The Vestibular Migraine Community
Please read our welcome post!

I need help understanding how MAV/VM works, could someone with real experience help me please



I’m having a pretty hard time understanding all this. I’ve had this diagnoses of MAV for 2.5 yrs and I still for some reason can’t figure it out. I have vertigo everyday in some form, some days are less and some bad. I don’t understand the migraine part of this disorder. I know it sounds stupid to most people, that you think by now it would make sense, but it doesn’t. I don’t understand how someone who doesn’t feel the migraine head can be dizzy 24/7, or how a person can be dizzy 24/7 in the first place with this. I don’t feel like I’ve had any compensation with my brain with this since I am dizzy everyday. This may be a bit long because I want to give you information.

First my the sensations I feel now are: Vertigo as my doctor explained it is the feeling of movement when there is none. I feel like im moving all the time, sitting, standing or laying down, boat floating feeling like i"m being lifted up then going down with the occasional dropping sensation, like i’ve dropped 20ft. When looking around a larger area like my kitchen it looks the way it would when your standing on a boat and looking at the horizon it looks like the room or whatever i’m looking at is moving in a wavy like motion. When scrolling through my phone lets say, in my peripheral vision it will look like the room has turned and I usually gasp. Sometime when sitting or standing it feels like the room is going to turn or I’m going to turn but don’t. All of this movement sensations are felt through my entire body,not just in my head type of dizziness.

When this started I felt like I was rocking all the time, that lasted about a year, then It went to this bobbing around feeling, in the last year to now its been this horrid boat floating feeling like i"m being lifter up then going down with the occasional dropping sensation, like i’ve dropped 20ft. These are all the symptoms/sensations I’ve had over the last 2.5 yrs. Rocking/swaying, falling feeling when I turn my head, quick spin sensations usually when I’m looking at my phone or bending forward it just hits fast then is gone, very dizzy before a hot flash (Im post menopause) floor feels like its moving up and down when I walk this is every night, headaches from my neck into my my head usually the forehead area or back of the head, anxiety, depression, floating feeling, being pulled to the right feeling (my ear problems are always on the right), feel like I’m being pushed when walking, sinking feeling when sitting or standing, what I call a raft floating feeling (like I’m slightly moving upand down like on a raft) bending forward and room feels like it will spin, backward falling feeling, head pressure, jaw popping Had this one for years, sensative to light and louds noise, crowds and patterns, mid and lower back pain ( assume this is from trying to be stable all the time when walking) neck pain and tops of both shoulders are tight, vision is off at times, leaning feeling, feeling like I’ll fall of the bed if to close to the edge.

History:, Had possibly 1 migraine in my life, my daughter and son have them. I’m hypothyroid, menopausal, anxiety disorder, had BPPV in 2009 and had rocking dizziness in 2010-2012 and it stopped on its own, but I did pay much attention to it because I thought it was the peri menopause, had MRI in 2010 results normal except for white lesion matter on frontal lobe indicative of migraine or possible past lymes, never tested for lymes. CT scan in March 2016 because heaDaches were daily, normal results. Have had what I thought where stress headaches for years with neck pain, but neuro ENT says where most likely migraine in form. Before I got MAV I was under a lot of stress and thats all I can contribute it to.

Medications: Propranolol 2.mgs twice a day and started nortriptyling a month ago 10mgs a day, and today was increased to 20mgs a day. Xanax when I need it and it is the one thing that stops the vertigo while its in my system.

Did VRT for 4 months and it helped then i started the propranolol and stupidly stopped doing the VRT at home thinking the med would stop all this.

Medications tried: Amitriptyline 10mg bad reactions, mirtazapine helped stop dizziness but bad side effects, klonopin cause worsening dizziness, ativan worsening dizziness

Triggers are very hard for me to figure out, because I’m dizzy all the time. The only triggers I"m sure of are, msg, chocolate sometimes, orange juice, banana’s, mango’s, weather changes, stress, anxiety, fatigue

I spend alot of time wondering if MAV is really what the problem is, why because I don’t understand how anyone can be dizzy or have vertigo 24/7 for this long. I don’t have headaches daily but I have vertigo daily. If I’m not having a daily headache how can it cause vertigo? I have researched high and low on this and can find nothing really that relates to MAV that has detailed explanation. Everything I read is about the migraine headache and how it can cause dizziness, but this is in episodes when the migraine is coming or during. MAV is not episodic for me. But everything says its episodic. So I"m hoping someone here can explain this and maybe give me some references to read. Thank you for taking the time to read this and to help in any way possible. I think if I can better understand all this maybe the frustration and anger I feel will go away.


This is the $m question. I don’t think we know for sure. But I suspect it’s ear trouble combined with a lack of compensation. I’ve written extensively about my personal theories.

