Hi fellow mavvies,
I’ve been doing okay (not great but at about 75%) and have been traveling a lot because my daughter is visiting colleges. And now I have fluid in my eustacian tube. The doc recommended Affrin. Anyone had this trouble before? Any issues with Affrin and MAV? Could this fluid be the reason I’ve been a little “off” this summer?
I haven’t tried Afrin, but both benadryl and zyrtec help me for the same issue. So does avoiding anything inflammatory like dairy or sugar.
‘mavvies’. Ha, love it!
I get it. It dries every few weeks and sometimes ‘cracks’ when I yawn. I’ve only had it once or twice so bad that I could hear my own voice loudly …
I haven’t taken anything for it save drunk loads of herbal tea to encourage fluid balance.
Continuing the discussion from Fluid in eustacian tube:
I have fluid in my ears constantly for months and months at a time. Would you say this was normal for VM and it’s both ears for me. I worry that is MD instead. I’ve only been suffering for a year and so don’t have any hearing loss so was told wasn’t MD however that disease is progressive so I wouldn’t know as of yet would I?
Jessyka if you want my frank but unpopular opinion many MAV sufferers have some kind of ear trouble. It’s kind of obvious when you look at member poll results. Let’s face it, does that look like a normal population of hearing loss to you? It doesn’t seem to be Menieres though because it doesn’t usually involve low frequency hearing loss. It could well be benign.
I have mild HF hearing loss and lost a further 10db during the progression of this condition in the first year but then it stopped getting worse. I totally freaked out at the time but when it stopped getting worse I calmed down. Then I also realised of course that it might be reversible, eg to do with pressure. So I further calmed down. I haven’t had it checked for a year so who knows it might have improved again! Spontaneous recovery of hearing is well documented. The main issue with ears is they take a long time to do so.
I believe there’s more to come on what VM/MAV actually is and it may be more than one entity but has been clumped together. eg I have also had a diagnosis of Secondary Hydrops in addition to other doctors who’ve said I have MAV. I have had 4 opinions. I wonder how many sufferers go beyond one specialist? Symptoms for both conditions are the same. And guess what? Treatment for both conditions is the same (including the diet!) Makes you think …
Remember that I’m a bit of a success story (no more dizziness or imbalance) so even less reason to be worried. The amount of fluid my ears leak has dropped to almost nothing now too. (that took nearly 3.5 years though!) But clear signs of reversible improvement! So whatever this thing is, seems to improve!
PS Here’s another relevant poll … if that doesn’t implicate the senses in a large number of cases, and specifically the ear, I don’t know what does! (without the ear, the brain cannot sense orientation like that, obviously!)
Thank you for your reply you always make me feel a lot more at ease. Did you actually have fluid come out of your ear? I didn’t actually get this crackling bunged up feeling in my ears until about a month after my initial dizziness. Then it went when I was pregnant and is back now again. I have tinnitus to but it’s hardly there if you get me. I suffer in both my ears though and not a lot of people on here tend to suffer with both. I also have only been to two ent and was only a year apart so surely if it was anything sinister there wouldn’t be able to tell in that frame as surely hearing loss for minieres wouldn’t come on that quickly?
Correct, hearing loss for menieres comes on very slowly, but apparently you do get attacks where you go deaf for many hours and then your hearing comes back - ever get attacks like that?
I get the fluid in my middle ear presumably and that presumably flows down into the Eustachian tube which of course leads into the throat (funny that, it’s almost as if evolution made it that way ).
Yes, I get this crackling thing every so often when my leak has dried and a kind of squishy feeling if I massage the upper back of my neck (where the tube is).
So I know it’s there - plus I used to actually hear the glug-glug sound at one point … now its more like a bubble-bubble occasionally.
So I’m convinced there is an ear problem.
Thing is what is it? Well I don’t think it’s Menieres - with menieres you go completely deaf during attacks - that’s never happened to me (though I have had times when I’ve had increased tinnitus.
What I do think is that doctors can’t agree what it is! One oto-neuro called it an ‘aberation’. My most recent doctor calls it a symptom of Secondary Hydrops … and as I’ve said … that has symptoms identical to MAV.
I’ve settled on ‘ear trouble’ and I believe it’s that that’s given me dizziness and migraines.
PS I get it very occasionally in my ‘good ear’. I think there must be some global ear pressure regulation thing going on.
