Interesting video where this guy talks to an Australian parliament committee about his struggle with Meniere’s and criticises the available solutions for people with inner ear trouble and research funding:
https://www.youtube.com/watch?v=M0RmNMTUJcA
I can hardly believe his recovery claimed on his website:
this is interesting james
@Turnitaround. Thank you, James, for finding and sharing this. In honesty, I have not watched the Public hearing video, but did watch and read on his website.
His illustrated explanation is exactly what I was told (without illustration) back in the day. The first operation he mentioned, was, I think the one performed on me - I know it said ‘de-compression’ on my chart! Whatever it was - the hearing loss has not progressed in the past 40 years - but the other symptoms have remained, although dormant for months and years at a time.
So he is basically saying it is an auto immune problem, am I right!?? -Interesting…and no more fanciful than a lot of what I’ve heard/read. Pity his ‘protocol’ is so secret…???..but then again, I suppose that’s business!!! Like everyone - he needs /wants to make a buck, but without proof???
I haven’t looked at any of it yet as have just looked at your post. Mazzy if it is an autoimmune disease that fits the bill for me as I have several others, namely erosive arthritis, sjogrens disease, Raynaud’s, carpal tunnel syndrome and VM has rendered my digestive system barely functioning. So VM would just add to the list although it doesn’t explain why the immunosuppressants used for the others didn’t help the VM or the tinnitus which is still with me 24/7.
Revolving,
What type of immunosuppressants have you tried? Corticosteroids? I am a believer in the autoimmune secondary hydrops-Menieres connection. I too have various other disease processes that point autoimmune and endocrine.
I just had a consult with a physician who specializes in autoimmune disorders of the inner ear. She feels along with my long standing MAV , there could be also be an autoimmune component to my bilateral hydrops.
Further testing next week!
Nygal I am taking hydroxychloroquine which is a disease modifying antirheumatic. Would that hit the spot for other autoimmune areas as well do you think?
I know very little about the autoimmune problems or their corresponding meds…but maybe it bears looking into!! I’m guessing one size does’nt fit all and you have to have the correct med for the specific ailment??? I see some research in my future…
…unless some other kind and more knowledgeable person does it first. 
Yes, I know that drug as Plaquinel. It’s an old antimalarial drug. This drug was recommended to me by my rheumatologist to trial but was contraindicated in my case as I also have problems with my retina. So unfortunately can’t use it.
I know it’s used for rheumatoid arthritis and lupus and probably a host of other AI diseases.
I am a “problem patient” with all the other health issues that I have. Is the drug calming your vertigo and dizziness at all ?
Hi nygal. No, I have topiramate and nortriptyline for that! I also have verapamil for SVTs which also stops migraine headaches.
Good luck with your tests. I will be very interested to hear what they find if you don’t mind sharing.
Mazzy I think you are right sadly. I wonder though how many more of us there are with autoimmune diseases that at first look appear unrelated to VM? Perhaps that could be a new thread?
@Revolving… Yes, I sometimes wonder if some of the other ‘minor’, but irritating things I suffer from time to time are all related…but then I think (in my case!) that maybe it’s better to just let sleeping dogs lie! 
NYGAL as you know I’m sure there is some level of Hydrops in my MAV. I have a feeling it may be one d the things going on for most MAVers but it’s not as extreme as for Menieres patients.
Why do I think that? Because if we had Menieres we’d have low frequency hearing loss. Apparently the structure of the high frequency end of the cochlear is an order magnitude stronger than the bass end. That suggests that if the Hydrops were strong enough to permanently damage hearing it would damage the bass end first? The high frequency loss and tinnitus we have may be due to the pressure increase and may be entirely reversible were the pressure to drop …
I’m wondering if MAV starts with a physical breach of the round window, then repairs spontaneously but you unfortunately develop a reaction in higher inner ear pressure.
Turnitaround, I have a very mild low frequency as well as well high frequency loss so I’m not certain that the “level” or amount of hydrops plays a role in the amount of hearing loss. Let’s not forget tha amount of endolymphatic fluid is minute. Also, Menieres patients also have reversible and fluctuating hearing loss early in the disease . My ECOG testing was off the charts in both ears so in theory I should present quite differently. Yet, I present more like an MAV patient then Ménière’s.
I read a piece on VEDA’s website that stated “secondary endolymphatic hydrops” present constantly and milder than those with idiopathic Ménière’s.
Makes sense in my case. MAV and whatever autoimmune issues I’ve been dealing with over the past few decades now I develop hydrops.
Sort of makes sense.
I’m convinced in patients like myself that my vertiginous symptoms are secondary to another health issue. Hopefully, someone will figure this out although I’m not very optimistic after decades of dizziness and symptoms.
Mild low frequency loss is not typical of Menieres. They have severe or profound loss. Yours suggests to me an overall drop in the response of your ear - again could be dampening from pressure on physical parts of the ear - the window not vibrating enough, the stapes being damped … who knows, but not necessarily permanent if you can get the darn pressure to drop.
I think secondary hydrops can take an age to settle after its set off. Do please live in hope.
It is amazing no-one has yet worked this out, but the age of being able to visualise the more complex elements of the ear has arrived … but not sure how easy it will be to image ‘pressure’.
On the subject of controlling the pressure, have you ever come across this guys website? he talks about a drug to lower the hormone that creates the pressure:
Turnitaround,
Keep in mind , I’m showing bilateral abnormalities which makes me think systemic , vascular or autoimmune rather than physical isssue.
They can use MRI to visualize hydrops in the inner ear. My neurotologist has evaluated. a few Menieres patients with MRI. That in conjunction with ECOG testing should reliably confirm hydrops in patients.
I am going to read the above later today…running around at the moment. I checked out a few lines and seems very interesting. I have not heard of this Physician although I would be open to a Skype session evaluation.
What do you think of him?
Bilateral … yes understood.
I’m more interested in his ideas, I’m not sure I’d take the plunge for an actual consultation though. The concept he’s discussing, the use of a hormone suppressant to lower production of fluid … well that’s something I’d like to see analysed scientifically … with double blind tests. Promising, but lets see proper rigour!
Worth raising with your existing physicians perhaps?
james can we get better from hydrops? or is this permanent? I havnt done any research on this!
Apparently so but it’s very difficult to find case histories online. One Professor in London told me it can burn out. Let me know if you have any luck! Remember it’s not Menieres, it’s Secondary.
burn out? as in go away for good? what is worst case scenario if it doesn’t?
I think if the original cause no longer happens ( usually trauma of some kind or an illness) it should eventually settle down.
If we assume that MAV is the same illness (I’m more and more sure of it), going on other people’s experience on this board is a fair guide. I’m guessing it goes away very slowly with many relapses along the way. I note there are not many long time posters who visit or post on here so I’m assuming they mostly got better.