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Not much on Meniere's

There certainly doesn’t seem to be much on the Meniere’s topics posted here.

I have recently started coming here more often. The organization I belong to now is, probably, going into shutdown mode next month around this time. there are a couple of other organizations being started to try to supplement or replace the MM.org I now belong to.

This site has so much information on it. It’s mostly about MAV which is just as dibilitating as Meniere’s so I’m not trying to take anything away from that.

I have Autoimmune Inner Ear Disease with bilateral Meniere’s. It’s difficult enough to find someone with AIED as it is pretty rare amoung MM and MAV patients. On the Meniere’s tip, I understand the true vertigo that people go through but have never experienced it.

My symptoms are tinnitus, fullness, dizziness, hearing loss and ‘brain fog’. I know this fits so many symptoms of just about everything on this board but I can’t help thinking that the Medical profession is ignoring the facts that there are different and varing degrees of these symptoms, including vertigo. I mean by saying that, they are lumping all the symptoms into one pot and coming up with the same type of answers - it’s the same thing.

Ok, stay with me here, I know it might be boring. If you look at cancer, there are many different types of cancer. Depending on what your symptoms are and where it is, depends on the type of treatment you get. I know this is a stretch but I’m going to extremes to try to proove a small point. Our issues are generally in our ears. But the symptoms are as different for us as it is for people who have cancer. Some of us have vertigo and get relief once an attack comes and goes. Some of get no relief but become exhausted and spend the days in bed that the vertigo people do without the horrid effects that true vertigo brings. Some of have tinnitus that is livable with. Others have tinnitus that is debilitating to the point of becoming agoraphobic or horribly anxious about going out into the world of noise.

You see my drift here? Does medical science see it this way and I’m just completely unaware of it (very possible) or because it is not, in itself, life threatening so the money can be better spent elsewhere?

I hope, with the spread of sites coming out now, the medical community will see that there are more of us out here suffering than they thought and, perhaps, become more serious about studying this disease.

Any thoughts? Please?

Hi Holly,

I appreciate you contributing to this section. I would LOVE for it to become more mainstream on mvertigo because clearly migraine and MM intersect quite heavily whether one is the root cause of the other or they are just comorbid conditions. Whatever the answer is, more discussion and sleuthing in this area is needed. If you have any suggestions as to how this might work better hear, I’m all ears.

Scott :smiley:

hey holly,

it’s wileyriley from mm.org. i think you make several good points in your post, especially about the medical professionals lumping our symptoms together and coming up with the same answers/treatments all the time instead of really looking more deeply into our individualized problems. that’s what i’ve liked about mm.org and this forum, the patients dig and dig and and try to separate things out and bounce ideas off of each other to try to come up with answers.

i also would like to see this meniere’s section revive itself as i think mm and mav coincide greatly. i believe so many mm’ers are misdiagnosed and i think many newbies could be spared the meniere’s diagnosis hell (not that a mav diagnosis is easier) by learning about mav from the beginning. also for those of us who do fall into that 0.2% and have meniere’s and then win the lottery again and have mav, it’s great to have this resource all in one.

also, i like this forum because of all the research that has obviously been put into both conditions. that’s my preference, to see various medical or other scientific articles about meniere’s or mav and related research.

as an added bonus, i’ve also found the people here to be very friendly too! :smiley:

i do hope that mm.org stays around. lots of valuable info there that shouldn’t be lost. all those years of people’s experiences with various treatments to be gone forever would really be sad. you can’t replace that.