Possible Case of Meniere's Disease
Posted , 11 users are following.
Hello folks,
Randi from across the pond here. My doctor brought up Meniere's Disease today and I'm hoping you might have some advice for me.
In 2011, I had severe vertigo accompanied by intense nausea and vomitting. The nausea was like a tsunami of nausea that came on suddenly like I was out at sea on a rocky boat. At the same time, I started to have ringing in my ears. When I hear the ringing, it is like all the sound in the room has been vacuumed out and everything is muffled except the high-pitched ringing. My doctor at the time found an excess of fluid in my ears and treated me with antihistimines. The vertigo and nausea/vomitting went away, but the tinnitus has stuck around to this day. Lately I am not only hearing the high-pitched ringing but also a whirring sound, like a machine.
In 2012, I started noticing problems with my hearing. Sometimes I can hear my laptop clearly from the other side of the apartment, and other times I can barely hear it when it is on my lap. I also have trouble hearing on my phone and frequently have to use headphones to hear on both of these devices. Lately a lot of people have been telling me I am talking very loudly but I can't tell at all that I am doing this, so I am wondering if my hearing is out at these times.
This year, the nausea and vertigo have come back, though less severe than in 2011, and the tinnitus persists, as well as the fluctuating hearing. I have taken two hearing tests that have both come back normal, as I expected them to, because I was hearing just fine those days. Today the ENT instructed me to call the hospital the next time my hearing goes out and tell them it is an emergency and get in for testing right away.
A couple things you should know about me are that I worked in a very loud bar for two years, and it has been suggested that is the cause of the fluctuating hearing and tinnitus; and I also suffer from migraines, which are also a vestibular disorder, and it has also been suggested that migraines are the root of all of these mysterious symptoms. I am kind of at a loss and would just like a definitive diagnosis so I can move forward.
My symptoms do not seem as severe as some of yours, so I am wondering if any of you have a mild form of the disease. I am also wondering if it gets worse over time and if it will definitely lead to permanent hearing loss. If so, is it total deafness, or more like hard-of-hearing? So, basically, what can I expect? And what can I do to manage it?
Any words of wisdom you have to share are much appreciated!
0 likes, 13 replies
sarah15069 slugs1620
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peter16657 slugs1620
Posted
slugs1620 peter16657
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Thanks so much for your reply. I will definitely look up that book! Everyone's symptoms and severity seem to be so different, I am kind of wondering if Meniere's Disease is a sort of catch-all diagnosis when there could actually be several things going on. It seems very poorly understood by the medical community. It is frustrating to me that there doesn't seem to be a definitive test that tells you yes or no this is what it is. I am on my third ENT now and finally someone is listening to me. The first two just dismissed me as soon as my hearing tests came back normal. I'm seeing a neurologist in two weeks as well, and hoping they might have some answers, too. Thanks again for your reply!
angela79369 slugs1620
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misskent angela79369
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Its very hard to tell people what to do as everyone is different!
No alcohol (although I did have a glass of wine at home xmas day). No caffeine inc no fizzy drinks and no extra salt on food.
I try to have a walk every day and stay on a healthy diet.
It is very hard for me to socialise in noisy places but I do my best...
slugs1620 angela79369
Posted
Thanks so much for your reply! I am definitely going to look up that guy on YouTube. Interesting about the alcohol and salt. When I first started getting those severe vertigo attacks in 2011 I was working in a bar and had a pretty unhealthy lifestyle. I drank a lot of alcohol and caffeine and ate a lot of processed foods as well as bar foods and takeout. Now my lifestyle is completely different. I quit the bar, make 95% of my meals from scratch using fresh ingredients, exercise regularly, only have one or two drinks a couple times a month, and only have one cup of caffeine first thing in the morning. I can't quit the caffeine entirely because it helps me manage my migraines. But anyway, once I changed my lifestyle, I stopped getting those violent vertigo attacks. I had a vertigo attack recently, but it was much less severe and I didn't throw up like I used to with vertigo. I don't think we have Stugeron or cinnarizine here in the states but I will definitely look into it. I've had a lot of nausea lately and was looking at those bands you put around your wrist. I think I'll try that next time I get a bout of nausea. Anyway your post was super helpful, so thanks!
peter16657 slugs1620
Posted
You have summend up the where things exceedingly well, its as if once all the more common deseases are ruled out, then MD is pinned on the rest of us, I read that along with Cancer and HIV MD is the most psycological damaging illness, yet there seems to be no real interest from the medical proffesion in tackling it, or even understanding it, its quite shocking especially when you read some of the comments on this forum, of people whose lives are ruined, obviously now youve joined its the same in the States, keep us informed how you get on
eb2412 slugs1620
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jacki999 slugs1620
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ludka slugs1620
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It tooks me more than two years to get one. The problem is
that soon as you found doctor who will give you diagnostic,
you will found someone who can help to stabilize and
slow down deasese. I steal need to do a lot of tests.
At least I have feeling now that I finally taken care by
professionals who really understand this deasese.
It is a long life time journey. I need to know where to sick help.
It seems bad now, but I now that it will be worse. .At least I will
know where am I and what to expect. ..
victoria86526 slugs1620
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The fact that you are now eating clean and no longer have exposure to the bar is huge. You might get lucky. You might just be able to manage your syptoms. Can we reverse the symptoms? That is the great question. I am finally starting to figure out what triggers an attack and for me it is very clealy exposure to loud music. Some others have said this. I flew back from London a couple days ago and wore headphone to watch a couple movies. Bang - woke up to a two-day episode. Bummer. Last month I was in a room full of singing actors and a 20-piece orchestra as their director for 6 hours: two weeks of episodes. After two years I am starting to make sense of the patterns. Write down your symptoms. Try to make sense of what is happening and when, go as low-salt as you can, try all the good advice people are suggesting - it's such a nice community and maybe, just maybe we'll stay in a very livable situation. Good luck!
Victoria
arkiciao slugs1620
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carol04816 slugs1620
Posted
Hello,
I have been told that I have Meniere,s and bppv. I have the weird symptoms of unsteadyness, tinnitus, and just occasional vertigo with vomiting. I also have hearing loss. I also had an MRI showing a vessel loop. I only get the bad vertigo 2 to 3 times a year. I have had vestibular therapy twice (12 sessions each). No improvement. I work. I drive. Yet I'm still told I have Menier,s. Any thoughts?