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. Iām 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 itās 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.
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 )
Thatās how mine started in its chronic phase ā¦ 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 ā¦ I didnāt think this was even possible after so long ā¦ so I have hope ā¦ please have hope. There is significant evidence people get better on this site ā¦ it seems a period of 2-3 years (yes I know!) seems normal. Others donāt seem to be so lucky, but they seem few.
You are right to say anxiety creates a vicious cycle. Iām 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 donāt 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 Iād 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 canāt 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 doesnāt 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.
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 āpossibly VMā-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 āinfectedā 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 āviciousā.
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.
Thatās good. I will state iāve 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 āofficiallyā corresponds well to how I have responded to prophylaxis, but doesnāt explain all my symptoms - for example: Iāve had two vertigo attacks that were almost identical bar one feature - the āheadacheā which didnāt occur when I was on medicine, but didnāt stop the attack. Iāve 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! Iām actually not Dutch but Peruvian, but Iāve lived in the Netherlands for quite some time already.
I know what you mean with feeling comfortable being dizzy, itās been so long since this started that Iāve learned to bear with it but it will never stop bothering me.
Through time Iāve 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.
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 couldnāt tell what I had. I saw two doctors already in the Netherlands in the AMC and in OLVG in Amsterdam and not only couldnāt they figure out what was wrong with me but I also noticed that they werenāt 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 havenāt 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 wasnāt good and because of that I lost a bit of faith in what I could find here. However, Iāve never heard of the Apeldoorn Duizeligheids Centrum. Can you elaborate on your experience? Are they knowledgeable in MAV and would you recommend them?
Take a look at this article, not drawing attention so much about Meniereās but the discussion about the rate of mis-diagnosed vestibular conditions, e.g.:
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