Hi, I’m new to this site

Hi, I’m new to this site so I’m not sure I’m doing this right. I notice you mentioned NYU Langone? I have an appointment with their Vestibular Rehabilitation Center and wondered if you had tried it and if so, what you thought about it. I have already seen my primary care doctor, my ENT, and had the MRI with a neurologist, and all he said was to take Advil. I am getting very depressed but trying to carry on as best I can. My inner ear virus started January 7, and was precipitated by a lot of congestion, a nosebleed, and terrible headaches, which I attributed to a sinus infection. I also, unfortunately, have been a big pot smoker and as of January 1, quit everything, pot and alcohol. 7 days later, I came down with an extreme attack of dizziness and not feeling well,which over the phone my primary care doctor said was an inner ear virus. My ENT confirmed it a week later, but did not perform any tests, and said it would take a couple of weeks to get over. Well, here I am going into March, with mild daily dizziness, a sense of disequilibrium, and blurred vision, which leads to terrible headaches whenever I try to read and write, or watch TV, although watching TV is somewhat better if I don’t look at the screen the whole time. My dizziness gets worse when I am in crowds, or there is too much noise, or if I am in a store. I start to feel dizzy and unwell. I also get the pain in the back of my head, which sometimes focuses behind my left eye, which I now understand to be the occipital nerve, associated with the cervical spine. Neck stretches seem to help. My eye doctor confirmed that my vestibular system has affected my vision, they are all over the place, and she was the one who suggested that I get vestibular rehabilitation. I have a lot of appointments scheduled, one for a neurotologist, one for a headache specialist, and one for a sleep specialist, as I also suffer from insomnia (hence the pot smoking), but I have to wait a while and in the meantime, am just trying to stay relaxed and meditate. My fear is that because it feels so hopeless, I will begin smoking pot again. I’ve also heard that pot can help with the headaches. Also, that CBD oil can work, which I may just try out of desperation. If you know of any good neurologists who specialize in vestibular migraine, which is what I think I have, or if anyone has tried CBD oil, or any pharmaceuticals, which I know nothing about, please, let me know!! I live in NYC, so there’s got to be someone out there who can help me. Thanks! Ann

Hi, I noticed you mentioning the eyes. One my major symptoms, since I came down with the inner ear virus a couple of months ago, is blurred vision, like my eyes are trying twice as hard to stay focused, and then the headaches, which worsen with any activity requiring use of vision, i.e. computer, reading, TV, basically everything! I am also constantly mildly dizzy, although I would say that for me, the headaches and blurred vision are worse than the dizziness. I have my first appointment with VRT at NYU Langone, on Monday so we’ll see how that goes. I find that meditation and self-hypnosis (you can get lots of free YouTube tapes and download them to your phone) help a lot. It is definitely worse when I am stressed or obsess about it, and I sometimes get a slight pain in my left ear. Ahhhhhhh!

hi

it’s worth noting that a lot of Drs and ENTs start off with inner ear virus as the catch-all explanation and then change the diagnosis or look for another explanation if it doesn’t go away. i can’t tell you whether inner ear viruses have started MAV conditions for people, but i’m pretty sure that many of us had MAV all along - especially those who have had some episodic symptoms before. e.g. i had lots of 5-10 minute dizzy spells for months before the big MAV hit. but you can’t get a virus that comes and goes for 5-10 minutes and then comes back later - doesn’t happen - so i reckon i was MAV all along. others have different histories though.
good luck!

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Yep, completely agree.

I had ear trauma which caused me 5 weeks of imbalance and nausea. Then I completely recovered except for a daily morning fluid sensation. At the time I was told by several doctors I had a virus. After trauma?! With sensations of fluid? Give me a break!!! Then 5 months later - bam! It all came back and worse. I was then diagnosed with MAV. Of course it was related and in my case caused by trauma. I had all the symptoms of MAV and as a bucket diagnosis that’s what I was labelled with. Even now many doctors can’t explain why it started with trauma and refuse make a connection. A little bit silly to say the least!!

IMHO inner ear virus explanation might as well be an ‘old wives tale’.

Medicine has a looooong way to go.

If you study the anatomy yourself you realise much more can go wrong.

6 posts were split to a new topic: Looking back, I’ve had MAV for at least a decade

@gidlabu I have a very similar experience to what you said. I have had 10 minute episodes of dizziness in the year before MAV that i brushed off as probably low on sugar and not enough food. Until the point where the dizziness came and never left.

As most of us here my initial diagnosis was vestibular neuritis. During my first year i was in touch with folks who also believed they had VN and we were sharing tips until this did not go away and i finally got my VM diagnosis.