MAV or Meniere's disease

Specific Illnesses & Conditions VM/MAV
1

Hi All,

What are your thoughts? Is this Migrane Associated Vertigo (MAV) or Meniere’s disease? I am still running through tests, assessments with doctors, ENT Specialist and Neurologist - no diagnosis as yet - hopefuly soon.

History
Since 2007 1-2 times every couple of months experianced bright spots in my vision (moving), with loud ringing in ears and severe dizziness - lasts for 30 secs then goes. Unsteady for a couple of minutes and then fine. My spouse has complained my hearing has been getting worse the past year.

On 11/11/2013 (Rememberance Day of all days), I woke and could barely sit up I was so dizzy (spinning), lasted for half hour then felt unsteady. Fell over in car park as I was walking along - no reason why - injured my wrist and knee. Was dizzy all day and fatigued. As the week wore on, I had daily dizziness (spinning), or if not spinning lightheaded and unsteady and, on occasion, nausea and very fatigued - often have to lay down for 2hrs or so after a dizzy spell. Ringing in both ears (cicadas) which varies in intensity is always present. I find myself on occasion leaning in or asking for someone to repeat what they just said. Also both feet have been tingling non stop since this started. Have had what feels like a reverse squeeze (diving term) in my ears on occasion. Also have a real brain fog - to the extent of not recalling names of people I have worked with for five years. I currently can’t drive and often need assistance to walk when unsteady or dizzy. Since all this started on Rememberance Day I have had no visual auras or headaches.

I have never suffered motion sickness, I have only had a few headaches in my life (years ago). My sister and son suffer from migranes. My mother had tinnitus (hearing aids for 20yrs or so) and vertigo and nausea before going totally deaf over a period of 20yrs (was diagnosed with BPPV).

As I have no idea of what I will be like in the afternoon, or the next morning, I can’t agree to meet someone or state that I will do something as if I am to dizzy, unsteady and nauseous I am unable to. I am very wary of going out by myself in case I fall over. I have the same concerns about travelling interstate or internationally as I know I will likely be non functional for lengthy periods, or even agreeing to have a teleconference or a meeting I need to be at to make decisions as I cannot guarantee I will be there, or if I am there I may have to excuse myself. As a passenger in a car I can often barely tolerate the motion.

Went to hospital - CT scan all good as was blood tests - nystagmus was present. Discharged with some tablets - had those for 3 weeks no difference. Saw doctor who thought Menieres - more blood tests, blood pressure tests - all good. Referred to ENT who after audiology and ENG and assessment thinks maybe MAV and should see Neurologist. ENT said it is not BPPV, ENG was fine (I did not get dizzy at all when laying there with the water torture treatment) and audiogram shows mild to moderate high frequency hearing loss with some minor low level hearing loss.

Saw my Doctor today who referred me to Neurologist, then ENT called this afternoon and says they forgot to tell me they want to do an MRI which I will get done.

Given the above symptoms - what do you think MAV or Meniere’s and why?

Staying chin up
On On
Mark :slight_smile:

2

The fact that you are a migraineur and there is a family history of migraine as well would make me lean towards MAV. You don’t need to have bad headaches to be a migraineur - I myself have never had what I would consider a migraine headache, and headaches aren’t a feature of my MAV - but brain fog, dizziness, false motion, visual auras, tinnitus, memory issues and nausea were all features of my MAV until I got in under control with meds and lifestyle changes

but of course I’m not a Dr, and this shouln’t be taken as diagnostic advice :-). But based on what you’ve put here, that’s my 2c

3

There can be so much overlap between the 2 conditions. But is sounds more like Mav to me too. You didn’t mention ear fullness which is usually one of the Menieres symptoms.Also Menieres usually comes with low frequency hearing loss.There is a typical loss pattern which is used to help determine this.

Menieres can be a catch all category for doctors who can’t figure out what is going on.It’s good that your ent sent you to the Neurologist.You may want to get an opion from a Neurotologist.Notice the T.They are a rare breed but know much more about the ear.

What ever you have I wish you well.

4

Thanks for the replies and your experiances…ear fullness in my post was captured by reverse squeeze - same type of thing, just a different way of dexcribing it. I also have not had any auras or photophbia or suchlike since this began on Rememberance Day. My hearing loss is mild at present in the low frequencies and mild to moderate in the high frequencies - my hearing comes and goes - sometimes its better and sometimes worse, however those damn cicadas are always chirping away!

I suppose that is what makes it difficult to diagnose between the two!

Off to the Neurologists and an MRI

On On
:slight_smile:

5

Is the hearing loss progressive or has it always been there? Yeah, there is a lot of overlap, but if your hearing loss progresses, I believe that is more typical of Meniere’s instead of MAV. It may be a hard call to make right now if you don’t have other audiograms to compare with. Of course, I’m not a doc either.

6

Hi Dizzyforlife,

I had a hearing test in 2011, which showed up to moderate high frequency hearing loss, I had a test last week which showed some low level frequency loss as well as further high frequency loss…

7

Hi Mark,

It sounds like you are a migraineur, I guess the question is do you have Meniere’s as well. Meniere’s is pretty slippery and as others have said, can be a bit of a catch all diagnosis, but it sounds like your team of doctors are pretty switched on and thorough and are not falling into that trap. Keep in mind migraine is very common but Meniere’s is very rare. Having said that, around 50% of people with Meniere’s seem to also be migraineurs, as opposed to 10% of the normal population (if I remember correctly).

I’ve had rotational vertigo, aural fullness, tinnitus and have high frequency hearing loss so have come close to a Meniere’s diagnosis but am still in the migraine basket.

Keep us posted and good luck!

Vic

8

victoria how is the topamax going for u? how long have u been on it and what dose r u on?

9

— Begin quote from “sarahd”

victoria how is the topamax going for u? how long have u been on it and what dose r u on?

— End quote

It’s going really well Sarah. I’ve been on it for a few months now, 50 mg - 25 mg in the morning, the other half at night. I was supposed to get up to 100 mg but as I’ve been doing so well at 50 mg I didn’t see the point. I did try a couple of times to get to 75 mg but was wiped out, completely zonked so didn’t bother to go any further as it had my vertigo so well controlled at 50 mg.

10

thats wonderful victoria!!!do u have any unsteadiness when u walk and did it help with that?

11

— Begin quote from “sarahd”

thats wonderful victoria!!!do u have any unsteadiness when u walk and did it help with that?

— End quote

My vertigo this time round wasn’t too bad, I was just starting to get symptoms - feeling unsteady, swaying etc. Topamax nipped all that in the bud very successfully.

12

thats awesome victoria, glad to hear it- keep us updated!