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MAV or Meniere's - any opinions?

I’d love to hear anyone’s opinion on this - after normal hearing exams (3 over a 3 year period), normal MRI, normal temporal bone ct scan, and an ENG in which the caloric was normal (both ears tested pretty much the same) but a central problem was seen my neurotologist tells me I definitely DON’T have meniere’s and my problem is vestibular migraine. He then took me off the HCTZ.

Yet the entire year I was on HCTZ I only had one major vertigo attack (and possibly one smaller one). Previous to that I had 5-6 in my first year. And after I went off it I had a vertigo attack within the first month and then another one a month later. Yet he insists I do not need to be on it. I don’t want to have Meniere’s but it seems if the HCTZ is helping then that may be what my problem is. What do you think?

Book - what is HCTZ?

Thanks, Brenda.

— Begin quote from “Brenda”

Book - what is HCTZ?

Thanks, Brenda.

— End quote

Brenda I think this is what book is talking about…

drugs.com/hctz.html

Brenda,
HCTZ is a diuretic and along with a low salt diet is used to treat Meniere’s. It is not used as a migraine preventive, however some women may be prescribed it if they have menstrual migraines which are caused by fluid retention (not applicable to me, I’m post menopausal, in fact my bad vertigo spells didn’t start until after I hit menopause). The doctor insists I do not have Meniere’s yet this treatment seemed to help me so I am confused. The low salt diet by itself does not seem to help. While the # of vertigo episodes I had while on HCTZ went dramatically down it did not change the constant feeling of motion sickness I have. My fear is that I am one of those who have both Meniere’s and MAV.
Book

Just my own little idiosyncracy: Ask a good doc about doing a “loaded” ECOG with a very experienced practitioner.

MS,
I’m familiar with the ECOG though I’ve never had one. But I’ve never heard of a “loaded” ECOG. What is that? Does it cause vertigo?
Book

— Begin quote from “bookworm”

MS,
I’m familiar with the ECOG though I’ve never had one. But I’ve never heard of a “loaded” ECOG. What is that? Does it cause vertigo?
Book

— End quote

Salt-loaded ECOG. You have to have a real pro conduct the test, though. The person who conducted my test was excellent. She’d been in the industry for a few decades.

No. The test will not cause vertigo. Having said that, obviously, if a Meniere’s patient loads up on salt, it will cause inner ear imbalance and disequilibrium or vertigo.

I didn’t have a loaded ECOG, but I came out positive.

Hain has a good grasp on ECOG.

tchain.com/otoneurology/testing/ecog.html

Updated:

dizziness-and-balance.com/testing/ecog.html

Here’s some more:

menieresinfo.com/ecog.pdf

journals.lww.com/otology-neuroto … phy.8.aspx

I had the ECOG, with the needle a long time ago and it it showed 60 per cent. I had the worse vertigo attack of my life and was hospitalized overnight in the hospital. The gentleman performing it said he had never known that to happen in 20 years of doing it. In the morning they told me I had menieres. I took my graph and readings to another hospital in Cambridge, they told me it wasnt menieres but an inner ear lesion. Some time later, another consultant told me I had endolymphatic hydrops. Then, in London, more ear tests, then the migraine clinic at Queens, said it was vestibular migraine, I asked why I had the severe vertigo attack whilst having the ECOG and they said my migraine must have been near the ear :? I had the calorics done at London, the third one, only made it half way through but they sent two letters to my drs., one saying everything was fine and another saying I had an abnormality and would have to repeat the tests (needless to say, I declined). It was at this point I gave up. Having put myself through hell with no conclusions, I wouldnt go through any more ear tests. Having said that, things may have improved over the years so that they can be more conclusive with the diagnosis, I wouldnt know. I just think personally, that migraine can damage the inner ear so hydrops is a possibility, things arent working as they should, one goes with the other.

Christine

Hey Christine –

I had the ECoG as well back in 2003 by the guy who invented it. Can’t say I enjoyed it at all and the doctor (Gibson) was an arrogant tosser but it didn’t leave me trashed thank goodness. What did leave me utterly flattened like I’ve never experienced since was the caloric in Halmagyi’s clinic. I was sweating like a farm animal all the way through it, complete with white knuckles as I nearly tore the hand rests off the chair I was reclined in. Think David Banner as he’s turning into the Hulk … that was me, minus the green skin and muscles. :lol:

Anyway, just wanted to chime in here and say that both the ECoG and the caloric are both crude tests and aren’t great at telling anybody anything unless there’s extreme stuff going on. Migraineurs never show anything worth writing home about. The “specialist” told me I had tons of fluid in my ears and to go on a salt-restricted diet. It did very little apart from cause me to eat really bland food for 6 weeks. In fact, I think there was some improvement because, unknown to me, I was on a migraine diet. Gibson wouldn’t know what MAV was if it blind-sided him. I’ll never forget him telling me to stop being so anxious and to calm down as he was preparing to skewer my ear drums. LOL

Scott 8)

You are so right Scott, when I went in for the calorics in London, having had two before, I was naturally, anxious (putting it mildly). The charming nurse assured me I would walk out the same as I walked in. I staggered out of there, had to sit for three hours outside the hospital before I could contemplate getting in the car for the three hour journey home.

The first one in Oxford, I was sat on the bed trying desperately to make the room stop spinning while they looked at me, bored, waiting for me to get out so the next victim could come in. I had driven myself up there, how I got home that day I will never know.

The ECOG, the worse for me, they collected the students to see the nystagmus before wheeling me up to the ward for the night.

I did the low salt (lived on eggs and jacket spuds) for months along with restricted fluid (made me worse).

Cutting out certain foods really does help me and if I stray I pay the price for it.

Christine

But hey Bookworm,

Dont let us put you off :smiley:

well, I think I might pass on the ECOG, haha, thanks for the warnings. Though if I were promised it wouldn’t give me vertigo I might go for it. In the end, the caloric was much, much easier than I thought.

I’m off to see the doctor now and as usual feel like I am on the verge of spinning.

I JUST WANT TO KNOW WHAT IS WRONG WITH ME!!!

My ENT and my neurologist both tested me at length to distinguish between Meniere’s and Vestibular Migraine and eventually decided that it was most likely to be VM especially as I had no hearing loss at that stage. My neurologist wanted me to do another lot of caloric testing because, she said, the results of that would be the tipping point in deciding for sure what I have. I don’t know what she would be looking for but I was soooo reluctant to do that awful test I chickened out and cancelled it. I haven’t had bad spinning vertigo for quite some time. Triggering it deliberately was something I couldn’t make myself do. Now I definitely do have hearing loss in one ear that hasn’t got better (and appears to be getting worse) so it’s back to the ENT guy again.

1 Like

Good morning! The caloric test was terrifying for me. I cried for the entire week and half leading up to it and called the ENT bawling to beg them to treat me without the caloric test. They refused. I went in crying and did the test… it was not bad at all! I did have a great audiologist who explained everything that was going on in detail, he was funny and so personable. All of those traits were just the consolation I needed. After doing the caloric test, I would do it again and also recommend it highly for anyone here that has Vestibular issues. Be careful though, some ENTs automatically place you in a purely vestibular disfunction category by abnormal results when in truth a abnormal caloric test can also indicate MAV.