I’m having a very hard time with all this. My anxiety is very high especially when I have sudden bad dizziness. Does anyone feel like they are moving internally when sitting especially and does it look like things are moving like your computer screen or things around they are moving with your internal movement? Its very hard to explain but I feel the movement through my whole body and looking at the computer screen or walking into rooms and stopping it looks like whatever I’m look at is moving at the same beat as the internal movement. I constantly feel like I’m floating on a raft when I’m sitting and have this dropping feeling. Its scaring me to death. I"m going to my doc on monday and going to see if he can help me figure out this new feeling. I know MAV can cause many things but this is making me nuts. I also have bad anxiety and know that is not helping.
Yup you’re describing the exact symptoms I had when this all first started. For me, the room used to tilt to the side so it looked like I was looking at everything on an angle
I also used to rock back and forth on my feet while standing. I still rotate back and forth in my chair at work to compensate for the internal movement I feel. In order to reduce anxiety keep in mind these are just sensations and they will subside. Also, while they feel terrible, you are not going to pass out, your brain is just getting weird signals.
Fortunately, it does get better. It just takes time. I would ask your doctor to put you on a migraine preventative, amitryptiline, nortriptyline or gabapentin would be a good place to start. Give any of these drugs at minimum a month (3 months is better) to start working
Thank you for your reply. I thought I was going nuts and no one else has these sensations. I have the tilting feeling a lot, I’m having it now, sitting at work and I feel like i’m going to the right. I also move my chair from side to side at work.
My ENT referred me to psychiatrist because he said the anxiety was pertetuating the MAV, I’m suppose to try a new med tonight, its in the same family as ami and nort, I tried ami and could tolerate it, but the psych is telling me this has less side effects, I’m also on propranolol 20mgs twice a day, tried to go higher but got dizzy, so have to stay low.
I try to remind myslef this will pass but the anxiety has really gotten me and now when I have an attack which seems to be a lot lately I get so anxious and stressed.
One thing to note is stay active. The pass 3 weeks was the worse from me because i had 3 weeks vacation and all i did was lay in bed trying to sleep and looked at my phone 24/7 while lying in bed probably because laying down 24/7 isnt good for your head and pressure. I started working again this past monday and things got little better with sleep and anxiety.
I find the best thing when I’m getting very anxious is to focus on my breathing. Even just taking 3 conscious breaths will help. It allows your nervous system a quick reprieve.
If things are really bad I’ll go outside and take a short walk and breathe some fresh air
Walking for like 10-15 minutes helped me a great deal even at 6 degree weather 
This is a classic MAV symptom. I don’t get it anymore (touch wood) but it was with me for over a year at least.
It comes and goes. You will become less anxious and more bored with this crap over time. It won’t hurt you.
Yes, I have this too. When I stop walking and look at a room in my house, nothing feels fixed. I don’t even like vacuuming my stairs because I feel like I may fall.
Sitting down at the computer is also hard for me because I feel an internal sense of movement. When I am the passenger in a car, it tends to subside while it’s in motion. My most distressing symptom is currently getting a jolt of dizziness when I move my head in certain direction and like a wave of dizziness going up the back of my head.
Bad anxiety here as well and thinking it’s the cause of my MAV-PPPD. I have seen three neurologists and the most recent recommended I try cognitive behavioral therapy. One also recommended mindfulness meditation along with medication and vestibular physical therapy. Currently on gabapentin (400mg) amitriptyline (20mg) and effexor (37.5mg) and have valium to take as needed for anxiety. Oh and the last neurologist asked me if I had experienced a traumatic event when coming down with my dizziness. I was working a very stressful and demanding job when I woke up one morning feeling “drunk” for no reason. I’m no expert but maybe our nervous system is damaged and we need time to calm ourselves and heal, and be good to ourselves.
Doubt it. Brain is extremely plastic. Most likely we are dealing with an unstable lesion of the ear eg a fistula. Migraines are thought be caused by sensory confusion. The brain is simply unable to compensate when the change is too great and doesn’t correlate easily with corresponding senses, eg healthy ear, eyes etc.
Hopefully this lesion will heal/settle over time and at some point the brain is then able to compensate. Or the upset may take more time than usual to compensate for.
Maybe stress could do it, but the mechanism could be upset to balance of fluids in ear (hydrops) brought on by over production of stress hormone ADH which is known to affect inner ear fluid regulation.
My money is on some insult to inner ear window though causing a leak however short lived. Loss of perilymph fluid causes hydrops. The inner ear windows are some of the thinnest membranes in the body and one of them is tapped by the stapes footplate. If you had enough of a loud noise or pressure against the ear drum, you could find the footplate hitting the oval window hard enough to puncture it. Even a cotton bud could do it.
My ‘MAV’ came on 5 months (mostly asymptomatic) after pointing a shower into my ear. This proves to me 1. It can be caused by injury 2. There is often a delay from the time of the initial injury to when the ‘MAV’ monster arrives. So it must be hard for some people to realise what actually caused their MAV.
They have also found Hydrops on MRI in ears of patients diagnosed with MAV who have also had tinnitus.
If you have tinnitus and any kind of even mild hearing loss I think the problem organ is very obvious!
Over 80% of respondent to my poll say they have a problem with position in bed - that sounds like a nervous issue? Nope, that’s got to be some kind of ear fluid problem all the way …
Remember anxiety is involved with any vestibular issue at least to begin with until the patient acclimates to the new sensations.
This i think is key ! Too much ADH can be a probable cause of secondary endolymphatic hydrops and this might not be discovered yet.
At the same time don’t beat yourself up over what is wrong with your ear if all the tests came back negative. Try to control salt and see if it helps(SEH). Try to sleep inclined and see if it helps (Fistula). Try the migraine meds and if you find relief stick to it.
Yes I agree with that sentiment. If cause is too hard to identify, focus on seeing what makes you feel better and reduces symptoms.