Iāve 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 Iāve been a little āoffā this summer?
I get it. It dries every few weeks and sometimes ācracksā when I yawn. Iāve only had it once or twice so bad that I could hear my own voice loudly ā¦
I havenāt taken anything for it save drunk loads of herbal tea to encourage fluid balance.
I have fluid in my ears constantly for months and months at a time. Would you say this was normal for VM and itās both ears for me. I worry that is MD instead. Iāve only been suffering for a year and so donāt have any hearing loss so was told wasnāt MD however that disease is progressive so I wouldnāt know as of yet would I?
Jessyka if you want my frank but unpopular opinion many MAV sufferers have some kind of ear trouble. Itās kind of obvious when you look at member poll results. Letās face it, does that look like a normal population of hearing loss to you? It doesnāt seem to be Menieres though because it doesnāt 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 havenāt 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 thereās 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 whoāve 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 ā¦
Remember that Iām 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 Hereās another relevant poll ā¦ if that doesnāt implicate the senses in a large number of cases, and specifically the ear, I donāt 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 didnāt 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 itās 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 wouldnāt be able to tell in that frame as surely hearing loss for minieres wouldnāt 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, itās 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 itās there - plus I used to actually hear the glug-glug sound at one point ā¦ now its more like a bubble-bubble occasionally.
So Iām convinced there is an ear problem.
Thing is what is it? Well I donāt think itās Menieres - with menieres you go completely deaf during attacks - thatās never happened to me (though I have had times when Iāve had increased tinnitus.
What I do think is that doctors canāt agree what it is! One oto-neuro called it an āaberationā. My most recent doctor calls it a symptom of Secondary Hydrops ā¦ and as Iāve said ā¦ that has symptoms identical to MAV.
Iāve settled on āear troubleā and I believe itās that thatās given me dizziness and migraines.
PS I get it very occasionally in my āgood earā. I think there must be some global ear pressure regulation thing going on.
Iāve just literally been to my doctor and they have said Iāve ETD. That I will always suffer with this and it can cause crystals which can cause vertigo. Iāve 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.
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.
Your ear drum bursting?! Blimey. Do you remember when that happened? You seem to have had some kind of ear trauma. Iām mean: thereās your answer right there. Iām sure it will settle down though, especially since thatās 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 dizzyā¦ unless it was lying in wait haha.
Thatās a very odd thing indeed I agree. I have heard stories of the trauma of childbirth affecting ears. In any case be positive. Iām sure itās 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 VMā¦ 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 Iāll send myself insane
I hope it does get better, she told me I had to do exercises to release the fluid but once Iāve done it it comes straight back. And surely this isnāt just VM related as I havenāt read of anyone else having this constantly.
There are actually a few on here who have ear fluid trouble and āfullnessā (same thing?).
The fluid has to be coming from somewhere ā¦my guess is inner ear ā¦ which would indicate possibly a pressure issue in the inner ear ā¦ you could always get another opinion on that?
However that seems to decrease with time in any case? Has for me and thatās been exactly my problem.
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 āswellingā 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 Iād get on the tube here in London. Initially Iād 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 youāve 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 Iād 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 āmerelyā 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 donāt want to think about it. Unfortunately it doesnāt begin to explain any of the ear issues properly and therein lies its flaw.
Long story short, I very much doubt you have Menieres.
I have both Meniereās (which eventually led to single sided deafness) and vestibular migraines without headaches. The meniereās 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.