Who has rocking balance not true vertigo diagnosed MAV?

Hi every one, i’m very interested in hearing from you if youve been diagnosed with mav that have a rocking or floating swaying type of motion, instead of true spinning kind of vertigo?
a doc recently said she believes i could have MAV , so i’m off to see a new neuro soon. but some people and doc’s believe if you dont have true spinning type of vertigo, then you dont have MAV.
thankyou very much in advance,
jenny.

I have more of the rocking sensation, swaying, leaning…general disequilibrium than I do true vertigo. Although I have had true vertigo but it only ever lasts a second or two. However, I’ve not been diagnosed with MAV and am really on a journey of self understanding and when the time warrants (I do not have ins. coverage) I will visit a neurologist.

To be honest, although I have been diagnosed with migraines by a neurologist at a time in my life, I also have a lot of other things going on that I’m not sure are related. It makes it hard for me because I have an anxiety disorder so I find it difficult to differentiate between what might be true symptoms with an organic orgin and what might be somatic in origin.

Peace,
Andrea

I have the rocking/swaying sensations. I have never had true spinning vertigo. I have not been officially Dx’d, but my neuro thinks it could be the issue. You don’t have to necessarily have true vertigo.
I have had this lovely monster for 3 years. It all started with a lightheadness/nausea that last for about a month out of the blue. Since then, I get bouts of this rocking thing. It happens anytime, sitting, standing. It can last for 24/7 or be there every other day. Strangest, most annoying thing ever! I have had migraines in the past, but I don’t get the painful ones anymore. My neuropthomogist said however I have been getting migraine behind my right eye. I was having eye pain for a few weeks not stop. My rocking sensation is the main sympton, but I also get arm and leg tingling, and restless legs. Who knows if this is all attributed, but I also have anxiety about having something terrible…MS or something. I have had 4 brain MRI’s and bloodwork galore. Nothing shows up except non-specific white spots on my brain which neuro said could be consistent with Migraine, they are not consistent with MS.
Do you know of any medication that helps? I have tried antivert and it just makes you tired. Never tried anti-depressants, but I may.,

SOrry for the long reply…

It is funny how doctors opinions differ. The first of the pair of doctors that finally diagnosed me with MAV told me that without rotational vertigo, that I can’t have Meneire’s Desease. The second doc told me that what I described was pretty much consistant with MAV.

By the way, yes I get that rocking or floating swaying sensation amongst a few other odd types of false motion. The only rotational motion that I have experienced was during the caloric testing part of an ENG.

Hi Mae, i havent been diagnosed mav iether, i’m seeing a neuro again soon, i was seeing a doc to have my hormoans checked and she said she thought it sonded like mav, so we’l see.
the reson ive asked this Q is , i was diagnosed many years ago with mal de debarquement, but sympytoms over the years have gotten much worse, i see aura’s every day and at times have been very sick almost like i’ve had a very mild epilepsy,(without the convultion) anyway thats how it felt to me. recently i found out i was allergic to earl grey tea i had been drinking for years , since going off earl grey tea , some wiered symptoms i was having have gone , so i can rule thoughs symptoms out now , whitch is a big relief , i have you symptoms as well,
anyway the other day after a stay in the hospital due to super ventricular tachycardia attack,(heat speeding too fast ) i was given verapamil a calsium channel blocker, Adam has an article on the front page on this site, and it talks about this drug verapamil as being quite usefull in the treatment of preventing migraine, from what ive been told by another lady with mav who has been on it for some weeks now it is starting to work. so i’m keeping my fingers crossed , that if this is mav, or migraine then it will work soon.
it’s just that so many people believe that mav is only the spinning type vertigo and not a constant rocking motion, but then if you have aura every day that could explain this, thankyou for answering my question, and i hope you get the help you deserve very soon. i’m sorry youre feeling so horrible.
feel free to chat anytime,
jenny

— Begin quote from “Mae35”

I have the rocking/swaying sensations. I have never had true spinning vertigo. I have not been officially Dx’d, but my neuro Do you know of any medication that helps? I have tried antivert and it just makes you tired. Never tried anti-depressants, but I may.,

SOrry for the long reply…

— End quote

thanks Brian, thats interesting, are you being treated for mav yet.

also thanks Andrea , sorry i didnt get back to you sooner ,i know how frustrated you are about the anxiety diagnoses, and i do understand how the somato type illness works, my mother in law had that with her back , she was in terrible pain all the time. and that diagnosis dosnt make it any less valid. you are still feeling this terrible thing.
i hope you get a wonderfull therapist to help you through this awful time.
ive heard of floating type feelings can happen due to unresolved issues in peoples past , or things like shock form post traumatic stress. ect.
keep your chin up and if you need to chat , feel free.
jenny

— Begin quote from “Brian B”

It is funny how doctors opinions differ. The first of the pair of doctors that finally diagnosed me with MAV told me that without rotational vertigo, that I can’t have Meneire’s Desease. The second doc told me that what I described was pretty much consistant with MAV.

