Meniere's Disease

@glynis that must be horrible for you having an increase in your tinnitus when it is already bad. What results did your balance tests come out as? Which tests did you have done was it just a caloric where they use water/air? Did you have vertigo from it? They say a normal ear should cause you to feel vertigo during the test. I am seeing audiology next month and seeing a top neurotologist consultant next month hopefully I get to see him and not just one of his team. Although I am not sure it makes any difference who I see when nothing can be done.x

 

A question for anyone....how do you cope when your having a rough time with tinnitus and dizziness and need to go out to collect your child from school? My partner has been out of work but is returning tommorow just typical that I am in a bad way at the moment. I am able to get up and walk but I feel unsteady and loud tinnitus and now I am nervous about having to do the nursery run tomorrow to take and collect my daughter. It is only a 5min walk away but it scares me being alone and being alone with my child when I feel so run down. I keep thinking what if I get really dizzy and being out in public its not the kind of attention you want to draw to yourself. I really do not know what to do. Obviously Its not vertigo so I am still able to walk but its still scary doing something you don't feel comfortable doing. How do any of you cope with having children and doing school runs?x

 

@Mand b

My kids are 7 weeks and almost 2 1/2, so I don't have to take them anywhere. They are home with me all day. I am terrified. Idk how I will take care of them. I need some suggestions too.

 

@Jkph75 it must be really hard having two young children to look after when you feel so bad in yourself because all you want to do is rest until at least 1 symptom eases up. I think a lot of people have episodes so they still get to do normal things in between with milder symptoms maybe. But then I have no idea how others cope whos symptoms are just on going and no limit for relief. I went 2 years with no tinnitus and just dizziness on and off so I still got to do the nursery run because It wasn't all of the time but now its come on bad with tinnitus and dizziness I do not know what to do. I want to stay home but I have to go out and walk alone and then be at home all day alone with my daughter. I hope some other parents can answer this question and how they cope. Its hard because my family either live far away to help or they work during the day.x

 

@Mand b

Hi No I haven't had balance testing done, I've always had bad balance in the deaf ear but coped as I was used to it however in the past few years as I was approaching 50 it was getting worse pretty quickly, now with the MD affecting my other ear my balance is awful, most daily activities are very difficult but night time is doubly bad.
To be honest I'm not sure if I would accept implant I've read it's pretty 50/50 that it works.
I'm not refined to the house during the daytime although I don't go out alone if I'm venturing out to far, I'm pretty much refined to the house during darkness due to losing so much of my balance in darkened conditions I'm extra wobbly and sometimes find just walking unassisted a real chore, so in the end I don't attempt it at all. My house has to have plenty of nightlights on just incase I get up during the night. My Occupational health said that you need to see yourself as actually being disabled under such circumstances. I read once that just being an SSD sufferer "single sided deafness" in America and Canada is classed as a disability.
I put in for balance therapy waited 10 weeks for my appointment at ENT when I got there saw the specialist and he said waste of time it won't help people with menieres it's only good for people with BPPV or Labrinthitis, what a waste of time that was lol.

 

Hi all
I'm new to this site.
I've had tinnitus for many years and learned to live with it however I recently have developed symptoms typical of meniers disease and currently undergoing tests for diagnosis.
The fullness in my left era appears to come and go however recently it's come and decided to stay!!
I've had it for about three to four weeks now the longest period so far .
I wondered if anyone can advise me on any treatment I can use to relieve this?
Additionally I'm due to fly in a month's time has anyone ever flown with a full era? If so was it ok? Painful? Triggered vertigo or made symptoms worse?
My doctor didn't appear to want to commit himself to an answer one way or another!
I look forward to your views and experiences.
Stellamaris

 

@Darren13 my audiology and ENT consultant told me someone like ourselves would be the perfect candidate because we have hearing experience so to speak so it makes it easier for the brain to adapt to using an implant. My audiology also said those who were born deaf can still have the same results but may just take longer for them. She said she has one patient who has one in both ears and she gets along fine she has normal conversations and you would never know she wears implants(hair disguises it). Yes my mom when I was little got disability allowance for me for a couple of years so i guess it can be classed as a disability although I have never classed myself as this I lived a normal life with no restrictions until now. Even now I do not want to accept I could be classed as disabled and even if I was I would never be the type of person to tell everyone, I just like to feel normal. See I find I am okay in the dark yes I can feel a bit wobbly but I can walk and not fall over. Its just a shame that this condition can have limited medical treatment. Its mad because there is worse out there or just other non curable conditions but people still live and do not suffer daily for eg my sister has lupus and other health problems but she still lives normally she does not suffer or feel unwell. Its hard because so many people suffer differently with this you don't know how its going to affect you. I have never had balance problems although as a child I complained of dizziness which lasted a year plus but it went after that and nothing more for years until this point. I would love if that could happen again.

