Living with Meneire's for my known life. Noticed some things different than other people.

Ears, nose and throat
1

I am a 22 year old male, non-drinker, and I have experienced symptoms of Meniere's disease, unilaterally in my left ear, since very early childhood. My current situation is thought to have been due to complications involving being premature and developing an unusually high ear canal and undeveloped inner ear, along with labyrinthitis, multiple ear infections and perforated ear drums. Deafness only affects my left ear.

I experience only high pitched tinnitus which I can influence the intensity of, unreliably, by focusing on it in a quiet room. From the cases I have read and been told of, many experience low pitched tinnitus.

It is also uncommon for me to experience tinnitus for longer than 10 seconds while in an area with casual background noise (such as a library or restaurant) although when in a silent room I have faint, high pitched tinnitus constantly. It is not a bother to me in such situations since it is the norm for me, however intense tinnitus can occur often with the session being around 3-5 minutes of highly distracting tinnitus.

Attacks of vertigo have developed recently, within the past 2 years, and occur sporadically but is influenced severely by stress (which also influences other related factors), long travel times on trains and transport (not necessarily public transport), and otherwise occurs arbitrarily. 

It has never had the intensity to knock me over or fall completely, or made me vomit though it does induce nausea. These are things which the sufferers of Meniere's I have communicated with claim is the most upfront problem for them. However it is not for me.

The most consistent and up-front symptom I suffer from on a daily basis is fullness of the ear and varying sensitivity to noise (despite my increasing deafness in the affected ear). 

The feeling of pressure in my left ear is influenced by stress and by noise intensity. The only mitigating factor is medication. The fullness of the ear causes discomfort and pain far more-so than any of the other symptoms and with a much greater frequency. The intensity of the ear fullness varies but is the only thing, thus far, that i can potentially describe as 'debilitating'. Others have noted my ear reddens when I am in a large amount of pain due to the pressure feeling in my ear.

My sensitivity to noise is again influenced by stress, with lower tolerance of noise occurring the more i am stressed. When the tolerance threshold is passed, i get a sharp pain akin to either the feeling of someone pinching the inside of my ear or a needle passing through. This is highly disturbing when it does occur and is often accompanied by high pitched tinnitus, though no vertigo or nausea. It, along with the fullness pain, causes me to physically cover my ear with something. Finally, it is very difficult to sleep with my affected ear exposed to the air due to pain and tinnitus.

Are these differences known to occur and does anyone else experience similar oddities with their own Meneire's?

2

Hi Clay. I've had menieres for nearly three years now. I have tinnitus constantly, although like you I am so used to it that it doesn't really cause me any problems. I usually suffer with the fullness feeling in my ear only during an attack. Attacks vary from a few hours to several days. Severe attacks are always accompanied by vomiting. At the moment I take Buccastem tablets for nausea, Diazepam tablets just during an attack and Betahistine and water tablet daily. Betahistine is quite good for vertigo and the fullness feeling as it numbs the inner ear slightly. Are you taking any medication at the minute? It doesn't stop attacks but certainly helps in severity. I sympathise with you as menieres is an awful illness

3

I sympathise with you. I have suffered for 17yrs but more severe over past 4 yrs. I am suffering badly thus week. Had all the symptoms.

My consultant inc my betahistine to 32mg 3xday and he also prescribed amitryptiline 20mg at night. I have only been on this dose 4 wks.

Its awful isn't it? My hearing has drastically reduced and I live with tinnitus.

I cannot work and have claimed PIP allowance.

I hope you get some answers.

This forum is great for support.

