Help! Are these symptoms related to MAV? Anyone?

Hi all! I need help and advice on this… 8 weeks ago I literally woke up one morning feeling off and I’ve had these symptoms 24/7 ever since:

-A spaced out feeling, sort of like having had a few drinks. I don’t have “true vertigo” or sensations of spinning, just an off fuzzy head feeling.
-Sometimes it feels like I’m in a dream. I guess I’m having some “derealization” from all this.
-Going in stores or large spaces makes me very lightheaded. It feels as “sensory overload”
-Feeling somewhat disoriented in strange places or places with a lot of visual stimuli
-Poor concentration. Very bad brain fog
-Poor short-term memory
-Severe light sensitivity
-Trouble focusing eyes when looking at something bright
-Certain loud sounds startle me
-A few days where I’ve felt tingling in my hands, arms, legs and feet
-Constant 24/7 tension-type headache with varying pain intensity
-Severe anxiety and panic attacks (which I never had before in my life prior to this)
-Mild depression because of how much my life has changed in the past 2 months

I’ve had a hearing test, balance test and MRI with contrast and all came back normal so my ENT ruled out Vestibular Neuritis, Menieres or MS. My neurologist is saying I just have an intractable migraine and wants to put me on Nortriptyline, but I’m scared of taking AD’s! Anyone else with MAV had or has these symptoms? What treatments has worked for you? I’m desperate for a solution to this!!

I am referring you to a good, helpful article written by Dr. Jeffrey Kramer from the Vestibular Association. Maybe it will be helpful:
“Vestibular Migraine” by Dr. Jeffrey Kramer, Chief of
Neurology at Mercy Hospital, Chicago. You can google it (it’s a PDF) or you can access it at my resource page: Vertigo Tales and Tastes: (9) Resources. This is a somewhat simple explanation. Good luck to you.

Thanks so much for the info! I’ll definitely look into it.

A lot of it does sound like MAV to me. However, the tingling could be due to nerve damage. Personally, I thought I had MAV for a couple of years but am coming to realize now that my problem is more likely nerve damage due to poor posture and shoulder/neck/back muscle tightness. Since this affects the neck, and all nerves pass through the neck, I have had tingling in my arms and fingers, and I have also had a lot of symptoms similar to MAV. However, I have never had any inner ear related problems like spinning vertigo, which is something you mentioned you also don’t have. It might be worthwhile to find a physical therapist who can weigh in on whether you might have a similar issue instead of – or along with – MAV. Oh, and my audiological work-up also came back all negative.

Jon many years ago I had PT (actually a chiropractor) for nerve issues in my shoulder that was causing pinched nerves, pain and tingling in my hand, fingers and forearm One session was enough to get rid of the worst of it. A few follow up sessions helped but ultimately I had to do more exercise and balance my lifestyle to overcome it in the long term: I was spending too many unbroken hours at the desk in front of a computer.

Ugh tell me about it. I’m only 30 and I’ve been a hunched-over computer troll for probably half my life already. I notice enormous differences from just a few PT sessions though, and from following their instructions about how to sit at a computer. Pretty much all my lightheadedness has vanished. PT is a marvelous thing!

Yes Jon it is. I was really panicked and anxious when it happened and was incredibly relieved and surprised about how effective it was.

Inner ear/migraine trouble is unfortunately a lot harder to treat apparently !!

They were my symptoms exactly. My consultant diagnosed me with migraine variant. I follow the strict MAV diet and take 50mg Nortriptyline and I’m nearly back to normal. I think times a good healer too as I’ve had this since Dec 2013 x


Whoop. Good for you! Thanks for sticking around to tell us

I’m really considering going on a preventative! My neurologist actually suggested Nortriptyline… I’m just a little scared because I’ve heard such mixed opinions about the drug. I’m also very sensitive to drugs and tend to get all the weird side effects of every drug I’ve taken lol

I actually mentioned to my neurologist about it being a neck issue causing my symptoms but he immediately dismissed it saying that if that was the cause it would develop gradually not overnight (literally!) like my symptoms did, which made some sense to me. After having had the MRI, vestibular testing, hearing test, etc all come back normal I was left clueless about what could have caused all this, then my primary care doctor ran some extensive blood work and came back with very high titers of the Epstein Barr virus which shows as reactivated in my system. She believes that viruses, especially EBV, can cause a lot of neurological issues and she put me on an antiviral to see if I improve on it. I’m on my second week so far and can’t tell any difference but I’m hanging in there! If I don’t see any improvement on the antiviral, I will definitely go on a migraine preventative, because there’s no way that I can keep living like this!

If you are suffering do it! You will be amazed at the result. It makes life worth living again. It doesn’t get rid of all symptoms, but it makes a HUGE difference.

Oh yes, I’ll try anything at this point! I’m also considering going to a chiropractor because ever since my dizziness appeared, I’m having tension headaches every day and my neck and shoulders are killing me! I will definitely explore every option to recover from this

I also think the antidepressant would be a good option to help me with the awful anxiety and panic this has caused me.

that stiffness is because you are overcompensating with your vision - your brain is trying to steady your head to help with compensation. That goes with meds.

I really wanted to get better without meds but when my symptoms worsened to the point of having a migraine every two days I gave in and jumped! I’ve never regretted that decision because it lead to my symptoms reducing significantly and that alleviated my anxiety loads just for that reason.

yes! that totally makes sense! I get tons of pain in the occipital muscle behind my head and I’ve read that a lot of times poor vision can cause it, which in my case since I’m dizzy all the time my eyes are having a hard time focusing and processing visual info. Hearing that meds have helped people recover some sense of normalcy really gives me hope. Are any of you on the facebook MAV group?

I’m not, I prefer to have a little anonymity so I can more openly discuss my health.

Plus I really like the functionality of this website, its fantastic!

(FYI its based on

Gotcha! I agree, this site is great. So glad I found it :slight_smile:

I"m thinking of creating a discourse site for my local community now. They’ve even just released apps for iOS and Android (though the mobile web version works very well)

Thats cool. What part are you from?