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Mild MAV?

Hi All,

Just joined the group. Lots of useful info here!

Been dealing with this some kind of persitent ear/brain dizziness issue for the last 6 months. I seem to have the same symptoms as many of you, however one thing doesn’t seem right: Most people seem to be bed ridden and unable to function when this mess hits, I on the other hand haven’t had to spend a day in bed or miss a day at work (yet). It is horrible and a constant struggle, but I feel if this was truly MAV, I would have had to hit the deck due to the severity of the MAV symptoms by now.

Have done the rounds with doctors, all tests normal etc - one thinks I have MAV, others think it’s unlikely as it is not so severe and I am still able to function.

Do you think it is possible for one to have a mild version of MAV?

Thanks!
Kris

Welcome. Yep, definitely. MAV wears many different coats, if you are young and otherwise fit and the underlying roit cause doesn’t fluctuate too much, I’d say ‘Why not’. If you had one MAV dx you’ve not much to lose by treating it to see if it goes away. That in itself would be proof it was MAV you’d had! Besides not everybody with it ends up bedridden with it. MAV morphs over time. Mine was episodic for a decade and despite bad acute attacks it didn’t keep me in bed (kept me off work a couple of days usually) not for quite a few years. As a chronic sufferer I’d say treat it now whilst you can still function. So much easier and not as far to have to come back from. Helen

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Welcome to the board Kris, hope you get this under control

Nice to see doctors recognising the impact it can have!

I’m sure there are degrees of it, for sure.

I have (mild) hearing loss, for example, others don’t.

Hello Krog - welcome.

I agree that it is still possible to have MAV without being bed ridden for long periods of time.

While I would call my MAV mild in comparison to some others here, it is still debilitating and it is difficult to plan life events when I don’t know when an attack is likely to happen. At the times of most frequent attacks, I spent a lot of time sitting at railway stations waiting until I could walk without falling down.

So, yes, it could be MAV. I say this as a patient, not as a doctor. Did the doctor who diagnosed MAV offer any treatment for you?

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Hi Heliotrope,

Thanks for the reply. The doctor told me to take magnesium and B2 for 3 months. This hasn’t done anything for me, so I think it’s time to get on the hard stuff.

Hey!
Welcome. I have never been bed ridden with this. The only time I had to go in the hospital was because of a side effect of a med (I had horrible insomnia and anxiety from steroid combined with zoloft and gabapentin), but before and after, I have never stopped working or taking care of my house. It is certainly exhausting though!
If diet, exercise, magnesium, etc has not worked, maybe yes, you need to start thinking on a preventive for a little while.
All the best in the recovery,
Laura

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Welcome Kris! I was never bed ridden, probably because I never had the awful rotational vertigo. I’m a “rocker”, so it always feels like I’m walking down the aisle of an airplane. Uncomfortable yes, but able to function physically without falling.

I don’t see any reason why dizziness has to be severe for it to be MAV. People can have mild forms of strokes, even mild forms of migraine, so why not MAV?

Anyhow there is no real proof that you have it, the best test is to treat yourself for it and see if you get better. After doing exactly that, I could tell that it was most likely MAV for me. No other condition made sense, and I researched the @$%# out of it like most people on here. Good luck and keep us posted!

Erik

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Thanks for your comments and warm welcome everyone. Will let you guys know how things develop. Hopefully it will be in the success/positivity section :wink:

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Hi Kris
Welcome to the group. My consultant describes MAV as Migraine Variant Balance Disorder and it does seem to have a wide remit of symptoms which brain dizziness fits into. Although not bedridden, apart from when it first started, I was unable to work for 5 months last year, but things are much better now. I do still get ear & head pressure and tinnitus but no more dizziness. The key thing seems to be to get a correct diagnosis - difficult if consultants can’t agree about it - and the right medication. Have you seen a Neuro-otologist? If not I would recommend it as some GPs are baffled by MAV. Jan

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Hi Kris,
I am relatively new to this forum as well and wondered the same thing at first because I have “attacks” that last about 4-5 days. It started about 4 years ago and only happened maybe twice a year and was not so debilitating as to keep me in bed but it sure messed up my day. This past year (summer of 2018) it started happening more frequently (every 3-4 month) then about every 2 months, which is where I am currently.