By the way, yes I get that rocking or floating swaying sensation amongst a few other odd types of false motion. The only rotational motion that I have experienced was during the caloric testing part of an ENG.

— End quote

Hi

I have both spinning vertigo and the rocking sensation. I have very few actual spins - on average two a year but lots of general dizziness and disequilibrium on a daily basis. I am more aware of the rocking sensation when I lie down in bed - I told my consultant that I seem to be constantly moving - like I’ve just got off a ship. He wasn’t inclined to throw any light on it so over the years through my own research I believe it is related to MAV.

Christina

Jenny,

Yes, I am still taking meds (being treated) for MAV. I recently was perscribed a med for a different problem that intereferred with my migraine preventative, and my symptoms started to get worse from the onset. After about a month and a half, I had to stop taking the new med because I went into a constant dizzy spell that lasted for four days. Quit the med and things started to get better the very next day.

In case your curious, what I call a dizzy spell can be described as a floating, rocking, off balance feeling, kind of like being drunk. Along with those symptoms, I also experience motion sensitivity, and a low pitch buzzing noise that is different from the normal tinnitus I hear. There are a few more symptoms that go along with my dizzy spells, but that is the jist of it.

Much more disequilibrium than full scale vertigo. I initially did have vertigo a few years ago, but it subsided, and the disequilibrium remained. All of my ear tests are normal (ENG, etc.)

thanks every one i’d love to keep hearing from as many people who have been diagnosed with mav who rock and sway like on a boat as many doc’s and others suffering these symptoms are saying thaty sensation dosnt fit with mav, that it has to be vertigo spinning only.
so it’s interesting. as mal de debarquement syndrome has been my only real diagnosis as of yet, and many people with mal de B have very similar symptoms to you all, and some doc’s say many people with mal de debarquement also end up being diagnosed as mav sufferer’s so thanks so much, i hope people will keep answering this question, the more people i can get that have a diagnosis of mav that say their dizzyiness is of a rocking nature the better.
thank you so much
jenny

Hi Jen,

I do have rotational vertigo at times, but the majority of my symptoms are like you describe – rocking, swaying, being on a boat, being off balance, feeling like I am being pushed, etc.

Allison

Jenny,

My condition started out with an occasional Vertigo Episode and it always happened waking up from sleep at night. I would become so sick i would vomit. After approx 3 years with about 2 vertigo attacks per year…in 1992 had another attack and after a severe case of vomitting a rocking motion sensation began and it has never left me. Alot of the motion is felt inside my head. Every now and then i feel like i am going to have a vertigo episode but it is generally because i ate or drank someting that triggered the sensation…or too much stress or stimulation. But i have made some progress since 1992…but still have a ways to go.

Joe

Hi Jennyd

I am pretty sure that I had 2 years of that constant rocking, unbalanced feeling before I had my first rotational spin attack. I still get the odd days when I am very off balanced and am rocking - more so when I am tired/stressed and need to rest. My migraines started after the vertigo.

I’m not convinced that MAV is so clear cut as some professionals like to think - and everything you read on here indicates that too from peoples experience. I don’t think MAV sufferers can be put into such a neat box of symptoms. In the UK there is not any clear cut diagnosis for MAV from my experience.

Jenny,
I’ve had all of the above. I’ve had true vertigo, where I spin, and I’ve had the rocking sensation, and at times–when standing–a feeling like I might faint or get sick. I do get a lot of nausea. I have nerve damage in one ear–that shows up on ENG’s, it’s due to a virus I had many years ago. Years later, I woke with vertigo. I like to sail, and never figured out that I’d be moving for days after sailing–the stupid computer wouldn’t sit still…Neither would the shower…
I agree that MAV isn’t one symptom–just like migraines vary so much.
So, I have MAV, mal de disembarkment, BPPV–more common in damaged ears. My symptoms vary.
Recently, after feeling stable for a while, I had a cold, and when my ears got clogged, I’ve had a couple of yucky days. I agree with Joe–I’ve come a long way, but I’ve still got a way to go.
Kira
and I thank Adam for this forum, and posting all of the articles.