Do I have MAV? Please help me

Good morning,

My name is Javier and I live in the Netherlands.

I wanted to get your help to determine whether I have MAV.

For me, everything started in 2011 when I was 28. I remember being under a lot of stress back then and all of the sudden I started feeling dizzy. I would feel the worst when under pressure or stress to the point where I would feel the entire room moving. I always felt ashamed of this as I probably looked very awkward in the eyes of my colleagues, especially when I have to leave meetings suddenly because I felt dizzy.

From this point onwards I also became very aware of slanted surfaces. I live in Amsterdam and there are plenty of old buildings here. Every time I would sit on a chair on a slanted floor I would feed dizzy.

Recently I started working for a company that has its offices in an old building. Some of the rooms are slanted and I really avoid having meetings on those rooms because I really start to get massively dizzy. I’m not sure how long can I keep making up excuses not to have meetings in those rooms before my colleagues realise there is something wrong with me. Over a year and a half ago I also started having very strong tinnitus on me left ear.

So for me, there are basically two triggers of dizziness mostly: anxiety/stress and uneven surfaces. What is more, I have noticed that once I become dizzy, my anxiety rises automatically, so it’s a sort of vicious circle which seems to be common from what I read a couple of times in the forum.

I have been recently diagnoses by my doctor with MAV and I have started taking Depakote 250mg, but I would really appreciate having your opinion on whether you think I really have MAV.

Thanks in advance for your views!

Javier,

Welcome. Sorry you are going through this. May I say your English is excellent (as seems to be usual for the Dutch! But perhaps you are not Dutch :slight_smile: )

That’s how mine started in its chronic phase … I would feel momentarily dizzy when I felt stressed. It had been a really stressful year. Then one day I felt really light headed and then nauseous for 3 weeks, then the tinnitus started and became louder within about 3 months. 1 year in the unsteadiness is improving slightly and the tinnitus now has periods of quiet … I didn’t think this was even possible after so long … so I have hope … please have hope. There is significant evidence people get better on this site … it seems a period of 2-3 years (yes I know!) seems normal. Others don’t seem to be so lucky, but they seem few.

You are right to say anxiety creates a vicious cycle. I’m sure this is one of the traps you need to get out of to get better. You need to get comfortable feeling dizzy for a while, if that makes sense.

You may have MAV, but I am very suspicious of this diagnosis. I sometimes feel this is the diagnosis of exclusion they give you when they don’t think you have other things - wastebasket if you like. Clear MRI = no cancer, no ear fullness = not Menieres, etc. Chronic dizziness may have many causes, but I’d bet a lot of money most of it is to do with malfunction of some kind in the inner ear (which of course may be a passing phase and temporary). I think ear trouble can come in a lot of varieties not well categorised by medical community.

In any case the treatment of most inner ear conditions that can’t be resolved by surgery seems to be very similar, so rather than worry about the MAV diagnosis, focus on finding what makes you feel better. For me this is Amitriptyline @20mg per night. But there are plenty of other options if this doesn’t work for you.

This may be just a passing if difficult phase of your life, but try to find what makes you feel more comfortable for the time being.

Keep doing normal things and keep being social, keep working and keep exercising (I run 5km three times a week down my favourite route)

Your mental health really needs supporting during this time, so having a normal life as possible is really important.

Best regards,

James

Hello Javier,
Welcome on this forum, which, over the yerars, i found to hold excellent knowledgable Tidbits. And hello, i am from NL as well.
MAV and actually many a vertigo-dizzyness-related illness is hard to diagnose. So it would be really special if one of us, via means of a post on a forum could do so, and give you reassurance (or not).
Where or to whom have you been to get your diagnose? And what did they check out and what not?

I do agree on many points with "turnaround"s advices, but i do not agree on the wastebasket-thesis. Or at least not for how the VM diagnose tends to be given by the docs on the Apeldoorn Duizeligheids centrum here in the Netherlands. They actually work hard to make a positive diagnose, not a wastebasket one, and if they cannot they will only give you the “possibly VM”-diagnose at most.