I’ve just literally been to my doctor and they have said I’ve ETD. That I will always suffer with this and it can cause crystals which can cause vertigo. I’ve never had attacks like that but my doctor said it can be a slow process with MD so I might not know right now, but she seemed to think I was ok and that my ears where just ETD.
They seem to call the same thing multiple names.
I think they can rule out ETD with a pressure test. Have you had that?
Some say ETD can cause over production of perilymph in the inner ear which then leaks. Who to believe? The anatomy and processes around it are very complex.
No what is that? She said she can see the fluid in both my ears and the scaring from my ear drum bursting in the right one x
Your ear drum bursting?! Blimey. Do you remember when that happened? You seem to have had some kind of ear trauma. I’m mean: there’s your answer right there. I’m sure it will settle down though, especially since that’s healed.
Yes it burst about a month after I woke up with dizziness which is weird to me. Why would it happen after I was dizzy… unless it was lying in wait haha.
That’s a very odd thing indeed I agree. I have heard stories of the trauma of childbirth affecting ears. In any case be positive. I’m sure it’s going to get better just takes its time.
Unless all this started of as labs as I was told then then came the infection and burst ear drum then the VM… and now the ETD. I was wondering do you know what MD usually starts off like? I understand it will be diff for people but if I google anymore I’ll send myself insane
It’s extremely rare. The burst ear drum seems to be the biggest evidence of something having gone on which is nothing like Menieres. :).
If you had a burst ear drum I’m sure the pressure could also have temporarily upset the inner ear too. Sounds like you just have to be patient.
And don’t worry too much
I hope it does get better, she told me I had to do exercises to release the fluid but once I’ve done it it comes straight back. And surely this isn’t just VM related as I haven’t read of anyone else having this constantly.
There are actually a few on here who have ear fluid trouble and ‘fullness’ (same thing?).
The fluid has to be coming from somewhere …my guess is inner ear … which would indicate possibly a pressure issue in the inner ear … you could always get another opinion on that?
However that seems to decrease with time in any case? Has for me and that’s been exactly my problem.
Descriptions vary. I’d say ear fullness feels like tightness/swelling. I dont have problem with fluid.
Just to add though: I do relate to your anxiety about Menieres. I had it too.
But in the course of time I realised that despite probably having an inner ear problem, it was not Menieres. You can have inner ear trouble that is not degenerative. In fact I believe it mainly comes down to fluid imbalance, call it ‘swelling’ if you like, like a bruise, but not damage, which makes it easier to swallow. For me the clues included the ever decreasing hearing distortion I’d get on the tube here in London. Initially I’d get terrible vibrations in my ear when the train rumbled along. Over a long time these diminished and disappeared. That to me illustrated it may just be a simple pressure issue that was simply dropping in intensity over time.
Also, I find doctors are in a catch 22 situation: they either tell it to you straight (they suspect an inner ear problem), or they skirt around the issue so as not to trigger any health anxiety (which is a very real risk). On the one hand this concern is nice because they have your general quality of life at the forefront of their concerns, but at the same time I find it a bit patronising, especially when you’ve actually opened several journals and textbooks and have learnt a lot about the anatomy.
I always suspected my first neuro-oto was holding back. My fourth doctor gave it to me straight. By that time I’d done a lot more of my own research, had experienced my symptoms generally improve for over 2 years by then, noticing that I had not gone deaf, and I could deal with it.
This for me, in part, explains the probably excessive popularity of MAV as a diagnosis as the dizziness can easily be dismissed as ‘merely’ a migraine issue which is much more approachable and less threatening than details about a very delicate sense which is always less palatable, more sinister and some simply don’t want to think about it. Unfortunately it doesn’t begin to explain any of the ear issues properly and therein lies its flaw.
Long story short, I very much doubt you have Menieres.
Hope that helps.
I have both Meniere’s (which eventually led to single sided deafness) and vestibular migraines without headaches. The meniere’s came first, hung around for awhile (without much sustained heading loss) and then reappeared with a vengeance. I was fortunate to have an astute specialist who was able to distinguish my two very separate issues but it took a bit to figure it out. The only migraine symptom I have is the vertigo. I take different types of meds for each condition and know what my triggers are for both. Currently, I am in the midst of a medication change but remain for the most part, symptom free.