 

So I done the first nursery run didn't like it very much it felt as if I was walking on an escalator and my feet felt heavy. I rushed to get home but I have to do it again later on to pick my daughter up. I looked at all the other parents and I couldn't help but think I wish I was in their shoes looking care free with out any health worries. I know you can't tell by looking at some one but whats the chances they have something thats similar to this in terms of suffering :-(

 

I know what you mean Mand about not telling anyone. I hardly told anyone only very close people to me that I was hard of hearing and just muddled through even though most of the time I couldn't hear a lot of what they were saying. It wasn't until I was about 48 that things came to a head and told more unbearable that through help I was able to begin to tell people of my predicament. I was always told at a young age by a social worker never to highlight my hearing problem and try and act as though it didn't exist so not to be any different from the other kids my age, I was about 10/11 at the time. So I did that all those years with great difficultly at time as it was frustrating me on occasions. As you know certain environments are very challenging especially noisy places when your hard of hearing. Now with MD it's all the more challenging and even more frustrating but such is life I suppose, I do what I can to try and act as best I can to the situation.

 

@Mand b

I was just reading your story. I was born deaf in one ear too. I just gave birth 7 weeks ago and started developing symptoms 2 weeks ago. I don't have an official diagnosis yet but it is only a matter of time. In these two weeks I went from having very load tinnitus (which has not stopped) to ear pressure, to dizziness (vertigo). I feel awful every day. Do you know if things will be worse for us since we were born deaf? Is it possible for this to stop? Or will this just keep getting worse and worse?

 

There's a great deal of information about dizziness and vertigo at http://www.dizziness-and-balance.com/ Perhaps something there could be helpful.

In particular, there is a link for patients http://www.dizziness-and-balance.com/disorders/index.html Toward the bottom, there is information about treatment for vertigo.

If you are anywhere near Chicago, you could look into their practice: https://dizzy-doc.com/index.php

 

@Jkph75 I can't believe that your in the same boat as me I thought I was alone with being deaf in one ear and tinnitus and dizziness issues. I have no idea thats what scares me and fearing it will get worse. Mine is currenly very loud to I struggle to hear over it. Do you struggle to hear over yours? All my symptoms started from pregnancy and had on and off problems since then (2011). I did have mild tinnitus on and off before then but nothing that affected me. I did go 2 years though with no tinnitus from 2013-2015 it just stopped one day I don't know why but I still had dizziness sometimes but more frequent now. Have you had actual vertigo ie room spins? I have had pressure in my deaf ear to if anything I feel that is the issue because if I plug that ear I feel dizzy but not with my good ear. Tinnitus is more of a head sound for me. I never imagined growing up I would have any problems with my ears obviously I knew age related hearing loss like anyone but this is something else. I think this is always going to be something I suffer with now even if its in episodes. I think 2nd option will say Menieres to but at the moment I am just lost and confused. Fed up with it all if I am honest x

 

@Jkph75 I mean 2nd opinion (due to see another ear specialist next month)

 

@Jkph75 also just to add who knows if this will get worse or not if you had known how much I suffered back in 2011/2012 I thought that was me suffering with tinnitus like that forever it was so bad, so loud, sensitive hearing, reduced hearing, sensation of popping at the end of someone talking on the tv. I was an anxious wreck but somehow I went 2 years with no issue with Tinnitus at all I could not hear it. So anything is possible. I do believe I would of went longer its pregnancy that triggered it off again and its been on and off since. Its amazing how much you cope better when tinnitus isn't around obviously feeling dizzy is not nice but a lot more managable on its own. Its tinnitus that makes this so much harder.

