The Vestibular Migraine Community

Vestibular migraine or vestibular paroxysmia?


#1

Hi everyone,

I’m new here, and wondered if I could learn from some of your experiences and knowledge.

I have been suffering with recurrent quick spins for the last nine months. These are basically short (~3 seconds in duration) spells of severe rotational vertigo (the most severe I could ever imagine). After a spin, I will feel like I’m tilting, on a boat, or on a turbulent aeroplane for a couple of weeks afterwards.

I’ve been to a specialist ENT/neurology clinic, where the neurotologist diagnosed me with probable vestibular migraine. I have done some reading about this, and it doesn’t really sound like me at all. I have never suffered with migraines of any kind, there is no family history, and these quick spins don’t seem to be a feature of VM. I also don’t have any additional features during my spins - no sensitivity to light or headache or anything.

I asked the neurotologist if it was possible for me to have vestibular paroxysmia instead, because of the quick spin issues. He said it didn’t sound like that, because in vestibular paroxymia you usually feel fine between attacks, and have no vestibular symptoms (unlike me). I’m not sure if this is strictly true, as I have read some case reports about suffers of VP feeling like they are floating inbetween attacks. I also had asymmetric caloric responses, which would seem to fit with VP.

Does anyone here have any thoughts on any of this? Does anyone recognise this as sounding like VM (or even VP)? Any help would be much appreciated. Feeling a little isolated at the moment :frowning:

Many thanks,

Becky


#2

Goodness, that’s a new diagnosis on me, I had to look it up (VP).

I think in any case MAV/VM is probably something else. My personal theory is MAV is what a lot of ENT’s used to call Secondary Hydrops. I was diagnosed with MAV then SEH. Hydrops compresses the nerves within the ear chronically and fluctuates. It can also cause vertigo. It can develop from a leak of inner ear fluid (perilymph) as the body compensates and attempts to keep the fluid pressure up despite the leak.

I sometimes throw my hands up at ENT medicine because a lot of these diagnoses seem like very convincing ‘stories’. People seem to forget that MAV is defined by a set of symptoms (and a lack of profound hearing loss as per Menieres), it does not presume the cause is migraine. Then people get carried away and imagine that a ‘silent’ migraine is permanently active and causing the 24/7 symptoms. I personally had had only one migraine in my entire life before ‘MAV’. I feel the Hydrops explanation for those constant symptoms is far more convincing …I also believe that spins are very likely to be due to fluid leaking from the inner ear and causing a current which stimulates the movement sense. Perhaps there are other causes of ‘the spins’ but to me that would be the most simple explanation. The windows to the inner ear are exposed to mechanical and barometric pressure and can easily be damaged with trauma, leading to chronic leakage as the wound goes through a cycle of healing then reopening under pressure … and age probably has an effect on the strength of these windows too as, for example, collagen levels decrease with age.

Just my 10 cents … hope you get your answer soon.


#3

Hello Becky. I used to get mini spins. I could be standing talking to someone and suddenly I would wobble and have to grab something or someone to stay upright. It lasted only seconds but the aftermath of feeling unwell lasted for days. VM meds have stopped all that I am delighted to say because people kept asking me if I had had too much alcohol!


#4

Its great your spinning has stopped, whoopie!

My experience was different though. We need to be careful of confirmation bias.

I thought I was clear of vertigo for a while on the meds then I was hit with a mother of all vestibular attacks whilst on Ami http://www.mvertigo.org/t/the-magneto-head/13123?u=turnitaround. So on the contrary, I believe the meds only dampen sensatoin of the spins but don’t do anything to prevent them.

I am convinced my spins were physical in nature because they would almost always occur when laid down or when laying down. Sure I had a few standing up but they were the minority. Head pressure is known to be higher when you are laying down, so its not surprising.

I’ve been clear of them now for a couple of months … (touch wood!!)… and this has happened just as a sensation of fluid in my middle ear that I’d had for over two years has all but disappeared. I think these things are linked, and its definitely physical for me and it seems something healed enough for the spins and the leak to stop despite no change in my medication.

Cheers,

James


#5

I note the following:

“Important differential diagnoses (to VP) are Menière’s disease, vestibular migraine, benign paroxysmal positional vertigo, epileptic vestibular aura, paroxysmal brainstem attacks (in multiple sclerosis or after brainstem stroke), superior canal dehiscence syndrome, perilymph fistula, transient ischemic attacks and panic attacks.”

(https://www.ncbi.nlm.nih.gov/pubmed/28262641)

well that’s quite a lot of alternatives, and well well well, includes perilymph fistula …


#6

One of the world famous Neurologist in New York thought I had VP, but could not confirm it 100% as I couldn’t have Gadolinium for my MRI. But, all my symptoms sounds like yours, but my symptoms increase when exposed to sounds including low frequency and with car rides. I also have oscillopsia. I was thinking I may either have VP or some kind of fistula. I have thrown out all other diagnosis as my symptoms doesn’t match anything else.
I will upload a Para from a book re: vestibular migraine in the next post


#7

Sorry, couldn’t upload. Here is what it says about VM: The typical patient is one with a previous history of migraneous headaches or motion sickness in whom the symptoms change to include episodes of dizziness. Although, typically of the “rocking” type, the dizziness may take any form, including true rotational vertigo. Attacks usually last minutes to hours , but it is not uncommon to see patients in whom symptoms last several days or weeks. Attacks of vertigo are often associated with other migraneous features, such as nausea, photo phobia, phonophobia, osmophobia, and increased motion sensitivity - an avertion to self movement and external motion.