Possible Case of Meniere's Disease

Ears, nose and throat
1

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!

2

Hi slugs I got my first vertigo attack in April all I did was cross over the road felt like I pull a muscle in leg but the time I got home I had vertigo still can't work out how doing somethink like that could start of had it bad for three days ended up in hospital with server anxiety. I think back over the last year and I did hav signs I must been getting it my vision played up one day I could focus properly for two hour, thought nothing of it again at the dentist sat up vision blurred again , at work months later I noticed things didn't look wright so went back to eye doctor to have eyes test and get new glasses , hi said nothing wrong with your vision .notice at home stumble and walk like I had been drinking and the back of my neck always hurts any this ringing In left eye has got louder I have bad vertigo to day don't always have I'm trying to work out how I'm going to live with this. Coz I had so many dreams to fulfil and I can't see how I'm going to manage to do them most days a sh.t

3

Hi Randi, welcome to the club no one wants to belong too, picking up the treads of these conversations on this forum what becomes clear is there are many ways Menieres hits you, I like you have the violent spinnig, darting eyes etc, others have less drastic symtoms but like Sarah these last for days even weeks, mine incapacitate me for several hours and then Im back to normal, period between attacks can be days to years, what is also clear is the medical profession do not yet understand the desease adn this is very frustrating, for instance they put people on anti histines but to some they are ineffective to others a help, my daughter sent me a book from amazon via Oz" Menieres Man and the Astronaut the self help book for Menieres Desease" this was so helpfull as the auther had been a sufferer and explained loads of things like why you get the tinnitus and ringing, how the build up of fluids causes the attacks and ways to help,any how good luck, keep in touch this is a great forum as your peer group dont get it, you get some comfort talking with other "club Members"

4

You could have Menieres, lot of what you describe is what many of us have had. On Youtube look up Ed Cheung, he has made several videos of really good advice, I found them really helpful. Have you been prescribed menieres drugs to help? Over here many of us are on Betahistine 3 times a day, plus a diuretic pill (water tablet to reduce salts in fluids). Many have had little surgical procedures to insert a tiny grommet in the ear, which gives the build up of pressure in the ear an outlet to be released, it's a tiny tube. At the same time a steroid cream/fluid Dextramethasone is put in to calm everything down. You can have further steroid injections as 'top ups' - takes 5 mins in surgery, as long as your grommet remains, they tend to fall out after a year (mine was fitted july 14 and ok so far). For me a no alcohol lifestyle is now in place plus I do not go anywhere noisy and avoid noisy people and clattering crockery! Also caffeine free coke/tea/coffee and never add salt to anything. I've heard anti sickness wrist bands can help. I found Stugeron, brand name of drug cinnarizine, buy at chemist no prescription really helps when you start to feel wobbly suck two of those, I believe the symptoms lessen a bit. Hope you get some good advice and help soon.

5

Hi Angela. I am still recovering from my attack on 14th December. I went back to see my GP for another sick note. I am still on 32mg betahistine 3xday and now 20mg amitryptiline at night. He said he did not want to change the treatment anymore just yet; see how it goes. I am due to see my Consultant again in March. I also have buccastem to put under my gum when needed.

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...

6

Hi Peter,

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!

7

Hi Angela,

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!

8

Hi Randi

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

 

9

Hi, I went to ENT clinic 2 days ago, my attacks first started back in 2008, with hearing loss, vertigo and humming in my right ear. Was getting attacks every couple of weeks, dizziness with vomiting and I always had to take myself off to bed and just sleep it off. It seemed to help but really felt washed out and groggy after but was fine by the following day. Over time they became less frequent but the hearing loss and noise in my ear to this day has stayed with me. Had an attack in November before that was 2 years ago. going back to my ENT appointment the Dr said the 3 symptoms, vertigo,hearing loss and noises in the ear(tinnitus)was how he came to the MD diagnosis. Iam being booked in for a MRI scan. This does take over your life though, I am constantly worried when I will get another attack but I usually get some sort of warning, the noise in my ear tends to increase and get hot flushes and sweating, I have even woke from a nights sleep and had an attack.

10

Hi to all, I'm a sufferer and a professional- completely debilitated by recent "attacks" without a clear diagnosis, however reading yr thread/discussion - it's pretty clear to me that I definitely have MD. sudden hearing loss in Rt ear 3yrs ago. Dizziness suddenly hitting making walking, talking and working impossible. Recently so bad that I lost coordination to the extent I was unable to wipe my nose. I've just turned 50yrs old and am extremely active, fit, don't drink or smoke- so this is a major shock to me. Im so relieved to find others in similar situation- although I'd prefer a cure. I'm currently taking betahistine 16mg, 3 times a day with cinnarizine 30mgs, 3 times a day. It's definitely worse when I have a viral illness and migraines are more frequent now than ever before.         Thank u for posting - Jacki 

11

Hi, my honest suggestion never give up on clear diagnostic.

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. ..

12

Hi Randi - reading this strand, you are getting some terrific advice. I want to address your shifting hearing situation as I have that as well. My problem, which started about 2 years ago (age 49) began when I was teaching a class full of very loud theatre kids and the sounds the class was making were SO LOUD but I couldn't hear the kid directly in front of me! What was happening? Over the two years and many episodes later I have been able to manage the syptoms reasonably well.  I also worked in noisy restaurants for many years, taught exercise classes with REALLY loud music and direct musicals with very loud orchestras, so all of this may have contributed. Having always eaten clean, the only thing I had to give up was ASPERTEME and when I did that, ALL symptoms came to a dead halt for nearly 4 glorious months. They are back, sadly, but I am able to get rid of them in a few days. So, my symptoms are full ears and pressure and surrounding noise is SO loud I can barely stay in the room. I can also hear my computer across the room but have trouble making out the person taking in front of me.  Here is what I do: 1. go immediately for a back and neck massage, 2. work out so I sweat, a lot, 3. drink diuretic tea, 4. use a homeopathic remedy that is a drop in the ear - an oil, 5. apply castor oil to my neck and shoulders, cover with a warm damp towel and sit with a heating pad up around my shoulders, neck and ears for a half hour. 

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

13

Hi Randi! It was in 2014 when I first experienced tinnitus. I went to ENT and the doctor referred me to an audiologist for a hearing test. And I had a moderate to low sensorineural hearing loss and was advised for a hearing aid. But I didn't get one because my hearing got back to normal. After few months, the tinnitus came back and this time, with vertigo and fullness of ear. The vertigo is usually preceded with tinnitus and pressure inside my left ear that was causing hearing loss during attacks. I couldn't report to work because it was disabling. I went back to ENT and was diagnosed with meniere's disease. I had CT-scan to rule out any disease. I was given betahistine 24mg twice a day for months and diuretics to take for 2 weeks and low-sodium diet. The symptoms of MD was gone for almost 4 months but came back again early this month. And the vertigo as well as the tinnitus and hearing loss has worsened this time! I tried the diuretics but of no help. The doctor told me to continue the betahistine and added 75mg cinnarizine. It is so distressing when the doctor told me that MD is chronic and has no cure yet. They can only give meds to lessen the severity of the attacks. I have a followup checkup after a month and still hopeful that things will get better. I have been absent from work for days and it worries me. It's good to have forums like this wherein I can talk to people who have the same case...

14

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?