I generally function most days I am having an attack (only occasionally going back to or staying in bed) and am almost completely normal many days when I’m not in the attack. Dr. Rauch assured me that just because my symptoms are not always there and not “just like the textbook says” it doesn’t mean I don’t have VM. He is (I understand) one of the leading Dr’s on MAV so I’m taking his word!

In my completely non-medical opinion I think I have been lucky in that it has manifested itself in this on/off fashion and that I happened to get the right Dr’s early on. My humble opinion is don’t rule it (MAV) out for yourself just because you haven’t been knocked down with it. Welcome and good luck!

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I agree with your every word. Diagnosis by the ‘tick box’ system is rubbish with conditions like MAV because it changes over time and all too often people are dismissed as not having it because some apparently ‘diagnostic necessity’ according to a particular medic is missing whereas in all probability it just hasn’t occurred yet. After 12 years of misdiagnosis I was diagnosed with ‘probable’ MAV in 2015. I don’t get headaches and it was 14 years in before I ever experienced ‘aura’, two years after my ‘probable’ diagnosis. In my book that makes the ‘probable’ a certainty! I’ve never since seen that neuro-otologist and never likely to but would imagine he’d most probably agree.

Just for the record my MAV was very much like yours for more than a decade. Contained episodic attacks that lasted 72 hours, then completely gone. Then it went chronic. Helen

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Actually my MAV/VM was under control for the first year taking gabapentin. It developed into Persistent Postural Perceptual Dizziness (PPPD) which is daily dizziness along with anxiety, nausea, fatigue, and other symptoms. Now the dizziness is constant and continues to change in intensity and feeling. I’m on additional medications and did two outpatient sessions of Vestibular Physical Therapy and have a therapist and psychiatrist. If you can rid yourself of MAV before it becomes PPPD that would save yourself a lot of grief and pain.

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Hi Ron,
So sorry yours has progressed how it has. I hope you are able to get it back under control. My plan is to definitely try and get it under control before I become chronic. After reading so many of the stories on here especially Helen’s (hers seems to resonate closest to me so far) I realize I need to act NOW before I get any worse. I will be starting a trial of Effexor while still trying to minimize contact with my trigger food.

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Thank you. I have no idea why or how mine became chronic. Maybe I should have done VRT sooner, but I was still working and had limited free time. I did VRT a year after coming down with VM then diagnosed with PPPD.

Did Dr Raunch suggest that? As a first try?

Good point Ron has here. The quicker The Beast is tackled, the better. Far better to attack it before it goes chronic too. Would imagine it’s more likely to respond quicker too whilst your balance is still able to reset on its own, and before adaptations become habitual and balance issues become entrenched. Helen

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Like mine I suspect. Just because it was going to. Did you find VRT helped you? It certainly didn’t help me, quite the contrary. By the timing I’d say it really did finish me off. I was already dizzy 24/7 when I started VRT but at the end of six months of it I was 24/7 dizzy and having back to back confined to bed attacks on top. Helen

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Hi Jan, Yep saw a neuro-otologist who blew a hole in my eardrum with the caloric test :). He was of the opinion that one needs to be visually dominant for MAV. Apparently visually dominant people read quickly and as I don’t read quickly, it was one of his main reasons for ruling MAV out. So ended my high hopes of getting a solid diagnosis/treatment from probably the only neuro-otologist in Switzerland.

Hi. I haven’t been bedbound either. I’m sure mav has varying degrees… Every ailment does doesn’t it? And during those episodes one becomes more visual dependent… So that also waxes and wanes.
You say the doc you saw “blew a hole in your eardrum during a caloric test :)”… And the smile at the end of the sentence suggests that’s a good thing? What was that like?
Hope you’re well.
Anthony

Ps. Although not bedbound, I’ve altered my work in a huge way in order to accommodate the mav. Also, avoidance is a big part of mav which can give birth to agoraphobia since anxiety is always an accompaniment to disequilibrium.

He’s obviously a diagnosis by the ‘tick box’ system consultant. Dr Hain writes that people who are more visually dependent are much more likely to develop visual vertigo (think ‘supermarket syndrome’ Etc). Visual vertigo is where looking at certain patterns etc causes dizziness which can add to MAV symptoms and no doubt reduce ability to recover but I, who have researched all the eye related literature extensively over years because I am extremely visually dependent, never came cross that one before.

Never heard that before either. Certainly true in my case. I can read a book in an evening. Helen