4

Hi Clay, I have just joined this website and have been a sufferer of Menieres for 10 years, if nothing else its hopefuly quite cathartic  to share with other like people my experience with  Menieres started with the extreme vertigo and sickness, vomiting until there was nothing left and then more, so scarry, attacks occured very infrequently, maybe more than a year apart, it took some time to get a diagnosis as my GP really didnt know as its too unusal, after an MRI various bloods and ECG the ENT specialist kind of agreed it was Menieres since then 2009 the attacks have been more frequent, no real pattern although, they did start to occur in batches of 3s before abating for 6 to 12 months. as everyone knows the attacks can so catch you out, a couple of years ago I was in the London office of a company I was introducing myself to as a consultant when the tell tale signs started, objects in the room starting to dart around and I was sick right across the boardroom table! legs gone they had to drive me back to my hotel with me vomiting every time the car made a turn or movement since then Ive been caught out a couple more times so about 12 months ago went onto Betahistine, no help whatsoever.recently we went on holliday to Turkey and had an attack on the first week the dizziness never really went whereas before if I went to bed for 8 to 12 hours I was fine if a little un steady, the next week another attack this occured when i woke up as the red button on the telly kept darting around and i was floored, the scarry thing was the unsteadyness on my feet lasted for 2 or 3 days and we were scared we wouldnt get on the flight home as the assumption by bystanders is you are drunk. Any how and most intestingly I had been complaning from the start of the holliday that the food was saturated in salt and I have now learned that salt could be a major factor for some of us My daugher who lives in Oz sent a couple of books over and I highly reccomend you obtain abd read a copy the title being " Meniere Man and the astronaut the self help book for Menieres Desease" you can get it on amazon, at the moment Im OK since our holliday a month ago and that was when I stoped the betahistine, although on return I went to my GP who just doubled the dose when i recited our woes in Turkey, as the guy in the book writes no one actually gets Menieres  until they have had an attack, the author and book have really helped me approach the desease more positivly so when he tells you Menieres is the 3rd most psycologically distressing illnes behind cancer and AIDS you kind of know your as alone as it makes you feel. anyone out there want to discuss or talk about this Im happy to just remember its dreadfull but its not going to kill you

 

5

I am on low dosages of Amitriptyline for the sharp and fullness pain, Cinnarizine for the vertigo and nausea, when required, and codeine for when the pain becomes severe. It is not orthodox though they have proven effective in mitigating the associated symptoms to an acceptable extent. Meniere's is really strange like that! How is your hearing affected by your symptoms?

6

I am on the same doseage amitriptyline as well and have been for a very long time now. Perhaps for 6 years or so. I have noticed when i forget to take them though, that attacks of pain in my one ear become much more freqent compared to when i do take them. 

To alleviave the symptoms of pain in the ear, i have found covering the ear with headphones that sit over the ears can help (earphones which are inserted into the ear are not recommended in my experience as they irriate the ear), or otherwise resting it on a pillow helps. If you have other methods that work keep to them, too. Listening to some calming and smooth background music can help a little, too.

Also, consider learning some sign language if you do not know any already. It will help with communication and give you the potential to communicate with a wider range of people. It has helped me a lot.

I hope you get better soon.

7

My hearing fluctuated quite a lot the first year I had Meniere's, but now it's stayed pretty much the same for the past few months. I would say I've lost 80% hearing in my right ear. Combined with the tinnitus it makes it hard sometimes to follow conversations especially in noisy atmospheres. I usually experience noise distortion (which can be painful) and fullness only during attacks. These tend to go again after the attacks quieten down 

8

Hi,

Thanks for reply. I am still suffering today with loss of balance...I too find that my symptoms are worse if I forget meds...my hearing is bad so I am thinking of learning sign language..do you know where I can do this?

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I reccomend getting a book (with pictures) to get you started with the sign language in your country. To progress, look for video guides on youtube. More than that, see if anything happens in your area with Deaf culture.

10

Hi,

I'm a fluent signer and I'm with Clay 100%. Learning to sign and connecting with a Deaf community will benefit you in myriad ways. I'm not sure where you are located but I'm in the states and have loads of American Sign Language resources for you.

If you are in England, the local sign language there is called BSL, or British Sign Language, so I would start by googling that as well as Deaf events in your area. If you google Deaf schools near you, they will likely have sign language classes, and sign language is also taught on many college campuses. The classes at the Deaf schools will probably be significantly cheaper than college classes. There are also many online sign language classes. I am an online ASL teacher myself. 

Best of luck to you!