what if thoughts. My left ear feels full at time and randomly pops on its own and I also have tinnitus. But more of a vibrating head tinnitus that feels like I am in a plane cabin.

My tests have all been normal and I’m told there is no inner ear damage.

Could this be an unruptured aneurysm, would I know? It just feels like there is so much pressure in my head.

MRI would show that I’m sure. But check with your doctor. I doubt you’d have so many ear symptoms though.

You ought to consider additional opinions and not with one of these migraine fantasists. I had a total of four opinions and the last one gave me certainty. That may not change your treatment regime (get started on the Ami!) but it will help your anxiety and resolve your questions.

I had a normal ct scan and MRI without contrast. The MRIs without contrast would only show a small leak of blood if there was some. And those were normal. Sometimes a small leak irritates the brain and causes migraines and double vision etc.

But an unruptured aneurysm would need a contrast MRI or ct scan to see the vessels themselves or to see if there is any ballooning. No doctor I’ve seen has even suggested this, I guess because most unruptured aneurysms don’t have symptoms.

I think I’m just being paranoid but I’m sill going to ask about it.

Yes. CSF leaks can impact ears

My neuro said it wasn’t a cfs leak as I would have positional headaches that would be getting worse

Yep. I’ve read that it’s very clear when you have that.

Man, you all make me feel crazy!!! I have had so many different diagnoses in the last 3 years, and had a host of crazy vestibular symptoms - hydrops, nystagmus which have gone away, though the vertigo remains. I first got my symptoms after a bad virus in Africa so always assumed some nasty mystery bug got into my vestibular system and wrecked it. But I finally settled on migraine vertigo when I could barely get out of bed last fall. Now I’m almost back to normal - on 4! migraine-drugs and a mostly migraine diet. I avoid migraine triggers like MSG, flashing lights, and my biggest trigger: elevators.

Anyway, stop with the anti-MAV talk! I was finally settled!

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It’s not ‘anti-MAV’ and certainly not ‘anti-MAV’ treatment. I personally believe ‘MAV’ is a thing (it’s very distinct from Menieres, for example) it’s just very clear to me that the root cause of MAV is not the brain, not migraine. The syndrome still exists for sure. The treatment regime is still relevant for sure. It’s just that in my view it’s ear trouble. And indeed if you press a good medical professional as to the root cause of MAV they will admit they don’t know. Medicine does not understand the true etiology of MAV. Yet.

If you’ve found a regime that is working for you (and I did too), stick to it!

Hope that helps.

For the benefit of others and myself, do you care to reveal your cocktail composition of the 4 migraine drugs ?

sorry if you have already shared this info in another thread.