Maybe this is what I have?

Hello all,

Three years ago, while home for the summer from college, I was sitting in my room, using my computer while also watching a baseball game on TV. All of a sudden, I got extremely dizzy, and I quickly walked to my parent’s room. While walking, I felt as though I was going through a tunnel with a sideway-sloped floor and that I was walking at an angle. After a few minutes of burying my head in the pillows, the acute phase subsided, but I didn’t feel quite right. After a couple days of not feeling “right” I saw my primary care and he told me I likely had vestibular neuritis. I had an MRI done to rule out other things and it came back negative. It took a couple of weeks to realize what it was that was bothering me: I felt as though I were constantly moving or being pulled in different directions. (As I tried to describe to my friend, I told him to imagine he had been in a wave pool at a water park all day and had come home at night still feeling as though he were rocking back and forth - I felt like that, except worse, all the time.
I went back to school the next month without relief, hoping the vestibular neuritis diagnosis was correct and that my brain would self-correct. After many more months of no improvement, I made an appointment with a vestibular specialist in Boston. I explained to him my symptoms and he didn’t think I had vestibular neuritis. He then made an appointment for me to go through a whole vestibular battery of tests. The tests took hours upon hours: there was one where I’d get on an elliptical-like machine and the technician would perform various tests; one where I had to sit down in a chair in absolute pitch darkness and be spun around while my eyes were monitored, sometimes with some light on the drapes, sometimes with nothing but darkness); and one where the technician put water into my ear and had me follow things on the wall. It was quite the experience. Unfortunately, the tests showed nothing, and the doctor was left confounded. I continued about my life, but I was having more and more difficulty leading a completely normal life. The symptoms, along with certain anxiety, really started to change the way I went about my business. I would occasionally feel as though my body was trying to resist gravity, to float, but not necessarily strongly; driving could make me panic. I was able to get to and from school (about an hour and a half drive), but at night I would panic at points, and I never, ever felt fully comfortable. That’s what I think the worst part about it is - it’s not as though every few days my anxiety and symptoms act up, it’s that I haven’t felt fully comfortable for even a short period in years.

Some points:

-I don’t get migraine headaches.

-When I look up at a watertower or something similar, I feel very uneasy and I have to keep my mind off of it.

-The motion from elevators can make me uncomfortable for some time after the elevator stops.

-I feel even worse when the weather changes, and on days when it changes quickly from sunshine to torrential downpours I almost feel as though my consciousness has changed. Light plays a huge role - not necessarily sunlight, but artificial light. When I’m in a room with bright lighting for too long, I don’t seem to “feel” as much (some of this may be anxiety, but I do realize it all the same).

-Unfamiliar or not very familiar environments give me issue. I can drive to and from work well enough (I’m far from perfectly comfortable but I do it daily), but I struggle terribly - TERRIBLY - if I have to take an unknown road or highway. If someone else is driving, I look down most of the time.

-I don’t doubt that anxiety plays a large role, but it’s far from the only thing bothering me

Does this sound like it could be MAV to anyone? If there appears to be no damage to my vestibular system, as the tests seemed to show, I’m left at a complete loss as to what’s causing my maladies. This is really impacting my life - already I’m dreading a drive from Boston to Philadelphia this Thanksgiving, and I have no idea how I could at all enjoy a honeymoon to Europe next summer, as my fiance is suggesting. (I had trouble in Boston last weekend, I can only imagine Venice or Copenhagen!)

Thanks in advance for any help and guidance.

Adam

It sure sounds like MAV: no one can diagnose over the internet, but unfortunately, you’ll find that many neurologists and ENT’s are clueless about MAV. Normal vestibular function doesn’t rule it out.

I have MAV, and have had BPPV (crystals in the ear that cause bursts of dizziness with head position.) A common term for MAV is MARD, migraine anxiety related dizziness–I believed coined by Dr. Furman in Pittsburgh. The anxiety is very common with MAV: I always feel that if you were falling off a cliff, you’d feel anxious. With MAV, you frequently feel unsteady, and you worry about the "attacks:–why wouldn’t you be anxious? Many people who post here have gotten relief from the benzodiapam drugs (like valium) which are vestibular suppressants, but also anti-anxiety drugs.

Like you: I feel horrid after an elevator ride (I thought every did…), I also can’t look up without feeling dizzy.

Unfortunately, when you are not treated, or validated, it’s easy to get worried. Your symptoms are not being addressed, and you’re told the tests are negative, so you should be fine.

I congratulate you on hanging in there for college. I hope you fiind a physician: an ENT, a neurologist, an otoneurologist, who will treat you so you don’t have to suffer from the anxiety. It’s part of the very syndrome.
I personally don’t get classic migraine headaches, but they run in my family, and the diagnosis was a huge relief for me–I wasn’t crazy, and it made sense of what I had been experiencing. If you read the stories, I think you’ll find that people have unfortunately had to go from doctor to doctor until they get diagnosed and treated.

So, in my opinion, I’d suspect MAV.
kira

I forgot, barometric pressure changes effect me as well: they also effect the members of my family who get migraines and get dizzy as well.

Kira

Sorry to keep submitting so many posts: there is an excellent otologist at Mass Eye and Ear, Dr. Steven Rauch. He understands MAV quite well. So, if you’re in Boston, and haven’t seen him, you may find him helpful.
Kira

Thanks for the advice and kind words. Certainly, I didn’t expect a diagnosis on the net (and I wouldn’t accept one!) but of course any input is very helpful.

A few more things I forgot to add:

  • I do not have any visual symptoms.

-I have not noticed head position playing a large role.

-Just looking up (or down, or left, or right) doesn’t really do anything. It’s looking up at a water tower (or something else) when I’m outside that seems to do something - though anxiety plays a huge role there.

-I can look unbalanced when I walk without thinking. I walk into things (doorframes are my specialty!). Oddly enough, whenever I think about it (such as when tested), I can walk in a straight line without issue.

I should also add that my primary care tried to give me some anti-anxiety medication, but I was so very apprehensive (side effects, etc) that she finally decided that it wasn’t a good idea. I’d perhaps try something that would potentially treat the cause, however.

I have not seen Dr. Rauch. I will look into him. Thank you.

Thanks,
Adam

I second the opinion that you should see Dr Rauch. He has actually visited this website on occasion and posted some meaningful feedback to me (some of which I really should get around to implementing!)

Dr Rauch has a site with excellent videos:

meei.harvard.edu/shared/oto/rauch.php

From what I understand, it could take a while to get in and see him, but it would be well worth it (you can still trial other things in the meantime - dietary modification, magnesium/riboflavin daily etc. if you are interested)

— Begin quote from “adam”

I second the opinion that you should see Dr Rauch. He has actually visited this website on occasion and posted some meaningful feedback to me (some of which I really should get around to implementing!)

Dr Rauch has a site with excellent videos:

meei.harvard.edu/shared/oto/rauch.php

From what I understand, it could take a while to get in and see him, but it would be well worth it (you can still trial other things in the meantime - dietary modification, magnesium/riboflavin daily etc. if you are interested)

— End quote

Thanks, Adam. I’m going to get a referral and call his office Monday.