 

@Mand b

No you are not alone. I feel very alone too. No one seems to understand. I look fine but feel like I am dying. I don't know how much longer I will be able to care for my children. I am so scared. The tinnitus has been here for a couple weeks now. I can hear over it still, sometimes it is louder than others. The room isn't literally spinning but sometimes I have to really concentrate so that it doesn't. I feel best in the morning but it doesn't take long for that to go away and I don't even feel good in the morning. I can hardly get out of bed, yet I have an infant and toddler. I fear I may collapse one day. My husband doesn't want to talk about me being debilitated but what am I supposed to do if he is at work and the room starts spinning. If things keep going at this rate I will need full time care in a matter of months. Idk how this works. Could I just wake up one day and have this be gone once hearing loss officially sets in?

Have you tried Prednisone yet? I got a prescription from my OB today since she is the only Dr who will listen to me. I hope it helps some. No one else would give it to me since my hearing is still in the normal range. Did you start losing hearing yet? Do you get any good days? I haven't had one since this started. I am afraid I may never have a good day again.

 

@Mand b

When did you give birth? My daughter was born 1/21/16.

 

Like the two of you I've been deaf in one ear since probable birth or very early age.
I read completely deaf people say we're lucky as we have half our hearing, but being deaf in one ear brings all sorts of unwanted frustrated problems that they don't understand about. And now MD in my what I call good ear, well was a good one as it now has MD. Since my main problems stated all the usual stuff that comes with MD. vertigo dizziness. Tinnitus. Fullness of ear. Bad balance dodgy eyes, visual vertigo. Hyperacusis etc etc, I haven't had a good day since mid August last year. My days vary from one day to the next, I get two or three not bad days on the trot followed by a couple of not great ones then an odd day very bad. Can only hope things pick up soon but I've been saying that for past 7 months.

 

God I am frightened. Today has actually not been too bad besides the tinnitus so far. I am at a family birthday party and not very dizzy at all. The nausea comes and goes a little today. I have been eating less than 1000 mg of salt for the past 2 1/2 days. Don't know if it helps or its a fluke or if the Prednisone can work that fast. I am praying that some miracle occurs and this just goes away. Is that possible? What help can I get with my kids if I become disabled? I am most scared for them.

 

I'm sure it won't get so bad that it will disable you completely, it does eventually get to a point where your body will get used to the problems and you begin to cope better. But that point differs for us all sone will take longer and you like me could be more vulnerable as we started with the deaf ears and war problems to begin with. As I say Ive struggling for 7 months now but the first few months were the worst. I'm more at a point of dealing with the damage its left so far. Then trying to get myself back to some normality to be able to return to work in six weeks time but that brings more problems due to having my driving licence revoked. Happy days lol.

 

That's interesting. Why are the first few months the worst? I don't understand this disease at all. I thought it was progressive and we would ultimately end up being deaf and unable to walk. Is there a way to prevent this? I don't even feel like mine is that bad yet when I read what others are going through. I thought I would eventually be that bad too. If I could have some control over this I would feel a lot better.

I am convinced that mine was brought on by pregnancy. Looking back, I had symptoms then. It wasn't until I woke up with the blaring tinnitus that I realized that something was very wrong. Maybe it got worse with breastfeeding. Makes me wonder what emill happen when I stop.

I have noticed that I am affected by salt. My worst days were after I decided it didn't matter and just ate what I wanted. Boy, staying below 1000 mg is ridiculously hard. I never realized how much salt is in food. Not having sugar sucks too. I went to a party and just ate fruit b/c there was nothing else there that I could eat. Everyone thinks I am crazy. "You can eat that.". No really I can't. If you Sat for hours feeling like things would start spinning at any minute and didn't feel safe walking you might not want that pizza and cake. On the plus side, this pregnancy weight is just flying right off me

 

I'm only guessing that seeing as it's been 7 long months with all the symptoms of MD, that my body's starting to get used to how to cope with it more after all I've been off work all that time and been able to rest up as much as possible, I really don't know how I'm yet going to cope with going back to work. Especially seeing as my once 20 minute drive to work will now take an hour and a half 2 buses treck. I will find out in 6 weeks time if I'm eventually able to return or allowed to return.
I'm finding the Betahistine tablets have cut the amount of virtigo attacks down and the length and severity of them. But as I say my balance is way off and at times very difficult to cope with.