Yes, anxiety is leading many of us into a vicious cycle with this. Actually the nerve-pathways (forgive me the simplistic language on this) of anxiety/fear/survival-patterns and the vestibular processing nerve-pathways lie very close together and once one gets excited, the other gets “infected” as it were. You are allready aware of this, and that may help a lot, one can do a lot to keep the anxiety in check and make it not go “vicious”.

The fact that the doctor prescribed you depakote impresses me. As far as i know it is not the first choice on the list of possibilities but he/she must have weighed the options and chosen this for a good reason. Are you going to give it a chance? Did you start it yet? I hope it will bring you some good results.

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That’s good. I will state i’ve been to one neuro-otologist & 3 ENT surgeons and every single one has given me a slightly or very different diagnosis. The one I have ‘officially’ corresponds well to how I have responded to prophylaxis, but doesn’t explain all my symptoms - for example: I’ve had two vertigo attacks that were almost identical bar one feature - the ‘headache’ which didn’t occur when I was on medicine, but didn’t stop the attack. I’ve also got fluctuating and persistent tinnitus: this is migraine??

The problem I have with MAV/VM is that it assumes the migraine is the cause, yet if you research you find that many of the more common vestibular conditions can give you migraines. In other words you are getting the migraine because of the underlying issue, rather than the migraine causing the issue.

Not only that, but the spectrum of symptoms are very similar across a range of diagnosis and MRI scans are way too low resolution to distinguish between different issues. I can understand why they are keen not to expose people to CT scans unnecessarily.

@turnitaround Thanks for your view and compliment James! I’m actually not Dutch but Peruvian, but I’ve lived in the Netherlands for quite some time already.

I know what you mean with feeling comfortable being dizzy, it’s been so long since this started that I’ve learned to bear with it but it will never stop bothering me.

Through time I’ve learned how to deal with this in my private life, however, what really concerns me is my career. This is extremely debilitating because sometimes I cannot just focus and give my 100%, if that makes sense.

@Lijne Dank je Corinne!

I hear you. I know this is very difficult to diagnose. In fact my discovery journey has been, probably similar to most people in this forum, a bumpy one. I saw a few doctors back home and they couldn’t tell what I had. I saw two doctors already in the Netherlands in the AMC and in OLVG in Amsterdam and not only couldn’t they figure out what was wrong with me but I also noticed that they weren’t really interested in following this up. In the end, one of them told me that it was probably just anxiety and I needed talk therapy.

About 6 months ago I went back home again and I saw a Neurologist who diagnosed me with Vestibular Migrane. He prescribed me with Depakote which I only started taking around 3 weeks ago, have a pill 250 mg each evening and eventually a full pill. I haven’t seen any improvement yet. On the contrary, when I started taking full pills I got this massive headache with even stronger dizziness- it was scary. I am considering now to stop taking Depakote and looking for other alternatives, including traveling to the UK to see Dr. Surenthiran. I have an appointment next week with my huisarts (GP) for a referral.

As you can see, my experience with the Dutch doctors wasn’t good and because of that I lost a bit of faith in what I could find here. However, I’ve never heard of the Apeldoorn Duizeligheids Centrum. Can you elaborate on your experience? Are they knowledgeable in MAV and would you recommend them?

It’s good to see I’m not alone. Bedankt!

absolutely understand this … I’ve had the same concerns

Take a look at this article, not drawing attention so much about Meniere’s but the discussion about the rate of mis-diagnosed vestibular conditions, e.g.:

“The high rate of misdiagnosis among patients with vestibular problems, causing unnecessary suffering and a waste of healthcare resources, was highlighted again in another analysis undertaken (Jin et al. 2012). In the study of 287 patients, mostly middle-aged women, who had visited the Dizziness Clinic at Changzheng Hospital between October 2010 and January 2011, 48 diagnoses ranging from Ménière’s disease to cerebral circulation insufficiency were overturned. All 48 were then successfully treated for BPPV.”

http://vestibular.org/news/11-08-2016/ménière’s-syndrome-or-ménière’s-disease

I fear that in the UK and maybe elsewhere, MAV is being diagnosed like Meniere’s used to be …