Is this really MAV?

I have suffered with unrelenting, chronic dizziness for well over two years. Yesterday was the actual 2nd anniversary of my getting on to first, short-term disability, then long-term, and now SSDI. And I only really got a diagnosis of MAV last Wednesday.

Being new to this board, I am hoping that I can get confirmation that my symptoms are truly those of MAV so I can stop wondering what is wrong with me. The thing is, even my neurologist says that MAV dizziness isn’t unrelenting usually. So that is where I get confused and think it is not MAV.

He says there is a cervical-related component to my dizzness as well, but I have read that even cervical pain can be part of the whole migraine syndrome. I also have been diagnosed with CFIDS, fibromyalgia (under control with Cymbalta), orthostatic hypotension (but just a 10 pt drop on tilt table test), IBS (which he says can also be triggered by migraine syndrome) and multiple chemical sensitivities.

For a long time, I was convinced that this was from klonopin withdrawal. I was on .25 for three years and I believe that it really messed up my nervous system. But now, it’s been over two years since I titrated off it and I’m worse then ever.

I use a scale of 1-10 to describe the intensity of the dizziness on any given day.

I have head every test, including all the vng and inner ear tests, mri’s and CT scans of brain and sinueses, etc. All, thankfully ok. Slight vng irregularity on left, but the ENT said not even clinically enough.

So, here are my symptoms and I would love feedback:

  1. Unrelenting feeling of dizziness. Rarely the room spinning. More like something is swirling in my head, behind my eyes. Like being sea-sick, but I’m not on a boat. Severe brain fog with it and can’t find words sometimes. Best it’s been in over two years is a “3”. I also have a lot of neck pain on the right side with some issues in C5. And usually right-sided migraines, which can last for five days.
  2. My typical cluster when something makes it worse is:
    A. Head starts feeling full
    B. Palpitations come on and make my body feel weak and sort of cannot see clearly for a second
    C. Really increased dizziness
    D. Migraine starts shortly thereafter

What makes it worse:

  1. Computers make it much worse. I even bought a new monitor, but after an hour or so, I get my cluster of symptoms.
  2. Driving makes it so much worse as well.
  3. Being in big stores like Walmart and the Mall makes it much worse.
  4. Cell phone makes it worse and creates migraine pain on the left side.
  5. I had to move the printer and modem to another room and wireless close to me makes it worse.
  6. Supplements, foods, and medications can really set off a flareup.

I’m sure there is more, but this is the basic story of my symptoms.

I guess I want to know if this is typical of MAV. I want it to be because I really want a community of others like me to support me and who I can support.

Thanks so much,

Welcome Susan

You ask if your listed symptoms are typical of MAV. A great big ABSOLUTELY!!! Obviously you have other issues going on which are being dealt with but that doesn’t detract from the fact that what you describe is essentially MAV. Was it the doctor who prescribed all the tests that diagnosed you? And why do you seem to have doubts about the diagnosis or is it just that you want reassurance that something so life changing can possibly be “just” a migraine syndrome. I remember how sceptical I was at my own diagnosis!

Your ‘what makes it worse’ list is also so very typical. I was interested to see how cell phones make your dizziness worse - mine too! I don’t think I’ve come across anyone before who has said that.

Are you on any meds specifically for MAV? Have you been recommended to try the migraine diet? It sounds as if your life has been profoundly affected by all your health issues, so maybe by addressing both of those things you hopefully will find some relief.

You’ll certainly find a great deal of support on this board. It’s very much a give and take sort of place where we all help one another and of course understand each other. If one person hasn’t faced a particualr issue or gone down a certain route on this MAV journey you can bet someone esle has, and in sharing we all learn so much and also offer/gain emotional support when needed.

All the very best


Hi Brenda,

Thank you so much for your reply. The only nagging doubt was the fact that I have not had one minute without dizziness for well over two years and the neurologist said that wasn’t usual for MAV.

Just to let you know, I have had so many diagnoses for the dizziness over the past few years, and finally, most of the doctors just shrugged and said they didn’t know. I’ve seen three neurologists (the one that diagnosed me yesterday has been my neurologist the whole time, but this was the first time he was definitive about it), a neuro-otologist who said he found nothing, an ENT, a neuro-optomotrist (I had convergence insufficiency and spent $2000 to cure that - and was still dizzy), chiropracters, physical therapists, CFIDS specialist, cardiologist for tilt table test, two rheumatologists, and many more. For awhile, I was sure it was klonopin, then carbon monoxide poisoning (it wasn’t), then mercury poisoning (it isn’t).

No one has given me anything for this. I used Frova and Relpax when I get a migraine, but I told him I think I am now reacting to them. So we are going to try Topamax (generic). I doubt I will be able to tolerate it, as there is lactose in the inactive ingredients, and I usually can’t breathe, but am giving it a shot. I am so sensitive to medications they are loathe to give me anything. He was going to try a channel blocker, but due to my low blood pressure, thought of trying Topamax first.

So I am very interested in seeing what works for others with similar symptoms to mine. I do see lots of positive on here for Topamax.

Thanks again for replying to my post.


This cell phone thing is really intersting. I just thought I was crazy. About 10 years ago when I first got a cell phone, if I talked on it for a long period of time (> 30 min) my head would start to feel really weird. I never really figured it out, but at the time I had no migraine symptoms. Now I realize I was probably triggering silent migraines (silent in that I had no pain–they definitely affected my mood and ability to concentrate).

I have used a wireless headset for years now and that doesn’t seem to bother me at all. But I never linked my old cell phone issues with my current MAV problems until just now.

Well, I would get a feeling like the left side of my head was cracking with pain at the temple and a weird, numb aching down the cheek. For me, even a corded headset didn’t help. I ended up getting a land line again and that seems better for me.

Also, regarding the MAV diet, yes. I have read the heal your headache book and also, due to my food sensitivities, have pretty much followed it for years.

Thanks again.


Welcome Susan! Do you have sensitivities tolight and sound? Your list of symptoms also make me think of Lyme disease-have you been tested for that?

Yes to the sensitivities. And yes was tested using multiple types of tests for lyme by the CFIDS doctor. Thanks!

Okay, sounds like you’ve had very thorough testing!

How are you doing with the topamax? I am also taking that, currently at 150 mg and doing well with dizziness control.

Good luck!


Your symptoms are the same as mine. The only thing I really don’t get that you’ve listed is the headaches. But everything else you’ve mentioned is exactly me. I have been diagnosed with MAV by a really good Oto neurologist and my symptoms are textbook MAV.

Driving is probably the worst trigger for me. It happens as soon as the car starts to move and gets worser as I keep going. I can’t even drive but I do force myself to drive a couple miles to my sons school or the store. Are you able to drive at all? That for me is the worst part because I feel so isolated and been on a medical leave from work for 6 months.

I recently started taking Effexor and it is working really great but I still have a long way to go. I hope you find the right meds fast and get some relief. This illness is a beast.

Keep updating us. You will find a lot of great support here and great information.