 

@Darren13

What have you tried so far? From what I have read online, it seems those who are the most effective in dealing with this disease are also the most persistent in trying to find remedies. For me, the fear that I will completely decompensate has been the worst part. I was just concentrating on waiting to feel better or have it magically go away. Who knows, maybe it will. In the meantime, I'm going to concentrate on trying to figure out how to feel the best I can. I'm not going down without a fight!

 

As always, you need a diagnosis.

Here is, however, a famous case of MD and how it was resolved using innovative approaches:

Dana White talks about Menieres Disease...

Dana White talks about menieres disease and...

The procedure was covered in detail by a (prior) notable prior member of this board:

www.linkedin.com/in/chris-heddon-47792741

See this web-link:

www.tinnitustalk.com/threads/why-do-we-accept-that-hl-and-tinnitus-are-the-3rd-most-prevalent-chronic-diseases-in-the-world.2486/#post-22244

On a side note, Otonomy is in phase-III with their OTO-104 compound for MD. I have no opinion on the efficacy of that trial and, as such, I think the approach lacks novelty as all its does is to ensure delivery of the active substance (steroids) to the inner ear via a single puncture to the tympanic membrane.

 

Ok things are getting scarier. I just took a nap and slept on the side with tinnitus on a pillow. When I woke up half of my face feels numb and my vision is blurry in that eye. I don't remember this being a part of Meniere's. Or is it?

 

In all honesty I'm not too bad first thing in the mornings after a good 7 hour sleep, but it's totally the opposite if I drop off for a cat nap, I'm all over the place for a good hour or so. So I avoid cat naps at all costs if possible.

 

@Jkph75 my daughter was born in 2012 but was having tinnitus and hearing issues during the pregnancy in 2011. No i have not tried that medication. What does it do? Well I have not actually lost hearing (touch wood) its always low when my tinnitus is blaring because I can't hear over it. But when I have a hearing test and tinnitus is gone where I can't hear it I hear fine. I am still unsure if its a genuine loss or not when this happens.

 

The past few days tinnitus has been lower and what does that mean? My hearing is better hmm. But today its more noticable again. I feel nervous because I have been getting a sensation which scares me. When ever I am standing or sitting (not as bad sitting) I feel like I'm being pulled down, back, weighted, tilted even though everything visually looks fine. It almost feels like my sense of gravity is off like I am walking up a hill or that feeling you get when you have just came out a swimming pool that weighed down feeling. What could this be? I have only ever had this before last year after coming out a lift which lasted seconds then went. But past few days its been all day every day. Should I be rushing to the doctors to get this checked out? It is making me feel anxious. I keep feeling like I am walking to the side or I am going to but obviously don't its like my perception of it all is off.

 

A couple of questions if anyone can answer...... how long can someone go into remission and by this does it mean having no symptoms? Would this remission period still continue to make hearing loss progress or would it stop any damage in that period? I am just confused as I have had these symptoms now for 5 years roughly so wouldn't hearing loss be at a constant reduced rate by now and not fluctuating? Also does hearing loss means Menieres or does it have to follow a certain pattern? Mine is only ever low when tinnitus is loud which can last days until tinnitus settles. So how do i know if this is a genuine hearing loss that returns to normal after tinnitus settles? How is possible that these symptoms still continue 5 years on and the same progression except for having 2 years of tinnitus relief

 

Nice videos, seems like a down to earth guy.

 

@Mand b

Prednisone is a steroid. It reduces inflammation and helps with autoimmune related conditions. You can't take it very long so I don't know what would be next for me. The tinnitus is still there but the dizziness has gotten better. My problem is that i am hardly sleeping due to having 2 very little ones. My body isn't capable of doing this anymore. You might have migraine associated vertigo. You can read up on it. Hearing loss isn't progressive with that. You can read up on it and see if it fits you. Did you say that you recently had a miscarriage? I read that hormone fluctuations affect Meniere's. I am convinced that is what is setting off my problems, along with the huge change in fluid levels from pregnancy, stress and lack of sleep. I read that hormones can play a role in Meniere's too. I have had lots of problems with hormones. It took me 6 years to finally have my son. I've had 4 miscarriages. I think it's all related somehow. What have you tried so far?