Meniers or MAV

Hi I am new to this forum, my husband has had Meniers for three years, or so we thought…
I know the symptoms are almost the same, although he has not had any hearing loss?
As I am typing he is again in bed having an awful attack and it breaks my heart.
I would like to know if anyone here has ear fullness, like its blocked up , do you have it just before an attack or do you have it for a few hours and then attack, I am hoping he has been misdiagnosed and he does have MAV…
We are in limbo right now, his "attacks have become dreadful and for the past two weeks one every two days , its so distressing for him he cannot work and being self employed every attack loses money…
This is the first time I have been on a forum, I am at that desperate stage of what the hell is going on …please help, any advice …thank you ?

So sorry to hear that. Both conditions are extremely upsetting. I was diagnosed with MAV, but I do have some high frequency hearing loss (tested over 9 months of having the condition). I have also had fullness once for 24 hours, but not since, though I do feel ‘pressure’ from time to time. I believe MAV and Menieres are closely related spectrum conditions but the technology to determine why is pretty limited, sadly. MAV migraine attacks are also very nasty indeed, and MAV suffers generally have some of the symptoms issues 24/7, there is little or no respite - I have had persistent tinnitus practically from day one and fluctuating imbalance - so I would not wish either condition on anyone. Remission is possible with either condition but not guaranteed, though there is plenty of evidence of both MAV and Menieres sufferers getting better.

I think the medical community is getting closer to the truth - there is now a widely held hypothesis that Menieres is caused by blockage in the plumbing of the ear from the little crystals that populate the balance organ. It is very telling that the oft-used Gentamicin treatment that rids many Menieres sufferers of vertigo attacks turns out to be a very good dissolver of otolith crystals according to recent research!?

If this can be established for certain then surely an even better treatment can’t be far off?

Also scanning technology is getting better and better each year and it can’t be long before radiologists can image the inner ear at very high resolution and review 3D renders to permit improved diagnosis and research. There is also a theory that MRI scanners might be used to remove blockages as the magnetic fields have been shown to stimulate the balance sense, suggesting that the little otoliths are being moved about.

My personal theory is that MAV is also caused by otoliths in the wrong place, just presents in a different way, essentially a form of complex BPPV with migraine. Having lived with this condition for a year now I can just feel the pressure in my ear from some kind of blockage. I also know from my fluctuating symptoms that this blockage is changing over time. (hopefully towards remission!!)

Wish you and your husband the best of luck!!

Thank you, when I read your reply your comment “plenty of evidence of both conditions getting better” gives me so much hope. Its the smallest things we feel grateful for, this has taken over our life for three years and then another specialist says " I think you may have vestibular migraine, so I will treat you for both", so starting on Amltryptoline for MAV and waiting for Steroid injections , the wait cannot be verified for how long though, meanwhile he has had an attack every other day for the last two weeks.

It is so hard to watch someone suffer so much and there seems no end in sight, luckily I work so we do have money coming in which is keeping us going at the moment.

We are hoping the Steroid injections stop it all, then again that probably means its meniers…
the specialist refused Gentamicin injections he says it makes you deaf, I’ve read its the way to go and has fantastic results… I have read about the crystals also, then again I think I have read everything going…It is the most challenging time of all not knowing… thank you for you comments

Gosh, I know what you mean, and the opposite is true when you read a negative thing. It’s very hard to NOT research on the internet, because I have found a lot of ignorance in the medical community, and some doctors are frightened to be straight with you. Did your husband suffer any head trauma prior to these attacks?

Glad to hear he is starting Amitriptyline. I’ve had positive results with this.

1 Like

Yeah, considering it was designed in the 60s for something quite different, its quite the miracle drug! :slight_smile:

1 Like

Hiya i too have the 1 sided ear pressure and i have roaring tinnitus when it happens…the first 2 times felt fine after a few hours and the 3rd time all hell broke loose and i havent been right dr is convinced its mav as i also donr have any hearing lossloss,i think i do whwn i ahve the fullness and roaring tinnitus but im not sure if its the rinnitus being so loud that i cant hear.i also get distorted hearing suring these episodes.

Hi, no nothing at all,just very very stressed after our daughter was diagnosed with Anorexia x

Thank you for your comment,are you on medication?

Oh gosh that’s awful. A girlfriend of mine at university had that. She got better with the right care.

Well, weird I was replying to this post yesterday because I had spin attack at my desk today and after this a ‘heavy head’ feeling all day. I’ve had minor spin attacks before and spins that I can ‘create’ by turning in bed sometimes to the ‘bad side of the month’, but never had this ‘heavy head’ feeling, where it feels like its being pulled down on one side. Very odd! Had some sligthly fluctuating tinnitus but no fullness nor pressure. Imbalance is now much worse than yesterday. This all seems very menieres like to me though … something I’ve always suspected that these are spectrum conditions. I wonder if upping my amitriptyline will help?

She’s in her fifth year,hospitalised for nine months criticaly ill twice at 34 kg, back in again a few months later…it’s been the worst time and a dreadfully all consuming illness.
Sadly the same with my husbands too…just looking for answers for my daughter and my husband continously all this time. We value Amy time/ day that is " normal" and pretend the diagnosis has just happened to help in carrying on, it’s the only way x

My husbands just started his and is upping it each week, 25mg this week, 50 next and so on,I gave him 500mg Naproxin an anti inflammatory, his awful headache and blocked ear ended in an hour! First time using Naproxin whilst having an attack,his spin lasted another hour,but I think the naproxin helped, maybe it is Vestibular Migraines and not Meniers, isn’t it awful just not knowing.