There is no doubt in my mind however, no matter what its root cause, MAV is a distinct condition and we almost all suffer from it on here because our symptom spectrum seems very consistent.



I totally understand your frustrations. Like you, I wonder if my brain is really compensating because I’ve had good times But I have had bad times following the good times. I’ve been struggling with this for a while now as well.

May I ask, have you looked into Mal De Debarqument Syndrome? It sounds similar to the rocking and the vertigo that you experience. I have had vertigo(sense of motion) for a very long time but it has not bothered me until recent years where I believe I have MAV.


My doc says MAV, but I’ve considered MDDS. The feeling of moving is getting worse . I don’t understand how this can be daily.



Hi Patty! How long have you been dealing with this and have you started an treatment?


Hi Camille, I’ve had MAV for 2,5 yrs. I’m taking propranolol 20mgs twice a day and started nortriptyline 10mgs 4 weeks ago and am about to increase the nort to 20mgs. My doc said it takes a couple of months for the meds to work and to find the right dose. I’ve tried some other meds but had bad side effects, I’m at loss as what to do, I’m the only person I don’t think is getting better. What did you do to get better? Are you on meds?


Hi Patty,

Don’t lose heart. You are not alone. Today had a major setback had 2 to 3 vestibular attacks which has left me more dizzy than usual. The progress is not linear and is offset by setbacks. Propranolol and Nort are two popular meds and hopefully together they work for you.


This is interesting to me. Do you remember how long you were on Mertazapine before you noticed that it helped the dizziness? I lasted on a small dose for 6 days maybe 2 years ago, but it made me so incredibly groggy all day that I couldn’t take it. The first day all I did was sleep, and could barely keep my eyes open that day or the rest of the time. But I really liked that it didn’t give me nausea or increased dizziness like a lot of these other medications have.


Hello Patty,

Well, I have to say as well, do not give up. Currently, I am not feeling the best that I can feel. But I know there is a right treatment out there for me to try. Before I even gave medicine a chance, I just wallowed in my misery. However, summer 2017 I started amitriptyline. Although I didn’t stay on this med, it helped me for some time and really put things into perspective. Now I am on Nort 35mg but am considering trying something else. Dont give up on yourself. I truly believe that with persistence and a holistic approach, we can all be feeling good.


Gah, sorry to hear that, Vignesh! You will climb back and higher though, keep the faith!


Thanks James. I was surprised i was having a relatively good week and the attacks came out of nowhere. I did miss taking my supplements for that day, not sure if that kicked a chemical imbalance.


In my case, sometimes pressure finally builds up enough to produce ‘an attack’ and then it causes increased imbalance for a few days whilst it equalises, then on you go. It absolutely does fluctuate, some days worse than others. The weirdest thing for me is that you’d think the tinnitus intensity would correlate with the imbalance but it rarely does.


Hi Jess

The mirtazapine started working the first day I took it, but I did notice before I went off of it, I could feel the dizzy coming back some. But I was on a low dose and took it for about 10 weeks before I weened off of it.
I wish I could have stayed on it, it was the first time in 2 yrs I felt like myself and everyone around me noticed it immediately. Now I’m trying this nortiriptyline and it apparently takes months before you feel it or can get to the right dose. I’m so over all this.


Totally my tinnitus is silent and only dizziness. No brain fog, no headache. Weird ! This thing is a nuisance, i was planning to head out this weekend on a road-trip but now need to re-think…grrrr


See if you can do it anyway. Good distraction and you may feel a lot better by weekend.


True that, not shooting down the idea yet !


I was still having attacks during my 3 week visit to China last year, mostly in my nice hotel room. The trip REALLY helped distract me from my symptoms though, I just had to power through. You couldn’t waste a day convalescing when spending so much money and being time limited, you simply had to get up and go - this might be your only opportunity to see certain things. On one occasion I was doing ok until I went on my haunches to take a shot of my wife and suddenly felt incredibly dizzy which impacted me for the next 2 days! There was so much interesting stuff to see and going on though it really really helped. That said I couldn’t have done that trip in my first 12 months of having the condition!!


I agree within reason pushing yourself is a good thing.


yes, within reason totally, and you may be earlier on in your journey than I was during my china visit, so take care and use your judgement.


Most of my symptoms come down to

2)Vertigo like feeling where visually nothing is spinning but i feel dizzy in my head (hope you guys get it). I got this today when i woke up from sleep.

the imbalance varies largely but it is always there and at best it is barely noticeable. The #2 dizzy in the head feeling happens once in a while and can make me anxious.

I hope i do not get the #2 when i travelling because i need my lone time and i usually walk it off !